It's getting really hard to keep a positive attitude right now. Of course we're ecstatic about Rachel's new lungs and about how well she's doing, but the smooth sailing we had the first week has come to a slow trudge this week...and largely to do with a medication mix up (which I won't go into).
Yesterday (Tuesday) was the day we were told were going to be headed home after being told on Monday that we'd have to wait another day. I had already started to pack up the room but after some morning labwork came back, we found out that Rachel's kidney function levels were too high because of getting too much of a certain immunosuppressant. They play around with drug levels with transplant patients all the time to figure out the right dose for them, but she got the troublesome high dose through a mix up by the person administering it. After that her potassium and sodium levels were off, and her kidney function was way too high for us to be able to go home safely. That pretty much set the mood for the rest of the day. We started hearing "Maybe tomorrow, but probably Thursday" which in medical talk means "Thursday...maybe." We are also dealing with a short time window to get out because the home care nurse can only be waiting at our house with the next dose of medicines at a certain time.
So we just hung out in the room for another day. We checked out of the hotel thinking that we were headed home, but since that wasn't the case we all had to stay at the hospital. In lieu of the hotel gym, I did a circuit workout in the fire escape stairwell that included running the stairs, and using a crossbeam to do pullups on. Rachel got her own workout in too, walking 4 different times throughout the day. Probably the most frustrating thing about being stuck here is that she feels great for the most part, it's just her levels that are off. She thinks she'd actually recovery better at home since she'd be more comfortable and be able to rest more. Her doctors think the same thing too, but they can't send her home at these levels.
In the evening we watched "The Biggest Loser." Sam slept on some benches downstairs while I slept in a chair in Rachel's room and Karen slept in an empty transport bed the nurse let us put in the room for the night.
Today (Wednesday) we woke up hopeful that we were going home, only to get handed another "maybe today, maybe tomorrow" spiel. We knew what that meant, and sure enough, we were right. Rachel's kidney levels are down a good bit, but still too high to go home today. In fact, this afternoon a transplant nurse told us that they were shooting for tomorrow, but maybe not until Friday. This is not even due to the kidney levels, but with timing issues with the dose amounts and delivery of the medications through home care. We met with a transplant doctor who went over the medications and things we needed to get ready for at home. Every time we meet with him we're so encouraged due to his positive outlook and obvious care for my wife's health. It kind of softens the blow when he says "You might be here for two more days."
This morning I workout out in the stairwell for a bit, Rachel walked, and her parents decided to go home for the night for some better sleep and to give Rachel and I a chance to be alone together for an evening. Sam and Karen have been great throughout all of this. I can't even imagine how much harder this would be for both me and Rachel if her parents weren't so helpful and easy to get along with. They'll be back early tomorrow morning to hopefully pick us up and head home. If not...it'll be yet another night in Hopkins...
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