Since my last post in January stating Jerry just got released from the hospital, he's been back in a couple of times and the day to day in between has been crazy... Filled with trips to the ER or trips to get blood.
Jerry just got released last night after another week long stay at his home away from home.
The latest is: jerrys bone marrow just drew the line. It had it with all the meds. They stopped half of jerrys liver treatment in January but it didn't help too much. By February he was pretty bad off again. I cannot tell you how scary it is ( and sad) to see your 53 yr old husband not even have the strength to hold his knife to butter a pancake.
Since I last wrote, Jerry has been in and out of the hospital, or the ER, etc multiple times. His bone marrow had quit functioning correctly which caused severe anemia and he has had multiple blood transfusions. Jerry just got released last night from a week long stay at his home away from home.
This last week at the hospital Jerry's care was switched (just for this stay) from the liver team to internal medicine and hematology. More members added to his team! Lol and team it was... Every morning they would conference outside his hospital room door then about 7 of them would walk in and discuss what they were going to try that day.
After a few tests and such it was determined Jerrys bone marrow is ok, it just cannot tolerate all the drugs anymore. So with him already not taking half the liver treatment, they took him off his Chrons medication also. That seemed to do the trick. His hemoglobin started rising for the first time in who knows when. We are only a couple of days into it, we will see how the numbers look this next week.
After an EGD it was determined that he has portal hypertension and verices. I'll let you google that but it's not great news. The verices aren't bleeding yet, so that is the good news. They are going to run a scope next week to look at the severity of it, we don't know right now.
Jerrys diabetes hasn't been behaving either, all the infections and meds etc caused the medical team to have to increase his insulin again. Sadly this last week his eyesight messed up and he can no longer read. We don't have eye insurance anymore so I'm praying sales will pick up and we can buy him some new glasses. Maybe his eyes just need some adjustment time,mad he lost the reading ability over night, so it might settle down, who knows. Now the selfish me is really sad because I look forward to reprieve from Stephen of an evening while Jerry reads to him plus I had tax stuff all ready to hand over to Jerry. I guess I best just buckle down myself and get it done. But I'm not as selfish as you might think because I am mostly sad for Jerry. He lost the ability to play guitar and sing a couple of years ago. Over the past year he lost the ability to be able to work, and even walk without aide most of the time. Now he can't read. Sigh.
I feel like we will have a short window here where things will be calm for a bit. Jerrys hemoglobin will rise, and he will feel like he's among the living again. I'd give anything to grab Jerry and Stephen and just get AWAY while we can. Take a week and head to Disney world or something. Somewhere warm!
Jerry says I'm a pessimist but I don't think so. I'm a realist. And the reality is... He has end stage liver disease, and can't take his full medicine.
He has chrons disease that almost killed him two years ago, and can't take his medicine for it.
He has beginning stage portal hypertension and verices.
He has severe diabetes, with neuropathy in both legs and feet, that has recently moved into his hands.
The reality is... we have a window. I, for one, plan to enjoy it.
We hope to go to church for the first time in months. Maybe not tomorrow as its supposed to snow up to 5 inches but soon. Very soon!
And I do want to go take Stephen to the indoor water park maybe, if Jerry feels up to it.
We have to keep KU attached at the hip but I'm going to make every minute of window time count!
Master Stephen has been a bit stressed. He got to the point where he wanted not much to do with Jerry, and his attitude wasn't great. He also wasn't sleeping well. But this last week helped. I kept Stephen away from the hospital and I spent two days home and devoted totally to Stephen. By the end of the week of not dealing with the stress of his daddy, Stephen got back to his normal self again and welcomed his daddy home with open arms. This is why I'd love to just take Jerry and Stephen to Disney world and make some kind of memories for the boy besides memories of illness, hospitals and doctors.
Im sure I'll be back soon to give more updates, but I hope not too soon :)