Daley Ponderings

Some pretty good appointments yesterday, and the snow (9 inches?!) wasn't too bad at all driving up to Dartmouth (one car sped by our line of traffic and a couple minutes later was spun off the road in the median, but she was already out of the car and on the phone, so presumably was fine, but... (More)

Jon was reading through Grace's test results and saw that the most recent bone marrow report mentioned the JAK3 mutation. He contacted her doctors because we thought that one was gone following the transplant. Dartmouth doctors can't see her Boston results to compare  so they contacted... (More)

Here's a quick update. Grace has some virus that she's fighting off and she gave it to me, too. In medical news, she had a checkup and echocardiogram on Tuesday and all that looks good. So far we haven't observed anything noticeable, either good or bad. She got fitted for a hearing aid, and... (More)

An ENT, a radiologist and an oncologist walk into a bar... Oh, maybe not, but they at least had a discussion about Grace while looking over the MRI and CT scan together and the conclusion is that it isn't a plexiform fibroma at all!  Which is what Heather has had the faith to pray for... (More)

Today is the day, one year ago, that Grace was allowed to exit the hallway doors of 6 West and live in a place other than a hospital room! They played Raining Tacos for her exit parade, so my thought is to celebrate each year with tacos for dinner. (And maybe a shamrock shake thrown in.)... (More)

Today, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.) She threw up her NG tube this morning and so... (More)

Today is day +133. (Jon updated this post) Grace has been having belly pain and a lot of mucus in her stool, often with blood as well.  We took her off cow's milk again (she had been asking for it instead of almond milk.)  We haven't seen much improvement in the last week, and she... (More)

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)

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)

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)

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)

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)

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)

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)

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)