Search Results: days

Day +55
We went back to the clinic in the late morning after Grace threw up her NG tube.  She did manage to take her meds by mouth that morning, but she doesn't really like it.  They had tested her stool when she had so much diarrhea at her appointment the day before and it did come back... (More)
Posted by joyful on April 3, 2024, 8:44 pm
Category: Grace
Apartment Life
We are settling into our second week of being full-time in the apartment. Our schedule consists of: Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes Keeping her central line clean twice a day ( Boston Children's says cleaning twice a day is... (More)
Posted by jondaley on March 26, 2024, 9:13 pm
Category: Grace
Bone marrow aspirate today
This includes anesthesia and intubation and all that goes along with that. Please pray for her surgery and for the results. Thank you. An "aspirate" in this context means removing a small amount (7 ml in Grace's case usually) of the bone marrow fluid and a biopsy is removing a small chunk of... (More)
Posted by joyful on March 21, 2024, 5:13 am
Category: Grace
Home away from home
Grace did well her first night. I had a harder time because it was like having a young baby - changing diapers in the night; she did go on the potty. Jon and the older girls dropped Grace and me off at the clinic on their way home. Grace was not happy to be stuck in a clinic room. First... (More)
Posted by joyful on March 19, 2024, 6:52 pm
Category: Grace
Hospital Time
We've probably said it before, and anyone who has been in a hospital for any length of time knows that any time someone says "soon" that means 2-10 hours, and "tomorrow" means 1-3 days, etc.  So, even though I posted here that it could be Friday, I've been telling myself Monday, though as... (More)
Posted by jondaley on March 15, 2024, 6:34 pm
Category: Grace
Discharge?
The doctors started talking about discharge last Friday and that continued on Monday.  They decided to turn off the continuous morphine and moving more of her medicines to her NG tube. I was pretty skeptical that she was going to tolerate only on occasional morphine and I expected her to... (More)
Posted by jondaley on March 13, 2024, 5:30 am
Category: Grace
Family Weekend
We've had some full days since our last post, so I'll try to catch you all up. On Friday night, Jon and the girls went to Camp Maranatha for the annual father-daughter retreat and the boys went to Boston to stay in the apartment. We went to Target to get some maternity shirts for Heather... (More)
Posted by jondaley on March 13, 2024, 5:09 am
Category: Grace
Day +27
Grace had a great day today, despite staying up until after midnight (I went to sleep, but I asked the nurse in the morning, and she stayed up reading her new book and trying to not let the nurses check her oxygen levels since that would involve taking away her light...) She came to rounds in... (More)
Posted by jondaley on March 6, 2024, 11:34 pm
Category: Grace
Day +26
We have lots of good news to report. Grace has been improving the last couple of days.  Her abdomen measured 53.5 cm, the smallest it has been in weeks.  They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged.  The... (More)
Posted by jondaley on March 5, 2024, 10:54 pm
Category: Grace
Engraftment, Drainage, and God Answers
The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her... (More)
Posted by joyful on March 1, 2024, 10:50 pm
Category: Grace
Pain and Poop
The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)
Posted by joyful on February 28, 2024, 7:52 am
Category: Grace
Waiting and Watching
Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think,... (More)
Posted by joyful on February 24, 2024, 4:09 pm
Category: Grace
Quick Update Day +15
Please pray for Grace's intestines to heal. The doctor is concerned about her continued diarrhea, and so stopped all formula feeds for a few days. She's getting all her nutrition through IV. She will eat bites of things here and there, but is not really taking things by mouth either. This is... (More)
Posted by joyful on February 23, 2024, 9:11 pm
Category: Grace
Day +12
Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for... (More)
Posted by jondaley on February 20, 2024, 7:52 pm
Category: Grace
Good moments, Bad moments
Jon wrote today: When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments". This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't... (More)
Posted by joyful on February 18, 2024, 8:40 pm
Category: Grace
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