I'm sorry for not updating the last couple of days, but things have been hopping here! We've been going to Clinic every morning, and a "quick lab check" turned out to be a little longer. Friday morning Torie's platelets were down to 9, so she got transfused. We got back to RMH for a nap, and Torie woke up barfing and having diarrhea. Yesterday morning at Clinic she got a fluid bolus and had her TPN changed. We did two more fluid boluses yesterday and today, and she seems to be doing a bit better today. Dr. Wes thought yesterday that she may be dehydrated and her labs this morning were better. Some good news - WBC's 3.1 and ANC 2480! She gets to stop GCSF (Growth Colony Stimulating Factor) when her ANC is more than 2500 for 3 days. I'm a little worried that she's going to continue this dehydration...her weight is down to 13.9kg, and she's not getting near the fluid she was and she is still on the 2 same diuretics. Hopefully we'll see some changes in the morning. I didn't think it was possible for Mom and I to be more tired than when Torie was in the hospital, but we are. Between being up in the night, giving all Torie's medicine, and keeping up with the laundry, we're pooped! But it's totally worth it to have her here and doing better.
Josiah is doing so well that he got the day off from Clinic today - Hooray for Si! We are so thankful for the support from his family. Remember those silver linings? They are one of them...we're lucky we got to meet new lifelong friends and to be able to go through this at the same time. Wyatt did great with his surgery and went back home to Florida. I hope the next time we see them both Wyatt and Torie will be feeling much better. Gracie is here now...I got to meet her little cuteness this morning, and we are looking forward to spending some time with her and her parents...our Hurler family keeps growing. There's another silver lining! We sure wish it was time for Rylie to come back. We can't wait to see her and her family again.
Grow cells, grow! Vic-Torie!
We miss Rylie too! It was great to meet you this morning as well, and hope to chat with you some more this week. :) Keep growing those cells, Torie!
ReplyDeleteAww, shucks! We really wish we were there. We're missing all the fun! Sounds like it's been a nutty there for you all. Hope things get resolved with Torie's weight and hydration soon. And I wish you lots of good rest this week. We remember thinking, "It was easier in the hospital!" Every time we turned around it was time for another med. Hopefully Torie will be tapering off of some of those soon and then it gets so much better. Hang in there and give Gracie and family hugs from us!
ReplyDeleteLove,
Rylie and family
So happy that you are all still at the house! Hopefully, you will all get some rest soon.
ReplyDeleteLove & miss you guys!
Aunt Lettie
Torie, I just heard that you are not throwing up much and actually drinking a little milk. Hurray! Keep those Marshmallows (WBC's) and ANC's coming up. I love you Grand Baby!
ReplyDeletePapa Tom