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!
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