We are still here at nice little Madison Hospital. We are ready to go home. Hopefully tomorrow.
The doctors and therapists recommend going back to rehab. But Zine does not want to. So…I will be taking him home against medical opinions. (First time we’ve ever done something like this.) But truly, I do not think he is well enough to go to rehab. I don’t know if we can put our family through that again. And we have decided to no longer treat the MS, so there is very little rehab that can actually happen. The more PT we try to do the more his body literally stiffens and rebels. So I think we just need to admit where exactly we are and however solemn it makes us, we need to operate in reality and not some make believe land. The therapists here have taught me some tricks today to better be able to help him. He does not like the gait belt…but it’s just going to be part of life I think. And I’m sure they will have some more tips for me tomorrow!!
His pain is more manageable and today we have moved from IV pain meds to oral pain meds. He still has waves of nausea. And if you touch near his pancreas it still hurts. But his enzymes have come down a lot! He is VERY weak! But he did sit in his chair awhile today. At least a bit different position!
Today has also had a lot of emotional struggles as well! There are definitely many emotional struggles that have to be worked through. But for now, I will simply say we are exceptionally sad at where we are in life right now. Please don’t ask us what we need or how you can help. We don’t know! So if you know of something you want to do, then just do it! We simply are trying to figure out how to function and make life work. This kid goes here, that kid goes there, Krisann comes to hospital with me, etc. And as we think about going home, there’s thoughts of how to function and how we are going to work on building strength back at home, and am I really going to be able to do what he needs, and is he going to listen and follow the rules, etc. It is SOOOOO hard to lose your independence!!! Especially for a man! My heart hurts so bad for him…love deeply hurt deeply! And other times….well…I think I could shoot him! So I’d say we have a pretty normal marriage. So that’s where our thoughts are all centered. Beyond functioning, we don’t see the needs or anything! Just in our own little world trying to make it work.
I am trying to make a decision right now so I would appreciate your prayers that I would make a wise decision! Continue to pray for Zine to feel better and for strength to be regained. I know we will never get back to where we were, but if he could feel a bit better and have a bit more strength that would be nice!!
We are probably going to have a LONG night here tonight! I forsee it in my future. So just pray!! Not to mention, I am exhausted to begin with. And he is so sick. So anytime he loses sleep it does indeed wipe him out and he’s already wiped out, so if this is a no sleep night as I suspect….it’s going to take an even further toll on his body.
I would never take his picture with him being so sick! But I’ll share a couple of my tired self. The first one was taken early in the week. And I just thought I was tired then.
I was thinking….I’m so tired when I took that first picture. But scroll on down to the bottom two pictures that I snapped tonight…I’m thinking the first one…I wasn’t so tired in after all!!
So if you can see the week has taken its toll on me! I have tried to take care of Zine, check in on my kids and take care of my girls when Conner wasn’t around or at least make sure they were taken care of, and try to keep up with my school work. I have videoed at night and posted for the next day. I didn’t realize how much that had added to my plate until tonight I didn’t have to do that because I have a sub tomorrow. And I have been like thank you Jesus I didn’t have to do that tonight. I have also had to fight for every bite I have put in my mouth!! I haven’t even kept up with what I ate this week because I know it has not been great. But I’m hoping I have eaten enough to not lose weight. Some days have been better than others! But…it has been a HUGE struggle for me all week. But at least this time I was aware and have made some strides to do better than I typically would have done.
I have told Krisann this verse numerous times this week and have quoted it to myself many times as well. Be strong and courageous do not be discouraged for the Lord your God is with you where ever you may go.
Continued prayers for your family. Please know that Chloe is on my calendar for next Friday (May 13th) for her allergy doc visit
Thank you!!