I guess I haven't written here much because there wasn't much, medically, happening with Jimmy all at once. But right now, he kinda of has a lot going on so feels like a good time for an update.
Jimmy is having a hard time swallowing. Food, mostly. For whatever reason, he's "pouching" food in the back of his throat. As I understand it, everyone has pouches. His is just larger and holding a lot of food. He had a swallow study done a few weeks ago. It revealed the pouching. Food is going there and he's having to swallow so much to get stuff to go down. Even some liquids. The study showed him having to swallow like four or five times to get one sip of drink down. It's much easier, however, for him get liquids down, as opposed to food, so he's primarily on a liquid diet consisting of protein/weight gainer shakes, meal replacement shakes, fruit smoothies, ice cream and sometimes soup. He has/is losing weight so it's kind of a struggle to get those calories consumed. After the swallow study at Shepherd, he was referred to a GI doc. That doctor we met with this past week. He said that if it's a problem with his swallowing mechanism as he suspects (ie: swallowing muscles, etc.), that he would have to refer us to a Ear Nose Throat Doc, as he only deals with the esophagus and below. But he's going to rule out the GI part of it for us I think, and look into Jimmy's anemia. I guess the sliver of good news is that he doesn't seem to be aspirating which is very dangerous, and was a concern.
Jimmy is very anemic. After some recent blood work, his endocrinologist suggested a blood infusion which would probably make him feel better for the short term but wouldn't tell us what's causing the anemia. So Jimmy's GI doctor is going to check out Jimmy's intestinal tract to see if he's losing blood and if so, what needs to be done to fix it. Jimmy has been battling fatigue for a long, long time. We've tried so many things, meds, etc. We now have hope that he could possible feel better on that end. He's managed to get a few spinach smoothies down and takes iron daily, but it seems like there's a much bigger problem.
3) Skin Wounds
Jimmy has three skin wounds were dealing with. We've been visiting with his wound doctor a lot lately to try and get them under control. I'm sure him losing weight is not helping - and maybe hurting, or even helped cause all this. If he's boney, there's more of a chance for his bones to push through his skin to the surface when he's laying on that particular area for any length of time. Why is he laying on that area at all, you may ask? When he's laying in bed, he can be turned three ways. On his left, his right, and his back. He has a wound on each of those three sides. It's a battle to not put direct pressure on those wounds. And dealing with 5, 6, 7 or so different caretakers who all pad differently - it's work keeping everyone on the same page.
So all of this equals a very tired, very weak, very drained Jimmy. It's a vicious cycle. He can't eat much. He needs good energy and nutrition to help him heal. His body is weak from trying to heal. He's fatigued from anemia. He can't gain weight due to swallowing difficulties. Being thinner could be contributing to pressure wounds.
We've seen a lot of doctors lately and our team is working hard to get him healthy again. It's frustrating seeing him sleep all the time, but I know his body is dealing with a hella lot and until we solve one or all of these issues - then he's not going to feel great any time soon.
I remember when a UTI or a clogged catheter were our big concerns.
With that said, Jimmy turns 45 tomorrow. Although he can't eat cake, Reese's PB eggs or go for a big dinner out (something we could always do) -- he'll be spending the day with some friends who have traveled from Boston to spend his birthday with him. We've had several family visitors lately that has helped to lift his spirits. It soothes his soul and provide healing powers of it's own.
Positive thoughts, prayers, texts and calls welcome for your boy. Even if he doesn't answer or text back - know he got it and that it will help.
PS) If Caring Bridge is the only way you keep up with Jimmy, then you may not know (although I can't imagine!) we had a baby girl in late October! I write a lot about Spencer Rosalyn on my personal blog, here. She is Jimmy's ray of light.