Day 21- and my birthday!

I had a decent birthday, considering. I guess it depends how you look at it! I was celebrating with Alf, who shares my b-day, and at the very start of my Hulu marathon in the AM I fell asleep and didn’t wake up until about 2 PM. It’s ok though because I really needed the sleep too. I knew I was feeling pretty anemic last Friday, and Saturday and Sunday I noticed I was looking pretty washed out. When they checked my labs on Monday it showed my counts were almost to transfusion levels. They have given me Aranesp, a blood product I take to bring my counts up, but they gave me a low dose and usually it doesn’t bring it up enough to be very effective. I highly suspect I’ll end up needing a transfusion before my counts come back up. They don’t realize here that it’s not as simple as Aranesp in a transplant patient! Today they drew all my iron levels to see if I am low on iron and they started me on an iron supplement. That kinda makes me sick, but I know it may be necessary. If my iron is really depleted, I know my docs at Pitt or HMC will recommend an iron infusion. Hopefully they aren’t that low because IV iron is so hard on my body. I also asked them to draw a prograf (anti-rejection med) level because my hands and feet feel like they are on fire. That could be the neuropathy acting up, or it could be high prograf. Since I don’t know and it needs to be checked anyway, I just asked them to go ahead and do it.

I graduated from Occupational Therapy today! I had no idea I was that close, but she came in today and asked me if I was ready for my last session of OT. Even though I could barely lift my head and was sleeping because of the anemia, I got up anyway and went so I could finish up. She is out of town on Friday so I wouldn’t finish up until Monday if I didn’t go today. It was a nice b-day surprise. Now I can focus more on PT. I get so tired doing both, so hopefully now I can do more in PT and speed that process up. I’m doing well. I’ve learned how to do stairs well with a cane. I know I will need a cane for a while at home, but I should be able to get rid of it eventually. It’s so slow though! I hate that it takes me SSSSOOO long and so much effort to go up and down stairs! But, at least I can and am not crawling up the stairs anymore.

My walking is a lot better. I still wobble sometimes and they have to grab the gait belt to keep me from falling, but I am more steady and feel more confident on my feet. I’ve been more wobbly this week than last simply because of the anemia, but I think once we get that fixed I’ll be better again. They are working on helping me learn how to get back up when I fall down, but that didn’t go so well. I was on the mat and tried to get back up and I couldn’t. They realized I still have a ways to go on strengthening in order to do that because even though I could crawl to the nearest piece of furniture and push up some with my hands/arms, my legs wouldn’t let me get up the rest of the way. They had to pull me up. So, I definitely need to strengthen my legs more. They are also helping to strengthen my lower abdominal muscles. We can’t do much with upper muscles because I’m not completely closed over my liver and it could cause some damage.

My tube feedings are still only at 25/cc’s an hour and I’m having a tough time. I need the 5 hours off that I do get though…it keeps me from getting as backed up I think to have some time off for my gut to clear out some. I’m having problems with a lot of drainage now around my site which means that I am definitely getting backed up more now at this rate. My tube feeding formula is coming out of the tube insertion site, so my gut is really full and running slow. I even threw up some of my tube formula the other night and they had to stop the feedings for a few hours to let things move through. This is not a good sign…it means my intestines are definitely on the slow end again, pushing the formula back into my stomach instead of forward into my small bowel, and I might not be able to get my feedings up high enough to be off of them for very long during the day. I hope we can...I would really like to have the days off, but I’ll do what I have to do. We also haven’t increased the rate because of the anemia and some other labs being quirky. My protein and albumin are low (indicates overall malnutrition), and my WBC count is low…kinda scary because it means I am at risk for catching an infection and I’m not in the best place to avoid one!

After sleeping until 2 and then graduating from OT, I fell asleep during my Alf marathon again! Finally, in the evening, I was alert enough to watch more episodes and really enjoyed going back memory lane to Melmac! The activities director brought me a brownie with one candle…I managed to blow that one out the first time! I never do that! I didn’t have the heart to tell her I can’t eat sugar, or the will power to avoid it completely…so I ate a few bites and may just pick at it here and there over the next few days. It’ll probably go bad before I even finish it, but a bite here and there can’t hurt me much…right? ;) I received balloons from my parents and my life group while I was sleeping! It was cool to wake up and see them there! I also got almost 150 FB messages which was really cool and meant a lot! It’s been so cool to hear from so many people!

On Sunday, my mom is going to pick me up to take me to LCBC for the second gathering again! I can’t wait. It’ll get me out of the house for a few hours and with my very cool friends there. I love LCBC so much and being able to go last week totally helped me survive this week. After that, we are going to do something with my sisters and their families. I don’t know exactly what yet, but we will celebrate my birthday somehow on Sunday. My mom has suggested that we go back to the house after church for a while, but I told her if I went home for a few hours it would make it soooo much harder to have to come back to the rehab center. So, I think we are considering other options.

As I’ve stated a few times, I have adjusted quite well here. I like the nurses a lot and they know me well now. In fact, I’m a bit spoiled now  The cleaning team does a good job and knows how important it is to keep my place extra clean. In fact, I heard one of the ladies tell another how important it is to keep my room extra tidy. She’s really sweet and brought me some sugar free chocolate yesterday! The food here sucks…I don’t eat much of it, but I have to eat something in order to make up for the calories I’m not getting via my tube, and to make up for what I’m losing too because it’s definitely not all staying in! Mostly I eat the SF Jell-o, and they have REALLY good and creamy SF/Fat free ice cream that I eat. Other than that, I may pick at bread and toast, crackers, and occasional bites of pasta. The rest of it scares me! I’m not sure how it was prepared or where it came from! I’m getting REALLY sick though. Mornings and afternoons I feel ok, but by the end of the day I am really sick and having a lot of pain.

I’m keeping myself busy. I have my computer and mostly work on that…facebook, of course, and doing some G-PACT work as I have the focus. I have my Wii here, my iPhone games, books, word puzzles, drawing pad and pencils, and other stuff…I just kinda pick around at things. I’ve been having really bad headaches from the anemia and so worn out though that I haven’t been able to do much that requires much focus. But I’m not as bored as I could be considering it’s been three weeks, and right after three weeks before this. I still have plenty of things I can do to occupy my time. Rick usually drops by at least once a day to chat for a little while. He’s quite a character!

Overall, I think things are looking up. If you want to know specifically how to pray, these are the biggest issues I am dealing with right now:
1. Anemia- it’s kicking my butt and I can hardly get out of bed some days. It’s making my therapy a lot more challenging and slowing things down
2. Coping- I’m coping pretty well considering, but it’s still a tough situation to be in and I’m just ready to go home and start my life again. I realize I may be adjusting to a new norm when I get home. I have a hospital bed, but will be walking with a cane and have other adaptive equipment to adjust to once I get home. I’m used to a walker, and in some ways I feel more comfortable using that than a cane, but think I’m accepting the use of a cane more and more.
3. Trying to increase tube rate. It’s not going so well and I’m sick a lot. We need to consider if possibly switching to a diabetic tube formula would help me with some of my symptoms, especially blood glucose changes when not infusing. But those are lower in calories. They are also thinner though and may move through more easily…
4. I had gained a couple of pounds the first few days I was here, which may have been fluid weight in part because I was a bit dry, but I have lost a few again too because of recently being a lot sicker. I’ve been trying to avoid the phenergan and dilaudid because of side effects, but in an effort to do that, some of my other symptoms have worsened. I’m not sure which is the right direction to go…so figuring out a diet still that gives me a few hundred calories to balance what I am not getting in tube feeds and things that don’t make me as sick as I’ve been getting. More stability I guess is what I need.

I really do have a lot to be thankful for in spite of how challenging this has been for me. I have a room to myself here. My nurses know to stay on top of things so they are extra alert to my needs now. I have great friends who have helped me out in numerous ways while I’ve been here. I am improving. The Steelers have been winning  The social worker is trying to get me home in a situation where I can be more independent. I think I will go home and be much safer and have a lot of accommodations and resources I didn’t have before coming in. It’s been a pretty long haul, but I do see a light at the end of the tunnel. I am disappointed I will miss voting on Tuesday, but it’s a small price to pay if I can get better and go home and STAY home for a while this time.