tom's blog

What happened to July?

Hard to believe it's August already. The summer really is flying by.
Anna's continued to make steady progress over the last few weeks. Around mid-July, they really started pushing her to gain some weight. She had dropped a couple pounds after leaving the hospital, and they really wanted to see her putting some weight back on. The biggest problem was her taste buds, in that everything tasted metallic and it just wasn't pleasant for her to eat. They wound up pushing her to use a Hydrogen Peroxide mix as a mouth wash, and that slowly got rid of the coating that had been lining her mouth and allowed her to start tasting food again. Over the past 2 weeks, she's put on about 9 pounds, and is eating much better. She still needs to add a few more pounds, but is definitely heading in the right direction.
She continues to have twice a week treatments, but it's all been on an outpatient basis, so we're all happy about that. Some days, its just blood work and then a checkup with the doctor... other days, they keep her for fluids or additional IV meds. Her legs are still pretty weak and she definitely needs help at times, but she's much stronger than she was when she left the hospital. I think she takes about 40 plus pills a day, plus a home IV, plus insulin... so she's got a ways to go, but some of the meds are beginning to taper off a little. The progress feels pretty slow day over day, but it's really right on schedule and it's just going to be quite a while before she's able to be around people and participate in normal activities. She's snuck in a couple little trips to the supermarket or Lowe's. It's nice to see her moving around a bit.
Everything else at home is good... we just sent in the first check for TJ's Pre-K4 nursery school classes. Another 5 weeks or so, and he'll be going to school. Time sure does fly.

Outpatient Treatment

Anna has been home almost two weeks at this point, and continues to be treated on an outpatient basis. For the first few days, she was provided with a home IV system and after a little practice, it became relatively easy to administer. She's still on a pile of pills... really, it's a pretty good quantity a few times a day. But, those also are starting to decrease, which is a good sign. The dosage for the steroids has already dropped a couple of times, and should continue to taper off over the coming weeks. That'll be a big one, as the steroids really do mess you up pretty good. She also continues to go to the clinic twice a week, to have her numbers checked and to receive some medical care. The one day that she is there, is pretty much a full day appointment, as they administer treatment via IV over a pretty long period of time. The second day is a pretty quick check in.
Her energy level fluctuates a bit, as does her strength, but this week was definitely better than last week. She's spending more time out of bed, and at the kitchen table, or sitting on the couch, or even some time in our home office. She spent some time this past week putting together some materials for the Light the Night Walk 2010, so be on the lookout for the letter. We participated last year and raised over $10k, so hopefully we can do the same again this year. It's a pretty cool event. They did a really nice job last year, and I'm looking forward to it again this year.
Everything at home is OK... she needs to be in the house, and can't have visitors at this stage, so we're pretty much homebound. I go to work and hit the supermarket/Costco, but that's about it. Anna's mom's been staying with us for a bit, along with Norma, so TJ's care and the cooking/cleaning are pretty well covered at this point. 
Happy 4th!


On Tuesday, the doctor let her know that barring any setback, she'd be cleared to go home on Wednesday. After the roller coaster that we've been on the last few months, I was a bit nervous about it and did my best not to even think about it. On Wednesday, the doctor checked her out and issued her discharge papers. It's a bit of a process to get discharged in that she needs to be disconnected from everything, and then go through her home medicines. I went over to the hospital and was able to meet with the nurse who was handling all of her home meds. We have a very large shopping bag worth of pills. Everything imaginable... and different instructions for everything. It took about an hour to go through all the instructions and get all of the info about home care. In addition to just the pills, we also learned how to check her blood sugar (and then give insulin shots depending on levels), and were setup with a home IV system. The US/Algeria game was on in the background as she was explaining everything, and I almost jumped out of my seat when Donovan scored that goal.
We made it home Wednesday and started getting settled in. With the combination of everything, she's a bit shaky and really doesn't have too much strength. I'm not sure if her feet got caught up on something or what happened, but somehow she tripped and fell in the kitchen. I was upstairs with the kid, and Anna's mom was downstairs with her. She banged her knee up pretty good, but other than that, didn't do any major damage. Sure would have been nice just to have a quiet night with no excitement, but I guess that wasn't meant to be.
Thursday was a quiet day with no doctor's appointments. It was the first time in ages that she had a day with no doctor's checking her out.
Friday she had her check up appointment and it turned out to be an all day event. They had the first part of the check up in the morning, then wanted to administer some fluids and other things. I think she was over there from about 10am-5pm, which is a pretty long day for anyone, but especially her these days. The doctor was pleased with her progress and likes the way things are looking.
The weekend was pretty quiet in terms of medical care. Normal routine of having someones family members around to help out with care, cooking, etc... TJ's been thrilled to have mom home. It was really nice to see him react when she first got in. She's moving pretty slow, and still has both the picc and port hooked up to her, so he really can't play too much with her, but at least they can be in the same room and watch TV or read or something.
All in all, things are moving forward and she seems to be on the right track here. She's on quiet a bit of meds, more than I can remember her being on in the past, but at least she's well enough to be home. The steroids definitely have the biggest impact at this point. She's on quite a bit, and it has a pretty rough impact on everything from sleep behavior, to moods, to eating, and really make her pretty shaky. Hopefully, those will start to taper off in a few weeks and then she'll be able to relax a little more.
It was nice to be home for a few nights this week, and actually have dinner in my own house and not out of a plastic container. We've all had to adapt to this new world that we live in, and we've made it this far. We know there will be some bumps in the road ahead... but, hopefully, the road ahead will be kinder to us than the road behind....