<Tre's Updates>

Saturday, March 31, 2007

Use To Be Impossible

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.

posted by Tre's Mom @ 3:03 AM 0 comments

Thursday, March 29, 2007

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

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

posted by Tre's Mom @ 9:17 PM 2 comments

Wednesday, March 28, 2007

The Day After Today

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.

posted by Tre's Mom @ 5:25 PM 0 comments

Monday, March 26, 2007

Mixed Emotions

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.

posted by Tre's Mom @ 10:27 PM 1 comments

Sunday, March 25, 2007

I'm just short.

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.

posted by Tre's Mom @ 5:57 PM 0 comments

Sunday, March 4, 2007

Sweet & Low

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.

posted by Tre's Mom @ 12:25 AM 3 comments

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