We are aiming for transition to out-patient on Sunday.
Counts:
Tuesday, July 28: Platelets ~ 138, Hematocrit ~ 25, ANC ~ 1608, Weight ~ 12.8K
Highlights with the OffSpring (or OddSpring, Freudian texting?):
Sunday, arrival and overwhelming, OMG I have three kids and they are all here! It was challenging enough parenting three kids before..... I am so grateful for the support that I have. It's going to be tough transitioning back to HomeHome, but Larry's pretty awesome and we will get through it.
Monday, We hung out at the unit. The knitting group was here and AnnMarie and I spent some time sitting, chatting, learning. AnnMarie has officially been taught how to knit. So thankful that someone else did it. She is now the proud owner of a pair of yellow needles, whose tips light up and a skein of bulky yarn to practice with. She carries it with her everywhere. (Wonder where she could have learned THAT?) She is so terribly proud of herself. When we get HomeHome, she and I will have to refine her skills and get her started on a project.
Curtis found the X-Box 360 and was happily occupied for quite some time. We then got out of the hospital to run a few errands and be together. While I'm sure that they have been washing hands at home, while they were here we had a crash course in keeping germ free.
Opening the bathroom door with a paper towel, if it's a push door use your elbow or hip, do not use railings on stairs, ask for wrapped straws, if you do touch stuff don't rub your face or eat, hand sanitizer gel, hand sanitizer gel, hand sanitizer gel............ I think they are going to get sick of me asking "Did you wash/gel your hands?" They are also quickly learning what Gregory can/cannot eat.
Tuesday~ Movie and a Pass. Why oh why, did no one tell me how sad the beginning of UP is? Curtis, AnnMarie and I decided we needed to catch a flick, together. We went to see UP. The first ten minutes of the film were heart breakingly sad. I was full on bawling. AnnMarie would stroke my arm, from time to time, and tell me, "Mommy. It's ony a movie." She said it with all the comforting that I would use with her. Facial expression and all. Priceless. All in all, we enjoyed it. When we got back, we were able to take Gregory out of the hospital for a four hour pass. We went to the apartment and hung out together. After Gregory checked out the apartment he dive bombed the fridge. He had some mini-pancakes with Syrup, some string cheese and some cheese pizza. Huge improvement. It's amazing how a change of environment can do that.
Curtis and AnnMarie, with Nana, left Wednesday morning. They pulled through the entrance to the hospital and we said our Goodbye's. It was a rough one, on me. I wound up bawling, again. While my spirits regarding Gregory are lifted, the exhaustion is huge. New baby sleep deprivation doesn't even compare. I've noticed that my heart is much lighter. Not completely free. I don't think it ever will be. There is a part of it that will be sequestered away. Guarded. Kept under lock and key. This heart breakingly beautiful child has/is going through something so unimaginable. While the rest of us wait and watch. Silently holding our breath, waiting to exhale. I'm giving myself the next two years. One for recovery, one for safety. Provided we don't have any glitches along the way. I'm hoping my sense of safety will begin to return. It will be different, of course. Quietly watching and waiting.
I have yet to mention the crazy weather we have been having. I haven't seen a single news report in weeks, but it has been agonizingly unseasonably warm. Triple digits, too. The power grid that contains Seattle Children's went out last night. Thankfully they have generators for back-up power. It did get a little warm, air conditioning wasn't on reserve power. I'm just grateful that we weren't out-patient. I don't think Ronnie Donnie has back-up power.
Gregory has been receiving Bennedryl at 22:00 & 4:00. Every night. Last night, it was not communicated that he needed a 4:00 dose. At about 5:30 this morning, he started crying, itching and was in pain. It was a good challenge. He certainly still needs his nightly medication. We will be managing his symptoms out-patient. Which includes extra fluids, but not IV fluids. We are giving water through his nG tube. He seems to be tolerating it well.
Thursday Counts: Platelets ~ 157, Hematocrit ~ 26, ANC ~ 2482, Weight ~ 13.1K
His counts seems to have stalled. Which is totally normal. The items that make up his ANC are all over the place. High were they should not be and low where they should not be. Which wacks out his "actual" ANC. His hematocrit has been bouncing between 25 & 26 for about a week. We will be receiving red cells before discharge. That way we can get them while still in the hospital and not have to deal with the whole waiting game.
Gregory tossed his cookies, this morning. About 30 minutes after receiving his AM meds. Which meant that we had to re-dose him. He has been transitioned off of the Morphine drip and onto oral Methadone. He receives an AM dose and a PM dose. I think he processed more of his meds than we thoght. It's nearly 2:00 and he is STILL sacked out. Which is totally OK with me. I'm sure he can use the sleep. It just means that we will be night owls, together, tonight. When we started him on the Methadone, boy was he stoned. It took a few days for him to adjust to it. They started him out with a fairly healthy dose the first 24 hours. Simply to jump start the level, before turning off the Morphine drip. We also switched all of his itch/pain meds to oral. The pharmacy team gave me a list of all the meds that we will be going out-patient with. Yikes! It's long. He receives meds at 6:00, 8:00, 12:00, 16:00, 20:00 & 24:00. Along with his 16 hour nG feeds and his 10 hour Magnesium via IV. Once a week dressing changes and daily Hickman flush. We are going to be busy. We will be going to clinic two days/week. At least to begin with. Monday's and Thursday's. We will see how it goes and we might need to add an additional day, depending on how it all goes.
I feel like I'm tempting fate, by putting all this out there. Sunday will be smooth, as will next weeks clinic appointments. I'm going to miss these people, like crazy. I'm preparing myself for the world of non-pediatric focused care. While our team at SCCA is pediatric, the clinic is not. I'm stealing myself for the stares and comments. The stolen glances, questioning eyes and faces filled with sorrow. What they won't realize is that he has already been through the ring of fire. This Phoenix is activiely rising from the ashes. Rebuiling himself. We are currently at day 49. Day 60 is August 9. They will be doing another Chimerism test. Checking to verify that his cells from perhipherial blood is still 100% donor. I'll be requesting positive energy, as we get closer. Heck, send it now. We can use all we can get.
This has been a large and disjointed entry. Thank you for following along and I hope it made some kind of sense. Hopefully, I'll be in a better position to post regularly again, soon. I'm not in a funk, just extremely guarded and protective. 'til later, gotta jet.
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