Sleepless night

We are still at St. Joe's. Last night was a long sleepless night for us both. Maddy was scared to sleep. Worried she would stop breathing again. And still reacting to all the meds. She said it felt like she had a sunburn, crawling itchy skin and really hot. I think she finally fell asleep around 3. Then we were up again at 5 with IV alarms going off. And there have been people in and out of the room ever since. Oh and this hospital seems to want to discourage visitors so all I have is a stupid recliner chair to try and sleep in.

So far this morning they have poked and prodded Maddy about as much as they do any time she is in the hospital. A respiratory tech came in this morning to do Maddy's "breathing treatments". When Maddy asked what treatments the tech said the ones they brought this machine in for, pointing to something behind the chair I was sitting in. At this point Maddy was still pretty groggy and was having a little trouble wrapping her head around someone failing to tell her the name of a medicine they were about to administer so I piped up. I explained that Maddy is a bilateral lung transplant patient with cystic fibrosis and when she asks what treatment she wants to know the names of the medicine. The tech said albuderol and pulmocort. I said nope! She is allergic to albuderol and it gives her heart palpitations and that she is not going to put anything in her lungs that her transplant doctors didn't order. The tech understood right away and said you got it, hope you feel better and get to your hospital very soon. I hope she didn't feel I was to hard on her but at that point I was going on maybe two hours sleep and really didn't feel like dealing with this stuff anymore.

Shortly after that they came to take Maddy down to nuclear medicine for the scan with isotopes. While she was gone I took the opportunity to get a protien shake and coffee, breakfast of champions. Maddy said the test went ok, she freaked a little when they said she had to breathe in the isotopes, just because she doesn't like those tight firing masks like on c-pap machines. But the mask wasn't bad so Maddy was alright. They did have to strap her arms to her sides for the first scan and that always makes her cloastophobic. So she was a little shaken up when she got back to the room but was overall alright.

The nurse set up her next round of IV antibiotics and brought her oral meds a short time ago. She said the results of the scan came back "inconclusive" and that she was going to have to call the doctor to see what they want to do. I asked again of Maddy's transplant doctors at TGH have been consulted. The nurse said she didn't think those doctors came to this hospital. I said yeah we know. Which is why we need to get transferred to TGH. Maddy summed it up very well in a text to Melissa a minute ago.

We are trying to get them to release me or transfer me to Tgh. We pretty much won't let them do anything but steroids and antibiotics until they call and talk to my transplant drs. Because we don't know what some of the things they want to give me will do to the chances of me being relisted. We aren't taking the chance so have pretty much refused anything until they talk to my team at Tgh.

It's about 10:30AM now and we are waiting on the doctor to get back to us with an answer to our list of demands. Lol

Maddy is still very itchy but other than that she seems ok. Her O2 sats are back up to 99 when they spot check her. I think she has decided to sleep with the O2 on at home from now on. Thanks for all the prayers and positive vibes. I'll post again as soon as we know more.

 

 

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