Hope Notes from Krista and Mike

Krista did much better today. We had a new milestone: she can now climb into bed instead of having to sit and roll! Once again, the key seems to be keeping on top of the pain. Doing that is now part of what seems to be my new full-time job as a pharmacist. I finally figured out a good method for keeping track of what she's supposed to get and when, what meds can be given at different times, which ones need to be taken with food or extra water, and which need to be taken on an empty stomach. This has been a surprisingly difficult thing to juggle.

While I worked out the schedule, the rest of the IVIG dose went in with no problems. Janice, our home care nurse, was very sweet; she brought Krista some extra clothes that her daughter and son weren't using anymore, including a brand new robe her son didn't like. What a blessing, since the medicines have swollen Krista up a number of sizes. This swelling is likely to last as long as she is taking so many of these medicines, maybe up to a year.

I apologize for the rushed post last night. I wasn't feeling very good -- I had a headache and was feeling nauseous. The culprit wasn't an illness, though; it was a horrible smell that comes from the wheelchair I had parked right next to my bed. I didn't know it was so bad, but I had a horrible night's sleep last night because of it. I finally moved it into the bathroom since I can close the door there and I can deal with the smell for the short time I'm in there. We tried exchanging the wheelchair for an older one, but it turned out that the one we had wasn't even brand-new! The smell is so bad it gets into Krista's clothes after she uses it. No wonder she's been having such a rough time since we came here. The hotel has some loaner wheelchairs which don't smell, and one them fits onto the shuttle. We used it today to go to the afternoon office visit and it made all the difference in the world. She wasn't nearly as worn out by the experience.

It's not that the office visit was all that different of an experience. There was still the endless waiting, but we did learn something that we can change to make things go smoother next time. The nurses had been telling us to just show up an hour early for the appointment to get her labs done, but doing so put us at the bottom of the priority pile. The trick is to make an appointment for both the labs and the follow-up, and that's how it's going to be from now on.

Labs were rushed, and all we got from them were that Krista's platelets were at 6,000. I don't know why, but she ended up getting another random platelet transfusion. We prayed for a good match, and so far there haven't been any fevers. We'll find out tomorrow afternoon if she got a boost from it.

Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.
For your name's sake, O LORD, preserve my life;
in your righteousness, bring me out of trouble.
(Psalm 143:10-11)