Rebekah - 140 days old on 9/7/09.
Checking out the mobile in her hospital room.I hadn't blogged all summer partly because my life with 5 kids (including my lovely special needs sweet baby girl) has been insanely crazy this summer, and partly because I never finished Rebekah's LAST hospital stay story and I did NOT know that you can post entries to blogger and later change the date to rearrange the order of the posts! So I have been waiting for free time that never occurred to finish the June hospital stay story when I could've been blogging all along! Oh well, I'm not really much of a blogger anyway!
So here it is Labor Day weekend and, surprise, we are back in the hospital! Over the last week and a half, Rebekah's mucus secretions have been getting progressively worse and we have had her on oxygen pretty much around the clock. That is not normal, but she didn't have a fever, the secretions were all clear, and there wasn't really an obvious sign of illness.
Sunday morning, Rebekah seemed to be working hard to breathe. Her SATS (on fairly high oxygen for her) had been hovering in the low 90's and I couldn't really get them up. She was being suctioned probably 4-5 times an hour, and at night we were having to suction much more than usual. She used to go pretty much to whole night without suctioning.
I called hospice and asked them to send a nurse to assess her. The supervisor answered and had a preconceived notion that Rebekah's symptoms were related to congestive heart failure. I was confused by this since she got an A from the cardiologist months ago and we were told not to come back! So she sends over a nurse (the on call nurse who had never seen Rebekah before), who listens to Rebekah and agrees that she is working much too bard to breathe. She explained that she heard fluid in Rebekah's lungs and heart and that she probably did have a congested heart. I had to either take her off hospice and take her to the ER, or manage her care at home through hospice care (expecting her to progressively get worse).
My heart, at the point, dropped into my stomach. Worried if we had done something terribly wrong by letting this go all week, I asked how bad she thought it was. She said she didn't think it was too late to reverse it, but that the congestion was probably due to excess fluid, kidney problems, etc. Oh yeah, and the fact that Rebekah has trisomy 18 and that is a common problem. (Think she may have talked to the supervisor and come with a preconceived notion of what she was dealing with?) While she was very nice and professional, she did pretty much end the conversation with telling me that if I take her off hospice to go, I probably will want to switch her back to regular home health care afterwards because those nurses would be in a better position to do blood draws, etc from home. I think I was getting the 'don't come back' speech.
I kicked it into high gear and got her off to the hospital while Michael took the boys to church. We tossed around having all of us go, but it was a good thing that didn't happen because the hospital has prepared for a flu pandemic by not allowing anyone under 18 to visit any of the pediatric floors.
I called the doc on the way to the hospital - got to bypass the ER and met him in the hospital lobby. He discussed her status with the ped floor docs and they decided to admit her to the Pediatric ICU due to her trach and the excessive suctioning requirements. Oh, did I mention that he almsot laughed at the congested heart comment? He said there wasn't anyway to determine if what we were hearing was congested heart because it was too difficult to differentiate the noise from the lungs vs. heart and that it was most likely just the lungs.
Well, a chest x-ray, several blood tests, and multiple other illness tests later, we are still in the hospital without an exact diagnosis (probable virus - just has to run its course), but we do know that it isn't any of the 'big' ones (especially for a trach baby) like pneumonia, flu, rsv, etc.
So now we just wait... hoping she starts to show some improvement so we can move her care to back home.
My baby girl is strong and will get through this just fine. But I really hope we have not started 'another holiday, another hospital visit' trend!