Sunday, July 20, 2014

Not so comfortably hanging at TGH

 

That's Maddy in the back of an ambulance being transported to Tampa General! No, I couldn't see her either but she saw me. The ride went well and the parametric who rode with her in the back was a great guy. He was fun loving and very upbeat from the moment he walked in the room. Maddy chatted with him about the crappy experience she had with the ambulance taking her to St. Joe's and asked her if he could use her story to help train the other two paramedics who were driving the ambulance. It was their first day and he was training them. Hopefully they will learn from the story and be better able to serve their patients because of it.

Maddy is settling in well at TGH. We are always more comfortable where there are familiar faces. A few people from around the floor have already stopped by to say hi to her and wish her a speedy recovery.

So the main problem we are dealing with now is the itching and crawling skin syndrome Maddy is going through. It started Friday with the IVIG, as mentioned she always has a reaction to it. Then because of the pain on her kidneys, again from the IVIG, they put her on steroids which causes her skin to crawl. Add to that a few large doses of steroids they gave her at St. Joe's to make sure she was stable and now she is in her own little hell! I had a really bad sunburn one time that itched and burned for about 12 hours straight with no relief and I thought I was going to die. Maddy has been going through what she described to me as the very same feeling, plus the irritability of the steroids, for over 48 hours now with very little relief. To say she is miserable would be an understatement of the highest degree.

They have given her as much Benadryl as they can safely give her in this amount of time so they switched to IV hydrocortisone. It does not seem to be helping at all. The doctor and pharmesist said with the hydrocortisone you have to take multiple doses and allow it to build up in your system sometimes before getting any measurable relief. They only give it every 8 hours. Hopefully by the next dose she will start to get some relief so she can rest. At this point I don't think she has slept for more than two hours at a time for a total of four or five hours tops. Poor kid!

Speaking of sleep, they put her in a room with a camera in it so they can monitor her while she sleeps. They will also hook her up to an O2 saturation monitor to make sure she does not go into hypoxia again. Not sure what the game plan is at this point. I think they just want to monitor her and check over all the tests that were done at St. Joe's. I'm doctor Haddad or Rolf will let us know tomorrow what the plan is.


 

2 comments:

  1. My prayers go out to Maddy. I was one of her nurses a few yrs ago at ACH. I pray that she get listed very soon on the on the transplant list and that she get a second chance soon. Keep up the fight Maddy:)

    ReplyDelete