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.

Posted by Jon Daley on January 12, 2024, 3:18 am | Read 125 times
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So much for one day! We're familiar with the SDF option, but ended up doing fillings and caps under anesthesia for G. He also swallows still at 6, so we use Squigle Jr fluoride free. It has Xylitol which is great for teeth!

Praying for all of the details to have Faith room nearby, and uneventful draws going forward.

Posted by Michelle Rohrbacher on January 12, 2024, 8:24 am

I am refraining from saying what I want to, the way I want to say it, but after having given myself a few hours to calm down, I still have to say something. It's hard to know where to begin, but I'll start with wondering why something that calls itself a children's hospital would insist on keeping a tiny child, who has always been free, and who is going to be undergoing unimaginable trauma, in a CAGE for sleeping and playing. If this is not a tremendous misunderstanding, I sure hope you can enlist the help of her psychologist. (Psychiatrist? Whoever was responsible for her psych evaluation. I'm quite curious how you do a psych evaluation on a two-year-old.)

And don't most hospitals have bed a bed for a parent in children's rooms, since sick children do better with a parent sleeping near them? That became the practice at some point during my lifetime, and I thought it a very humane one.

If this turns out to be something absolutely necessary as part of her transplant, I'm sure you and she will weather it gamely. Otherwise, it has to be better to keep the psychological trauma to a minimum! And I remember you quoting one of the doctors, talking about precautions, as saying "This is not a Bubble Boy situation; we have to take psychological health into account." I suspect you are just running into authorities who think that even healthy children should sleep in cribs, and so don't understand what the fuss is all about.

Posted by Linda Wightman on January 12, 2024, 8:37 am

As one of several in my family who passes out during blood draws, your description of what happened to Faith is similar to what happens to me. It appears to others like I am having a seizure, which I don't know about because I am out of it. I also get all clammy and sweaty. Once it is over, it is over. I've never had any repercussions other than whacking my head against a radiator during the "seizure" part.

And, it doesn't just happen when I am getting blood drawn (I have learned to ask to lie down before we begin, getting my head lower, or at least level with my heart is the best "cure").

I have passed out during other people's procedures as well. When I went in to sit with my mother as she got her IV attached (and I wasn't even watching), I was the one who passed out and woke up with a team around me. My mother said I kicked the nurse during the "seizure". Sorry.

Also happened in the recovery room after Bill's surgery. I woke up to see guys with a gurney from the ER waiting for me. I had to keep insisting I was fine and didn't need to go to the emergency room. (I can't believe it doesn't happen to others and that they haven't seen it before. I know my father, brother, and Tom, have all had this happen to them, to some degree).

I give Faith credit for 9 vials! If I have to give 2, they struggle to get enough. I don't know if my blood pressure drops or what. I try to drink a lot of water the day before I have a blood draw so that I won't have to come back a second time!

Sounds like Grace and Faith are both troopers! My love to you all!

Posted by dstb on January 12, 2024, 9:01 am

Thanks. I'll show this to Faith.

She hasn't had trouble with other people's procedures, but Noah fainted once (from a standing position, so that wasn't great, and I wasn't prepared for it so he fell down straight on a metal trash can) while watching Jonathan get stitches.

For the dentist, our doctor said they don't typically recommend procedures that aren't needed, but we still aren't that happy with them since the attending physician was in the room for 30 seconds, never spoke to us and only spoke to the resident behind closed doors, so doesn't give us a lot of confidence in his abilities.

We did once meet with a pediatric dentist who hated kids but just did it because it paid more than a regular dentist. He insisted that Jonathan would need general anesthesia that we didn't think was needed. We stopped by a different dentist on the way home, and I think partly to prove a point they accepted him on the spot and performed the procedure without any topical or anything since it was such a small filling. The first doctor just didn't like patients who moved.

We're expecting a phone call from our doctor after she talks to the dentist.

And yes. Children's Hospital is surprisingly non-child friendly. Our psych person is going to try to help in this regard though she said there is something that I don't understand what her post procedure looks like, so she is going to call as well.

Posted by jondaley on January 12, 2024, 12:23 pm

I have a prescription-strength topical fluoride that I use every night at the suggestion of our dentist. It has not turned my teeth black, and I've been using it for years. I can give you more details of you want.

Another concern I have is that this dentist probably is also allergic to patients who move, and an avoidable round of anesthesia is probably not what Grace needs right now.

One thing that rings a warning bell in my mind, just something to be aware of, is that if they know you at all they know that you are unconventional in many of your opinions and practices -- and they don't know you well enough to realize how well that unconventionality has worked out for your family. I know that some doctors like to take advantage of having a child "captive" to cram in as much medical care as they think important, since they feel no assurance it will get done once the child leaves their custody. I know, that's horrendous -- but at least I'm not quite so cynical as to think they're just doing it for the money. (Like the former dentist I told you about privately.)

Posted by Linda Wightman on January 12, 2024, 2:47 pm

The attending dentist gave a different answer than the resident, which is confusing, since they were talking together.

He says that the front teeth are the most concerning, and as far as I can tell (I asked for a verification) that those are teeth are simple fillings, so I don't have a problem with that.

I brought her to the local dentist today, and though he hasn't seen the x-rays yet, he is confident he can do the front fillings without issue - he did say that sometimes the really small fillings can pop out, because there is so little to hold onto.

She has an appointment next week for the fillings, and he said if she is too uncomfortable to do all at the same time, she can come back every day if she wants. It is great living in a small town. This wasn't our dentist (he doesn't do small children at all, we already tried to bring her for a routine checkup when she turned 2), but another dentist down the street. Unfortunately for the rest of the patients who have scheduled appointments, he said he would fit her in wherever she needed, so we can hit the transplant deadlines.

The hospital dentist said they aren't sure if they can email the x-rays within 7 days, but hopefully my doctor can pressure them into releasing the medical records. My local dentist said the new digital x-rays aren't as bad as the old x-rays, so taking another one wouldn't be too bad, though I always like to avoid x-rays if I can.

Posted by Jon Daley on January 13, 2024, 4:55 am

Having talked with our own dentist, I know know that the fluoride that turns your teen black is silver diamine fluoride, which effectively stops decay in its tracks. I've actually had it before, but only in back teeth, and under crowns, so I've never noticed the color.

Posted by Linda Wightman on January 17, 2024, 7:29 am
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