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 good, Dartmouth says once a day is good, so sort of interesting - there is a tradeoff of cleanliness vs risk of opening the line and cause an infection)
  • Cleaning up small amounts of vomit once (or more) a day
  • Changing and cleaning up overflowing diapers and the corresponding washing of clothes and sheets
  • Keeping her formula pump running and her NG tube not blocked (it's only gotten blocked twice, related to the cyclosporine, which is a thicker/stickier med)
  • Reading lots of books
  • Meals - Grace doesn't eat much, and I've been missing cooking, so I've cooked a few meals, and use DoorDash otherwise
  • Miscellaneous phone calls to insurance and medical providers
  • A fair bit of sleeping
  • Regular household chores

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.

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Posted by Jon Daley on March 26, 2024, 9:13 pm | Read 267 times | Comments (14)
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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.

Posted by Heather Daley on March 21, 2024, 5:13 am | Read 1019 times | Comments (14)
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She got her own badge.

We got the news that we can leave!

Exploring the apartment.

Playing with Faith and Joy.

Swinging at the park.

Posted by Heather Daley on March 19, 2024, 9:25 pm | Read 161 times | Comments (7)
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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.

 

Posted by Heather Daley on March 19, 2024, 6:52 pm | Read 802 times | Comments (4)
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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:

Posted by Jon Daley on March 17, 2024, 11:00 pm | Read 118 times | Comments (2)
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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. 

Posted by Jon Daley on March 17, 2024, 10:03 pm | Read 166 times | Comments (8)
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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.

Have feed bag, will travel

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.

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Posted by Jon Daley on March 15, 2024, 6:34 pm | Read 1446 times | Comments (6)
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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.

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Posted by Jon Daley on March 13, 2024, 5:30 am | Read 232 times | Comments (4)
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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.

Buying maternity shirts for Heather, and the girls thought the mannequins' positions were pretty funny.

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Posted by Jon Daley on March 13, 2024, 5:09 am | Read 676 times | Comments (1)
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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.

Posted by Heather Daley on March 9, 2024, 10:28 am | Read 264 times | Comments (3)
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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...)

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Posted by Jon Daley on March 6, 2024, 11:34 pm | Read 264 times | Comments (6)
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Posted by Heather Daley on March 6, 2024, 12:56 pm | Read 171 times | Comments (4)
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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 dosage for cyclosporin is changed based on regular lab draws, and the medicine absorbed changes based on the method of administration, so I imagine that is why they are changing this one to NG first.  All meds will need to be changed to NG before we can leave.

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Posted by Jon Daley on March 5, 2024, 10:54 pm | Read 173 times | Comments (3)
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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 of us went to last week.

I think we could do dinner on Saturday night around 6:30 or Sunday around 5:30.

We are going to Boda Borg on Sunday afternoon from 12:30PM to 5:30PM or so.

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Posted by Jon Daley on March 4, 2024, 10:21 pm | Read 199 times | Comments (3)
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From Jon  "[Yesterday's ultrasound] didn't report too much that we didn't already know. There was a little fluid in her abdomen on that side, so I wasn't expecting much, but a fair bit came out last night, I think 100 mls in the last three drains. The fluid near her lungs is almost gone. Her stomach measurement is down a little, but the accuracy doesn't seem to be great. They are about to measure again once she pees from the lasix. They've turned her oxygen down to 1/4L.

They are going to start food through her today.

So, lots of good news."

Her stomach measurement this morning was even less. The nurse has turned off the oxygen. While she was awake, it was perfect. Now she is asleep and it is down to 96, which is still good. We had a start and stop and start again with the feeds because Grace threw up her ursodial. But so far, as she's asleep, it's been fine.

The diaper change and measurement and weight were a lot of movement for her, so there was a lot of coughing and some vomit. 

She asked me to hold her, but then changed her mind, so I am sitting by the crib holding her hand.

Posted by Heather Daley on March 3, 2024, 11:53 am | Read 796 times | Comments (3)
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