I started to write some lame excuse for not posting. Something profound. When the reality is, I just didn’t feel like it. Things are progressing along.
His counts have been hovering right around these numbers for the last few days. Nothing dramatic. There is good/not so good news, though. His CMV was checked on Thursday. Good: The CMV cells are gone. Not so good: He remains on the Foscarnet 2x/day through the 13th, then once a day through the 20th. Once a course has been started, like antibiotics, you contiue until the regimine is through. Bummer. His kidney levels are holding. That is certainly good news. Keep imagining healthy kidneys, please.
Thursday night a neighbor down the hall shows up at our door and tells me he is ordering Pizza. He can get three Pizza’s for the price of one. He asks me, “What do you want?” Of course I jump at the opportunity. Make my request and he tells me when it should be here. The appointed time arrives, he shows up at our door. Passes over the Pizza, plates, parmesan, chiili pepper flakes and italian seasoning. He also has a grocery bag over his arm. He does a double check over both shoulders. Reaches into the bag. Double checks over both shoulders, again. Leans into the room, starts pulling something out of the bag. “You can’t have Pizza, without a …..” pulls a brown colored glass bottled from the bag and thrusts it at me, “……BEER.” Yes. Beer and Pizza. Pretty sweet. I cautiously cracked it open and poured it into my giant coffee mug and happily consumed it with my pepperoni pizza! Pretty sweet, huh?
In the last few days we have dropped Gregory’s morphine by half, then by half again, today. We have dropped the Ben/Reg (which is a antiemetic) and decreased the frequency of his Ativan, another aniemetic. His TPN has been decreased to 18 hours/day, with the six hours of being off it, falling in the middle of the day. Thursday he ate a few bites of Mac ‘n Cheese, a couple bites of apple with peanut butter and a few nibbles of a peanut butter granola bar. Yesterday he ate 8 grapes, a bite of cereal with milk and a bite of an oreo with milk. We will see what today brings. They would like to get him eating more. They are also talking about placing an nG tube, early this week. I’m quite apprehensive about getting it placed. I expressed a strong desire to wait until Thursday, when he has his first post-transplant Bone Marrow Aspiration. It is done with sedation and it would be so much better for Gregory to place the nG under sedation. Especially with the placement coming so close to his last experience. I am not looking forward to re-traumatizing him. I am going to fight HARD to get them to wait a few days. I really don’t see the rush. We have a new attending coming on Monday, so maybe it will change. He will not be eating/drinking enough to be off of fluids or supplemental nutrition. It will be a while before that happens.
Greogry’s sleep and emotions are all over the board. The emotion that is the strongest, for now, is tears and sadness. Last night he had a pretty large moment. He started getting weepy, out of the blue and did not want me to leave his side. We snuggled up together and worked through it. The hardest part is that I may tell him that what he is feeling is ok and it’s “just part of all this”, but I’m not sure at what level he gets it. I hope that at least my tone will bring him comfort. For the last few mornings, he has woken up and the first words out of his mouth are a very sweet and endearing, “Mommy, I love you.”
He has been getting out of bed ALOT more. Playing on the floor mat, going for tricycle rides around the unit, wanting to use the potty……. He is quickly becoming more active. Far from normal, but on the road.
Dad is on his way up. ’til later, gotta jet.