Getting caught up

Since my last Facebook post (see below), Isabel has had a few ups and downs, but as of today she's doing extremely well.

(Facebook 10/24/13: Isabel is having a truly fantastic week. All of her meds, except one straggler, are now given orally through her feeding tube. She was put on the small home ventilator on Monday for what we thought would be a 2 hour trial, and she has been on it ever since! She is awake, happy, and according to one the case workers, "doing so well"! Lots of smiling doctors talking about Little Miss Izzy Bumford. Depending how things go in the next couple of days, we may even be out of the ICU as early as next week. Just have to wait and see. The next stop is the Stable Vent Unit and then home. Lots to think about, but we're feeling very encouraged.)

We're still in the PTCU (Pediatric Cardio Thoracic ICU). Just a couple of days after that post, Isabel was having a hard time breathing and started to spike fevers. She came down with a minor case of tracheitis and pneumonia and had to go back on the conventional ventilator for about a week. It was a really hard week because she required more support medically, as well. She is still having fevers off and on and the docs cannot seem to pinpoint a cause. It's extremely frustrating! They have ruled out infection numerous times, have tried to find a correlation to a medication, and haven't found anything. During all of this they have stopped and started slowly weaning her pain and sedation medications, methadone and Valium, and are beginning to think that minor withdrawal is the cause for the fevers. Unfortunately, that is very hard to prove, and they need to rule out any other possible causes first. These fevers are especially difficult because they have been preventing her from making progress in other areas, in particular, having a procedure to get an abdominal feeding tube. We'll need to be in the PCTU until after she has this done, and doctors/surgeons will not perform any procedures on a patient who is has a fever or has had one in the last 48 hours.

About that feeding tube...Isabel has been tube fed since birth. Being on a ventilator initially prevented her from being able to feed by mouth, and since she was on a ventilator for so long she never had the opportunity to try. As many of you know, feeding by mouth can be challenging even for "normal" babies at birth as they learn to latch on to breast or bottle. This is further complicated by the fact that children with CHARGE syndrome have cranial nerve defects, which can affect swallowing. Despite all of this working against her, she does have a decent sucking reflex and takes a pacifier pretty well, so we are encouraged, but it will be a while. She will have to have swallow studies done down the road to make sure that she can swallow and that it all goes down properly. Until then, she will be tube fed. In pictures, the yellow tube in her nose is her feeding tube. What she will hopefully be having done later this week is a procedure to get a feeding tube port in her abdomen. Like the tracheostomy, it should only be necessary for the short-term, and is not permanent. The tube can be taken out in the future with no long term issues. It sounds much scarier than it is, and will be better for everyone in the long run. She won't have any more tubes on her face, in her nose, and down her throat, and the abdominal feeding tube can be disconnected when she is not being fed! I'll share more about the procedure and her specific tube soon.

On a very positive note, she recovered from the pneumonia and is back in the LTV, or small home ventilator. She has been on that for over a week now, and they have even been weaning some of the settings. She's a rock star! She shouldn't ever have to be back on the conventional ventilator except for when she has her feeding tube procedure. Sincerely hoping that this is the case. She has been spending a lot of time in her bouncy seat, and swing, which she loves. She also LOVES her mobile! She gets fussy when it stops and smirks when we turn it on again. I love that girl so much.