A Day In The Life of Tre`...and his crazy mom

Updates Are Coming

2009-11-20T23:17:00.005-05:00

This was on the It's A Small World Ride at Walt Disney in FL. Yeah, He doesn't like puppets, large stuffed animals, or people dressed as either.

Does this child look like he's in time out! LOL He's getting so big!

New Diagnoses...New Way of Living?

2009-04-11T13:00:00.001-04:00

What does this mean?

So we went for his feeding evaluation yesterday. He still has a delay with eating. I've tried as many tips and tricks that I can think of but he's still having problems with solids. Each time he gets a new therapy team, feeding is always their last priority. I had to take matters into my own hands to get him set up with a new therapist for feeding.

IIt wasn't a good day. As luck may have it he wasn't quit himself. He may be coming down with a cold and/ or he woke up early (4a - 5a)talking to his friends (Elmo, Ernie, etc.) He was extremely lethargic and not in the mood for much. I didn't want to push him but I needed them to see something and hear our concerns. One concern is chewing. He doesn't chew and I'm worried about him choking, not at the "correct texture" for his age, and not receiving the proper nutrition.

During his feeding he gagged a little. I think it was due to his coughing (he was congested). Needless to say they want him to get a modified swallow study to be safe. Not a problem. I would much rather get this done and over with so we can have an updated record.

After the evaluation the developmental pediatrician examined him. She determined that he showed signs of cerebral palsy. We were instructed to get a follow up with a specialist for a new care plan.

Those words sent a chill down my spine but despite this prognosis I have a sense of relief (at least for now....) It answers a lot of questions; mainly why he isn't walking. Sadly, though we have something else to add to his list...however cerebral palsy may counter a few. Humm?

While many questions are being answered it brings another: Why hasn't this been seen before? Need more resources....

M-I-C See You Real Soon

2009-03-17T16:12:00.001-04:00

So we are preparing for a family vacation to Florida during the first week of May. I am “worried” how he will react to the Disney characters. He doesn’t care for people dressed in costumes. He does like large stuffed animals for that matter. I wish I knew how to better prepare him for it.

I took him to Kmart this week. As soon as I seen the Mickey and Minnie Easter lawn decorations, I instantly took him closer. The first thing he said was, “I don’t want it!” Goodness this is going to be interesting.
I don’t want to ruin his vacation but I also want him to face his fears….

First Day of School

2009-03-16T15:00:00.000-04:00

This was us celebrating the night before at Applebee's.

Victor better known as Tre` is growing up. Sigh

He loved school and they loved him back! He already made a friend and I can only imagine how many are to come. I opted out for busing. I wanted to take him to and from school for a while first.

We are currently working on getting him a gait trainer (walker) however his new PT would like to see him in use for a while. I don't care for too much because he's been on a "trial" for the longest. In day care he used their gait trainer for 2+ hours...now she wants to see him for 20 minutes. Urgh! Patience!

I am sooo proud of him. Yes, it's only preschool but I love it all the same. Today preschool tomorrow middle school. Middle school!!!!!!!!

Yeah...soooo...umm yeah he's a clown. Don't ask me why he decided to put a diaper on his head.

School Daze

2009-03-07T18:30:00.000-05:00

So Stinka Man is at the appropriate age to start school. It took a lot of convincing me because I still saw him as my baby and not my toddler. It's time to cut the strings and watch this child of mine do what he does best, strive.

We were given a few options for various schools. All of them were schools for special needs. After touring and turning my nose up I realized that Tre` doesn't need to be in these schools. He's delayed, speech issues, has a G-Tube (only used for administering medication and overnight continuous feeds), and he can't walk. The main factor is that he's delayed and maybe speech.

My belief is that they read his report and thought they would be enlisting a train wreck. Not knowing how quickly he catches on to things, counting to 20, saying (singing part) of the alphabet, and MUCH more. If he's directed he will go. My theory is that he will get a one on one (a teachers aide for himself), therapy, and that's all I can think of. This all can be provided by a public school. If additional therapies are needed, it can be done.

Its a shame that I had to explain that my child is not to be afraid of. He's not the 25 wker he was three years ago. He's a toddler that just needs a little help getting by. In my heart of hearts I believe all these things will pass. If it takes a year to 40 years, I'll be right here.

We're Baaack!

2009-03-06T13:49:00.001-05:00

So Tre` is home and everything has subsided...kind of. The antibiotics does not agree with his stomach. Explosive. No warning, no scent. It's just clear one minute and flooded the next. He's able to resume all activities.

Before he was hospitalized his day care sent a review form. While I always gave them high marks they were skating on thin ice. I told them how I didn't appreciate a nurse making decisions that a parent should make (the leg brace.) I also told them my other issues. So the day he returned the day care called saying that his doctors note cannot be accepted due to the fact that the notes was signed by a nurse. Really? I never had that issue before. HUmm... Then his bus driver informed me that he could not return the next day because he had a fever of 101.5 and was given Tylenol to lower his temp. OK, I'm going to make it plain. Tre` does NOT get tempts. While he was hospitalized and the time leading up to it he NEVER sparked a temp. NEVER. How ironic. It's also ironic how he was so energetic and ready to eat when he got home. I don't think that he had a temperature and neither does his dad.

We are working frantically to get him out of there. Stay tuned for updates.

Doctor’s Note (Updated Again)

2009-03-03T07:38:00.001-05:00

Tre` has been doing so well that the team decided to discharge him. He was able to tolerate room air (no oxygen), weaned fluids, and being active.

So it appears that this started from the flu. When he coughed it gagged him and he would vomit. Being that he can’t walk or pull himself up quickly, the doctors suspect that he swallowed some of his vomit and that’s what cause the pneumonia.

There’s no question as to how he got sick. I could never understand why some people send their children to school (intentionally.) I understand wholeheartedly that these days and times are hard and people need to work. However, when you put your child and other children’s life in danger…you’re an idiot.

I’ve seen children at school coughing with a snotty nose. Seriously? Whenever I see children that appear to be sick, I inform the staff that he/ she will NOT interact with Victor (Tre`.)

Pennsylvania got a few feet of snow…from what I understand my area (in NJ) got 12+ inches…..

A Doctor's Note (Updated)

2009-03-01T21:53:00.002-05:00

So his blood culture came back and it shows that Tre` has also been battling the flu. I wanted to hit the floor when they told me this. I may have died on the spot if I didn't know that he was doing so much better.

Earlier on he had dry diapers. They kept increasing his fluids but he just didn't pass urine. The doctor thought he may have had a UTI and informed us that they may have to cath (catheter) him if he doesn't pass urine. I pleaded with mine to "tinkle." I even pleaded with the doctor to give him a little more time. I mean an examination was torturous! I had to give him a chance! Then, you know me, I prayed. As the nurse prepared his vitals before the doctor wrote the orders, Tre` gave us a WET diaper! He even peed through overnight. Tre` the man with all the surprises. He was on oxygen, IV fluids, and hadn't spoken a word in three days. He was just miserable! Last night he perked up out of nowhere! He smiled for me, sat up, and said, "I want eat." I LMAO Seriously, Tre`. You scare the mess out of us and all you can think about is food?!?! I feed him and he happily ate. Today nurses and respiratory tech said all he wanted to do was talk about Elmo and laugh. If that wasn't enough he no longer required oxygen.

The doctors were so pleased with his speedy recovery that they will consider releasing him as early as tomorrow. We have a storm brewing and I'd feel more comfortable with my family closer to home. He's no allowed to stay at the Ronald McDonald house during this trip because he's still battling the flu. There are children here with weak immune systems. So...if he IS discharged we have no where else to go but home. I just hope the snow has mercy on us and we can make a safe trip back home.

God has been so good to me!

Here's a pic (thumbnail) of him two days ago:

A Doctor's Note

2009-03-01T08:07:00.004-05:00

For the past week, Tre` has been ill. Generally, he can kick a cold pretty easy but this time was a bit different. Everyday he got sicker. Vic wanted him to see the doctor on Saturday but I knew he needed to be seen ASAP. Something just wasn't right. On Friday, we took him to his pediatrician. He expressed great concern (however he always does which is more aggravating than anything.) He believed that Tre should go over to the local ER, he would call CHOP, and have an ambulance transfer him. I had to think about it because he has asked us to go to CHOP for a simple xray when he had a cold. We were SUPPOSED to wheeze passed triage and be seen by a doctor (at our ER). That wasn't the case. We went through triage...and I started flipping out...then he had a room and was instantly seen by a doctor. She did an exam, started him on antibiotics (she called CHOP), and did a chest xray. It was then that we realized that Tre` had pneumonia.

How could I have missed this. He was fine one day and next thing I know he was starting, what I believed, to be a cold. I feel so bad for him.

When we arrived to CHOP, we went over his full history up until Friday. By looking at his history, current events, and viewing the xray, they believed that he aspirated. It's possible that this DID start off as a cold. He may have vomited and since he cannot walk and barely pull himself up...he could have aspirated.

Right now, I'm able to use the Ronald McDonald House (we have a room) wireless connection or the hospitals computers (of course.) I'll update when I can.

Today is Tre` Day!!!

2009-01-06T23:19:00.003-05:00

OMG it’s been three years. I’m a mother of a three year old. LOL It sounds weird but good to hear and even better to say. I will admit that I haven’t gotten over the events that transpired years ago. It STILL chokes me up. Then when I look at him, he looks at me (says something about Elmo) I feel comfort. I can’t get past the fact that they never believed he’d make it. This child is doing a lot more than what was expected of him and he gets better every day.

I tried to get him on film singing Happy Birthday To Me (oh it’s always all about him…oh boy) and Hi to a couple of his Aunties READING HIS BLOG…He told me know and proceeded to crawl away to bigger and better things.

On this date, three years ago at exactly 7:43 pm, my life changed. I was blessed with the greatest gift I could have been given. I thank God for him because I didn’t live or appreciate life until we had him.

Stinka Do Little

2009-01-04T13:03:00.003-05:00

Tre` recently had yet another evaluation. It’s so interesting to see how so many “specialist” tell you so many different things. One would say he’s 18month, one would say 24 months, I’ve also heard 15 months. I honestly don’t know who to believe sometimes. He DOES have delays, I can’t argue that, but I think they are giving him low expectations…I can’t really explain it. It’s like they READ his history and base a lot of it on his evaluation. Shouldn’t the bulk of it come from where he’s at now?

It doesn’t help that Tre` sometimes get shy or untrusting and refuse or ignore prompts. Here I go, “He can count to 13. Come on Tre`, let’s count.” He’d crawl away in search of a toy. “Do you want to count?” Tre` would say,” No!” Then he’d laugh and try to escape. Then they look at me like, “CAN he count?” Then they would sketch little notes. Grrr! When THAT doesn’t work, I’ll move onto singing. He LOVES to sing nursery rhymes. “Let’s sing Tre`! Row, row, row your boat.” If I didn’t know any better I’d swear I heard crickets, not Tre` singing. “OK, Twinkle, twinkle, little star….” After singing the WHOLE song by myself, Tre` has an expression that reads, “Mom, I’m not going to sing. You’re embarrassing me.” &@#$ grrrrrrrrrrrrrr!!!!

I guess there’s nothing I CAN do about it. It’s just aggravating because we know he does a lot more that’s expected but he…the stinker is just selling himself short. Is there an underlying cause behind this? I can't just "let it go." I've NEVER been able to do that, especially with him. Something just doesn't seem right. I'm just not sure what it is.

Merry Christmas

2008-12-25T12:00:00.002-05:00

So maybe I shouldn't laugh but this was too funny! This is his second visit with Santa this year. *sigh* Last year wasn't a problem. All of a sudden he's terrified of Santa. More pictures and updates are on the way!

From our family to yours Merry Christmas!!!

Make an on-line slideshow at www.OneTrueMedia.com

Too Attached or Too Involved????

2008-12-22T12:00:00.001-05:00

I have NO idea about the thoughts that cross peoples mind. Remember Tre` is supposed to get his leg braces, right? He was fitted for them at therapy (an actual building specializing in PT, ST, OT, etc.) It was done there because the tech makes his normal rounds in that facility. So, one of the nurses from his daycare accompanied him as per facility rules. There was no reason for us to be at the fitting since everything was discussed prior to.

Apparently, within the following days, the tech was placing his order and the nurse took it upon herself to order an army fatigue print. Army Fatigue? Seriously? I was so vexed; Victor had to talk to her. She said, she thought that they were cute and she’s seen him in army fatigue print before. OK…? I would have NEVER ordered army fatigue. It’s bad enough he has to wear the blasted things but now that are OUT THERE IN HE OPEN!!! I would have ordered black. At least black matches pretty much his whole wardrobe. I can’t see army fatigue with everything.

I swear when people make (or try to make) decisions for you it ticks me off. Unless asked, thy can keep their suggestions or recommendations. She drove me an hour pass crazy. It’s not like he gets more than one pair. He’s stuck with these until they are no longer needed, completed damaged, or he’s outgrown them. She didn't even have the respect to call and ask. I didn’t know he was placing the color order nor was I told.

Maaaaybe I’m overreacting. Maybe I’m not. When it comes to decisions about MY child, I take it to heart (friend, relative, nurse, or otherwise.) Remember he was in the hospital for so long and most of the time I was told when and what I can do. He’ll be 3 in January but it still strikes a nerve!

There will be more pictures to come. Santa…we’re going to have to try that again. Tre`….doesn’t’ care for the jolly man too much. He had an emotional breakdown. LOL

Transitioning?

2008-12-15T10:50:00.000-05:00

So as Tre` approaches 3, it will be time for him to start school. He’s been doing very well with everything. However, I’m having a few issues with him going into the school system.

I have to accept the fact that he’s not attending “regular” school. He’d be in a school formulated for children up to 21, with special needs. Victor and I will have the opportunity to view this school (s) inside and out. One school in particular was “recommended” by the public school’s social worker. This past Thursday we were able to visit the school. From the outside it seems fine.

The person (an office manager) conducting our tour boosted about their efficient security on campus. I was unfortunately able to find a few flaws. Now while a lot of schools don’t have security of any kind, I just didn’t like the fact that it was brought up as the best thing since sliced bread. They have a security booth outside manned by one “guard.” It’s nice to see but there was so many imperfections with that….I don’t want to get into it. The school has cameras inside every classroom. Parents are able to go onto school grounds to view their child in his/ her classroom with our disrupting any lessons being taught. Now my issue with that is, who’s watching the rooms when the parents aren’t there? Of course I asked and she said it would be her or someone like her watching the videos. Here’s my issue with that…can’t see ANYONE sitting in front of a screen looking at up to 100 classrooms at a time ESPECIALLY an office manager. It just takes a second for something to happen.

There are only two nurses per building. I’m not at all comfortable with that. In this school, you’ll find children and adults that suffer from seizures, breathing problems, and other issues that might require emergent care. What if someone is having a seizure on one side of the school (which is huge), another child is receiving medication, and MY child is in need of assistance?

When we were in one of the possible classrooms Tre` would be in, I noticed five adults in the room. One woman was sitting at a desk with her back to us and the students; two women dressed in scrubs were at a sink. They appeared to be preparing snacks for themselves. Not a problem. The last two women were in “street clothing” singing and teaching the children. In a whole, the setup struck me as odd. I learned that the woman at the desk (that didn’t have the decency to turn around to introduce herself) was their teacher and the other women were her assistances of some sort.

After watching them interact with the children, I asked if they hire people off the street. The answer is yes but it was quickly avoided the original question by informing us that they do a criminal background check on everyone. That’s great! Ummm you don’ have to have a “record” to be a criminal. That just means they have never been arrested/ caught. Then I asked if they (the employees) are required to take a drug test. She said she didn’t know. Yeah right. She knew so much about the school, the security system, and about staff but she didn’t know if they did drug testing. Are you serious? That turned me off. I would be more comfortable if she said, “no.” I know you should never judge people but some of the staff looked “suspect.”

There were a few other issues I had but you get it. I told the social worker that the search is still on. We’re talking about Tre` here. We’re not just settling.

We also have the opportunity to keep him in daycare for a bit longer. He will have all his therapies (more than he has now) and we (Victor, Tre`, and I) are comfortable with where he is now. Tre` has a habit of “shutting down” with people he doesn’t know. He’s had a nurse for about a year and he’s NEVER eaten for her. He obviously has a comfort thing and I don’t know if taking that away from him is best, particularly while he’s doing so great. Maybe a smaller environment would be better? I don’t know. We’ll cross that bridge when we get to it. Until the then the search sill lives on…..

The Tortoise Won!!!

2008-11-15T14:08:00.007-05:00

We've missed a day of blogging because we couldn't connect to the wireless router at the Ronald McDonald House, so there's a lot to get into to.

Friday morning we called the hospital from our hotel room to see how Tre`s night was. The nurse on duty said that he had another good night, but that the E.N.T. doctors came in again early this morning when he was having another one of his coughing spells and again they were reluctant to discharge him. See now here is the problem. When Tre` is sick, he has coughing spells in the morning when he wakes up, whether he has the trach in or not. Now the E.N.T. doctors only see him first thing in the morning when he is having one of these episodes so it concerns them. We wanted to get to the hospital as soon as possible, but we had to find a place to stay. Our hotel didn't have any rooms left, so we called the Ronald McDonald House, and after getting their books in order they found that they did have a room available so we took it. We checked into the Ronald McDonald House and then we were off to the hospital to check on Tre`.

We had previously asked for a consult from Tre`s pulmonary doctors. When we got to his room, we met up with pulmonary who examined him and thought he looked great (keep in mind that Tre was not having his coughing spell). So pulmonary spoke to E.N.T. and this is how we found out about the confusion. E.N.T. thought that Tre`s coughing spells were the norm for him all day. They didn't realize that after he wakes up and gets it out of his system, that he is fine for the rest of the day. When pulmonary told them the results of their examination and E.N.T. learned that his coughing spells are only there when he first wakes up in the morning, they said that Tre` had passed his decannulation trial, and he could go home.

For the first time in his life, Tre` was breathing completely on his own, without the assistance of any medical device whatsoever. We are so proud of him. It's been a long fight, but no matter what any doctor ever said, we know our boy and we knew that he could do it.

So Friday night we left the CHOP, and as soon as we got Tre` into his stroller, he wouldn't stop talking. It was Elmo this, and Ernie that, and a little bit of his own made up language that no one has been able to translate yet.

We stayed at the Ronald McDonald House because we didn't want to be too far from the hospital the first night. Tre` got to watch Elmo in Grouchland, and then we went downstairs to play in the playroom. After that we all got ready for bed and just crashed for the rest of the night.

Saturday moring comes and we pack up all of the things, checkout of the Ronald McDonald House and head home with our now trach-less son. We still have a lot left to do. Just to name a few, we have to get him walking, chewing whole foods, and get the G-tube out. But for now, we're just happy that he won't shut up.

Part 2: The Tortoise and the Hare (quick update)

2008-11-13T09:02:00.003-05:00

So we were supposed to bring Tre` home today but there's been a change of plans. Last night was a good night, best yet. However, when he woke up this morning he had yet another coughing spell. When he coughs hard, he desats. They never have to act because he brings himself up but they want to watch him "at least" one more day. There is also a lot of mucus that he's coughing up but this is brand new. He's been used to coughing secretions into a tube and being suctioned.

Of course, I'm nervous. He's a strong kid...but I'm his mom.

The Tortoise and the Hare

2008-11-12T08:52:00.007-05:00

One night down and another to go! It's kind of weird seeing him without a trach. This morning was a bit of a scare. You see Tre` has had a cold since Thursday. No matter how many doctors or nurses we told it always sound as if it was new news. OK fine... So the nurse was alarmed by the amount of coughing, respiratory rate, chest retractions, and mucus. This is a typical (sick) Tre` but since they didn't know him, it was alarming. Their worries has (still does) have me worried. I was ready to hear, "we have to put the trach back in." I kept asking the same questions over and again. I'm not sure why but I'm guessing it was my nerves. Vic claimed I kept asking question that I knew the answer to. Uh huh whateva! LOL

The doctor came in late in the afternoon to inform us that she will discharge him in the morning. HELLO!!! Of course I had to inform her that his is suffering from a cold, his symptoms, and the fact that they sent cultures to the lab. I just wanted to make sure she felt as though he was ready...to go off in the world...without a trach. Anywho she said his numbers were optimal but they are good. If you think that gave me a sense of relief, think again. I have been so worried I can't think straight. If someone ask me a question, I would drift off to la-la land. Vic has been cool, calm, and collective.

Vic said he believes that he will start to thrive now since the trach is gone. I completely agree with him. Now there are other issues we can address and check off "the list." Tre` has come a long way.

This is the same child that the doctors (the pesky hare) didn't believe would survive his hue date (April 16, 2006.)
This is the same child that was deemed to be ventilator dependant for the rest of his life.
This is the same child that they thought would be a vegetable. He'd never walk, they said. He's never talk, they said. He'd never show emotions, they said. They didn't give him much hope.

While he's not walking (yet!), but we are working on that and his physical therapist believes he can do it. Tre` has inspired me so much, it's hard to explain. After witnessing everything this little child had to go through, I have a new appreciation for life and how blessed we are. He's a happy child. I don't know why but the boys laughs at everything. No matter how bad he is, he'd do something to make us laugh. Oh, and lets not forget that Tre` LOVES to talk. He goes on and on and on...but I appreciate that, too.

Miracles happen and prayer changes things!

Again, I will remind you that I am still not home so disregard any and all typos, please. This computer is evil! LOL

Tonight's The Night, The Finish Line Is In Sight

2008-11-11T23:26:00.003-05:00

Right now Tre` is having his decannulation trial. While setting up the appointment, a nurse explained everything in detail. Tre` was supposed to sleep capped for the first night and if he has a successful night he will be decannulated early in the morning.

Vic, Tre`, and I arrive at the hospital. We got into the room pretty quickly. I was feeling nervous because he was just getting over a cold, and I don't know if that will hinder his performance during the trial. The doctors and nurses arrive in his room, and tell us that they have to coordinate with the E.N.T. doctors because they have heard two different stories about what is supposed to go on tonight. We went over his history with the doctors. The last time he was admitted into the hospital, he was on so many meds, but now he is not. The P.I.C.U. doctors examined him and then went to talk to E.N.T.

So the E.N.T. doctor walks in and says, "Are we all ready for decanunulation?" Vic and I said yes, but there was something strange about the way he asked, so Vic ask when he was planning to pull the trach out. The doctor said right now, and the both of us almost passed out. We knew that he was being admitted for a decannulation, but it was just so sudden. We figured that we had another night before the big day. The doctor said that his results from the sleep study were so good, that they feel comfortable with decannulating right now.

He then proceeded to remove the trach and covered the stoma with guaze and tape. I can't remember the last time we saw Tre's neck without having to hold a trach in place. After the trach was removed, Tre` acted as if nothing had happened. His SATS were between 98 - 100 and he was not trying to go to sleep even though it was past his bedtime. All he wanted to do was play and flirt with the nurses. I hope that he can keep his SATS high all night and prove to them that he is ready to leave the trach behind him.

I'll give updates as we continue the trial.

If my font or color looks weird it's because I'm on another server. I would like to apologize if there are typos. I am soooo tired.

1, 2, 3, 4, 5, 6

2008-10-25T18:43:00.002-04:00

Tre` can count to six. I want to teach him his ABC's but I need to hear a seven (the two syllables). He's gotten a lot better with his speech, too. I'm very proud of him. There is a new update but I need a minute. Oh, it's good news!

If my font or color looks weird it's because I'm on another server.

Unfazed

2008-10-24T17:49:00.001-04:00

There was a lot of confusion about this sleep study. I’m not exactly confident that they had all their orders straight. I wasn’t worried but confused. His tech entered the room and put on all is equipment. Tre` fell asleep between 10 and 10:30. By MIDNIGHT he was capped. The tech was so impressed by his numbers; he decided to leave him capped. By the middle of the night it was decided to leave him capped. And capped he stayed! Yay! We haven’t gotten an update from ENT as of yet. We may not get them until the next trial, the trach removal.

The tech said that all his numbers remained unaffected by the change. This is a good sign obviously.

He did a great job!

How Do You Sleep During A Sleep Study?

2008-10-22T21:35:00.003-04:00

Seriously?!? How is anyone suppose to sleep with wires up the wazoo? Tre` has wires glued to his head and his chest, wires in his trach, tubes in his nose, and a band around his chest. Poor kid. He's not even trying to go to sleep, either. No he wants to play with his straw. If it's taken from him, it will be hell to pay!

So the tech (there are no nurses) told Victor that there is an order for him to be capped half way through the night. While setting up the appointment I was told that he is ONLY supposed to sleep as he would at home. I'm so confused, right now. I'm sure he'll be okay (IF this is the plan), at LEAST an hour. He has taken naps before with the cap on.

Oh Wow...We're Having A Sleep Over :(

2008-10-21T20:59:00.004-04:00

So there’s been a little change in plans! His ENT had a sudden change in our game plan. Now Tre` WILL be having a sleep study done. With this sleep study he will do an overnight at the hospital. There’s nothing special about it. He would sleep as he does at home. What they are looking for is a baseline. They would like to see how he sleep and obviously monitor him closely. Originally she thought he could do an “all in one” during one hospital stay (cap one night or two then pull the trach the following night). I’m not sure what changed her mind but now this is what we have to deal with. We're heading in tomorrow (10/22) night. Oh joy...

Being that the hospital is a two hour drive we wanted to see if we can find a reasonable priced hotel close to the hospital. They frown upon both parents in the room overnight. Here was no such luck. EVERYTHING was too expensive. So we’re going to stay in his room for as long as we can, then we are going to camp out in the car. I know, it’s sad isn’t it? This was brought on so late I didn’t have a chance to reserve a room at the Ronald McDonald House.

We aren’t too nervous about this trial. However the next trial is a totally different story! The next trial is capping overnight followed by decannulation. A patient can stay n the hospital for as little as two days. The receptionist informed me that her child stayed for five days and a lot of times patients fail the first trial.

We want this for him so badly. It was a upsetting when the plans were changed but I understand that no only do we want him without a trach but we also want it don safely…I just don’t know if we can have any other sudden changes or surprises.

If anyone has a prayer to spare, please send it our way.

We're Getting More Help! Ya!

2008-09-17T12:23:00.001-04:00

So I have been having issues with Tre’s PT with EI for some time now. He’s not progressing as much as he could. We have not received most of the resources he’s entitled to from Early Intervention. He has issues with his ankles while in a standing position. You think she’d recommend a pediatric orthopedic and explain the process of obtaining leg braces or other equipment he may need. No, she didn’t. Tre` should have a stander or a walker to aid him in his therapies. No such aids have been provided by her nor has she recommended a company and proper procedures to obtain one. It was getting frustrated. Tre` will b 3, January 6, not only will EI be discontinued but he has to be prepared for the school system. This process hasn’t been explained to me by EI. All of these issues are supposed to be handled or aided through EI. This clearly isn’t the case. EI is expected to help parents but it seems like I’m doing it all on my own. I’m tired and hurt. Tre` is finally crawling…well he’s been crawling but it had nothing to do with PT.

It’s hard to see him watching other kids running and playing while he’s incapable.
I contacted our insurance company and learned that outpatient therapy is covered. I also found a facility that specializes in children’s therapy. They provide physical therapy, speech therapy, feeding, and more. All we are responsible for is to get him evaluated and co-pays. After tons of research (including a walk through) Vic and I found the facility a sign of relief.

We had him evaluated by PT there and she spotted EVERYTHING I needed her to spot. I was totally impressed! She recommended something called a gait trainer AND pediatric orthopedic. I was even given information about an actual practice that’s good and willing to travel to me if needed! The PT was able to work with him for two hours. Just watching her work with him made me want to have a little premature celebration. I have never seen him climb up stairs. She worked with form stairs and was actually trying o do it himself. Note to self: purchase extra baby gates.

Right now we’re waiting for her complete evaluation and schedule to be mailed out so we can get the ball rolling. I’m so excited. Next step is to get him evaluated for other therapies as needed.

Pit-bull With a Diapers

2008-09-17T11:06:00.002-04:00

There’s a little girl in school with Tre` that tries to kiss him every chance she has. While it may sound cute, Vic and I are not too fond of it. He’s in a medical day care! Like any other day care kids get sick all the time. I’ve been trying to keep him as healthy as I possibly can. I can see if it was a relative but I she’s obviously not.

So someone called me from the daycare saying that the little girl pulled a chair up to his highchair, climbed up, and bit him on his cheek. Hell fire couldn’t scorch me I was livid. I needed to know where the nurses and staff were, his reaction, if skin was broken, where the little girl was after the incident, have they notified the parent (s), and if they will write a report. I was told that there was no broken skin but a small round bruise that they put ice on. He didn’t like it but hey kept it on for as long as they could. She said the nurse left the toddler room to get snacks so they were short one staff member. That was understood. I was promised that they will keep her away from him and never allow ANYONE close enough to kiss him. Now he can play with other kids but I don’t want this happening again. She also told me she will notify the little girls’ parents once we were off the phone.

What is wrong with this child?!?! Biting people? Seriously? If it happens again, I’m going to have a talk with her mother!

Just One Step Away From Being Trach Free

2008-09-17T10:22:00.003-04:00

Tre` was reevaluated for capping last week. I’m so happy to report that it was a complete success. Capping basically forces a person to breathe from their mouth and nose only. It shuts down the trached airway. So as some of you may know the first capping was ineffective. I was so nervous that he would handle the second trial but I’m nervous before every appointment (It could be as simple as being late (a regular) and as terrible as bad news.) Vic and I were caught by surprise the moment the cap went on. Tre` acted as if there was no change. He played and talked danced and talked some more. It was unbelievable.

His doctor was so impressed that she doesn’t want a sleep study prior to decannulation (Removal of a tracheostomy tube.) With a sleep study Tre` will be capped overnight during a 2 – 4 day stay at the hospital. Our game is to keep him capped while he’s awake. In a month, I will call the doctor to report how he tolerated the capping. At that point she and I will schedule his decannulation process. He will stay overnight for a total of four nights. The first two nights, he will be capped for 48 hours (night and day). If that is successful, his raced will be pulled completely out. He will be monitored for another two days. If THAT’S successful, good-bye tracheostomy!

I’m going to keep my fingers…toes, and eyes crossed for this one. I’m shocked that this is being done in the fall. Wait, I’m nervous that this is being done in the fall. Tre` is known to catch a cold right before an appointment.

I Feel Like We're Starting Over. No Do Overs

2008-08-21T17:53:00.004-04:00

So Tre` is having a bit of a set back with eating. Since his surgery he’s been relying mostly on tube feeds. There’s no pain or anything it’s totally behavioral and annoying. He’d eat yogurt but fight to eat the other food groups. Uurgh! This reminds me of how kids would rather eat candy or junk food instead of a healthy meal.

Initially, he couldn’t tolerate oral feeds because his throat was very tender. Now it’s as if were starting all over again. I have NO idea what to even do. Well that's a lie, I do. It's just back to square one and not allowing him to get over like everyone else (daycare.) Mommy don't play!

We’re getting new therapist and may leave EI alone all together. That’s still in the works. Our PT therapist is inexcusable. She's supposed to be a supervisor but she sucks as my sons therapist. He hasn't done ANYTHING with her. Yes, I could always switch therapist but I'm having other issues with EI. Hey, I might end up switching PT and providing Tre` with outpatient therapy since it's covered under our insurance. We're not 100% on keeping EI since we haven't wreaked any benefits lately. I’ll update that when it’s definite.

Are you sitting down? Tre` had his first kiss this week. Some little girl named Harmony grabbed his cheeks and planted on right on his mouth. Of course I was beyond upset because of diseases and germs but his nurses thought that was the funniest or cutest thing they saw. (Putting my head down) Yes, I did talk to him about the birds and the bees, and how he should wait, and protection. Whatever! LOL

I’m going to set up an appointment with ENT tomorrow to see when we can set up another capping. I’ll update that as well.

Here’s my brown Harry Potter.

Footloose and Tonsil Free

2008-07-28T15:08:00.006-04:00

I’m beginning to think that absolutely nothing can be uneventful with us. For starters his surgery was almost three hours late. I was “ok” with that. I completely understand that there are emergencies and add-ons all the time. We were just getting antsy because we basically had to prepare ourselves so we were less nervous.
Once we were in the pre-op room Tre` was given a sedative to calm him down….which didn’t work of course. This child was all over the place. He threw this, hit that, he even ripped off his hospital band. I don’t know how he did that! I know I can’t.
ANYWHO, about a half hour after entering the OR (operating room) the doctor/ surgeon called on the waiting room phone. She informed Vic that his tonsils went from 2+ to 3, she also found pus where the tracheostomy ends. We hadn’t noticed any changes with his daily trach care but he also wasn’t due for another trach change. She initially wanted to do a T&A but decided (without our knowledge) that she would also do a revision (to remove scar tissue on or around area) of his trach. She did a culture (which we STILL haven’t received the results) and told us she could not do a revision in fear that it could cause in infection. However, a T&A would be fine.
After surgery, we spoke to the doctor. She said that despite her little discovery everything went well. He was started on antibiotics and the cultures were sent. She also wanted him to have Tylenol with Codine Q4 (every four hours). We were also given an idea about our new “game plan.” If it wasn’t for the bacteria he would have been capped in recovery but she didn’t want to overwork him, either. Now I will schedule an appointment in about a month for round two of the capping. I’m keeping my fingers crossed.
So Tre` gets into ICU (because he has a trach) and he’s so groggy. Once we went to sleep Vic and I went to check into our hotel and return. He began to wake up about an hour after our return. At about 9-ish, he was obviously in pain. It was completely obvious he was in pain. He was crying and his heart rate, saturation, and respiratory rate climbed all over the place.
I asked his nurse, “When is the next time he’s due for pain medication?”
She looked at his chart and said, “There are no orders for pain meds.”
“What?” Yes, I was floored
“No, there was nothing written.”
“Murder, death, kill” was the only thing functioning in my now pulsating mind. Victor got to the bottom of it while I kept watch of my “cub.” By the time he returned the orders were written. They ended up keeping him an extra day for observation, which is typical (that’s why I booked the room for two days).
So we’re back now he’s so not into eating but he’s talking more.
Until next time, here are a few thumbnails:

So You Think You Can Dance?

2008-07-22T10:02:00.002-04:00

Tre` is what I like to call a pro crawler. LOL He finds a way to get into EVERYTHING that's not nailed down and even if it were he’d try to find a ways to get it free. He also “runs” from us when he’s in trouble, doesn’t want to do a task, or wants us to chase him. The kid is fast, too!

Vic and I feel that baby gates are long overdue…BTW no one told us that they were so expensive....thanks...seriously. If a door is opened he darts toward it. Don’t blink because you might miss him. I tell you, if his eyes are open I won’t trust him.

He also likes to dance. While mom is a huge fan of R&B and Pop fan, Tre` likes to dance to Rap, Mental, and Rock. Go Figure. The commercial on TV from Verizon with Kevin Garnet is his all-time favorite. The very moment the music starts his fingers goes up and he starts the boogie! He'd stop whatever he's doing (eating, playing, talking) just to dance. Once the music is over he'll return to what ever he was doing before. He's also a fan of the Early Edison commercial. He doesn't dance but he'll stop to watch America's 2nd worse commercial. He does acknowledge the worse of all time, though. Phew WTH is he doing with his foot in the being of that commercial!! Huh?!? JUST by the commercial alone. I would NEVER use their service.

(Back on subject, I just blacked out a little) So I’m having an issue with his PT (physical therapist) as well. Tre` uses W-sitting and while it’s improved she seems to make that her main focus. It wasn’t her that got him to crawl, either. It was between daycare, Vic (his dad), and myself. I’m not seeing enough results with EI these days. I don’t know if I’m just expecting too much or they really need to get the ball rolling. I’m not asking for Tre` to walk by the end of the week but make some attempts and give me a few pointers. I know it’s in him, we just need direction. This is so frustrating. Am I asking for too much or not enough?

For some time he was using a stander. It was provided (owned) by EI but used at home. One day the therapist recommended that she used the stander at daycare, since he was having his sessions there. That was almost six months ago. So initially, I though that he just wasn’t ready and THAT’S why there was no improvement….

Then one of the nurses asked, “Dwana is it okay if we use the stander here?” I was dumbfounded. I said, “Why wouldn’t you? It’s not there?” She said, “No it never was.”

Now I haven’t been in contact with EI for a month now. Why? Well we never get bills, just letters with a summary of visits that said, "This is not a bill". So we were suspended for nonpayment. This is the second time this had happened. Then by the time we get notice of suspension, he’s already suspended and the bill is 5 or $600. I don’t know about anyone else but I’d like to get the bill much sooner before it gets that high. Anyway, that’s another story.

ANYWHO, she has been so focused on one thing and I believe Tre` is suffering. I need to find out how to get his OWN stander and the proper steps that should be taken for it.

A few weeks ago he was at his cousins’ birthday party. He wanted to play with the other kids but it was in a park (dirt area) and they were running all over the place. I felt so bad that he was stuck with the adults being passed around. The kids wanted him to play different games but it just wasn’t happening. Why can’t we work on W-sitting and something else? Yeah…so he’s getting a new therapist…soon! I don’t have time for this.

What Chu Talkin Bout

2008-07-21T18:35:00.001-04:00

There are many updates, questions, and concerns that I don’t know where to begin. Tre` has come such a long way, it makes me so proud. For a child that wasn’t given much of a chance (even at life) he’s proven so many wrong. I was told that my child would be vent dependent for life. He'd be nonactive or never have use of his legs. We were even told that he wouldn't smile. Boy oh boy! I TOLD you so! We're just scratching the surface. He has major delays but everyday he does something new.

He still uses his G-Tube overnight for calories. However that may be shortly lived because he’s an eater! Ha ha ha! Oh boy he eats pureed foods or Gerber stage 3. I said Gerber because some of Beechnut stage 3 foods are too tough. Tre` hasn’t mastered the art of chewing. No way, get it in and down. No chewing. The ST (speech therapist) from EI (early intervention) is a little slow on her game. She’s more concerned with him speaking and playing but not with chewing. Well, any mom would like to see her child play and hear him/ her speak but chewing seems very important. Umm, choke hazards? He loves to feed himself (his hair, ankle, clothes, etc) chocolate pudding and yogurt. This child also has the audacity to have a temper tantrum when all the food is gone. This is the same child that refused ANY PO (by mouth) feeds!

He has a few "bad habits" with eating. For instance, he refuses finger foods (i.e. cookies, crackers, etc.) If he or anyone touches the food he won't eat it. However, if it's on a spoon he will attempt. No forks. He wouldn't even acknowledge you if you try to feed him with a fork. Spoon only! Lastly, if he gets food on his hand or fingers, he's done. Not only does he want to be cleaned up but dinner is officially over. It's ruined. There's a "claim" that I did the same thing as a child but there's no documented evidence.

We are talking, too. Both with and without the speech valve! He says words and phrases. Unlike his parents, he’s quick to talk you to death. OMG! You have NO idea. His favorite words are shared by many other two year olds: Mom, No, and Dad. He also likes, “I did it, Elmo, YaMa (GrandMa), Cock Cock (mean PopPop, hey you can’t correct everything), Morning, Night Night, Oh No, Bub (Bubbles), YumYum, Yuckie, Amen, Stop”, and MUCH more.

He’s tipping the scales at approximately 28lbs and 33in in length. He can wear a 4t but I dress him in 5t. I remember buying his outfits and they’d only be worn twice. Won’t get ME again, LOL!!! He’s in a size 5 diaper…snugly so I just started 6’s. They seem a little large but no one has invented a 5 1/2, yet.

We don’t have home nurses so as you all know we worked out a deal with his doctors by sending him to a medical daycare. It’s basically, a daycare with nurse staff and kids not ready for regular daycare (anywhere from allergies to g-tubes.) While I don’t care for daycares all too much, Tre loves it. It’s been a great developmental piece. He’s learning, making new friends, and he was awarded Class Cutest. LOL

He has a new nickname. The staff at daycare calls him Nature Boy. Well, he has a habit of disrobing and swinging his clothes over his head. At home it’s the clothes AND diaper (with or without surprises inside.) He finds his nakedness EXTREMELY amusing!

Number 14

2008-07-21T17:15:00.003-04:00

Soooo this is surgery/ procedure number 14 for Tre and I'm a nervous wreck for more than one reason. First, HELLO it's surgery. Second, I'm worried about possible infection, side effects, and his discomfort. I’ve heard people talk about eating ice cream, etc. Well, this kid doesn’t like ice cream! The closest thing I’d have to give him is Italian ice (he shares RARELY with his dad) or yogurt.

He was always able to bounce back after a procedure earlier on but they were also so close together. I recall a time where he didn't cry with shots/ immunizations and later his world was caving in if he saw a needle. WTH. This is a child that would bump his head and act as if nothing happened. NOW, when he bumps his head he is so emotional.

He's due for a tonsillectomy on the 23rd. After his bronc it was discovered that he had 2+ tonsils and very minimal scar tissue (which caught everyone by surprise.) The scar tissue was so insignificant that she may not bother with it during surgery. Children and adults with trachs will have some scar tissue but with Tre's history we expected a lot more. He still occasionally pulls at his trach and it's rushed back in but obviously without damage. We were told that he will be there overnight or longer. I’ve been so nervous about this that I haven’t been able to function.

This is a very important procedure. His ENT doctor believes that it will improve his chances of kicking the tracheostomy. She attempted to cap (The cap is designed to facilitate tracheostomy tube weaning and voice restoration. These caps are intended for use with fenestrated or uncuffed tracheostomy tubes only. ) him in her office but was unsuccessful. He was working too hard for anyone’s comfort. In his defense, dad and I knew he was ready but Tre` had JUST started a cold. He was congested days before his appointment.

So we're at #14 and sadly there's more to come. We'll cross that bridge when we get there...not before.

Merry Christmas

2007-12-25T20:53:00.000-05:00

Well, I have been slacking with this blog, huh? Anywho. Christmas Eve was spent with at my in-laws house. His grandparents were so amazed by how much he's able to do! We had a great time. I watched proudly knowing that he can do a lot more but being that he hasn't seen them in a while he wasn't as “open” as he would be around more familiar faces. He sat up, rolled front to back and back to front, ate, played, “talked” (saying mom, dad, bye, and babbles), made attempt to crawl, imitates “So Big” by putting his hands over his head, peek-a-boo, clapping, blowing kisses, and his new talent! He can stand...kind of. I'd sit on the floor and stand him between my legs while he'd lean on me or hold himself up by grasping my neck or shoulders. He's using his legs!

We had another “Santa” Visit this year, too. No knock at the door or ringing of the doorbell like last year. Victor just noticed that there was something in the door. No return address or name, just Santa. We are so grateful. Thank God for angels!

His OT recommended that I contact Tre's neurologist. She said she's concerned about the “tone” in his legs. I would have to ask that she goes into detail because she was extremely brief and called my phone.

The therapist gets me so agitated sometimes! First they say that I'm working him too hard and how Tre` should learn to play alone. Then they make it seem as though I'm not doing enough. Last evaluation for example. The evaluation stared at 2 or so, Tre` came back from daycare at around 4p, when he gets back I give his meds, cuddle with him (because I miss him and the only reason he's in this medical daycare is because w don't have any nursing), and by 5 he's suppose to start his tube feeding (as per doctors orders). Most of he time he's so pooped from playing at daycare and the trip home he wants to nap. Well! Se starts questioning his play times. “So, when do you guys play?” “Umm generally after daycare if he's up to it. We slow it up from about 5-7 because he's getting his tube feeds.” We don't like to over work him while he eating because of his reflux. “Then he plays alone or one of us while we get him ready for bed.” She give a, “Oh.” Then she moves onto, “Mom you need to loosen up his trach ties, they are too tight.” “No they aren't why would you say that? Only two fingers are supposed to fit in. No o mention he has such a short trach you don't want it to slip out.” It was then that I realized SHE was the reason his trach had came out. She must have been loosening them up and no one at the day care stopped her or checked at all. Both times the ties were extremely loose so I automatically blamed his nurses for not properly securing them. Hey, it's a possibility, I'm just saying.

So his dietitian recommended yoBaby for re` and he absolutely LOVES the stuff. I love it for him, too. I seen the other kiddie yogurt and they're full of sugars and dyes. That may be ok when he's older and would like it as a snack but no time at the present. The six-pack runs about $4.99 and is NEVER on sale...well not that I seen. The site has coupons somewhere but I can't get them to print. Grrr!

We see ENT (ears, nose, and throat or Otolaryngology) in two days. Not liking that!

His OT (occupational therapist) would like Tre` to play with different toys. She specifically asked for toys that he'd pull (instead of the very common push a button lights and sounds bit) or turn. I have NO IDEA where or what I'm looking for. I've seen stirring wheels but I'm not sure if that's where she was aiming.

Merry Christmas Everybody! I'll try to get new pictures and stats soon. Someone turns 2 on the 6th! Keep those prayers coming!

Oz Has Spoken!

2007-12-03T09:09:00.000-05:00

When we got there we had no idea where to go and who to speak with. From the administration department we were tagged (parents get hospital bands) and sent to the PICU. We were hoping that he didn't have to share a room because of germs and privacy issues and to our surprise (prayers LOL) he was in a single room. The nurse assigned to Tre had no idea why he was there nor did the Attending Physician. Awkwwwward! We explained or situation and gave a history then quickly started settling in. The doctor came in to alert me that she had NO idea that we were coming and needed a little time to investigate. Just as I started to undress him into comfortable lounge wear a nurse came in to let me know that he was in the wrong area of the hospital. So I redressed and stuffed the rest of is things in his bags and went to the other end of the hospital.

I have to admit, once we got settled in I wasn't worried for a bit. I don't think I was being cocky or anything but come on here, this IS Tre` here. LOL Just kidding. Vic and I felt confident that he'd pass this test because he has been doing so well.

So initially he was supposed to go in on the 27th and come back home on the 29th. The doctor was concerned because he was coughing and wheezing a lot in the morning (which is so typical for Tre whether he's on or off the ventilator.) so he decided to keep him for one more day. It wasn't something Vic and I expected but being that they don't care for him day after day we understood.

We were anxious to finally get him back home so when we got to the hospital we expected to pack up and go...until his nurse said, “so, the doctor might want to keep him one more day.” “No, he isn't! Why?!” Sh said the doctor wanted to watch him because he received three albuterol treatments for wheezing. “Okay soooooooo what has he been doing DIFFERENT from the time we walked him the door? I want to speak to whomever thought he was staying another day.” That person never came. However his pulm did. He thought he was okay to go a long time ago. Apparently the doctor didn't want to speak to b directly so he discharged him and sent his pulm for discharge orders. Tre` has a bit of a cold which can account for SOME of his coughing and wheezing. Staying in the hospital wouldn't change that because he showed everyone he can handle it without crashing.

In the end, he did great! Tre` is still of course trached but o longer vented. Our next step is to visit ENT December 27 (I remember the date because it was the day I went onto bed rest).

He's down three pounds because SOMEONE was stubborn and wouldn't eat anything by mouth for his nurses. That's another story!

We're Off To See The Wizard!

2007-11-27T11:52:00.000-05:00

I just got a call from the hospital not even an hour ago. They will be ready for him in an hour. HUH?!?! I didn't get the memo! It appears that the pulm department made arrangements and finalized them without Victor and I. I called Victor immediately and he's just as dumbfounded as I am.

He's on his way back home and I'm packing a bag for Tre'. The admission clerk has NO IDEA what I'm supposed to bring or how long he's going to be there. I know not to pack medication but I have a few outfits, his favorite toy, a few HME's, jar food, and formula. What the heck! I'm not prepared for this and I'm sooooooo scared.

I had a little time to send an update since Vic has left his job and on his way. I'll update later today at the hospital or tomorrow when I can.

Decisions....Decisions

2007-11-01T09:53:00.000-04:00

Tre` had a pulmonary appointment two weeks ago. We (parents and pulmonary) are so proud of all his accomplishments. He's doing great. The doctor wants him to have trials off the ventilator for 24 hours. Right now he's off during the day and back on at night (while sleeping). Vic and I just realized that pulmonary thought that Tre` was back on the ventilator for long naps. That isn't true at all. He's taken long naps, even for an hour, without ventilation or humidified air. Pulmonary would like documentation of his stats while he's asleep from the daycare (which has a communication problem with pulmonary. Don't want to get into that right now!)

This is our predicament:
Pulmonary would like to get him off the vent entirely! This means no night time ventilation. Being that we STILL don't have any nursing this process will be tricky. We have two options: For a few days Vic and I would have to monitor him closely, check vitals, etc. OR we'd have him in a "step-down" PICU at the children's hospital for one or two days. NOW Victor says absolutely not. He doesn't want to "go back into the hospital." Vic is afraid of germs (hospitals get a lot of sick kids around this time), traveling, and what I will describe as a flashback. We were stressed a lot while he was being hospitalized and took a lot of that anger, frustration, and stressed out on each other. For me, well I think he would benefit more with him in the hospital. For starters, there are doctors right there if needed. Vic and I would have to be awake 24 hours for days! Pulmonary can easily go in a visit or see for themselves how well he'd do verses relying on appointments and phone calls. It's a MUCH quicker process than being home. I would like to give them a call on Monday or Tuesday with our final decision. If and when we complete this process the next step is Capping! Decisions, decisions which way do we go? Sigh. I honestly don't know why this is such a hard decision.

Although he didn't receive ST for some time, he still got bigger, stronger, and better! It use to take him 15min to take 3cc, to 5cc, to 15cc of stage 1. Now he gets a jar (4oz) three or four times a day! Now Tre` is by NO MEANS a fan of meat (turkey, beef, lamb, chicken, and no one in the house eats pork) and vegetables. I'm able to give him the meat/ fruit mixed jars but that took a lot of convincing in the beginning. Now that he's tolerating PO (by mouth/ orally) feedings and gaining a substantial amount of weight, they have made changes to his nutrition schedule. He use to get continuous feed of Peptamen Jr. overnight. Starting at 8am he'd have 150 dose at a rate of 75, then he'd have a two hour break, then he's back on, and off again. This went on until 11pm where he was switched to continuous feed. Now, we are able to drop one of his afternoon tube feeds. This is great for many reasons, too. For starters we get to work on his PO feeds. Secondly, he would have a better chance to "sense" when it's time to eat by having an empty stomach. I will say that everyday LITERALLY he gets better at eating. Like I said before he averages a jar of Stage 2 three or four times a day, however, TODAY he ate two jars for lunch with absolutely no hesitation. That's a record that I'm hopping to break by next week! A mom can dream, right?

Tre` just had an anniversary last month. Tre` came home 10/31/06
Some thumbnails!

It's Been A Long Time, Huh? Here's the Short Version

2007-09-08T23:03:00.000-04:00

Attention Misty and Jessica. Thanks for checking up on us religiously! You are such a sweetheart. Tre's new Aunties. Here goes typos and all. LOL

Victor stayed home from work this past Thursday because he needed an MRI for a shoulder injury he got while playing ball. I was at my school frantically looking for my class. When I got there at EXACTLY 10a, the class was empty. I later figured out that I was a day early for school! I was soooooooo upset. I've been saying my classes started Friday but Victor insisted that it was Thursday. It was my fault for not looking at the schedule. I did however get a feel for the timing, though. At around a quarter to 4p, we were home together when Tre came home from daycare. Victor and I went outside together to bring him in. Tre was his usual self, when he got home. He was playful, babbling (yes he can!), and happy. He did his normal “Ma, ma, ma” “Mom, ma, mammmmmmmm.” Victor and I looked at each other. We've heard him say mom a million times but this was different. As we zeroed in he continued rambling and babbling. It was when he coughed that our unspoken thoughts started to converse with one another. Coughing is normal because of his increase secretions and reflux. It was like his babbling...it was clear. It's supposed to sound raspy or low. Not all people can hear him most of the time but this was as clear as day! “Is the trach” we said in unison. Instantly Victor lifted his cheeks and hydrosorb . while I looked and sure enough the tracheostomy was not in the trachea. It was laying outside on his neck! He scooped up and rushed upstairs to the bedroom where he can be properly positioned. We COULD NOT get the original trach back in. I grabbed another trach and still couldn't get it in. Victor tried to put in a size down and was unsuccessful. The stoma was closing. It's obvious his trach had been out for some time. This is not the first time his trach came out. I'm talking hours! We grabbed the baby ad a few more trach, in case I could get it in on the way to the hospital.

On the way to the hospital I dialed 911 and we were instructed to pull into the police station, which was right across the street from where we were. I had NO IDEA what they could do that I couldn't but we complied. As we pulled in to the driveway, they acted as if they didn't know we were coming. I ignored their ignorance and asked an officer (whoever was listening) if they had any surgilube. I grabbed everything BUT surgilube. It must have went completely over his head or he never seen anything like what was happening in front of him because he looked lost before he uttered, “huh.” An ambulance pulled behind us and I gave them a full history in one breath. Victor went back home to get more supplies (we are not confident in our local hospital...at all) while I was in back with Tre.

When we got there we had to wait for a bed. I started to get flashbacks of the last time I was in that emergency room. I was hemorrhaging with a threatened miscarriage. While I sat in the waiting area they took in sprain ankles, upset stomachs, and other noncritical issues. I was there until the next day.

Anyway, I held him closely and then realized. He's OK. Not one time did he show me he was in trouble. The only time he cried was when he was being held down. In fact he laughed A LOT. I didn't want to get too comfortable because anything can happen at this point. We finally got a room and again I tried with the trach. I asked if they had any trachs on hand and as suspected, they didn't. I can't STAND that hospital. Urrrgh!!!

The doctor skips in with a look that he either won his license or he got his medical experience from someones basement. He didn't even look at the sink. I tried to keep my cool the best way I could, while watching this "doctor" repeat the same questions while trying to figure out how he can be considered a hero! Give me a break! When handling a trach it should be in a clean manner if sterilization isn't an option. I THOUGHT being we were in a hospital we ALL knew that. No not this guy. Not only did he try to sit the trach down on the counter and reuse it but he THOUGHT he was going to use a suction tube that fell on the hospital floor. Not on MY watch. He thought he was teaching me something by trying to convince me that you should only use the smallest amount possible of surgilube. Common sense would tell the most ignorant person that you'd want to “lube it up.” It was official when he thought he had to rub the lubricant in. He eventually gave up on the trach and got an ET tube and luckily it slide right in...and in...and in..and "Wait what are you doing!?!?! Are you serious, you can't do that!" Not one time did he measure how far he was going down and Tre' was busy coughing and crying. I wasn't sure if it was due to pain, irritation or agitation. Either, or, and, or whatever, it was making me mad! I told him to stop. He that if he didn't get an ET tube in the trachea than he would have to be intubate. That hurt but seeing him being tortured hurt more. He thought it was going to intubate him awake. This man does a lot of thinking...now if we can only get him to make sense???

Surely, I am terrified of him being sedated, especially involving this quack that thinks but I wouldn't want him to go through that awake. So far he has been a good boy. I mean STILL showed no signs of respiratory distress and he's been trach-free and vent free for four or five hours right now. I know he has laryngomalacia and tracheomalacia and it's my understanding that things can go back QUICK.

At this point I told Victor to meet Tre' and I at CHOP. He didn't want to leave but he had no choice really. About a half hour of Tre' and I being alone a nurse came in the room and said she didn't think I would be able to be transported in the helicopter with him and it was uncommon for it to happen. For a brief moment I got nervous. It wasn't until I repeated what she said over the phone for me to realize, exactly what she was saying. I wasn't having that. She thought that I was going to have my child up in the air and/ or doing something that I haven't done...alone. I flat out told her that I didn't care if they had to leave a team member behind so I can fly. It wasn't happening and I made it clear. However, she reluctantly repeated herself and added she'd see what they said. I told her to tell them the same thing.

When the crew came in the room I gave them a history and ended it with, “Oh and I'm flying with him.” The male crew member spoke up and said I could fly. I thought everything was everything at this point. Nope, I was so wrong! The female crew member made a statement that made sense to me then but not before. Tre' couldn't fly unless he had a stable airway . His trach had been out for sometime and every precious hour allowed his stoma to close even more.

I could see that the crew was extremely displeased with the doctor. The female went to the helicopter to see if she can find other supplies that the hospital didn't have. The second crew member (the gentleman) took over and rigged the ET tube in his trach before she returned. It wasn't 100% stable but it was the best they could do considering the circumstances. The doctor prescribed ativan so he'd be relaxed while in flight. I think I needed it more than him because the air and I don't have a great relationship...at all! Anyway, as many should know, medication is dosed according to weight. Dr. Looney Bin asked me for his weight without confirmation. I know that the window is pretty vast for prescribing certain medications but if I was completely loosing it would you really take my word for it? So, he told the crew, "uh, yeah, if he needs more while he's up there you can go ahead and..." "Yeah, once we leave out those doors another doctor's in charge." The guy cut him off. I just smiled trying to hold in everything I had built up. We were heading out

I'm not going to get into the "how was your flight." LOL OK? After an examination by the ER docs at CHOP (the real doctors) examined him, they called in for respiratory. They in turn called ENT who examined him and got the trach successfully back in. They believe that his trach was out long before we discovered it. Thank God we did. If it wasn't for him calling for his mom it would have more critical moments in between.

Tre' is in a Medical Day Care during the day as per doctor's orders since we don't have a nursing agency. They have nurses, aides, and a therapist there at all times. How n th world was his trach able to be out for so long and NO ONE noticed?

She hit me!

2007-07-28T23:44:00.000-04:00

I've been tagged by Lisa to post 8 random facts about myself.

I have to post these rules before I give you the facts:

Each player starts with eight random facts/habits about themselves.

People who are tagged need to write their own blog (about their eight things) and post these rules.

At the end of your blog, you need to choose eight people to get tagged and list their names.

Lets do the dang thing!!!

I can't pronounce the word specific or Pacific, for that matter. Specific comes out sPa-piff-ic and Pacific comes out Pa-piff-ic.
At this point and time the ONLY thing I'm happy about is God and Tre'!!! Besides those too I'm pretty miserable.
I sleep with the TV on because I'm afraid of the dark.
I am afraid of any and all insects. From a gnat to a spider! I never seen the movie Arachnophobia. Why? Because I can't even see a picture of an insect.
I don't get much support when it comes to Tre' and I. At first it was pretty hard, a little bitter, but I can do it!
I have a great sense of style! A fashion genius if you will. LOL
I'm considering a Lap-Band. The stress has gotten th upper hand. When life gets too hard grab a cookie!
In all my high school years I was awarded class clown. LMAO!

I gave you 8!!! What baby!?!?

Still in the race: Check Point

2007-07-25T02:09:00.000-04:00

It's been a LONG time since I last updated. I have to apologize. However, I have been so busy it's not even funny. As I update, I'm halfway asleep!!! Look it's only 2am!

So we had another doctor's appointment with pulmonary (after rescheduling twice!!!) We got there late OF COURSE. Luckily we were able to still be seen...just have to wait for about two hours and some change. I wasn't too upset about it, though, because we've been waiting for this appointment (like every other pulmonary appointment) for some time now. Anywho, we went over the fact that we don't have a nursing agency and the importance of having one. LIKE WE DIDN'T KNOW! Unfortunately, we can't do anything until the paperwork is complete. Our hands are tied until the DDD program is complete and a nursing agency “accepts” the mighty dollar provided the their program. So far no one (nursing agencies) thinks the pay is significant enough to take on the “case.” They wouldn't have much to do. Everyone's (the specialist) main concern is watching him overnight. Possibly giving him medication in the middle of the night. Tre' sleeps through the night with no problems. BLESSED! You don't mess with him and he won't mess with you. It's been that way since he came home. He may have alarmed five times out of the almost nine months he's been home...and they all were due to a slight cough or heavy sleep. Still, no bites. I wish I had the money to counter what the DDD is willing to pay. Better yet, if our private insurance was still footing the bill we probably wouldn't be in this predicament anyways. So, we wait and continue to throw a line until we get a bite.

Good news is that Tre' is in the medical day care program!! Woowhooo! In the beginning he didn't like it and having him out the house was weird but I'm getting use to it and he's making new friends (that's a great key point in development). This kept him from returning to the hospital but he will still need night nursing. I can see a change in him already and he's been there for only a few weeks now. I was told how impressed they were with his improvements with all he had to go through. He still has work to do but everyone see a lot of possibilities. That's all I needed. Someone else to see what I know.

This also makes me feel better because he hasn't been getting therapy for a couple of weeks. We fell behind on a few co-pays and they have suspended our service until we come up with $350. Trust me it's only a few co-pays, too. It's amazing how these programs figures out who pays what and when without looking at the whole picture. Thanks another story that I don't want to get into right now.

He's been doing SOOO WELL with sprinting that the doctor wrote the most drastic order, yet! Drum roll, pleeeeeeeease: Tre' is allowed to be vent free during the day!!! Who want test me!!! Buck buck buck! LOL From 7am to 11pm he is not on the ventilator AT ALL! I have been pushing him from the last order of four hours twice a day. Instead of four, I'd monitor and push him a little along the way. His entitles and saturation was never in any danger. I honestly thought that the doctor was going to stick to the “program” or make minimal changes if any. He turned around and brought us to a half way point of this long race we're in. This is so unreal to us. I can't wait to take him to the grocery store, park, SOMEWHERE vent free.

If that wasn't promising news, Vic asked the doctor to guess/ use his gut feeling, if you will, as to when Tre' will be decannulated. He thinks, Tre' will be decannulated by NEXT SUMMER!! We have to take RSV season into account. We are soooo pleased with his progress. It feels great to be where I am with him right now. We're still working on him putting pressure on his legs, tummy time (Vic has been doing wonderful with him), and oral feeding. Currently he hasn't been receiving therapy for the pas few weeks because of finances but he'll be back in gear soon!

Oh yeah, guess who can say ma, and mom?!?!?!? LOL Yes! Tre' has said his first word! I've always heard people say that babies say dad before mom. I don't know what that's about because it obviously not true in this family.

I've been working a little ok a lot harder with his speech therapy. I have successfully got him up to 60cc and attempting to sip from a cup. We bypassed the bottle (it just wasn't working out) and are partial to a sippy cup. He's not actually drinking because that's learned. He puts his mouth on th cup (because he knows it gos there) waits for the drink (I think he likes the feeling of the liquid on his lip) and when I pull the cup away he does consume “some” water, juice, or soda.

Keep those prayer coming!

We would like to say a special Happy Birthday to his twin cousins. We'll try to make the birthday party this Sunday. Although Tre' HATES Dora, he'd go just for you two. Your cousin Tre', Auntie Anie, and Uncle Vic love's you, dearly.

Now that you are out of my life, I'm so much better

2007-06-08T02:23:00.000-04:00

So, this is the thing. Bayada apparently got sick and tired of everyone questioning and requesting a schedule. Instead of them supplying, they put in a claim that “I” have been denying/ refusing nurses. It didn't take a genius to figure out the lie, though. Why would I be so desperate for a schedule that I'd notify his doctors and write a letter to the company, just to turn around and deny them? Sure having a nurse in your home isn't peaches and cream, but with Tre` being trached and vented, it's necessity. There's errands, Vic's job, and I am going back to school. How or why would I turn the only help I can get away, duh!!!

Basically, they are trying to save their behinds. From what, is a mystery. I'm not familiar with the laws in NJ that would/ should protect families like mine, and it's a shame. Whenever I start asking around, I'm advised to try to find nursing or a daycare that's equipped for my son. Urrrgh! I have a funny feeling about this. Why else would they tell such a weird like, like that? I have too much at stake NOT to have nurses. I even dealt with the wacko for as long as I could. Just doesn't add up.

They never completed the June 8th deadline, either. While talking on the phone with his pulmonologist, I missed a call from Bayada. It was the person responsible for this whole thing. The assistant that creates the schedules. I haven't spoken to her directly in MONTHS. She's always busy or conveniently steps out. Anyway, she left a message on my phone saying that she had a nurse for us and to call when I received the message. I call back, no answer. I called the following day and was utterly surprised that she answered. She said MNOP (the crazy wacko nurse) was just released from the hospital and she will work tonight. Then there was a pause. I'm almost certain that she wanted me to say, “Oh no, she just got out the hospital? No, no, she shouldn't work.” Riiight... I said, “Ok, what time should I expect her.” She choked and stuttered a, “huh?” LOL I repeated myself and she old me 11p to 7a. An actual surprise to me was when I called Vic, while I was on my way back home from K mart. It was around 10p. He said someone from Bayada called and said MNOP was just sent back to the hospital so she won't be in. I couldn't believe it.

So after talking to his pulmonologist about the situation, yet again. He personally informed me that we will have to put him in the hospital for a few days if there's no nursing or daycare. It's a shame I don't have the time to interview nursing agencies because where working on a wire, now. Having wacko made me A LOT more leery. So anyway, I'd have to see if they accept our insurance and/ or waiver and take them. This is soooo not fair. On top of that a lot of the agencies either don't service my area, don't have nurses experienced in trach care, or they don't accept the insurance programs. Urrrgh! I'm supposed to wait for a list after paperwork and/ or referrals are made. That takes how long???

Before I completely lost it I was introduced to a daycare they specializes in trached, tube feed, and disabled kids!!! Yaaaaay wooooohooo. They even have transportation if needed. This is JUST what we needed. I just have to make sure my classes won't run past 4pm. I hope I'm able to check them out today or Monday. From there, will be a home evaluation, standard paperwork, and he's in!!! His therapists can see him there, too. It's fairly new and spaces are already limited so we have to act quickly. That won't be a problem. As an added bonus: (drum roll) we won't need a nursing agency if he has day care. PLUS, he'll get to interact with other kids. AAAAAHHHHHHHHHH I love it. I'm sure his first day will be hard for me but this is just what the doctor ordered...literally.

It's been a rough week but things are starting to look up. Now I have Desiny's Child song in my head...and I'm loving it!

Breaking Up Is Hard to Do

2007-06-04T22:46:00.000-04:00

Here we are the second week in June and we have not received our June schedule. This is actually common so we thought nothing of it.

Last night, while going though mail I realized that we had a letter from the nursing agency. From time to time we do get mail with a claim that they’ve tried to call me but didn’t get through. It’s funny because every other week I have to remind them of my home phone number AND it’s a Vonage account so I can see who called me, who I called, and listen to my voicemail online. Anyway, I opened the envelop and there stood a letter from Bayada stating that after June 8, they can no longer comply with the scheduling contract and they are backing out. Nothing like a break up in a letter! LMAO

I’m kind of mixed up with this one. At first I was elated that I don’t have to listen to a certain nurse make suicidal treats. This was the LAST thing I needed to deal with. My son is one thing but trying to keep a grown woman alive is not/ was not my specialty and I never claimed it to be. So, we were happy that we can have our house together as a family and “take care“ of our son with some normalcy, you know.

It didn’t take me too long to realize how serious this really is. To begin with, who am I to call is something bad happened if Vic is at work and I’m home alone? I don’t believe we have a situation like that in our future but what if? Another thing that bugs me out is, what if Tre` was very sick? Is this something that they do when they have children chronically ill? This isn’t right!

They said that they were giving me until June 8 with them. I have no back up company as of yet. I DO NOT want my son to have to end up in the hospital because of what Bayada did to me. Abandonment? Maybe? I’m worried that this is something they will do again if not before us. Urrrgh!

A copy of the letter was sent to two of his doctors that has ALSO tried to get coverage. We are not to make any changes until things are resolved. I’m so pissed I can’t even update.

You HAVE to stay home!

2007-06-01T02:49:00.000-04:00

We were seen by his ACTUAL Speech Therapist. She seems ok, nothing to get excited about. She couldn't get him to eat a bite. I did warn her that he is extremely strong and determined as I do any new comers even though I know they'd like to test the waters a little. That's not a problem cause they've been warned. In time, I'll need a Beware of Tre` sign up on his kid cart and bedroom door. Too many times nurses tell me how he scratched, hit, or pulled something. I don't think it's intentional, I think he's just having fun and he doesn't realize his strength.

Anyway, ST was in her "getting to know you" stage. She wanted to build trust between him and her before she shoves food in his mouth. They played with the Z-vibe a lot. Like his noonie, he'd only us it if HE puts it in his mouth. If you try to put it in his mouth yourself, it would be a fight to the finish! Since she wasn't getting any success with feeding (she even tried putting dabs on his toys), she asked to see how I've been getting him to eat. We did great. I made eating fun not a choir. We laughed and played the entire time. He gagged only once because he's still not used to the whole thing. He finished his quota in record time. I was given pointers like pressing down on his tongue not up and bringing the spoon to the corner of his mouth. In time, well get it.

I gave pulmonary his weekly report and desite the nursing care they've decided to increase his sprinting by an hour. Can I get a WHAT WHAT!!! LOL That's four hours twice per day. Soon enough he'll be off during the day and only on the vent at night. Before I got too excited she did inform me that if we don't get adequate nursing his trials would have to be done in the hospital. What this means is that he'd have to go BACK to the hospital for a few days. I get upset just thinking of it. I don't want him to go back. He just came home..

What sucks right now is that Tre` is being seen by ST ad PT only. There isn't a DI or OT to follow him. I'm not exactly sure why, either. If ST and/ or PT has time within their session, they'd provide some developmental intervention (DI) or occupational therapy (OT). He gets therapy once a week for each therapist. Is this even right?!?! How is THIS supposed to work if he's this far behind?!?! Urgggh!

Here is a thumbnail (picture) of him taking a bath while off the vent! Yay for Tre`.

He's Getting Big, While We're Getting Busy!

2007-05-21T16:40:00.000-04:00

So Tre` had a well visit today and we have a lot of following up to do. We should schedule an appointment for neurosurgery. He’d like them to investigate the flatness of his head. During his hospital stay, he spent most of his time on his back. Poor guy. His doctor “expected” his head to have rounded by now. As of now it has rounded because he’s a lot more mobile. He spoke of a possible helmet but we’d cross that bridge when we get to it.

His doctor also recommended a pediatric surgeon for inguinal hernia and hydrocele. These returned shortly after his initial surgery and I don’t know why. I have heard of the possibility but not to this degree. It’s not grossly enlarged or appear to be uncomfortable but it’s there and noticeable.

Periodically Tre` would cross his eyes when he’s excited. I don’t know if it’s shunt related or his nervous system. We’re going to have his ophthalmologist take a look.

He has four teeth at the bottom and four up top. They all came in discolored. It’s a green yellow tinge. On one hand it’s a possibility of prematurity. Another hand shows medication side effect. And hovering over us is possible reflux. In the end we’d have to see a dentist. This is going to be interesting. This child of mine HATES for someone to be in his mouth.

Growth

Weight

27.2 lbs.

75 percentile

Height

30"

10 percentile

Head Circumference

48.5cm

80 percentile

Today he wore a BRAND NEW 24mo outfit. Today will be the last of 24mo. I'm on a hunt for 2T now. Goodies, he's just getting bigger and bigger. I guess kids are supposed to do that, huh. I mean COME ON, an 18mo shirt makes him look like a brown Pooh Bear. Oh bother!

Progress? Report

2007-05-17T03:50:00.000-04:00

So, Tre` had his six month review for an Early Intervention Progress Summary. He has been receiving Developmental Intervention (DI) and Physical Therapy (PT). DI and PT have been sharing the responsibilities of Speech Therapy (ST) but he hasn’t been provided with the services until now. I didn’t like the idea but they felt as though they were equipped enough to do the job. With our efforts he has been tolerating oral stimulation and up to 30mls of baby food. Tre` can stick out his tongue, do raspberries, make clicking noises with his tongue, and babbles. Now, this may not impress he average mom with a 16 month old but it would to a mom with half the issues my son has.

He still fights and gag with food but it’s a lot better it was when he first got home. I’ve been giving him Gerber Graduates, lollipops, and using a Z-vibe religiously. He’s getting better and better at it. At times he’d just pay with it. I’m not sure if he gets the concept of food as of yet, though. HoWeVeR!!!! Last week we were all hanging out in his room watching TV when I wanted a Drake’s Devil Dog. I put it in his face and he OF COURSE frowned when it touched his lips…but he didn’t gag. I put it to his mouth again and he licked it, then he opened his mouth a little for it. This lasted for some time.

We’re also clapping when asked. Yay!!! We’d say, “Tre`…clap clap.” First he’d most likely smile or blush (yes, guess who decided to be shy overnight) then he’d clap. He’s very consistent with it, too. I’m working o getting him to wave, now. Tre` has mastered the "No" syndrome. Whenever, he doesn’t want something or refuses, there is no hesitation. Note to self: teach Tre` yes.

Area of Development

Communication
6 months with scatters to 10 months

Cognitive Development
9 months

Gross Motor Development
3 to 5 months

Fine Motor Development
9 months

Social/ Emotional Development
9 months

Adaptive/ Self-Help Development
Unknown...for now

It appears that the therapist would like to blame his trach for the most part of his delays. It makes since because he's attached to a vent and unable to explore as much as a child his age should.

I know you can hear me, sweetie.

2007-05-16T01:47:00.000-04:00

We made it to an appointment on time. Yay!!! When I set his appointments I put them in Microsoft Outlook’s calendar. Well since we have such a hard time getting to our appointments, I put his appointment in for an hour prior to the actual scheduled time. As luck may have it we arrived to ENT (Otolaryngology) a half hour early! He had a bronc (laryngoscopy) done and ENT found some laryngomalacia. This was expected and common. She couldn’t tell the extent if any tracheomalacia because the tracheostomy was in the way. She did find vocal movement, however the left vocal cord may not be fully mobile. He does make sounds around his trach without a speech valve. Even though ENT was unable to make a conclusive diagnosis, because she couldn’t see above the vocal cords and below the trach, he was given an 8 out of 10. 10 being great. We’re going to do a follow up appointment in about six month (or when he’s off the ventilator) where they do a more invasive bronc, called a bronchoscopy, whereas, he’d be sedated.

While we were visiting ENT, he also had a hearing screening done. We are aware that Tre` does hear (the child is NOSY and NOTHING gets past him). However, the person administering the test, felt as though he may have possible fluid built up, which is common for ventilated kids. It was heartbreaking to hear and walking up that hallway to the soundproof room seemed so hard to do. He was extremely moody and didn’t want to participate in anything. He was tired and having a bronc was not his most favorite events. He fought the entire time. She didn’t think it was far to him so were going to reschedule that appointment as well. If it’s done on the same day where going to do the hearing screen first.

My thoughts: I know he can hear. Again, he’s very nosy and certain frequencies even scare him. It’s just a little nerve wrecking to hear yet another problem (possible) has been found.

Happy Mother's Day

2007-05-13T19:49:00.000-04:00

I thought I would take some time and share what Vic and Tre` did for me. Turn your speakers on and hug your kiddos.

Still in the race!

2007-05-08T01:11:00.000-04:00

So, Tre’s pulmonologist wrote an order for him to sprint him twice a day. He is supposed to sprint once for an hour and the second time is a half hour. These orders were written two weeks ago. Well he has been doing incredible!!! Other than increased secretions; which are typical for a beginning sprinter, he’s been handling it better than expected. We are supposed to make changes every week. I am supposed to call pulmonary and give them a progress report and discuss possible changes, appointments, etc.

One day out the blue (last Thurs.), I was home doing a second sprint and wanted to increase it to 45 minutes. He aced it. I was so proud of him and he knew it! We were even more ready to push him because Tre` decided that he wanted to start to play with his trach tubing. Believe it or not but he never bother it before. Now I find myself jumping when he grabs at it. There are so things that can go wrong with him doing this. In addition the ventilator, he’s also has a heater humidifier. Basically, it adds moisture to his airway…and where there’s mist there’s condensation. Sometimes there’s a significant amount of water in his tubing so when he swings the tubing or lifts it over his head the waters has but one place to go. The water goes straight down his trachea/ throat. Then we have aspiration!!! It’s happened once. I try to give him something else but he’ll ignore my pleas or take what I have and eventually toss it and turn his attention back to the tubing. Uuuugh!!! While playing with the tubing he also begins to cough/ choke sometimes until he vomits. Did I say uuuugh?

This past Saturday, Victor and I wanted to watch the Mayweather/ De La Hoya fight (Yup, I’m a boxing fan) and we wanted to take him in our room while he sprinted. Victor, Tre`, and I laid in the bed with his pulse oximeter. As his hour approached, I was pleased yet again that I wanted “to see what he can do.” I checked him out and he was happy, comfortable, and not too junkie. I wanted to give him a little nudge. I exceeded his sprinting time and we had him off the vent for 2 HOURS!!! Victor wanted to put him back on because it was past his bedtime and he felt he was off long enough. He was right. I didn’t want to overdo it but in all honesty the temptation was there. Victor and I agree that he’s making great progress with this and he might kick the vent by the end of the summer!

And now the bad news! In my opinion, Bayada (our nursing agency), are a bunch of incompetents!!! There I said it. I can never get reliable nurses and coverage. I’m almost at my wit end with them. At this point I’m trying to be cordial...I NEED to be Dwana. We went from having a pretty good schedule with about five or six nurses. Then the person that is SUPPOSED to assign nurses up and stopped leaving us high and dry. Each call was one excuse after another. We had two nurses after that. One wasn’t reliable. She was either unsanitary or wasn’t confident in her care. She’d literally scream for help if he had a wet burp. I remember banging my knee on the doorway to run for him. Then there’s the last nurse. She’s mentally unstable, whereas though she becomes extremely emotional on any given Sunday. Every few days I’m fortunate to hear about how she wants to commit suicide. Great, I just need this with everything else going on. Thank you ma’am! Can I have another?

Now with the nursing care as it has been, I made sure I notified pulmonary. They are going to try to help us either switch our agency or receive better care and attention; maybe both. Without this, pulmonary will make smaller strides. They would feel more comfortable if I had nursing care (or a second pair of hands) during these changes. Victor can do but so much because he works far from home and by the time he gets home, the day is gone. They wouldn't OK more than 2 hours twice a day.

More good news, we’ll manage!

Not Enough or Just Right.

2007-04-18T13:09:00.000-04:00

I’ve been working hard with his ST, PT, and OT. I feel like I’m getting NO WHERE. I suggested that he’d receive therapy (PT and OT) twice per week instead of once and they suggested that I try harder. That wasn’t her exact words but that’s what she meant. I have no idea what else to do. I work with him until we’re both tired or he gets aggravated. I feel so helpless because I want him to strive but the progress, in my opinion, are slim. I don’t, won’t, can’t give up on him. I’m just frustrated. Am I doing enough or should I just be more patient? I want him to be able to walk, crawl, etc. However, if he is unable, I’m okay with it. I think he’d be able to but I don’t know when.

Tre` has officially become a one year old. His due date was April 16, 2006.

Lastly, we are walking in the March of Dimes WalkAmerica on April 29th. I haven’t raised nearly as much money as I’d like to. If anyone can, please make a small donation by clicking here.
www.walkamerica.org/TheSmithCrew

What is Easter?

2007-04-08T15:46:00.000-04:00

Easter is the Christian celebration Jesus Christ's Resurrection of life after his Crucifixion. Candy, toys, and colored eggs are fun but Easter has much more meaning than that.

From the Word:
Luke 24 (New International) BibleGateway.com

The Resurrection

1On the first day of the week, very early in the morning, the women took the spices they had prepared and went to the tomb. 2They found the stone rolled away from the tomb, 3but when they entered, they did not find the body of the Lord Jesus. 4While they were wondering about this, suddenly two men in clothes that gleamed like lightning stood beside them. 5In their fright the women bowed down with their faces to the ground, but the men said to them, "Why do you look for the living among the dead? 6He is not here; he has risen! Remember how he told you, while he was still with you in Galilee: 7'The Son of Man must be delivered into the hands of sinful men, be crucified and on the third day be raised again.' " 8Then they remembered his words.
9When they came back from the tomb, they told all these things to the Eleven and to all the others. 10It was Mary Magdalene, Joanna, Mary the mother of James, and the others with them who told this to the apostles. 11But they did not believe the women, because their words seemed to them like nonsense. 12Peter, however, got up and ran to the tomb. Bending over, he saw the strips of linen lying by themselves, and he went away, wondering to himself what had happened.

Use To Be Impossible

2007-03-31T03:03:00.000-04:00

I have some relief now that we’ve started sprinting. This is just the beginning but at least we have a starting point. I can remember last year in July when he went into RD (respiratory distress) and they increased his ventilator settings significantly. A fellow in CHOP told me that not only did he see my son being vent dependant for the rest of his life but he couldn’t see him on minimal support again. That was then and this is now. My baby has been doing things that many thought we’re impossible. Anything is possible through Christ and NOTHING is impossible.

He’s a happy baby: ticklish, funny, and lovable. Although he’s trached, he has his own signature laugh. If anyone was to see how much he cracks himself up, I can almost guarantee followed laughter. When he’s happy, I’m happy. Sometimes we just laugh at daddy together or even laugh at each other.

We are working hard on his feeding skills and trying to get him to put pressure on his legs so he’d be able to walk and/ or stand. Right now he has a huge piece of equipment in the middle of his room (taking up a lot of space) that is supposed to keep him in a standing position. This is so he’s use to the position. He’s strapped in over his chest, his stomach, and both legs. He HATES it. I’m a bit teary eyed when I see him in this device because he looks so helpless and of course no one wants their child to have to go through that. If that isn’t bad enough he also has a new pair of leg braces. He doesn’t wear them often though; just during therapy.

He had another appointment yesterday. Yes, I know. We had to get his G-tube placed, though. We showed up an hour late and the nurse was annoyed with us. She said, “You’re late. Next time can you call and be a little more considerate. I mean you WERE late.” I gave her a quick uh huh/ yeah and Vic and I continued on. We’ve had to wait longer for them before and that long trip to get there wasn’t comfortable.

The doctor though his site looked GREAT and whatever we’ve been doing she’d like us to continue.

a burst of speed at any point during a long race, as near the finish line.

2007-03-29T21:17:00.000-04:00

The appointment started off on a bad foot. We were supposed to be there at 12:30. HOWEVER, we were running late as usual. I think we’ve made it to two doctor’s appointments on time since he’s been home in late October. It’s a matter of getting him, his equipment, and the two of us out the door. This can honestly take up to one hour. Even if we try to get there early, time is almost NEVER on our side.

Anyway, we got in the office at about 1 o’clock. The waiting area was barely empty but the wait was out of hand. We didn’t get to see the doctor until 3 o’clock. We went over the basic medication and follow up of his last visit. His pulmonologist went over sprinting and the steps leading up to sprinting. I had a better understanding but it started to seem as if he wouldn’t sprint so soon. He wanted to talk to his team and see what their opinions were. In about an hour the room was full with his team including the dietician.

The attending physician began to examine him while another attending spoke with me, and a fellow disconnected him from the vent. I said a little prayer while I’m trying to answer questions. Vic was on the same cloud as I was. I could tell that we were both pretty nervous but we held it together. While they all were looking at Tre’, there was a brief silence. Our attention went directly to the attending and fellow because they were having an inaudible “conversation” with one another. One would mumble and the other would smile. Then I heard, “He doesn’t even care.” Hand movements, mumbling, and smiles. Then the fellow asked me, “Well mom what do you think. “ I had no idea what they were talking about and I made that known. He said, “Well we’re going to BYPASS CPAP all together and sprint him off the vent for one half hour once per day. He might make more changes within days and then weekly. YAY! We couldn’t comprehend what they were talking about because we were more focused on Tre`.

I am so proud of Tre`. He did great. He weighs 25lb 2oz and 71.9 cm

The Day After Today

2007-03-28T17:25:00.000-04:00

I have NO idea what to expect for tomorrow. I can’t even explain how I feel right now. I tried to get some kind of understanding about sprinting from other mothers of children with tracheostomy and vent dependency but my feedback was next to nothing. I really don’t know or understand why but I’ll just deal with the unknown like I’ve done in the past.

I don’t want to get myself overly excited but the thought of my child off the ventilator is kind of…well…exciting. The weather has been beautiful and because of his equipment, lack of nursing care, and RSV season, we’ve been in doors for the most part. I wish was able to just grab a diaper bag or two and head out the door. Thinking of taking him to a park and seeing his response to squirrels and birds puts a huge smile on my face. However, the thought of not being able to crushes me.

Even so, tomorrow, he might have a trial of sprinting. What this means, I have yet to understand.

Mixed Emotions

2007-03-26T22:27:00.000-04:00

I'm upset, I'm glad, I'm nervous!

It seems as though Tre` is getting sick. Ahhh!!! It started with diarrhea. His diet hadn't changed but I increased his water intake (via g-tube). Then as if his little bottom already had it's issue, he got his first diaper rash. This child of mine has NEVER had a diaper rash before so me being a first time mother I used every butt, bottom, cream or paste I can find. It's not getting better or worse, I think it's time to visit his pediatrician. Of course a diaper rash alone isn't emergent but he has also had increased secretions. They are white but thicker. In addition, he's been cranky! This can be from his teething but I'd rather play it safe. I want to at least talk to the doctor if a scheduled visit isn't made. I'd hate to have my child in the ill waiting room for his gums.

We're doing pretty good with his therapies. He's not walking, crawling, or enjoying tummy time but we are all pleased the therapy is more tolerable. He can sit up unsupported, reach for an object, copies me shaking my head "no" (which he loves), he's getting better at clapping his hands, and he takes up to 30mls (2 tablespoons) of baby food by mouth.

This week Tre` might have a trial "Sprint." I sprint can be described as number of hours on ventilator; ability to sprint off ventilator – length of time. I'm hoping he's well enough or not too sick to have this "trial." Daily, he seems to get better. Only time will tell. If he fails, that's okay. I'd know that he tired. I'm honestly a little ignorant of the entire process but I guess I'm just blinded by all the excitement.

I'm just short.

2007-03-25T17:57:00.000-04:00

We got word about the lab results and it was confirmed that he DOESN'T have a human growth deficiency. I tried to tell him that my baby is just a shortie
(just like his mom and a lot of people in our family) but as I said before I didn't want to fight it, too much. I just wanted it ruled out so we can move onto bigger issues. Issues like the ventilator and other matters to help him strive.

This is just a short update that I'll end now. I haven't been blogged as much as I should but I plan to change that.

Sweet & Low

2007-03-04T00:25:00.000-05:00

So, on Tuesday we went to CHOP for his Endocrine appointment. This was his follow up after seeing them in the hospital in August for a low blood sugar attack(yes, it took this long for an appointment). In August, they ran a battery of test, but could not find the reason for his blood sugar dropping to 9. He showed no physical signs of hypoglycemia – i.e. seizures, lethargy, etc. In his follow up visit the doctors considered his low blood sugar attack to be transient. They said that a transient attack is when the symptoms persist for a 6 month period of time and then they just disappear. So, with that said, the doctors said that they would recommend to his other specialist, that they now treat him as if he does not have hypoglycemia. This came as a relief to us!!! Since his low blood sugar attack (in August), he has been on continuous feeds. Only taking breaks for medication, therapy and bath time. We all want him on bolus feeds and off of the continuous feeds. Bolus feeds would simulate more of a normal routine. It would also give his little tummy a break, and advance his ST (speech therapy). So, our first step was to go to GI (Gastroenterology) and try to get him put on bolus feeds. This is where the run around starts. GI tells us that Pulmonary likes him on the continuous feeds, because it lessens the likelihood of fluid getting into the lungs. The only time this was an issue was when he was very young (Still in the NICU), and even then it was due to his lung disease and not his feeding schedule. After trying to contact Pulmonary for 2 days, without any luck, we’re growing a tad bit aggravated! Tre` has been on continuous feeds since August. Well…we were able to persuade his GI doctor to ok a bolus feed during the day at a rate of 70ml for 2hours and one hour off; still remaining on continuous overnight. This has been going on for almost a month and we’ve had no problems. His stomach hasn’t descended, so signs of distress, and stool issues associated with this change. So what’s the hold up?!?! I plan to call them (Pulmonary) as many times as I can on Monday to address this.

During his physical exam the doctor made mentions of his growth. At 13+ months, Tre` is 23lbs 10oz, but about 26 inches in length. This puts in a bit under for his length.

He will be tested for a human growth deficiency. I tried to explain that shortness runs in my family (I’m 5ft) but I didn’t put too much into it because I would much rather them rule this out so we can move on. I know he’s a shorty but I’d hate to add something new to his diagnosis list.

Never Give Up! Never Let Go! Don't Hold Back!

2007-02-26T15:13:00.000-05:00

Well I'm not even sure where to begin with this blogged but I promised myself that I won't be too long. Tre` is still growing like a weed. His last weigh in was 23lbs and 10oz. I personally think the scale was off because his pediatrician's scale is always different from his many specialist that follow him. He has an appointment at CHOP tomorrow and I'm almost certain they will weigh him. There has been talk of a possible calorie change and/ or formula change but I don't think this particular doctor has convinced the rest of Tre's team...including his momma! It's still up in the air though. I can't get over the fact that he's so big now. I find myself leaning against something when I hold him for long periods of time! He can in fact give you a workout!!!

Vic and I requested his bili levels to be checked because they haven't been done since October and it was music but weird to hear the doctor say, "Dwana, all of his levels are normal!!! This is amazing! I know you're happy but I'm happy as well." Everything after that was a blur because I was in shock! His (bili) liver was so damaged that his doctor spoke of a possible transplant and now to hear normalcy. They said it was impossible but I have to say NOTHING is impossible with God!!!

On July 27th 2006, Tre` went into respiratory distress. I remember that date because it is Vic and I anniversary. He was in need for so much support on the ventilator that days later a doctor told me he'd never get off his trach and he'll never be on low setting. I took one look at him and gave him a half smile. Oh sure, he thought I had to be crazy but the truth is I didn't care. I just said, "you don't know this boy." Before he could open his mouth, I just put up my hand and walked over to my Stinka Man. "They're always talking about what they know. What they THINK they know." From that moment it was just me and him in that room. The doctor said nothing else. He just left.

Tre` has been weaned dramatically since that date and you know what, I don't even have that "I told you so" mentality. It's not that I'm that type of person, I believe it was my first real walk with Christ. I can't explain it and I'm not going to try to either. All I know, and I tell all the lovely ladies of Preemie parent, these doctors were given jobs. Just jobs. They don't have the final say in ANYTHING. It took me a while to get there but it took me living it to understand.

The doctors said a lot of NEVER but I'm here to testify that ALL THINGS ARE POSSIBLE THROUGH CHRIST. He's laughing (oh boy can he laugh), playing, sitting up (I plan to post a video or image of him sitting up on a later date), and much more. If I believed what many of these doctors told me I wouldn't be here writing this blog.

I'm now from 16, down to eight hours a day for nursing. It has it good and bad advantages. Lets start with the good. I have my house to myself for 16 hours! I can walk around however I want and I can have uninterrupted family time. The downside is that we use the 8 hours of nursing for an overnight shift. During the day I'm home going nuts because I can't take a breather, leave the house, or run errands. Until he kicks the vent for good and were in the clear of RSV season, this is what it is. My longest streak was four days in doors.
Yeah, I can always leave when Vic gets home but I'll be so tired and stressed I
just stay in. With saying all this, I STILL wouldn't ask for more nursing care. I'm going to deal with this!

Now, there is a lot more to update but I have
my hands full.

The Hand That Rocks The Cradle

2007-01-30T11:50:00.000-05:00

I know that some of his nurses will be reading this but at this point…I just have to get this off my chest. Having a nurse in your home has its good and bad areas. It’s good because when you have an ill child at home that you can’t take to the grocery store with you, you’ll have a “babysitter.” You are also able to sleep at night. HOWEVER, it’s an invasion!

Having a stranger in your house means that she can see, smell, and hear everything that goes on in your household. There’s absolutely no privacy!!!
As a woman and a mother this has been very hard on me. I cannot stomach the fact that another woman is cradling, singing, and kissing my son. It sickens me that our time (mommy and child) is hindered by someone just sitting around watching or interrupting our precious time. While I’m sitting, talking, and holding Tre’; a nurse would put his/ her two cents in to the conversation. Aggravating.

One would think that I’m use to this because he’s spent so much time in the hospital. One can never be so wrong. In all actuality, it makes thing worse. I feel like I’m literally sharing my child. It’s hard to explain this but I feel as though nursing care takes away from my motherhood (womanhood.)

Taste of Success

2007-01-14T23:31:00.000-05:00

I’m so excited about Tre’s progress with Speech. He’s adapting to his therapist but I have honestly been over stepping her.

Let me explain, being that Tre` had an ET tube in for so long he was unable to take food by mouth. Even when he was trached he was either sick or had a terrible therapist to assist him with speech.

The therapist he has now is in her “just getting to know you” stage…I think. Basically, she gets him to laugh, then she’ll stimulate his gums (doesn’t like that too much), she’d make him laugh, and stimulate his cheeks, and then she’d introduce a toy of some sort and try to get him to chew on it. However, Tre` has already mastered that part. Hey, if she likes it I love it.

I periodically ask her when she plans to introduce food or formula to Tre` and she’d tell me that she wants to do this, that, and the third. That’s not a good enough answer for me so I decided to pick up where the last therapist left off. Saturday, I grabbed a medication cup, a plastic spoon (you know the ones that have a multiple colors in a pack and you can wash or throw them away), and banana flavored Gerber’s 1st Foods. I scooped out 5cc. Last time he had baby food he only took about 3cc of his carrots. I didn’t expect him to even think of trying this but I gave it a shot. With motivation he took all 5cc! I was ecstatic! Jumping up and down and praising him like he won the lottery. In a way I felt like we did. Today, after church, I took 15cc out and allowed the bananas to get to room temperature. He and I played then I repeated what I did yesterday (Saturday). Sure enough the boy took 15cc. I got so excited I wanted to try more but I didn’t want to press my luck. He’s not taking each cc easy. It calls for stimulation, motivation, and some trickery. Hopefully, in days or weeks to come I can starch one of those off the list. Even if she continues to take 15cc, at least he’d be more comfortable about being an “eater.”

I’m not exactly sure if I’m going to share this with his therapist as of yet. She doesn’t see him again until Friday morning. I have some time to think on it. Besides, I don’t want her to feel intimidated. They are doing great with what they’re doing and we’re doing great with what we’re doing.

Go Shorty It’s Ya Birthday

2007-01-06T23:16:00.000-05:00

Of course my first post of the year would have to be for his birthday! This day meant so much to me for so many reasons. Just the thought that he survived out weighted all the negative memories. Here are a few thumbnails.

Happy New Year!

2006-12-31T17:46:00.000-05:00

In order to get to tomorrow we have to make it through the night.

Always pray. Pray every morning that you do not live ungodly, that you will not mistreat yourself or your neighbor, pray that you will not become weak and discouraged for that day. Tell Him that you will hold on until tomorrow. When tomorrow comes you say the same prayer. Every night thank God for the wonderful things He’s done for you.

Don’t be bothered about yesterday, it’s already gone. There’s nothing you can do about it. And tomorrow isn’t here yet. Just don’t give up today.
Everyday is always today, my friends.

I’ll be back next year!

On this day.

2006-12-27T23:21:00.000-05:00

On 12/27/2005 I went to see my high risk prego doctor and he informed me that I would HAVE to go on bed rest to prevent more dilation. I told him that I been on bed rest this entire time. I may have moved around more than I needed to but I am already on bed rest. That’s when the ball dropped. He informed me that I would be on hospital bed rest.

Scared, nervous, confused I started to think of how I can either talk him out of it or fix my problem. I was already too late for a cerclage. He said that Vic and I would either drive across the street to the hospital or he could call an ambulance.

This was the last picture I got of Tre` with an U/S.

I cried for so many reasons. I cried because I was scared. I cried because I knew no one will stay with me. I cried because I hated hospitals. I cried because of many things. I even cried because I cried.

Vic took me to the hospital where I was admitted into antepartum. With all my crying, hormone going from left to right, and feeling “pressured”; I had an instant attitude. I was mad at Vic because I felt he wasn’t as moved as I was, I was mad a the doctors for not “fixing” this before it got out of hand, I hated myself because I got up to go to the bathroom too many times, I was mad at the nurse that kept talking to me. I was mad because I was mad. I demanded that I had my own room. I was in no room for company and I think I made it clear.

Once my room was together I lay in the bed and asked Vic to close all curtains and blinds. I didn’t want to be reminded that I was now a prisoner or that I was in the hospital. Those curtains would remain closed until my departure.

At first we were quiet. He didn’t say much to me and I didn’t say much to him. Partly because I wanted to be comforted. To no avail we stayed silent until nurses, doctors, student, house keeping, etc. Came in with a bunch of questions.

Once the doctor from the NICU came to visit me and spoke of a survival rate by heart skipped a beat. The term “rate.” echoed like, “yeah rate as far as a measurement, a part, a ratio, not everything!” We immediately went looking for survival rates and from what we saw DIDN’T look good.

A pregnancy that I loved so much was starting to seem like it will be over soon and I would have nothing to show for it. I had no huge belly, swollen ankles, baby shower, etc. None of that. I wasn’t even pregnant long enough to get the standard glucose test.

On 1/6/2006

I could go on and on about my NICU experiences and adventures in antepartum but I’ll save that part for later.

Merry Christmas

2006-12-25T17:26:00.000-05:00

Please remember that Christmas is not a holiday but a celebration of the birth of Christ.
Happy Birthday Jesus!!!!

Secret Santa

2006-12-21T12:05:00.000-05:00

Last night when DH came home we greeted each other with love and he proceeded to put down his laptop and take off his jacket. He went upstairs to play with Tre` while I came into the office to get all the phone numbers and information needed to make doctors appointments, insurance calls, etc. Once I got everything together I went into Tre’s room to watch him and his daddy make faces and “coo” at one another. I LOVE to see the two of them interact with each other. I love the boys.
Click on these thumbnails.

Shortly after playing with Tre` he went to walk then feed the dog. Out the blue we heard BOOM BOOM BOOM. Someone was knocking on the door. I heard Vic open the door then I heard nothing else. I walked the office, cautiously. I don’t know why but I didn’t know who was at the door and didn’t know if I wanted to know. Anyway, so I went to the door and seen Vic standing outside dumbfounded with a laundry basket full of “things.” I went outside to get a better look and I saw wrapped and unwrapped Christmas gifts, household items, etc. I asked him where it came from and he said that he didn’t see anyone. I looked around but he said that he saw a car up the street start up and drove off.

He brought the basket inside and we immediately inspected it. Just to name a few items: a two foot Christmas tree, ornaments, a wrapped gift for “dad” from “Santa”, a wrapped gift for “mom” from “Santa”, wrapped gifts for “baby” from “Santa”, a Christmas card with a gift card enclosed, toiletries, food, Christmas themed kitchen utilities, etc.

I have no idea who could have done this but it REALLY made my day. I am forever grateful for this. God has been good to me.

Here’s the basket

The Great Escaped?

2006-12-20T17:37:00.000-05:00

He went for his synagis, flu shot, and physical yesterday. I felt so bad for him. I have been in the room with his during a few procedures and seen blood flowing. I even check his blood sugar! Once I seen the needle, I immediately closed my eyes and braced myself. As soon as he flinched I flinched. I held him the entire time!!! He cried and to rebuke from embarrassment I just kept silent. I wanted to cry with him. During his visit the doctor recommended additional specialist to follow Tre`. Oh great. Luckily, he didn’t think anything was wrong but he wanted to see that everything was ok.

He’s putting on weight but he’s still a gnome. He weighed in at a hefty 19.6 pounds and 26 inches long. I think he’ll be an elf for next Halloween. I have to grasp a good chart to see exactly where he stands.

We might have more time before we have to choose between opting in or out of the Nissen Fundoplication surgery. I’m not sure if I can say they we escaped this one or not. With his reflux during his MILK scan showing 30x the doctor originally said that he, meaning Tre`, is ready for a nissen. He met with his colleagues and it was decided that they make altercations on his medications and introduce a new med named Bethanecol. Bethanecol is supposed to help with reflux as well as his floppy airway. I have tried to look into this new med and this is what I found. I'm sure it's used for other things as well.

Bethanecol: A slowly hydrolyzed muscarinic agonist with no nicotinic effects. Bethanechol is generally used to increase smooth muscle tone, as in the GI tract following abdominal surgery or in urinary retention in the absence of obstruction. It may cause hypotension, cardiac rate changes, and bronchial spasms.

We had an evaluation for his PT, OT, and Speech from EI but we haven’t gotten any word of when and where it shall begin. People keep saying to be patient and that’s what I’m going to do…for now.

He’s having a great day besides this off and on crankiness due to teething and having shots yesterday. I think it’s time for him to wake up from his nap so I gotta run!

How The Stress Stole Christmas

2006-12-18T23:49:00.000-05:00

Last year around this time, the exterior of my house would be covered with bright white blinking lights, green garland, and big burgundy bows. Inside our home you’ll hear The Temptations Christmas playing loudly. In addition you’d find EVERY room; including the bathroom decorated with burgundy, gold, and some green.

Today, I walked around the house and I heard no Christmas music, no blinking lights, no puffy ribbons, no burgundy velvet bows, no gold trimmings, nothing. I wanted my son to really experience Christmas and what his mom and dad use to take the time to do together and create a masterpiece. Oh yes, I pride myself on how well our home looked for Christmas. To me, our home looked the best I’ve ever seen, INCLUDING in magazines. However, today I saw no happiness but emptiness.

Christmas time for me isn’t so much about the décor. It means so much more to me because it’s the birth of Christ my Savior. This is just a reminder to me how much stress we have been under. We haven’t had the time to set MORE time aside for ourselves.

Ok, I’m getting mushy again so this must mean it’s time for me to go.

If it’s not one thing it’s another

2006-12-17T22:38:00.000-05:00

It’s been almost a week since I’ve posted. Tre’ has had two apnea episodes in a week’s time. I don’t know if it has anything to do with his heat moisture exchanger or not but both episodes accrue after he has been off his vent heater for a long period of time. He never dropped his saturations below 97, his HR stays baseline, and he’s showed no signs of distress.

His vent monitor kept ringing apnea, repeatedly. I suctioned him once and got nothing out. That’s typical. However, I suctioned him again using saline and I pulled a small mucus plus out his trach. Once I reconnected him the apnea alarm desisted. This happened BOTH times. I have notified his doctor and explained everything. He’s more concerned about the apnea than anything else. That’s rightly so but we still don’t know why it has happened or if it will happen again. Still, he cannot explain it and his only suggestion was to “watch.”

For the last 24 hours (or a week after apnea episodes) his monitor has been registering him deSating into the mid to lower 80’s. Again looking at him he looks “pink.” He’s moving air, no nose flairs, happy, just fine. His nurse said this morning said that she noticed theses deSats only during coughing spells that may be related to reflux. I can take that into consideration because he refluxed 30x during his MILK scan on the 11th. HOWEVER, during these daSating occurrences, I observed no coughing. This really boggles my mind. Just looking at him, he looks essentially normally but his monitors tell me a different story.

Within the next two weeks, Vic and I will have to discuss another possible surgery. Apparently, the results of his MILK scan gave his doctor grounds to call me and make a suggestion of a Nissen. This was something we have been trying to avoid for sometime now. When he got his G-Tube his then doctor recommended a Nissen but no other doctor found it necessary at the time. Now that the term Nissen is back and haunting me, I find myself “drowning.”

He has had so many surgeries and while some may think I’m use to them, I am not. I never have and possibly never will. This is my son I’m talking about. He’s a part of me. He’s my flesh, my blood, my only son, and I am his only mother. I feel helpless. My baby can’t tell me when something hurts him and I could barely hear his cries above his trach. Before I get too emotional, I will leave this as it is..
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Tummy Time Vs. IVH Grade IV?

2006-12-12T16:53:00.000-05:00

Tre` doesn’t really like being on his tummy, anymore. When he was smaller he’d LOVE being on his belly. If it was left up to him he’d live there no questions asked. After his trach, he was put on his belly a lot less because he needed to “adapt” to his new form of breathing. Then after the trach came the G-tube and he needed to “adapt” and heal some more.

Today, if he’s put on his belly it’s a fight to the finish. He would only last about two to five minutes TOPS before he cries and fusses. I’m talking REAL tears!

He’s way behind in the tummy time so much so he can’t lift his upper body and he barely turns his head in this position. I have been trying him out more and more but I’m not seeing any improvements. To make matters even worse I don’t know if we’re talking late development or his brain injury, hydrocephalus (IVH Grade IV/ severe).

It’s not easy when you don’t know. I’m constantly doing research on IVH Grade IV, but I feel like I’m alone with it. Luckily, not too many kids have this grade of brain bleed.
I found a somewhat detailed summary of Grades I through IV.

Intraventricular Hemorrhage

How will I know if my baby will have long term problems?

This can only be determined over time by monitoring his/her development. For this reason it is important for premature infants, especially those with IVH, to have their development followed carefully after discharge. Serious abnormalities that may appear are:

motor (movement) problems:
tight or stiff muscles
slow to crawl, stand, or walk
abnormal crawling, toe walking
moving one side more than the other
frequent arching of the back (not just when angry or at play)

slow mental development:

does not listen to your voice by age 3-4 months after hospital discharge
does not make different sounds by 8-9 months after discharge
doesn't seem to understand or say any words by 12-13 months after discharge
seizure also called convulsions
deaf
blind
Less serious problems appear more slowly, are more difficult to detect, and may not be obvious until preschool or grade school. These can include:

poor coordination or balance
specific learning disabilities (math or reading)
very short attention span
behavioral problems
difficulty with activities that require coordination of the eyes and hands, for example, catching a ball or copying a simple drawing
need for glasses

I’m the type of person that just can’t leave things alone and accept what has been told to me. While he was in the hospital they told me that he may not walk, play, etc. They were wrong about a lot of things besides they aren’t his parents and obviously they don’t believe. I am praying that my son lives a comfortable life. Not to accommodate me but to allow my son to thrive and grow for himself. I said in a prayer that I will take my son anyway I can have him…alive. I still stand by my word with that, too. I believe he’ll catch up. Better late than never.

Click on this thumbnail. We have 2 trouble makers!!

Apnea?

2006-12-09T11:41:00.000-05:00

So, Wednesday the 6th, Tre` had a GI appointment. We were supposed to get there at 1:30 and ended up getting there at 3:15. It’s hard to get all of his equipment and him situated when we go out. We have a Go Bag, which consist of trach supplies, first aid equipment, etc. It’s about the size of a standard carry on. Then we have the diaper bag, his wheel chair, a portable suction machine, PulseOx monitor, his vent (which weighs a ton and has to be carried by one person while the other carries him. ), a toy (it’s a necessity), and Tre`. Not to mention the fact that it was cold. All this has to go WHERE EVER he goes. We don’t take the heater; he wears something called a heat and moister exchanger. It’s supposed to keep the airway moist and warm so his secretions aren’t thick and plugy.

He got a MIC-KEY button placed instead of the standard G-Tube. We weren’t sure if it was a go because his stoma had to be dilated twice already in preparation for the MIC-KEY. The doctor took one look and said it was a go. Surprisingly, he showed no signs of pain. It went in smoothly with very little blood. I like it a lot better because it’s less likely to get pulled as Tre` learned to do. It’s also less noticeable to onlookers.

We got home at about 7:15. I stayed inside to undress and change his diaper while HD went back and forth unloading the truck. His vent alarmed apnea. I lifted his shirt to see what was going on. His PulseOx monitor had his SATs at 100 and his HR 150’s. Looked great, however, he was pulling a lot more. I started to talk to him to get some reactions and again he was fine. The alarm kept ringing apnea while his rub muscles went up and down so hard I can clearly see his stomach, liver, and spleen (enlarged liver and spleen from damage).

I called out to my DH. “Hey Babe.” He didn’t respond. “Babe!” I was more annoyed. “Yeah, what’s up?” He finally heard me. “Wash your hands and come in here.” I said. “Is everything ok?” “His vent is reading apnea, honey.” So he ran upstairs and to the bathroom to wash his hands while I described everything I seen and see. DH check all tubing while I checked Tre`. Everything was were it was supposed to be. To keep us both calm I decided to suction him. I went down and got nothing back. Normally, we go down to 10cm. I couldn’t feel anything and I looked to see that his SATs went to 95. I went down to 11.5cm (I wouldn’t recommend anyone doing it unless necessary!) I pulled some THICK secretions. I went down again and pulled more out. I put some saline down his track and pulled out two large plugs. After going back I didn’t get anything out. I’m happy he ok and that I didn’t have to lavage him.

His vent stopped alarming and I called the on-cal at his Pulm office. He basically said that he’s not sure if the plug had anything to do with the exchanger. The only thing he really worried about is the apnea.

Hey Tre`…look down here

2006-12-04T19:47:00.000-05:00

So I’m feeling a little down (I won't go into details). Tre` has been doing well for himself. Little to no wheezing and coughing spells since the last week of November. He has been sleeping for most of the day so he’s probably going to try an all nighter.

His gums have been so achy. He gnawed and his fist and fingers and anything else that he’s handed. Which brings me to my next dilemma; I have noticed that Tre` has a coordination problem that I didn’t realize until recently. Tre` was diagnosed with ROP and had laser eye surgery in both eyes. After every doctors visit, I was told that his eyes are “good” or “fine” However, while he’s gotten frustrated with his gums I try to keep him with his noonie STATS! While he’s demanding his noonie I took it upon myself to squeeze in a little therapy. So, I would give him his noonie in both or one hand and wait for him to put it in his mouth by himself. It went to his nose, in between his eyes, and his forehead and never his mouth. He would get SO upset and cry so I’d assist him. Then he’d accidentally pull it out his mouth or it would fall and again…he just couldn’t get it in his mouth. We did this about 10x and the results were the same. I gave him his pacifier and grabbed his favorite toy. I watched him trace it slowly. Left-check, right-check-up-check, down-BINGO. Once an item is below his nose he either doesn’t acknowledge it or he doesn’t see it. I’m going to do a few more trials then I’m calling his opthamologist.

Well that’s it…for now.

We have some catching up to do.

2006-12-01T18:39:00.000-05:00

So, Tre` was evaluated by Early Intervention today. The meeting took about four hours as we went over all his delays. I knew he was behind but to hear her call him, mouth the words, 5 months (I’ll go into detail at the bottom because it gets worse.), was a little aggravating. However, me being me I quickly realized that he’s been a great. With all his surgeries and illnesses he’s far ahead than what a lot of babies in his situation would be able to do. That was no doctor’s script. No therapist recommendations. That was God and a little TLC from his mom.
We have a lot to work on for the next six months. His upper body strength, He needs to life his upper body, sit completely straight supported or unsupported, his leg/ foot strength, eat by mouth, roll from side to stomach, and more.

Area Evaluated, Current Development Age Level
1. Cognitive, 5 months
2. Communication, 2 months
3. Social/ Emotional, 5 months
4. Gross Motor, 2-3 months
5. Perceptual/ Fine Motor, 5 months
6. Adaptive Self-Help, 3-5 months

For his hardest levels I plan to take my own course of action for him. I don’t want to push him too much but I’d love to see how much I can help him. As far as the Communication, that’s probable hard for me because of his trach. I can give him 60 second trials on a speech valve until tolerated but I’ll see. I want to start teaching him basic sign language, too. He’s at the age where he should be able to mimic so I can each him mommy and food/ eat. The Gross Motor skills might be a little tricky as well. I think we can handle it as well. He HATES being on his stomach. He started to hate it once he got his G-Tube. I can slowly “trick him” on his belly by laying him on his side over my lap (slanted) or on a boppy. I still don’t know what I’ll do about the leg strength, though. I might consult with the therapist. His Adaptive Self-Help might be time consuming but ok. While I was in the store I seen something called a Dipper. I’ll allow him to play with it for a few days as a toy. Then I’ll dip a little Stage 2 baby food on it and allow him to taste it. I’ll only do it once a day or every other day, though. Them I’ll work myself up.

Some of these things I’d like to work on alone or with my husband. It’s hard to have strange people in your house (nurses) because too many times they like to overstep their boundaries and/ or invade personal mommy baby time. My son was in the hospital from birth till ten months, we have a lot of catching up to do and it’s still jaded because I will always have someone intervening. I still don’t understand how some people can’t sit back and see what they have going for themselves. You have a mother or a father talking about how their child acts up in a store. How about a mother like me would love to take her baby to the store but cannot. The things we take for granted. I feel as though I am very grateful for my son, but don’t get it wrong sometimes I break just as the next person with a human soul.

As for me well, I’ve been better. Nevertheless, I won’t complain. Things get hard and things get better. There are people in a worse situation than I am.

Dearest Collene,

Collene, tomorrow I will celebrate your life. Your existence was and will always be purposeful. Miss Collene, you were here to teach about life and its importance.

I never fathomed that I would be writing this. It so hard to find the words to say. I still can’t speak your name as past tense without feeling mistaken. I cry because you are asleep but I celebrate because you have lived. If I close my eyes, today, I can see you playing and laughing, singing and dancing, Collene you’re dancing. I can’t think or say what you could have been, sweetheart because I only know who you are, an angel in my eyes. I’m miss you honey.

It cut through!!!

2006-11-30T18:25:00.000-05:00

No news about his sugar as of yet. You know how it is when you call the doctor and it takes centuries to get a reply if they feel it’s not life threatening.

Today, I feel a little down. I’m not sure what it is but I wish that it will just go away. I got a call on my cell from a number I didn’t recognize. I generally screen my calls when I’m upset but I answered this one. It was the IVF office that my husband and I used. I haven’t spoken to anyone from the office since I was discharged. The nurse called me about a questionnaire and remembered exactly who I was. She said I was hard to forget because when ever I had to get blood work I would flip out about how much it hurt or that I didn’t have enough blood. LOL Well yes, I do have a low pain tolerance. Anyway, she wanted to know how my pregnancy and child went. I gave her a quick review of what occurred and she felt very sympathetic. Now, I know that these questionnaires are monitory. I somehow don’t think my story will encourage someone with fertility issues. Once I got off the phone with her I immediately began to cry. I cried until I heard Tre` whimper. I wiped my tears and went to him. Once I took him out the bed, he smiled so huge, I started to laugh.

I put him in his swing and he fell fast asleep. (these are thumbnails)

Lately Tre` has been extremely agitated. There’s no calming him down sometimes, too. With the excessive drooling spells, to gnawing at his fist, to his temper flaring; it’s been assumed by his nurses that he has been teething. I didn’t believe that MY baby was teething because I didn’t see or feel anything that can be clarified as teeth. Secondly one nurse would say that she feels something while the next nurse differs. I went ahead a bought Baby Orajel since it wouldn’t hurt him. Just as I suspected, NOTHING happened! His noonie (pacifier) did more for him than Orajel so he not teething.

Once his overnight nurse left, I tried various things to console him until either something worked or I tired him out. I’m not sure which one it was but he fell fast asleep in my arms. I kissed him and watched his sleeping facial expressions. For some reason I looked in his mouth. I did it as softly as I can so I didn’t wake him. Lo and behold, I find two nubbies coming in at the bottom. To make matters worse, I can't really call them nubbies because nubbies are felt teeth are seen. At least I think. Oh no, these are two teeth coming in at the bottom. I wanted to die.

I have come to grips with the fact that my baby has become a man. LOL.

Sugar baby

2006-11-29T16:32:00.000-05:00

So as some of you may already know Tre` is hypoglycemic. We believe that it has a lot to do with his liver damage. Fortunately his bili levels have dropped dramatically. It got so high that a brand new liver was talked up. No one really knew if anything can come of this. That’s my boy, prove them wrong!!! So, we don’t know how great they have gotten because his new doctors haven’t checked his levels since he’s been home.

I had the doctor change the orders for his glucose testing. He was getting it every morning and for months he hasn’t had a hypoglycemic episode/ reading. No one really knows how this happened or when hey just caught it and he was diagnosed. So, the only thing that was keeping his sugar up is continuous feeds (Neocate 27 rate of 38/24hrs). As of lately, his sugars have been getting higher and higher. Yesterday morning alone his nurse checked his sugar and it was 147. In the evening I took his sugar, personally (literally) and I got 124. I asked his nurse what “she’d like to see his sugar at and she said between 70 and 90. Now, no disrespect to her but I asked what she’d like to see only as an opinion not for advice. She did, however, tell me that the prednisone he’s on has a side effect that increases the blood sugar. Any event, I plan to call the doctor Thursday or Friday morning so he can monitor what’s going on. I won’t have a day nurse but I’ll work something out.

Without doctors orders I would stop his feed for a half hour sometimes an hour. I do it to give his tummy a break. He get’s extremely distended around the abdominal area. The people that are supposed to follow his hypoglycemia are Endocrinology at CHOP. Right now he doesn’t have an appointment until mid March. That is the ONLY appointment they claim to have.

Who is Tre'?

2006-11-28T19:20:00.000-05:00

On January 6, 2006 at 7:43pm EST, Victor III aka Tre` aka Stinka Man, is a former 25 weeker from NJ. He was 1lb 12oz and 12.25 inches long. He became a preemie due to my incompetent cervix. He was delivered via cesarean because he was so small and a footling. Till this date Tre has been to various hospitals and undergone various surgeries and procedures.

Here’s a briefing, The dates might be off by days to weeks:

Diagnosis
Gastroesophageal reflux disease
Hypoglycaemia
Bilateral inguinal hernia
Retinopathy of prematurity
Bronchopulmonary dysplasia
Hydrocoele
Hydrocephalus
Newborn necrotizing enterocolitis
Polycystic kidneys
Intracerebral haemorrhage, intraventricular
Patent ductus arteriosus
Cholestasis
Just being a preemie

Procedure and surgeries
Gastrostomy Tube (8/31/2006)
Drain Hydrocele (6/1/2006)
Circumcision (6/1/2006)
Bilateral repair of inguinal hernia (6/1/2006)
Tracheostomy (5/25/2006)
Ventricular shunt to abdominal cavity (5/17/2006)
Ileostomy Reconnection (4/24/2006)
Laser Treatment for ROP (4/17/2006)
Subgaleal Shunt (2/1/2006)
Broviac (1/24/2006)
Ileostomy (1/17/2006)
PDA Ligation (1/10/2006)

Tre` is actually a surviving twin. His twin was lost in utero during the first trimester. The cause was unknown but too common for a lot of women. I never got to hold his twin, see his twin, morn his twin, nor name his twin. I just have memories of the excitement. With all the hard work we did to get pregnant, I did times two.

There’s a nice brief introduction. I’m new to blogging so I’ll do my best.