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!

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.

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!

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?

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.