As you've read, things had been going quite well with weaning for both Edwin and Serena. But as I also wrote, there have been incidents that were concerning with Champ's sats a couple weeks ago. Well it happened again Friday night-Sat. He would just sat lower than normal 91-93 and often dropping to 90 and even 88. We had turned him up to 250 (he had been on 150 since Monday) he slept okay Friday night and kept his sats up, but was still dipping more than usual. On Sat once he woke up, I just couldn't keep him satting above 93 consistently, so I called oncall after an hour of him going from 95 to 91 to 90 etc. Just very inconsistent even with the bump to 250ccs. Thankfully their pulmonologist was oncall this weekend which made me happy; last time another Dr in the practice wanted us to bring him to the ER for this and not turn his O2 up to more than 100ccs increase from what he'd been at that week. He of course is not their Dr so I understand why he suggested this. But I wasn't game for that this time, and I had considered giving him a breathing treatment, but of course I wanted to call the Dr first before I did that as we have never given either child a treatment before and we just got the nebulizer a week ago.
So their pulmonologist called right back and we had "the talk" that I figured was coming. First, he didn't want me to give a treatment as he didn't feel it was an airway problem but rather that Champ just needs more O2. As I've seen lately, he can manage very well at times, but other times just gets too tired, and the weaning by 50ccs every week is too much work for him.
Dr K ordered that I turn Champ up to 350ccs and keep him there. He said no more weaning, and we would probably keep him at 350ccs until we go back to the pulmonogolist in the middle of July! He also wants us to come in this week to have a chest x ray, an EKG, and a set of electrolites done. Since we were going to do this on the day of their appointment in July for both kids, we will just do it for Serena this week as well. Dr K feels his weaning plan for Champ just might have been a little too aggressive. It's tough because I saw my little man managing well most times; in fact he was satting very high nearly all the time, which enabled me to keep weaning. It has just been lately where everything appears to be catching up with him and he is really having a harder time.
It's tough to take a step back as preemie parents know. We were so close to being at him minimum amount of O2 he would have to be on before we could start to think about time off. We only had a week to go. Now we are at 350ccs and have to stay there for awhile. It's a little disappointing.
But what I had to remind myself is that my little guy has pretty significant chronic lung disease. Here is a kiddo who spent 30 days on an osciallator and then another 29 on the conventional vent and then to CPAP and then finally came home on a 1/2 liter of O2. Here's a kid that the Drs, nurses, respiratory therapits, and even his family were pretty convinced would not survive. Here's a kid who was the sickest baby in the entire NICU for months. Here's a kid who was made a DNR (for 4 days) because his prognosis was so poor. Here's a kid who a very well respected NICU Dr said would be one of those miracle cases, the ones you never forget, if he actually survived. He was given a "close to a zero percent chance of survival." Here's a kid who the Drs told his parents that "no one would think it unethical if you decided to end support now." Here's a kid who had a loving primary nurse tell his grandmother that she didn't think he would ever come off the vent and worried that we were having a baby shower. This kid wasn't expected to live, wasn't expected to come off a vent, probably would have been expected to be a trached vent patient in a vegitative state if he actaully survived. He wasn't expected to do much of anything. He was one of those sick, sick, sick, 23 week boys.
So I sit back and I realize he has come sooooo far. He has made so many major accomplishments, which medically speaking, is almost unbelievable. He is happy, social, physically strong, and just so lovable. So he has a cannula up his nose, and it's unconvienent, and everyone and their mother always asks me when he is coming off O2 for good.
Well, I have no idea. But what I do know is he and his sister are miracles. What I do know is Champ CAN breathe without a ventialtor, that he is ALIVE, and that he is NOT in a vegitative state. I don't know what the future holds respiratory wise, I figure he'll struggle in that arena for a very long time. I know neither Serena nor Edwin will ever completely outgrow their extreme prematurity. But I also know it doesn't DEFINE who they are.
I hate taking steps backwards, but I also know I am so lucky to even be taking these steps with my kids at all.
