Search Results: week

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 +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
Hospital Helper?
Our family will be in Boston next weekend (after the father-daughter retreat at Maranatha) and we are wondering if there is anyone who would be willing to spend some time at the hospital so our whole family (minus Grace) can go out to Boda Borg and the same  sushi buffet  that some... (More)
Posted by jondaley on March 4, 2024, 10:21 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
Visiting Instructions / Mailing Addresses
As of April 8th, we will be home and the information in this post is out of date. Click here (or see below) for instructions to visit or send us mail. Hospital Mailing Address Grace Daley, 6 West Boston Children's 300 Longwood Ave Boston, MA 02115 Hospital Visiting... (More)
Posted by jondaley on February 19, 2024, 1:50 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
NG tube no fun
I walked home late Monday night, because there was supposed to be this big snowstorm. Jeremiah was already asleep, sprawled all over the bed. In the morning, it was only raining Jeremiah and I had leftover pizza for breakfast, and we walked to the hospital in the rain. The nurses and child... (More)
Posted by joyful on February 14, 2024, 7:45 am
Category: Grace
Day +1
Faith steadily improved throughout the day as she slept through most of it and has now transferred to our Boston apartment. She got a present (mailed to Grace at the hospital) so that was fun. Grace's diaper rash did not get worse overnight, and without oral meds, she ate well and did not... (More)
Posted by joyful on February 9, 2024, 9:41 pm
Category: Grace
Day 0 - My Blood For Yours
My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)
Posted by joyful on February 8, 2024, 8:13 pm
Category: Grace
Day -1
I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to... (More)
Posted by jondaley on February 7, 2024, 12:24 pm
Category: Grace
Catchup the last few days
The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.) Sunday morning, she got a dressing... (More)
Posted by joyful on February 7, 2024, 7:51 am
Category: Grace
Days -8 and -7
T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that. Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus... (More)
Posted by joyful on February 1, 2024, 2:21 pm
Category: Grace
A Snow Day From God
Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston.) Prayers for this week: Praises: We got a... (More)
Posted by joyful on January 29, 2024, 10:09 am
Category: Grace
«Previous   1 2 3 4 5 6 7 8 ... 20 21 22  Next»
culpable-adaptable