**This blog has become a journal concerning my husband's health. My quilt blog is now moved to HillbillyQuiltShop.blogspot.com). **
I've said before that my husband is a super hero, but he had a recent doctor actually call him that. Since it was his favorite doctor, that was a plus and he needed the smile. If you are just coming to the blog, you need to read back several posts as I am not going to get into what all is wrong with Jerry. I am just going to list the new stuff. I really had no idea that one person could have so many different things wrong with them and still function. Here are the newest changes:
This is the latest life threatening obstacle that Jerry is facing. Last Tuesday they went in and banded four varices. The doctor said that 2 of the 4 were very dangerous and about to blow. He has to repeat the process every 4 weeks or so for now. They actually run a sonogram down his throat and then band while in there. He is of course knocked out during, but for the next few days afterwards he really struggled with eating.
Varices is life threatening to anyone but to Jerry it is even more so. His blood has antibodies from so many blood transfusions. If one decides to blow it might be impossible to get him blood in time, as his blood takes about 24 hours for the lab to 'work up'. So, these must be monitored closely.
Bone Marrow Failure:
Jerry's bone marrow is on strike. Really, it is! It has been having issues for awhile, leaving him anemic for a couple of years, getting worse about a year ago, then in January the marrow went on complete strike! Last Thursday, we saw a specialist concerning this, and it was really interesting to see the graphs showing the January dive. Jerry's body cannot make blood on his own right now. At all. So every week to ten days he gets a transfusion. The rest of the time he remains very anemic. The doc's try to keep his hemoglobin levels at 7.2 or above. (Normal is 12-14). I have seen him pale and yellow for so long, I don't know what his normal skin tone is anymore!
The cause for his bone marrow failure is medication. So they removed him from several medicines to give the bone marrow a chance to kick back in. The only scary part is, he's no longer on Chron's medication. If you've known me for awhile, you know all this craziness started almost 3 years ago when his Chron's disease went haywire.
High Blood Sugar/Diabetes:
For some unknown reason, the blood sugars are not staying under control. The bad news? He cannot take anything but insulin. The extra pills that others can take to help control it, Jerry cannot take. So, his high blood sugar (even with eating right and insulin) is causing things like the next point...
Diabetic Macular Edema:
You'll have to read up on it in the link provided if you want to know what it's all about, but basically at the moment, Jerry is going blind. He can no longer read, drive, and some days barely see. His right eyesight is bascially gone, left is headed that way. BUT there is good news here. They started a treatment on him today in which he gets a shot right into his eye. This shot reduces the swelling and fluid retention. Next week he will get a shot in the other eye. Each eye will get a shot every four weeks (each one week after the other) for 3 or 4 treatments. Then they will access the situation and decide what to do from there.
The shots should drain that fluid and allow him to see again. The only problem is his blood sugar. If he wants to see, then he has to fight, fight, fight to keep it under control.
While Sciatica is common, it can be treated in most people with pain killers and steroids. Not with Jerry. He has to suffer through it with NOTHING. Some days he hurts so badly.
How is he mentally?
He's ok. Obviously he's in pain, weak, bored, discouraged. Just hard to lose your vision when all one can do anymore is watch tv and read as it is! He's not happy that he can't drive right now. The sciatic pain is so severe at times, I think that is the most discouraging of all. But he keeps fighting and doing what he can to continue in his super hero state!
How is Stephen?
Stephen went through a stage where he wanted nothing to do with his daddy. Nothing at all. But he's over it now and so sweet and helpful. In the last few days, several of my friends have surprised us by sending him goodies and I cannot tell you how the distractions have helped him.
He learned to read his first little phonics reader this week, and I devote most of my day entertaining him really. I try to get him to little kid activities, and play groups etc but it's so hard when we are at the hospital all of the time!
But God knew that when he created my sweet young son and he's doing ok. The home health nurses love him. He has acquired several vials of blood (red food coloring in water), syringes, other medical things from them. Wonder if he will be a doctor someday?
How am I?
I could say stressed. Exhausted. Overwhelmed. These are true but you all know you would be feeling the same if in the same situation, I mean, who wouldn't be? So that is the obvious. I stress more about financial stuff than any of Jerry's stuff. Its horrid to say, but I am now used to him having things wrong. They don't stress me anymore. But financial does. The eye treatment center is trying to get financial aide for the shots. We have insurance but it, of course, never covers everything.
To help relieve stress I am selling off everything that I can. I sold my nice sewing machine last month. Many were shocked but, guess what? I have fingers that can sew, and no time to sew anyway. And I now have a few more bills paid off. That is way better than having a sewing machine.
I do grow tired of shouldering the world of burdens around our home. Jerry, financial, sole playmate to Stephen, work, quilt design, I just cannot get enough hours in to do any of them so I usually just give up at the end of the day and go to bed even more behind. Like tonight. That is what I will do in a minute. I need to go down and cut fabric, and ship fabric. I need to close photos in my fabric group. I need to get ready for a video. I need to do dishes and laundry. It piles up. I need to clean.
But instead, I am going to shut down and just go to bed. It's been a long day.
I am ok guys, seriously. I am upbeat and postitive and I have learned that NOTHING comes before family.
I get so sad when I see people get downright angry over not having time to sew or do what they want to do because their kids or family got in their way. I used to get so on edge when I didn't have solitude at least once a week. I don't get solitude anymore. At all. But I'm not all on edge about it anymore. I've grown up. Alot. We never ever stop growing up if we allow ourselves to learn from life. I'm still growing up and learning lots. Ha! And medical...I've learned enough there to write a textbook I think!
By the grace of God, the Owen's family story continues.. one day at a time!