Today’s counts: Platelets ~ 86, Hematocrit ~ 29, ANC ~ 1863, Weight ~ 13.5
Holy cow, you guys! After a very difficult night, we had an awesome day today! For the last few days, Gregory’s symptoms seemed to be getting worse. Except he wasn’t throwing anymore blood in his urine (more than usual). I had also noticed that his urine was “normal” color. One of the drugs turns his urine a really funky orange color. I had mentioned it a few times, the last couple of days. No one took much note of it. Until this morning. (Thank you Kolleen!) The drug that helps to numb his urinary tract is called Pryidium. For some reason, they medication system here only allows it to be authorized for three days. Then it needs to be re-approved. Manually. 48 hours ago, this morning, someone dropped the ball and didn’t renew the orders. He had not recieved Pyridium for 48 hours. No wonder the symptoms were worse and getting worser (nice word, huh.). Last night was really rough. He just could not find relief. A couple Morphine/Benedryl cocktails with some Nalbuphine this morning. Once we had a couple doses of the pyridium on board he dramatically improved. We have started to get the benedryl in him at the first signs of itching and it has dramatically helped his “episodes”. He is peacefully sleeping and rebuilding his reserves.
We have a tentative plan. If we have a few days of no acute needs for meds, we are going to do a trial run of out-patient management of his symptoms. Which means we change the morphine drip to oral Methadone. Trippy, huh? My four year old will be taking methadone. He would still be on the pyridium and the oxybutinin. He would still be on constant IV fluids. This is the crux. They do a trial run and see how we manage it. Typically it’s so much work for families that they end up back as in-patient. I’m not saying that we are RockStars (well, maybe) but I think the payoff is so worth the effort.
The only thing I am really going to miss is the community that I have found here. Transitioning to the apartment will be a drastic drop in our social life. We will still be going to clinic, but it will take effort and timing to get there. Between a pump for feeds and a pump for IV fluids…….. It could be a very delicate dance. Also, the clinic serves adults, as well. Our link with families with Childhood Cancer is going to drop. Thankfully his counts have been steady, solid and fruitful. The only things that could effect his counts, at this point, would be an infection or injury. I’m hopeful that an increased play time, being busier, will not bring a drop to his counts. I honestly cannot believe how long we have been without a transfusion of any kind. His platelets are even high enough for a Bone Marrow Aspirate, if he needed one. No need to a pre-surgical platelet transfusion. His next BMA will be at his 80 day workup. I feel like I am really tempting fate, talking about how well he is doing. I guess I’m in a little bit of shock and a little guarded. Here within this setting, there is so much comfort and a sense of supreme safety. Despite the fact that the last week has brought very sobering news, from time to time, being here immersed in the world of “those that get it” is so comfortable. Even at Ronnie Donnie, there are few of us. Added to that the fact that we all will be at different places of our transplant Odyssey. The other night I was chatting with a few of the staff regarding the high number of Transplants that are currently in the works. There are 33 beds on this unit. The other day, 16 of them were transplant patients. Mind boggling. I think there are at least four actualy transplant days this week. I feel so fortunate that we secured our room when we did. there are really only six big transplant rooms. We are lucky, right now, to have one.
I promised discussion regarding his ANC. Here’s the gist of it. It takes a very long time for the marrow to normalize. 6-12 months. While he has a significant ANC, it is rather deceiving. He has parts of his white cells that are elevated and parts of his ANC that simply are not there and parts of his ANC that are not nearly enough. Which means his ANC is wacky and not quite functioning correctly. Well, as correctly as a “normal” ANC of 1800 would be. This is totally normal. His ANC will continue to jump (jump, jump around).
Alright then. It’s time for me to enjoy a plethora of “newish” comfort music. ’til later, gotta jet.
This song always gets me. One of my favorites. Despite the attachment to Jerry McGuire.