PICU, Day #14 – Not so fast!

I didn’t update last night.  Not much happened yesterday, pretty much same old, same old.

Hannah has started developing some gastric issues in the past couple of days.  She has not been ingesting all of her feeds and has had residuals in her belly.  So they had stopped the feeds for a few hours this morning and gave her Colace, suppository, and milk of magnesia to help her body go poop and to get her digestion moving again.  No luck yet.  She did have a big blowout diaper a couple of days ago, so it is not a dire issue at the moment.  They started her feeds at 1/3 the rate (10 mL/hour) a few hours ago.

Sedation is still a horrible issue.  They are just not able to fine tune what works best for her and when.  They added rocuronium, a paralytic, to the regimen to help keep her calm when she gets agitated.  The problem is when she gets agitated, she fights to get on her stomach to sleep (can’t do that with a tube in your mouth).  We have tried getting her to sleep on her side, which works for a while, but it is not what she wants.  They also won’t let me hold her to calm her down because of the vent.

Dr. Roy, Hannah’s ENT, came to visit us today.  We are so lucky that he cares so much about Hannah that he came on his day off, just after arriving off an airplane from South America for a week!

He does not seem to feel that Hannah got a fair shot at extubation last week.  She still had a lot of junk in her lungs, and she was not “optimally” weaned from her sedation at that time.   He thinks it would be best to give her one more chance now that her lungs are much better and once the TCH docs can wean her down on her sedation.

Then, if she fails re-extubation and has similar issues, then we can go ahead with a clearer conscience with the trach, knowing that we get her another shot when she was better.

He made the comment that even though she gets trached now, it does not mean that she will have to have the trach forever.  It could be that she is just too weak right now to do it on her own.  However, trying to be a realist, I just have a gut feeling that if we get a trach, it will be forever for her.

So we are going to give the docs a few days to get her sedation weaned and under control, and we hopefully will try again Wednesday or Thursday.  I don’t want to get my hopes up that she is going to be successful, however.  I would rather be fantastically excited that it worked than be horribly disappointed and crushed again if it doesn’t.  It is not that I’m a pessimist, I just feel like I need to protect myself from having to grieve all over again as I did a few days ago.  If she is not successful, she will get the trach and Gbutton a day or two after.

Thank goodness for Dr. Roy, seriously.  You don’t know how comforting it is to be able to put complete faith in a doctor’s opinion, knowing that they truly have your child’s best interest at heart.   Had he said that it was time to trach her, then I would have felt very confident that it was the right decision.   But the fact that he did not feel comfortable with jumping into this without giving her a second chance leaves me with some hope.

He made a very good point when he was talking to the fellow about this.  He said that Hannah has never presented as a classic case of Gaucher’s.  Since her airway is normal, and since she underwent general anesthesia 10 days ago with her ear tube surgery, he said he found it difficult to believe that her disease has progressed so fast.  He feels that this may likely be an acute illness rather than disease progression (just like when Abby had pneumonia 4 years ago and had to be hospitalized for 2-1/2 weeks).

So we just need to get her through these next few days until they try extubating her again!