Hi Everyone:
Well, I am at Bob and Shelley's, and I have my own craziness going on, trying to set up a "home away from home" getting the bed situation in order, shopping for sheets and things that I need, trying to clean so that it can be "germ free" for Jim, despite the hopt. floors being the pits...(not to mention playing games with the kids and staying up until 5 a.m. for girl talk with Shelley. And we probably would have continued if Bob didn't have to get up for work... I think I've done more game playing with the kids than cleaning or anything else either. But I promise Hon. I'll get the work done.
But the "hard life" medal winner again, is Jim. Long story short. He was to go into surgery for the setons, to see what was up. So, 2 days ago at midnight, he starts his fast. But before that, he needed to get platelets at 9 pm and again at 3 am to be ready for surgery. So, the next morning, they wanted his platelet count higher, so they gave him more, and put off surgery for an hour or two. And each time they do this, he has to take benedryl so he doesn't have an alergic reaction. Benedryl with no food and water is very hard. So, they test the blood again. They now want to give him red blood cells, so they give them him. It's now 1 pm and no surgery. And 2 and 3 and 4...They finally tell him there is not gonig to be any surgery, with no reasons why. Again. it's totally the left hand doesn't know what the right hand is doing. It's like he's a mushroom. He's kept in the dark and fed horse manure. So, it's now 6 p.m. and they tell him they can break his fast. He calls to order food and the cafe tells him, No, you're NPO (nothing by mouth) He insists, they hang up on him. This happened 3 times. Meanwhile, he ends up having 5 mins to place an order before cafe closes, and they are hanging up on him,not listening, and the nurses aren't responding to his call button, yada yada yada. And it was just emotionally taxing on Jim. Of course he's not told to fast again at midnight, and his SCT team of docs, come in this morning, perplexed as to why not only did he no get the surgery yesterday, but why then aren't they doing it today. If they decide to do it tomorrow. Guess what....He'll probably need more platelets. HELLO... And the surgery team is no where to be found or heard of, and nobody knows what is going on.
I'm feeling a bit bad that I'm not there taking care of the situation, but I have about just as much power, so I guess that really doesn't matter, but emotionally I feel bad.
We still don't know when the surgery will take place. On top of that, we don't know what they are doing in the surgery, or anything about it.
They also took Jim off the one GVHD med because it's messing with his kidney But they don't come in and discuss this. Nurses come in with meds, and Jim asks, where's the cyclosporin .... "Oh, they are cutting that because of your kidney numbers." And off they go. Well, what the heck does that mean. Why didn't the docs tell me. And vice versa. Nurses come with meds and there's 2 new ones, with no rhyme or reason or explanation. Despite Jim previously having been on one of those meds with bad side effects. Sigh.
Still pray.
I'm off to the hardware store for the plywood they are cutting for me.
5 comments:
I just read about the hospital craziness. Lord help !!! Our small group of ladies couldn't wait to ask about Jim and You today because it was before the operation last time we were together. They feel like they know you because every week I've been sharing and they are praying. I'm listening to the Dolly "soaking " cd and thought to check on You two. Who knows but God why stuff like what happened today and yesterday are allowed. I read a book by Joni E. Tada "When Jesus Weeps". Of course she dosen't have the answers either but to say :He knows and cares . Sometimes it helps to know you're not the only 1- and it's not about wanting others to suffer but it just helps to know your brothers and sisters in Christ are suffering with you.:"1cor/12:26 If one part suffers every part suffers with it". I hope this dosen't come across as trite. I know so many hearts who truely care what is happening to you in Bethesda. Love and praying for change in the hospital situation. MJB & JB
Hi MJ:
My word, no, that doesn't sound trite at all. It's actually very encouraging. I always like what you write. :)
I love you sister.
Thanks for all your prayers.
Dolly
Hello Gloria and Jim,
What a day dad had! (Dr. Seuss). That sounds like a most miserable and frustrating day for Jim. I trust they eventually brought Jim some food? We continue to pray daily and long for you guys to have some respite: respite from being in the hospital, being away from home, having other people make decisions for you, etc. We long for you to be at home, feeling well, worshipping at our church, teaching us how to play Settlers of Catan, etc. Until then, we will pray for you to find respite in Jesus moment by moment, one breath at a time. We love you.
Amy and Brian
P.S. What's the plywood for?
Thanks for your prayers Amy. And we long for the same things that you long for. It's nice to know you want that for us, as well. We too really want to worship with you guys at church. I want to ring bells again. And we really want to beat you in catan....I mean teach you catan. ;)
Tell the kids I said hello and Brian as well.
We love you guyses
Oh, The plywood? I thought I would built a boat in my free time, and...actually it's the base for the foam mattress that I bought from Costco. I didn't want to fuss with boxspring and all that. I got a frame from the local warehouse club that Shelley belongs to, and the plywood, which meant it only cost me 89 bucks for the base of a queen bed. Not bad. After that, I can use the plywood for that boat. :)
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