kjkblog

Tuesday, August 26, 2014 - 10:05

Yesterday was okay. She wanted to go back to the Inn where it was more peaceful and restful. Hoping we will be outpatient soon. Her abdominal pain seems to be worse. It is hard to say exactly. She has been experiencing it for weeks, but when she was on the Dilaudid 24/7, it likely masked some things. Plus she wasn't eating as much, plus she wasn't taking everything by mouth. All these things can muck up sorting it out. This is when they put their heads together and start figuring out the...
Sunday, August 24, 2014 - 13:09
Karly was able to spend the weekend on pass to the Children's Inn. We planned on going to Annapolis to experience Maryland Blue Crab on Saturday, but she didn't feel well enough. However, the rest of the weekend has been good. She continues to be anemic, so activity is limited. Eating and sleeping has been better. She takes so many medications that upset her stomach. Headaches, anemia, GI discomfort, and mild GVHD are all things that keep her not feeling well. Still watching for viruses and...
Wednesday, August 20, 2014 - 13:48
I'm still excited to be able to report that things are going well. Karly is asked everyday, "How's it going?" She reports the way it really is with how crummy she feels, yet she has better days than some. I have to say she is doing well for a transplant. Her HHV6 report is still low positive, but it is the lowest number to date. They will not repeat another Ommaya tap this week..and hopefully not next week either...maybe not at all if we don't see any changes. That's good, because it is pretty...
Tuesday, August 19, 2014 - 09:12
Sunday turned out to be a pretty good day and to top it off, Aunt Debbie brought fresh steamed shrimp dipped in garlic margarine. Karly enjoyed that immensely. Karly and Deana ditched Deb and me on our walk exploring campus. Karly couldn't stay very stealth with her noisy "Reggie" wheeling around.

Monday was another not so good day...more of the gurgling stomach, feeling nauseous, and headache. They removed the PCA(patient controlled pain medication) to IV push as needed. She went...
Sunday, August 17, 2014 - 12:52
Yesterday was a quiet day as is today. She didn't feel well most of the day yesterday. Stomach gurgling, diarrhea, headache, and nausea. Sleep was her friend. We did get outside for a long walk. That tired her out, but was great for us both. She feels better today, and my sister Debbie and niece Deana will be arriving soon. I find myself wishing for her to BE better without the ups and downs. I have to remind myself, yet again, to yield to God's plan. I was reminded today in the devotional to...
Friday, August 15, 2014 - 08:37
Karly is doing very well. They are gradually moving her off IV forms of the medications to liquid or pill form if small enough for her esophagus to handle. The Tacrolimus will be the last one to move over. It runs 24/7, so once this one is removed from IV, she will be untethered from "Reggie". Today she has a liver ultrasound and MRI of her Brain. Her liver counts are getting better. The HHV6 still came back positive with a slightly higher number, but for all such purposes those numbers could...
Wednesday, August 13, 2014 - 09:27
The word today is that it did come up positive, but they currently don't know if that is 1 or many. They will be tapping the Ommaya again tonight at 5:00 with all our hopes being it will come up negative next time. They will be stopping the nasty medicine because it is messing with the graph and because her liver numbers are even higher today. They think the liver number is from the nasty medicine because of the correlation, but it could also be GVHD so hoping it is not the latter. This will...
Tuesday, August 12, 2014 - 20:20
We should hear the news tomorrow about whether the virus is in the CSF.  Please pray fervently that this would be negative. Her liver counts were higher today, so they called in a specialist. How great if this would be normal tomorrow also. The biopsy wasn't in today either, so probably tomorrow. We will face tomorrow trusting God.
Tuesday, August 12, 2014 - 09:02
Still waiting on news from biopsy, although they say it might not be conclusive. Conclusive would be awesome. Her headache has increased, taking away the Tylenol because of liver and no Ibuprofen because of kidney/ She is allowed oxycodone but it doesn't work on her headaches. We are trying to get her off the dilaudid for a number of reasons, but they would allow it.

She remained nauseous with increased headache from the Ommaya tap all night. This should subside. Hopefully will have...
Monday, August 11, 2014 - 20:42
Things can change quickly. This afternoon her rash was worse, and just as I was noticing it, in walks the doctor I needed, her transplant dermatologist. It has been biopsied. I noticed on her labs this morning that a virus we watch for has appeared in the labs. It is the dreaded HHV6 which in Kelsey manifested as the brain virus. At this point, we cannot be worried. It is often seen after transplants. What to do about it is the problem. Because we don't have a context for this in a DOCK8 haplo...

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