Our new normal – What is the Hemoglobin Count? This morning the last report from yesterday was 6.7 up very little after the blood transfusion (which was not the specific blood transfusion they were waiting on from the blood bank, they had to give him some blood and wanted to see what would happen), keeping my fingers crossed it will only improve.
We both got a little more sleep last night, I was so very thankful for that. I’ve been at the hospital since the 3rd and will take a run home to clean up with a good shower, pick up a few more things for both Austin and I while Jerry stays by his side. . Looks like we're going to be here a while so I picked up my laptop (tired of typing on a phone or Kindle) This way I can be a little more detailed, and it's so easy to cut and paste :-). Now when I do go home you might see a crazy lady, in a blue Flex, with the music turned up loud just singing out loud, that would be me, I miss my music in my day, I miss my normal.
Well his hemoglobin started out at 5.8 today, he had one unit of special blood with antibodies and then they started the Intravenous immunoglobulin (IVIG) - that took nine hours and was a pain in the arse since it kept setting off alarms on his IV (word to the wise, learn were the silence button is for when it goes off and ask staff to turn it down a little). Austin is sound sensitive but he's handling things pretty well. It helps him so much that I'm here with him. There are a few other patients on this floor who could use somebody, elderly with dementia, confused and alone, my heart breaks just a little for them. I have a new respect for nurses who carry too much of a patient load, it's impossible for them to meet the needs of all their patients immediately, they do the best they can.
They do have another unit of the special blood on hand but have decided not to use it now. I'm not sure what that means, I'm assuming they want to give him the one with the IVIG and see what happens, his hemoglobin count needs to stabilize or go up. Last report I had around 9 p.m. it was up to 7, we need it to be that or higher by tomorrow morning.
If this doesn't work he may need to have his spleen removed, we're taking it one minute at a time.
All the meds are taking their toll on him as well, we had a small episode of loose stools. I left the room to go to the bathroom, and of course before I left I asked him do we need to go potty, do you need anything. Well the kid is working towards his d END GAME, he wants to go home, so whenever anyone asks how he is doing he says "I'm fine". I just went to the bathroom down the hall and when I came back I found him in the bathroom with a small mess, thankfully he didn't rip out his IV getting there, and staff temporarily disconnected him from the IV so I could get him in the tub.
He's not eating well, doesn't like the hospital food. I did a little recon in the neighborhood – Coney Island across from the hospital, KFC a little further down and a convenience store just a block away (they have my favorite peppermints I buy at Cracker Barrel - so I'm in heaven but my teeth might rot - LOL I was good only bought one bag). Later I did walk to the KFC and got him a chicken leg, he did eat some of that (interesting KFC with bullet proof glass, don't see that downriver). I did call food service hoping that maybe they would have a pediatrics menu but they don't. Tomorrow I may run across the street and get him a plain hot dog, he usually has one a day.
He had a visit from Grandpa today, when I went home to shower and change clothes I brought my dad back with me, then Jerry left and took him home. He enjoyed talking to his teacher today, told him "I miss you guys", he keeps telling me he misses his friends and I use that to motivate him to cooperate, the sooner he gets better the sooner he might be able to see his friends. He is also asking to go home, wants to sleep in his own bed (me too!) He is working very hard, doing everything everyone asks and working hard to keep his anxiety in check. We've had more than our fair share of events that could have triggered (Tuesday night was rough with another patient screaming “help” all night long) but I've seen him use self-talk and taking deep breaths for calming, he has managed to keep it all in check.
Hopefully tomorrow I'll have good news.
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