The Good:
- Nicole was transferred from PICU back to ICS at 3 A.M. this morning (10/17). However, the early A.M. transfer was due to Nicole swapping places with another ICS patient who needed to go to PICU, which makes me sad.
- Still no signs of any type of infections or viruses; the medicines seem to have knocked-out everything, and nothing new is showing-up.
- They've done an Echo, and EKG, and a chest x-ray today, and everything looked good.
- She perked-up a little for a couple hours in the early afternoon.
- Still having (green) diarrhea.
- Still fevering. Tylenol helps.
- Elevated heart rate, frequently running in the high 160s to low 170s, and even spiking to the 180s, and it doesn't really seem to track with fever or discomfort. Morphine helps the discomfort, but doesn't seem to impact heart rate. Basically, since they took her off the heart medicine yesterday afternoon, her heart rate has climbed back up to what it was before they put her on it, although diuretics to help keep fluid off her seem to help a little.
- Nauseous; she has been very gaggy despite still being on IV nutrition (though she still gets a few meds via her feeding tube). Zofran helps - it seems to have staved-off vomiting.
- Got platelets again today. They checked her platelet count a couple hours after the infusion, and they were at 122.
- At 7:00 P.M, Nicole was transferred back down to ICU; cardiac function is still the biggest concern. It was a see-saw throughout the day on whether she needed to go back down, particularly since all of the tests they ran didn't turn-up anything, but they've decided to put her back on the heart medicine that she's been receiving this week (up until yesterday afternoon).
- More pokes in ICU.
- Nicole is now back on steroids. Despite the CT scan not really showing anything, GVHD can be difficult to 'prove', and there's not much else that could be causing most of these problems now (the other main candidate being transplant failure/leukemia relapse). Hopefully we see significant improvement over the next few days as the steroid (in conjunction with the anti-rejection med she's already receiving) have some time to take effect. They were going to scope her gut today, but called it off because she's not doing well.
- However, the steroids will not help with the cardiac problem - that's a separate game we're playing.
- There are 24 rooms in ICS, and Nicole has spent time in nearly all of them, but today she was in a room we've never had before. I think now there is just one room that she's still never stayed in - maybe we'll have to put in a special request for that one...
 |
| Sad eyes today. |
No matter how serious the trial, how deep the distress, how great the affliction, [God] will never desert us. He never has, and He never will. He cannot do it. It is not His character [to do so]. He is an unchangeable being; the same yesterday, the same today, and He will be the same throughout the eternal ages to come. We have found that God. We have made Him our friend, by obeying His Gospel; and He will stand by us. We may pass through the fiery furnace; we may pass through deep waters; but we shall not be consumed nor overwhelmed. We shall emerge from all these trials and difficulties the better and purer for them, if we only trust in our God and keep His commandments." [“Freedom of the Saints,” in Collected Discourses, comp. and ed. Brian H. Stuy, 5 vols. (Burbank, California: B.H.S. Publishing, 1987–92), 2:185] (http://speeches.byu.edu/?act=viewitem&id=734)
Nicole's journey has been long, and still continues, and many people have reached out to support us. From friends we have known our entire lives, to friends we met today and everyone in-between. We are grateful for family and friends. Most of all, we are grateful to God; through this entire journey, He has never deserted us.
No comments:
Post a Comment