So as I said in the update, Taylor went back on oxygen last night. For the most part she did fairly well during the day. She had some oxygen saturation problems when she was trying to poop and when she was stirring, but it wasn't that much different than other days on CPAP. There was a bit more short bradies than normal. It seemed though to get worse as the night wore on, and the nurses thought about it for a while and decided to just see if they could give some oxygen through a nasal cannula. The hope was that she wouldn't need it all the time, but she pretty much did and was on 24% for most of the night.
The doctor does not want her just on oxygen as oxygen obviously has lots of problems associated with it (ROP, lung disease, brain problem, etc...). She also heard crackling again in Taylor's lungs. She wanted to go back on CPAP. We of course weren't crazy about that. We don't want to risk doing anything that might make Taylor worse, but the CPAP has had its issues. For one Taylor's CPAP tummy is just starting to getting smaller and we'd like it to get back to normal so that her lungs have room to grow. Secondly the water problems we've had. Thirdly how fragile it is and how it seems at time that Taylor has been struggling against it rather than it helping her. And finally, she's been on/off oxygen with it as well.
Anyway, the doctor recommended CPAP but said she would try a high flow nasal cannula if we really didn't want to go back on CPAP. The high flow nasal cannula basically simulates CPAP. It is a pressure based system as well and it would help the sacks in Taylor's lungs stay inflated like CPAP. Its not as effective as CPAP however. It is however a heck of a lot less intrusive and doesn't cause the stomach problems. She left the decision to us and put Taylor on 1 liter of fluid to get some pressure going. The high flow is 2-3 liters. I called Michelle and we discussed it. As we were discussing it, Taylor's saturation levels were incredibly good. So good that I was convinced she was on oxygen and was trying to get nurses to turn it off (since Taylor was at 100% sat level which is only good if you are on room air). Multiple nurses confirmed that she was not on oxygen.
Anyway, when the doctor came back in, I was kind of like "why not leave her on this?" since she was doing so well. She explained that if she was going to do the high-flow she didn't want to do anything non-standard nor dink around and wanted to do high-flow the way it was supposed to be done. Made sense, so they called the respiration therapist to get her set up, which she did. But Taylor's sat levels were back to being cruddy again and they moved her up to 25% oxygen. I was and still am so confused on how the higher level of pressure made things worse. The doctor and nurses have all been saying it was just coincidental and that other things must have been the cause. It is true that Taylor got cold (for reasons unknown again to me because she's in her bed that's automatically adjusting to her temperature), and that they also changed her diaper and other things around the same time. But still it didn't make much sense and the nurse was confused too.
Anyway, we had a lot more discussion about whether it was the right thing to be doing and we decided to give it a shot still. For reasons that also baffle me the more the day progressed the doctor seemed to be even more supportive of it and almost was reassuring us that it was the right thing to do. But she still would do the CPAP if Taylor needed it and I thought the doctor thought that if Taylor was still on oxygen that would mean she needed the CPAP. But during her re-assurance speech Taylor was still on 25% oxygen which is more than we started with earlier in the morning. I'm still scratching my head.
But hey, no CPAP still. She's been on oxygen most of the day, but hopefully we can slowly ween her. She's at a lower level now and is doing fine. In about 1/2 hour she'll be at a lower level. If that goes good the next level down is room air. They can also go up on the pressure level more if they need to, although Taylor is already at the max pressure level this doctor would want before saying just go back to CPAP. There's a new doctor in tomorrow and we are anxious to hear what she says.
Tonight, for the first time ever I got to hold Taylor without the CPAP. The high flow nasal cannula is so much easier to deal with, and I can see Taylor and Taylor is pretty much free to do what she wants. Her facial expressions are incredible and when I got her she was alert for about 20 minutes before falling asleep. She sucked hard on her pacifier for about 15 minutes as well, while she sat there staring at me and looking all around. It was an incredible feeling. It was also the first time I could kiss her head and she got several. Michelle was lucky enough to have Taylor off of CPAP when they did some trials a couple weeks ago, and she was able to give her a kiss then. I swear, its the little things that are so dear to you with a premature baby. Things you just take for granted with a normal child are just a completely different experience because you have been held back from being able to do them.
Michelle is feeling better and was able to be here today although she left for the night. She'll be up tomorrow night and hold Taylor for the first time in a week. We may try to get a room here so that we can all be together. I don't know. There's a big part of me that just wants my bed and wants to sleep in. I've been at the hospital every night this week except Tuesday and its really got me wore out. Last night, there were so many alarms going off next door, and Taylor had her share, and she ripped out the nasal cannula several times. Anyway, I need some sleep. Speaking of which I should shut up and get some...
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