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PICU Day #10, Slowing down and breathing

Posted May 27 2010 7:27pm

She has been hospitalized 11 days now — ELEVEN!  She has been on the vent for 9 days now.   I want my baby back!!!!!

Today was actually a very quiet day compared to yesterday.   The Texas Children’s Hospital discharge planning staff was supposed to have a conference call with our insurance company today late afternoon to see if they would cover the medi-flight to Vegas (which requires a doctor and nurse, I believe).

Also, we are working on getting more information on this really tough decision we are faced with making.

I know that Dr. Bhakta, our pediatrician, talked to the fellow in charge of Hannah’s care this morning.  I was not able to find out from Dr. B what he got from it, but since Dr. B seems to always email late at night, hopefully I will hear from him (this man really goes all out for his kids).

I also hear from Dr. Roy, Hannah’s ENT, who has been in South America this week.  He was very adamant about not allowing any invasive procedures to be done until he got some more information.  So he was able to get his partner to come and evaluate Hannah today.  I am so pissed I missed him (I fell asleep in the RMH room), but hopefully he and Dr. Roy will touch base tomorrow.  Also, Dr. Roy will be back in the states this weekend, and he has offered to come to see her when he gets back into town, hopefully Monday (which I know is a holiday, so we will see!).

It works out timing wise, since we would not be able to leave for Las Vegas until sometime next week anyway, and since it is the weekend, they would not likely do a surgery until next week either.   Dr. Roy’s opinion is probably the most important one to us because he knows her better than any of the doctors here, and I think that if he said that she needs the trache, then I will feel much better about the decision.   Or maybe he will want to try another extubation attempt and give her another shot.

I keep searching for a sign that the trach is the right decision for her right now.  I think Dr. Roy’s opinion is going to be that sign.   And honestly, as selfish as it sounds, it sort of takes a lot of the pressure off us as the sole decision makers as to whether we are rushing this trach now or whether it is just time.   Even though we would have the ultimate decision, I know that he has Hannah and our family’s best interest at heart in this decision.

It is so hard to find doctors like Dr. Roy and Dr. Bhakta.  They are truly a gift to the medical world.

I just hate having her still remain on the vent.  I talked to the fellow today (well, many times a day), and he said that there is no harm on leaving her on the vent for the next few days.  The main issue is if she gets an infection due to the vent.  However, she is already on antibiotics for MAY be a bacterial infection from the vent already.

We just have to bide our time for a few more days and keep the Texas Tornado girl calm and sedated.    On a positive note, her pneumonia is improving.  The chest xrays are starting to look a bit better, and they are suctioning out less thick yellow junk each time (although she still has a lot of junk still in there each time).

What I would give just to be able to hold her…

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