Things have been crazy since yesterday morning. I got a call from Alex's dad that said he just had talked to the doctors and they said Alex could go home anytime she wanted. This came as a big shock of course. We were definitely NOT ready for her to come home yesterday. After talking with her dad I received a call from Alex. She was in tears and said that she just didn't feel like coming home yet. She was apprehensive about a lot of things. I told her not to worry about anything, that there was no way we could bring her home before Friday. Then I told her that if she wasn't ready by Friday we would figure out another day. NO pressure. I then managed to confirm appointments with a house cleaner and a carpet cleaner for the next couple of days.
Today up at the hospital I met with the dietitian and the pharmacist. We went over the drug schedule and the food preparation information. The medication aspect of things is huge. Alex will come home on several different drugs and also on I.V. nutrition. They say this is normal. She will most likely be on I.V. nutrients for a couple of weeks and I.V. fluids through the 100 day mark. I guess they will set her up with a backpack type thing that is easy to pack around. The rest of her meds are oral and should be easily tolerated.
The cleaning list for home is HUGE! The daily cleaning list is:
vacuuming
dusting
taking out all garbages
wiping down all kitchen and bathroom surfaces
cleaning and sterilizing bathtub before each use
The weekly cleaning list is worse... this sounds like a lot of fun
clean inside and outside of the refrigerator (all compartments)
damp cleaning walls and ceilings
cleaning and sterilizing heat vents
cleaning and sterilizing bathroom
towels changed daily and sheets changed every other day...
After meeting with everyone today, including the social worker, Alex decided that she is just not ready to go home tomorrow (Friday). She is going to wait until Monday in hopes that they are controlling her pain and nausea better than it has been this week. The doctors seem confident that she is ready to go home, but I don't see Monday being any worse than tomorrow if it makes Alex feel better. I think it's going to be an emotional transition just as much as a physical one for her. For me... and the daily cleaning list above... I am totally OK with her coming home 3 days later. It sounds bad, but just having the weekend to prepare a bit better makes me feel a bit more settled. BUT... Monday is Day 30 and should be the day she can have that Chimerism testing done. YAY!!! Oh, and learned it took about a week to get the results.
Alex has also had a couple of wicked headaches today. We aren't sure exactly what these are from but I sure would love to see them go away before coming home. I would also like to see her take a few more walks and a few flights of stairs. Once she comes home she is going to have to navigate those here, so...
Otherwise everything looks great they tell me. Her ANC is holding steady at 800. They are REALLY excited that her platelets haven't dropped at all in several days. The doctor tells me that this is a HUGE success and will play a big part in how often we'll have to go to the clinic in the weeks to come. We will start out going to clinic twice a week at first. If they see that the platelet level is stable, they will move us to once a week. I have to keep track of every morsel of food and drink that Alex has. The sooner she is off I.V. nutrients the better!
Car detailed - check
Carpets cleaned - check
Dogs cleaned - check check
House cleaned - (tomorrow check)
many single food items - check check check
Well, that's about it for today. I will update over the weekend with any new information. As usual, thanks to everyone for tuning in.
Coming home after transplant can be scary, but once you're there it's a relief.The more Alex walks, the better off she'll be down the road. Muscle mass is so hard to regain once it's lost. I'm speaking from experience. So happy to see those numbers.
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