Bad Behavior has blocked 549 access attempts in the last 7 days.
Powered by LifeTypeWe are headed home on Monday!
Grace will still have at least one clinic visit a week and depending on the labs that week, might have a second appointment, but we decided that for the sake of our entire family, we need to be home and it is worth driving back and forth as needed.
At some point, we'll transition to some appointments at Dartmouth hospital and some at Dana Farber.
We need to get the prescriptions transferred to Hillsboro and the CVS in Boston isn't making that easy.
We are thankful that Grace has been less nauseous and we've been able to reduce her formula intake down to 16 ounces per day and she is eating more on her own and has steadily been gaining weight.
We need to figure out what "isolation" means for Grace and how to keep her from getting sick, but also not living in a complete bubble.
Her next milestone is the 3 month mark, where if things continue, her transplant will be considered to be successful, though there is still the possibility for graft vs host disease until she is off the immunosuppressant drugs.
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 positive for C. diff. So she is on antibiotics for that now, but her symptoms are better. We are still struggling to find the balance between real food and formula feeds, and getting enough fluids into her. Some days she eats and drinks a lot. Some days not very much.
Jeremiah was with us for a few days, and he and Grace had lots of fun silly times together. On Friday, Jon drove with Jeremiah up to Maine for the 2024 Daley vacation. That night, we did a video call and said hi to people and Faith gave us a tour of the house. Grace was very sleepy, so she didn't interact much. Saturday, I took her for a walk and found a nice park. It was also a beautiful day. That afternoon, Jon called to say that Faith's phone had caught on her pocket on the way out as she was going to take a picture of them on the WIggly Bridge. Her phone splashed into the water and was irretrieveable. But the rest of the Daley vacation went smoothly. Jonathan said it was the most stress-free vacation in years and it was good.
Grace has started being aware of and interested in the baby in my tummy. She likes to feel my belly for feet and Saturday she told me that she had a baby in her tummy!
Jon came back to Boston Saturday night. We switched off Easter services the next morning. I went to Park Street at 9am and it was glorious! Then I met Jon at the hospital to switch off and he played guitar for the service there.
After Grace's dressing change (which is definitely nice to do with two people) I headed up to Maine. It was great to hang out with the kids again and some of the extended family. The cousins played hide and seek pretty much the whole time they were at the house. It was a great big old house for that.
I drove to Hillsboro after the Daley vacation. Again, it was good to be with the kids and I long for the time we can be all together again. I'm definitely quite physically tired. When some people came over on Tuesday to help they said I sure looked tired and made sure I went back upstairs to take a nap.
Joy and I came back to Boston today, and arrived just in time to pick Jon and Grace up from the clinic. Grace's electrolytes are not settled and so they want us to come into clinic twice a week. Her head doctor is away for a few days, so we have not gotten an official answer yet about going home. We think she's stable enough that we can be further away, and think it is worth driving into Boston twice a week (once for each of us) to have our whole family together at home. But we don't have official approval yet.
At Jon's prompting, Grace announced to us that the baby in her tummy is a boy. Then she and Joy had a hilarious argument about who is in my tummy - Grace, "boy!" Joy, "girl!" etc. for quite a long time. Even when Jon said that was enough talking about it, Grace pointed at my tummy and made knowing eyes at Joy. It was so funny!
Hopefully tomorrow is a laid-back day for us. Please pray that Grace can consistently eat a lot of calories by mouth and also fluids, so that her electrolytes are balanced and she can get off the NG tube soon. Also that we can go home! And get sufficient rest. And for the kids at home who really miss their parents and sister.
We are settling into our second week of being full-time in the apartment.
Our schedule consists of:
If the email subscribers haven't figured it out yet - this is the last sentence that you'll see in the email, but there is more content (and pictures this post!) by clicking the link below.
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 the bone. I (Jon) believe they did both, if I'm remembering the medical records after the fact correctly. It was an expected test, and she will have two to three more over the next year testing to confirm that Faith's bone marrow is meshing in correctly.
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 thing, she wanted to go in the resource room to get a book. But she is not supposed to go in public places. So she's stuck in her isolation room for the whole visit. She even stood with her head against the door crying to go out. But we had the nurse bring her some books. Other than that, her visit was uneventful, They had anticipated giving her platelets, but her numbers were good, so they didn't. They did give her the last dose of the anti-nausea med that is supposed to last 7 days.
The plan was for us to catch an Uber back to the apartment, but the app was giving me an errror. Emotionally overwhelmed and sleep-deprived, I called Jon in tears. He was able to book a ride for me, and Grace waited patiently and that went without a hitch. (Much better than trying to book an airbnb for someone else.)
Grace and I got a much-needed nap and I felt a lot better after that.
Jon came back in the evening and took care of her evening meds and feeds so I could go to bed early.
In the morning, I was looking forward to a day at "home" doing "nothing" but got a lesson in "do not say we will go to this or that city..." When Grace woke up, we saw that her food bag was still full! Her NG tube had clogged. Both of us tried to flush it with no success. Jon had a terrible time getting through to the right people at the clinic (and that mis-routing of request ended up getting escalated to superiors.) By the time the right person called back to schedule an appointment to put in a new NG tube, Jon had tried again and this time successfully unclogged it! By the way, the nurse said "try Coke, we've had great success unclogging tubes with it" and Jon says that's the first time he's been in a store debating abbout the medicinal qualities of brand name vs. generic coke...
But after that, the day has gone well and been a good kind of relaxing while slowly getting settled. She has been eating and drinking by mouth more than before, even while her feeds are running. Oh yeah, I forgot to say she had a bout of nausea in the morning, but after Jon gave her the zofran, she's been better. We played video games with the younger boys. Jon took her for a walk to a playground in the afternoon. They had fun and I got a nap!
Jon also went shopping and bought salmon, which he made for dinner. He has been missing cooking. It was yummy and Grace ate a good portion. We are slowly getting organized: clothes, medical supplies, kitchen/food.
There are definitely aspects of this phase that are hard so please keep us in prayer. Grace is now out of isolation with a baby immune system. She has another clinic appointment tomorrow and a bone marrow aspirate soon.
But it's good to be in a more home-like environment.
I'll do a separate post for pictures.
The kids who have been admitted for any length of time look longingly at the airlock doors that leave the hallway they are not allowed to leave. So, when discharge day comes, it is a pretty exciting time. For those of you who are confused - yes this was published out of order since Heather couldn't get the video to post properly originally, but I've back-dated it now.
They call it a "Bubble Parade" (and there are some fun videos of hospitals that have actually bubbles and a bell for the kid to ring at the end) because it used to involve bubbles, but they have modernized and it now has light-up sticks and spinning things and lots of whooping and hollering. They asked for a song, and we weren't sure what to choose originally, and probably Grace doesn't care too much (as you can see from her face at the end, the whole thing was pretty overwhelming, but once the camera turned off and I asked her if she wanted to push the door opening button she was happy about that). But, we thought the rest of our family would appreciate Raining Tacos, which is sometimes played loudly while dishes are being done at home (the dishwasher is in charge of the music for the evening, so the music varies quite a bit depending on who is washing the dishes).
Without further ado, here is the grand exit:
We left the hospital at 5pm today and are "home" at our new apartment and working out this phase. Lots of meds to organize and schedule. Getting used to a quiet room, so now we can actually hear the feed machine, where I never really heard it before.
Heather will be going to the clinic tomorrow morning - we think there are two visits a week? Maybe three
The nurses do a really fun "bubble parade" - I guess it used to involve bubbles, but now has digital light up toys and lots of whooping and cheering. And we picked "Raining Tacos" for her victory walk down the tunnel. She kind of thought it was fun, but also overwhelming and strange. But she was thrilled to leave the wing and walked almost all the way to the car in her own, including walking up a flight of stairs instead of taking the elevator.
We'll get some pictures up later, but it's been a full day and we have to get up early tomorrow.
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 the week progressed, I started to think it could actually be Saturday.
She spent most of the day unplugged from her regular lines, and now has a small backpack that contains her formula pump. She was able to walk fairly well with it, but occasionally takes a step backwards to compensate for getting pulled by the weight.
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 vomit more with the increased meds through her NG tube, but as of Tuesday, she has been doing about the same as the previous days, so that is good. She has continued to play and also vomit a little.
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 and the girls thought the mannequins' positions were pretty funny and so mimiced them.
Grace has been steadily improving.
She is not throwing up as much, she's had a few messy diapers that look more normal than she's had in months, or even ever.
She had an ultrasound which she slept right through.
Her drain has not been putting out much, so they wanted to check the fluid level. This is the first time I've watched her ultrasound, so I can't compare. And it's really hard to tell what's what, but I did recognize the kidneys.
I started to write that I hadn't heard any results yet, but the radiology doctor just came in and said there is still evidence of VOD, but the fluid level is down.
Yesterday, she was interested in eating, notably when she had to be fasting for the ultrasound. When she was allowed to eat, she had some fruit snacks and trail mix, but it came back up. The nurse thought it was mostly because of mucus that she had to get out, but I'm not so sure.
She had fun playing with the safe in our room, with her babydoll accomplice.
Today we woke up early to error 12 from the feed pump. It makes it continuous high-pitched beep until someone comes to turn it off.
She threw up very soon after waking up, and I think we need to do a wake up button push every morning. (She didn't need it at all in the night, so she is improving.)
But she's been happily playing since. She says and signs "later" when I ask if she wants to eat. She tolerated playing in the room while I folded laundry and got dressed, but we went for a walk as soon as possible and have been in the playroom for quite a while now.
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...)
