Daley Ponderings

For the most part, these last two days went pretty well.  Grace was a trooper as we navigated the multiple confusing buildings and talked with many providers and was poked and prodded by various specialists.

Her audiology appointment went pretty well.  The doctor was impressed with her development, and there were some humorous things, like when they were playing a "put it in" game, and she was supposed to feed the plastic dolphin a plastic fish whenever she heard "put it in" in one of her ears at varying volume levels.  At one point, the doctor handed her an apple and then a green pepper and though she heard the sound, she didn't want to put the the fruits and vegetabes in the dolphin's mouth - apparently didn't think those were appropriate food for a dolphin, because she made a face, and was happy enough to put them in a box, when they switched games.

She had more trouble with the varying frequency tones, and the doctor was really good at reading body language to know when she had heard the sound even if she didn't follow the direction.  The hardest game for her was to look to one side or the other to see a character on the TV screen when she heard a tone.  She was mostly concerned about where the character went whnen the TV turned off, so I'm not sure how much was hearing versus not understanding she was supposed to look at the TV before it turned on.  Sometimes, when the frequency would change or the volume was lowered, she would stop responding so it seemed like she wasn't hearing it, but then the doctor would go back to the frequency and volume that she knew Grace could hear and she still wouldn't respond.

But, it does seem like there might be some problem, possibly in her right ear, but the doctor saw some fluid, probably leftover from COVID or when her tonsils were clogging up her sinuses, which might have been causing the problem, but since since hasn't had chronic ear infections, she wasn't too concerned, though hoped to see her again post-transplant to see if there were any changes.

One of the big tests she had was a kidney test, where she got an infusion and then they monitored how long it took her kidneys to remove the chemical over 5 hours, but we haven't gotten the results from that, but don't have any reason to expect any problems - they are simply testing all of her systems to see if there is anything we don't know about.

The dentist appointment was probably the worst.  It was late in the day, so we were tired and ready to go home, and they were behind schedule, and so we waited most of an hour in the waiting room before we go to the resident.  We knew there were some problems with her teeth, and that is why we had asked to see the dentist when the oncology team originally said we could waive the visit since they weren't concerned.  But, we hadn't really considered what an aggressive dentist might want to do and so now wish we hadn't said anything, as we don't really think there is anything that needs to be taken care of right now.  The dentist wants to fill a few cavities, whcih seems fine, but then wants to put some crowns on some other teeth, and "if anything goes wrong during the procedure, we'll just pull the teeth" - up to six teeth.  Which just sounds crazy to me.  He did admit that the cavities except for one, are all hard, and so likely caused by nursing during the night, and so since Grace is weaned, isn't progressing any further.  He also admitted that the cavities aren't near the nerves, which would be the main impetus for doing any work - that if a tooth got infected, it could cause major problems post transplant.

The main dentist looked at her for a minute or two, but didn't want to talk to us, so talked to the resident behind closed doors and then had him deliver the news, and overall, we didn't really fit well with the dentist, because, as far as I can tell, they would be interested in operating on her whether she was having a transplant or not, and it just seems way more aggressive than is necessary.  We have had some other children with similar issues, there appear to be some genetic components to teeth and some people have to do tons of prevention and others can do very little and there isn't much correlation in how many cavities they get.  I also don't see any reason to travel to Boston to a dentist over the next couple of weeks, so hopefully, we can skip it altogether, but I don't want to go to this particular dentist if they do end up forcing us to do this work.  He did recommend Gelkam toothpaste, whcih we haven't used toothpaste yet with her since she doesn't know how to spit, but he said small amounts would be ok, so we'll try that in the meantime.  At a minimum, I think he is going to want to apply some sort of topical fluoride that will turn her teeth black, which I've never heard of that, but that sounds kind of bad too - and I think he implied it would be permanent until her baby teeth fall out at age 12 or so.

Lastly, Children's Hospital has a policy of all children under 3 must be in a crib, which seems like an arbitrary age to me, and since Grace has never slept in a crib, seems completely unncessary to me.  At Dartmouth, due to the room she was in, there was just a regular adult bed, and so she slept there fine for a week, so hopefully we'll be able to convince them of that, but our "nurse navigator" who is supposed to advocate for us in these types of situations, "isn't interested in fighting this policy", because she personally believes it is a good policy.  I'm going to write to our psychiatrist who we also met with this visit in the hopes that she might have some influence.  We arent clear if you have a crib if you don't get a bed, which then means that she is in the crib all day as well?  They did say we could have a blanket and play on the floor, but it seems like this is inventing a problem, because they we have to be more careful about cleaning the floor and all the nurses will track in who knows what from other places, so it seems like us living on the hospital bed like we did in Dartmouth is a lot better in all ways, cleaner, get to cuddle more, what we are already used to, etc.

Faith also came down for one day of appointments, and that all went really well, except for her blood draw (of 9 vials) and when the tourniquet was released, it instantly made her feel woozy and she collapsed a few seconds later and was in and out of consciousness for 5 minutes or so, including some twiching/seizing which was concerning to me.  The nurse and I were holding her up and once the twitching started, the nurse realized it was more than we could handle on our own, so called for a code blue and everyone came running.  Faith said she was surprised when she woke up, because I had appeared at her side and the room was full of people.  After some ice packs (she was sweating profusely) and some oxygen and apple juice, she felt better, though took around 20-30 minutes before she felt good enough to stand and continue on with the next appointments.  It did make her famous and any time I asked for anytihng from a flagging down a random nurse, they would say, "oh, you're in room 3, right?" because everyone had heard the sitens and gotten the story.  I need to do some more research, as everyone thinks she just needs to not watch the blood draw in the future, which might be true, but it is interesting to me that she watched all nine vials drawn (they estimate it was around 10 ml withdrawn, which seems so small compared to what it looks like) and then it wasn't until the bandaid was put on the tourniquet removed that she had a problem.  Her arm was quite purple prior to the tourniquet being removed, so I do wonder if that was too long of a time to have the tourniquet in place.  But, in any case, she is supposed to be careful in the future with blood draws by lying down ahead of time and not watching.

We talked through Faith's whole procedure and they say they try to keep the donor in a room nearby Grace's room and hopefully she can come be there during the infusion process, but they said sometimes there aren't room available nearby.  I am thinking that Faith will come down the night before and stay with me in the apartment and then stay in Boston for a few days once she is discharged, that it seems better for her to be with us and help her make decisions about potential pain medicine, etc. throughout that following week rather than just being home with her siblings, but we'll see how that goes when we get there.