On Sunday we noticed that Katie was having a tough time breathing. When the doctor came in to check up on her we asked if we could go back to C-pap to give her a bit of help. She decided to wait until after the blood test and sure enough the PC02 came back crazy high at 103. They stopped her feedings, put in an IV, did all sorts of blood tests, urine tests, a lung Xray and prescribed another blood gas test for later in the day. She quickly became her happy self again but her PC02 was still 95.
Since she was back to herself and the PC02 seemed to be on a downward trend, they were having a tough time figuring out what to do. The deciding factor was that the Xray showed that her lung was a bit more deflated than it should have been. The cure to that is the C-pap. There was always the possibility that it inflated on it's own when she let out a big cry or something but if we waited too long C-pap wouldn't work and we'd have to resort to intubation. So...she's now on C-pap. It looks different than the old mask because it's apparently "the Cadillac of C-paps" and is much more mobile than the other one.
I've been getting looks of sympathy everywhere and people seem to think I'm upset but I'm not. I don't see it as a step back. My daughter's lungs are getting the ventilation that they need and I'm grateful for that.
There's one doctor who's really, really special to us. We met for the first time when Katelyn was on the high frequency ventilator, at 100% oxygen and were worried sick. We asked to speak with a doctor and she was on call so she came to talk with us. Given those circumstances you wouldn't think that we'd leave a conversation with a doctor feeling optimistic and happy...but we did.
We only really saw her every once in awhile on nights and weekends yet she'd still ask us how Katelyn was doing when we'd cross paths. While all of the doctors we've had are amazing...most of them pay attention to the numbers and tests results, not remembering details like the baby's first name or who the parents are.
On Saturday I was having a coffee and reading in the parent's room when this doctor walked in and came to say hello and ask about Katie. I told her how much we missed having her as a doctor and she told me that she was back for a month starting Monday morning. First thing Monday morning she was in the room checking up on the babies when Dan turned to her and said "You know, we can have "pivot nurses, pivot N.As...can you be our pivot doctor?" I was expecting a chuckle but instead she told us that she was flattered and would love to. She just had to talk with the chief of neonatology to make sure it was okay.
A little while later she asked if there were any boss doctors that we had a special connection with. Dan joked "Why, are we creating a dream team?" She responded with a serious "yes". So Katelyn now has a dream team of doctors we loved who will follow her until she goes home. That was always one of the biggest stresses for us. Every 2 weeks the boss changes and every month the entire team changes so the plans were constantly changing and stressing us out.
We asked the doctor to be Kate's pivot doctor on Monday morning. On Monday afternoon she confirmed that she was allowed to do it and had created a little "dream team". On Tuesday we had a meeting about long term plans and what to do if shit hits the fan. She called for a respiratory specialist to come and examine Kate right after our meeting so he came up to see her today. She set up a meeting for tomorrow morning with all sorts of "boss neonatologists", pulmonary specialists, inhalation therapists, etc. They're going to put their brains together and figure out what to do. Today she was working on a power point presentation and went through Katie's files month by month so she's now completely up to date. She really cares and we feel it. She even stopped me in the hallways today to see if I was okay.
I'm really, really excited about all of this and am so grateful that Daniel had the guts to ask. Their big meeting is tomorrow morning (she planned for it to be before Christmas vacation) so I'll keep you updated with what's going on.
I have some pictures from when she was still in intermediate but I'll post them with the next post since I really need to get to bed. I'll just post a quick one of what her C-pap looks like.
