It is now 5 am on Saturday morning. Hannah fell asleep (as did I) at around 9 pm, and she woke up at midnight. Her nurse and I got her back to sleep a couple of times, but that lasted only 10 to 15 minutes. I have been up since midnight.
Barring any emergencies (like the Kangaroo Crew needing to transport an emergency patient), they are coming to pick us up at 7:30 am. 2-1/2 hours!!! They want to be out of the room by 8:05 am. Why the :05, who knows. Just get me on the plane and get me to my kiddos!
I spent yesterday saying ‘goodbye.” We had good bye visits from Dr. Eng (Hannah’s TCH genetics doc) and Dr. Roy (Hannah’s ENT). I gave thank-you cards to the PICU nurses, the PICU desk staff (who automatically put my name on the Ronald McDonald house list every morning so I could sleep in and not be down there at 7 am), and to the Ronald McDonald staff as well.
I told Dr. Roy that doctors like him and Dr. Bhakta really have spoiled me, and I have come to expect so much now. Unfortunately, I am learning that doctors like them are very rare, and we just got very lucky. It was also great therapy for me to be able to talk to him about what I am truly feeling about this whole situation and experience and get his very honest opinions as well. At least he can’t get rid of me — we plan to keep in touch by email and phone, and he offered whatever assistance he can give. We will look into removing the trach in a few months, but I just know in my heart is isn’t going to be a yes/no decision, as we still have the Gaucher type of progression in the back of our minds.
What we have left to deal with is — weaning from the Ativan (supposed nightmare), continue weaning the pentobarb and the chloral hydrate, chorea movements, seizure issue, possible worsening reflux (on Zantac now, but arching her back a lot!), and gas issues (perhaps need new formula?). Hopefully they will continue daily PT and OT there, and as soon as we get settled there, I want to talk to the social worker to see what programs Hannah qualifies for and hope to get the process started for the Katie Beckett program (similar to Texas’ medically dependent children’s program).
I hope, hope, hope we are headed to the airport in a few hours. The “plan” is to have us at the new hospital by 11:00 am-ish Vegas time. Shortly after that, major hug time for Ethan and Abigail (and Daddy will get a couple too!)
Praying that you are on that helicopter right now as I write this!
Carrie, Safe flight you are heading home and to your babies who are dying for those hugs from you!!
pRAYING FOR YOU ALWAYS,
lOVE,
SUSAN
Oh hon I pray that all goes well and the trach does come out!! Emma was on massive amounts of Ativan and she was in PICU much longer but it took us a year to wean her off. She seemed to do very well with that slow decrease but the day she was ativan free she had a massive seizure and she had to go back on it until the end. That’s doesn’t in anyway mean little Hannah will but as long as they take their time weaning it shouldn’t be too bad on her. Sending huge hugs to you all!!!
Here’s hoping that all went well and that you’re in Vegas right now, surrounded by your family.
We actually got off Ativan without too much trouble. 6 weeks. Of course, she was in a coma so I think that made it easier! Hopefully you can get hooked up with Doctor Maller. She has weaned V both times and is very patient and knowledgable. There is also supposed to be a new neurodoc in Henderson with better bedside manner but I will take experience over bedside manner any day (as long as I get to be unpleasant back to the doc without serious reprecussions)!