Hopefully the final update of this visit

I started to update last night but then Maddy started having a reaction to the needs so I stopped. The next two paragraphs are what I got done last night then I will post the current update

Right so, remember how I said they were going to skip the Thymo on Sunday because her numbers were not right for it? Well they changed their mind. The doc really wanted her to get the most bang for her buck while here so he ordered another round of bloodworm in the afternoon. The numbers came back good enough for them to run the Thymo. Just a reminder the Thymo is a SIX hour infusion. They didn't get started until 6PM!! That meant Maddy was going to be up all night. I had already adjusted my work schedule so I had told my boss I would be there on Monday. No big deal I'm use to long nights and early mornings. I ran out to grab Maddy some dinner and a couple movies from Redbox around 7:30 so she could eat. When I got back she asked me if I would be offended if she asked me to go home. I said of course not. I will be here or not depending on what she wants. Basically she didn't want to worry about keeping me up all night when I had to work the next day. She was also tired of people in general and just wanted some alone time. No sweat off my back. I headed out to a warm bed. 

Just as I was going Maddy's two best friends showed up unannounced. She seemed happy to see them and they were all very excited. They brought gifts and balloons, it really cheered up the place. I'm told they hung out for an hour or so. I got a text from Maddy around 9:30 telling me she was having an allergic reaction to the Thymo. Lots of itching, hives and her throat felt really itchy. The reaction had started a little when I left at 8 but apparently got worse as the night progressed. They tried lots of different antihistamines to help fight the itching but could never get ahead of it. Needless to say Maddy had a horrible night. 

Which brings me back to Monday night. They got Maddy's thyme treatment going a little earlier on Monday but before that could happen Maddy had it out with the doctor a little about getting her properly premeditated before the Thymo this time around. She did not want to have that bad a reaction with no relief again. Unfortunately there was some miscommunication and the doctor stuck with the oral Benadryl, with a follow up dose of two other antihistamines in reserve if she started to react. Have I mentioned they are giving her LARGE doses of steroids before every round of Thymo? Yeah, it kind of slipped our mind too. We were so focused on the new medication we forgot that the large doses of Solu-Medrol wreak havoc on poor little Maddy. So if the stress of going through rejection, anxiety over having to deal with strangers all day, itchiness from an allergic reaction to the Thymo and overall loathing of being in the hospital didn't knock Maddy down the Solu-Medrol would. I can't even begin to describe what high doses of Steroids feel like. I think I have tried in the past and failed. Needless to say this whole situation is just one big cocktail to send a person over the edge never to return. Thus the crisis we had on Saturday and again last night and I'm sure on Sunday night when she sent me home and I was not around to see it. Poor little kid!

She got through the dose of Thymo by around 10PM and was able to start feeling almost human again in time for bed. She was actually able to get a decent amount of sleep last night. I think we both got around four hours of uninterrupted sleep then another two before everything started up again this morning. She had a bout of tummy trouble after breakfast but was able to get medication for it pretty quick so it was under control fast.

The doctor came in about midmorning and checked all the charts and numbers and said she gets to go home today. I almost hate to write that until we are actually out the door given what happened last time they took a Hickman line out of Maddy's neck.  But we are hopeful that everything will go smoothly this time. She is getting a dose of IVIG before they can remove the line and it just got hung at 12:30. IVIG can take up to 5 hours to infuse so we are still going to be here a while. Also she will have to sit still in her bed for at least an hour after they remove the line. Maybe we will be home for dinner? But at least we will be home!

The plan from here is to monitor her immune levels and antibodies. She will also still get monthly infusions of IVIG so that is another great bit of news! (there really needs to be a sarcasm font) The doctor today described what they did to Maddy as a thermonuclear attack of her immune system so she is yet again severely immune compromised. That means being very careful of contact with the outside world and watching very closely for any signs of infection. We still don't have any idea if her lung functions will return to normal but I am hopeful.

Thats all for now. I'll post again if things change.

This was my view when I peeked out into the courtyard this morning. It was about 37 degrees but the blue skies made up for the cold! Looking for more blue skies ahead!