Thursday, July 18, 2013

Day 3

Things went pretty well yesterday so I didn't bother with an update last night. After going into work for two hours, I finally got home and took a shower and a nap! It felt so good. Maddy's BF came down and hung out for a good part of the day, so she had company.

The only little hiccup of the day was shortly after I headed to work in the morning. It seems like her whole life the minute I step away from her bedside something weird happens. The respiratory team came in to give her Colisten treatment and a few minutes into it she had trouble breathing. The inhaled antibiotic can be irritating to healthy lungs so Maddy's tired lungs did not respond well at all. They got her a Xoponex treatment and that opened her airways. After that she was just fine. That evening they made sure to do Xoponex first and she tolerated the treatment without any issues. I came back to the hospital in the evening and hung out until after that treatment to make sure it went well. After that I went home to sleep because I was back on the morning show again today.

This morning while I was doing the show I got a text with the above picture. It's the place where her chest tube was. She said Dr. Floreth was the doc who removed it with Dr. Rolf observing. She told me he said take a deep breath and then let it out. On the exhale he pulled the tube out, but only made it half way before she was finished exhaling. Dr. Rolf yelled "pull harder" and Dr. Floreth had to yank it the rest of the way out quickly. Then Dr. Rolf proceeded to tell Maddy how whiny she was and asked her if she wanted any cheese to go along with it. It may sound bad on paper but you have to know him to understand. That kind of comment is exactly our sense of humor so it was totally funny and appropriate. He gets us. Maddy said that overall it was not so bad. And she is glad to have the tube out. Duh!

After work I had to run home for a few last minute items before coming to the hospital. When I got here Maddy was asleep. She got up for a little but and explained that she didn't sleep well at all last night so she is being really lazy today. I think she deserves it and apparently the staff does too because she has since gone back to sleep and no one will bother her. Usually it's a parade of people in and out of the room, waking her up when ever they feel like it and demanding she do this or that. Today they see that she is asleep and quietly tell me why they came by and very politely ask me to pass on the information. But tomorrow they work begins. Respiratory physical therapy came in and said they will start working with her tomorrow to rebuild the strength in her lungs. Lots of breathing exercises, daily PFT's and incentive spirometer work. It's good for her, but today they are allowing her to rest.

I don't think they have done her pheresis yet today. This will be treatment 3 of 5. Hopefully we are still on track for a Monday release. Maddy has company scheduled for tomorrow afternoon so I will not be coming back until tomorrow night. I will be able to spend the night over the weekend since I don't have to work so she will have me around to get things done for her. Ha Ha. I will probably not post again until Saturday. Thanks for the prayers!

3PM

A few things have happened this afternoon that I feel are blog worthy. As most everyone saw Maddy went for a walk with me down to McDonald's. see above pic. We took a nice stroll by the water behind TGH after that and it's been a very nice afternoon.

Shortly after returning from the walk a neurologist stopped by the room. You may remember Maddy's siezure on July 4, 2011 which was a result of viral meningitis which caused her brain to swell up. She has been on two medications for that episode ever since. Keppra for the seizures and Gabapentin for the migraine associated with the brain swelling. Maddy asked Dr. Rolf this morning when it was time to stop taking these since its been two years already. He called in a neurological consult to get the answer. A nice doctor from the group that treated Maddy back in 2011 came by and said they usually wait two years before tapering a patient off of the two medications Maddy is on. What good timing that Maddy happens to be in the hospital exactly two years later! So she doc started the weaning process and will lower Maddy's dosages today. She also ordered a follow up EEG and MRI to make sure there is no scarring on Maddy's brain that could cause another seizure and that her brain function is normal again. She will get both of those tests done while Maddy is here for this visit which saves us a full day at the doctor! So it looks like something good is coming from this visit. Other than getting Maddy better of course!

Ok I'll post again when we have results of these new tests!

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