Harlie Update, Way Past Due

Hi! After long periods of time of not sharing our life with you, it feels a bit scary to start sharing again. So, I'm just going to jump in. (I say that, but I started this post two weeks ago and it has been so hard to finish it! But, I'm gonna do it...)

Harlie returned to school (9th grade) in the fall of 2022.

First day of 9th grade.

Cooper's first day of 8th grade. 

This is the first time she's been in person, full-time since her 3rd grade year. Kinda nuts. She didn't attend one day of her 4th grade year and was on a hybrid of in person/homebound from 5th grade through 8th grade. When her new team met at the high school in the summer to talk about what her return would look like, we talked about starting with half days or something like that. I figured that with all the different classes, it would be easier to jump right in and then scale back if needed. And she did great! She is thrilled to go to school every day, all day. She gets ready every morning and anxiously waits for the school bus to come get her. The negative here is that the bus doesn't come get her until after the late bell rings at school. So, she has been late to school EVERY SINGLE DAY. Plus, we have a 15-minute range of when the bus is coming. Is that even normal? Does every kid standing at a bus stop have a 15-minute window of when the bus is coming? Our kids have walked to school - never taken a bus, so I don't know what's normal. At any rate, she is eager and determined to learn and is making so much progress in her reading skills! Her social skills are getting better, too. Here are some highlights so far...

Harlie turned 16 in September!

We went bowling to celebrate.

She went to the Homecoming dance.

We went to Pugoween (so many pugs in costume!)
and we finally put some effort into her costume.

It paid off! She won 1st place in the Group Costume category.

 

Her 9th grade school photo.

She got a prosthetic ear! It is the one on the left.
She can finally wear her hair down since she can tuck her hair behind that ear now.

She was in the One Act at school - with a speaking line!

She played in the All Star Basketball program,
which she LOVED.

Look at how tiny she is compared to her peers!

As you can see, she has been very busy in school! Going to watch her basketball games was pretty moving. For the first game, I spent the whole game trying not to cry. Okay, fine. I cried for the first 10 minutes, at least. There were just so many emotions all at once. I was sad she was out there, I was grateful she was out there. Then I felt that for all the kids and all their parents. Then I thought man, people are so lucky to be born well. Do people realize that? You can also see that the kids on the court aren't embarrassed or self conscious. They are out there enjoying themselves. They just seem so grateful to be there. I think we could all stand to learn something from them.  

So, overall, things are going well. We've had some nursing issues. This comes with the territory, I know. However, knowing doesn't make it any easier, of course. It is not easy to open up your home, your family and your hearts to other people. Considering Harlie requires a nurse to go with her to school, it is pretty imperative that the nurse be someone we can count on day after day. That nurse is her ticket to her education. Because of that, we found that a nurse provided by the county is the more reliable way to go. She has the same nurse each day and she rides the bus with Harlie to and from school. If she cannot go to school with Harlie, they will try and get a substitute. That is impossible in the home health nursing world. So far, they have been able to get a sub all but one time. So, that's great. We still have Caylee from time to time, but she does have her own career. We are lucky that she still wants to spend her free time with us, though. I've adjusted my work schedule to allow me to focus on getting Harlie ready for school. She still needs help bathing and washing/drying her hair. 

(As I mentioned earlier, I started this post two weeks ago. Right after I started it, her school nurse gave notice and left to accept a job elsewhere. Ahhh, it is so hard when she gets attached, and then they leave. We are back to substitutes for now.)

Anyway, we are without a full-time nurse for the first time in a really long time. I have to think that this means we are getting somewhere. Hopefully somewhere good. Harlie is 16 years old now. And she wants to live a more normal life. Her ultimate goal is to be able to go to school without a nurse at all. I know she can get there. But, it is really terrifying to think of her being in that big high school without someone looking out for her all day. But, just like with all things that Harlie is determined to achieve, we will figure it out. What she wants, is what I want. 

As far as how she's doing medically, well, that's another story - and honestly, the real reason I finally sat down to write again. 

In order to tell you, I have to go back a bit. Here's a summary...

April 13, 2021, Harlie had surgery at Boston Children's Hospital to implant prosthetic, titanium temporomandibular joints (TMJs).

April 18, 2021, Harlie was discharged (her tablet was stolen from her bed while she slept) and we drove home.

To write this post, I had to go back and refresh my memory on this time almost two years ago. Ugh. I don't know how we lived through this. And I don't know how we're going to do it again. MFer.  

April 21, 2021, After we got home, she just didn't stop bleeding from her incisions. It was a nightmare. She was readmitted to the hospital just a few days after being discharged from BCH.  She really should've been admitted sooner, honestly. I pushed it, hoping for it to stop on it's own. 

From May to August, some kind of growths appeared at both incisions (one on each side near her ears). We saw several different docs, but no one really knew what they were. They were not filled with fluid, even though they kind of looked like large blisters. I finally sent some pics to her ENT in DC and he said he needed to see her in person. So, we went to DC and he said they were abscesses from an infection. Either the constant bleeding a few months back allowed an infection in, or the infection was already there from the OR. I know everything is supposed to be sterile and all in ORs, but it would not be the first time she came out of an OR with an infection. Anyway, her ENT brought in an infectious disease doc (ID) and she is great. Our goal is to save her prosthetic TMJs and she was very supportive of that goal. 

We scheduled a time for Harlie to go into the OR and he removed the growths. They cultured the tissue and it came back with staph. They put in a PICC line and put her on IV meds for two weeks. But, soon after, the growths started growing back. Her ID doc put her on Doxycycline through her g-tube and she's been on it ever since. Her ID doc explained it to me something like this - the staph is sticking to the titanium TMJs. The staph knows that we are trying to kill it with antibiotics, so it forms a protective film/barrier over itself. The low dose of Doxy will hopefully eventually break down the protective layer and then get to the staph to kill it. 

Things settled down for a bit. We attempted to take her off the Doxy twice, but each time it looked like something was brewing. The second time was in June 2022. So, her doc said we should just keep her on it for another year. 

In November, 2022, a growth started growing back on the right side only, despite still being on Doxy. So the Doxy killed the bacteria on the left, but not on the right, I guess. In January, 2023, her ENT had to remove the growth. Within two weeks, I could see it was already growing back. This means that the Doxy isn't doing much, if anything at all. This is not good. After working with her ENT and ID for almost two years, they said we have exhausted all treatment options and it is time to speak to her surgeon in Boston. That TMJ has to come out. 

This is devastating. There is nothing good about this. There is no positive way of looking at it. I consider myself a pro at finding the positive view and there simply isn't one. This is only going backwards. This is re-doing an absolutely AWFUL surgery that isn't designed to be re-done. This is probably the first time we've gone into a surgery without having hope that she will come out better than she went in. Well, I guess that's not totally true. We hope that the infection will go away for good. I have to clean this infection area very often, and it hurts her. But, her function won't improve. Heck, her function could suffer for all I know. 

Here's what must be done: The surgeon has to remove her right TMJ and put in a temporary spacer. We take her home and let her heal. We have to make sure the infection is gone. I suppose they will make a new TMJ during this healing time. I don't really know. Then we return some months later and they will remove the spacer and put the new TMJ in. Did you see the pics of her getting her last TMJ? I don't know how we are going to do this again!!! And there's no guarantee that this all won't happen again! I can't even.

I don't know if I ever blogged about it, but that summer (2021) she ended up having to see a hematologist about her bleeding issue. She has some kind of platelet disorder. I don't remember exactly what. So, now, we need to consider that before going into this surgery. And we need to figure out a way for her to have her tablet and secure it when she is sleeping in the hospital. I can't believe this is something we have to worry about. 

Surgery is Monday, March 27. She will need lots of pre-op appointments, so we will have to go up sometime the week before. 

Tom's work schedule is booked. He has big projects starting, going, prepping, et cetera leaving no windows for time off. But he knows I cannot get Harlie to Boston alone. I don't know what he's going to do but I know he will figure something out. We managed to get my favorite Airbnb, so that's good. I do like knowing where we will stay - the layout, what we need to bring, how I'll walk to the hospital, stuff like that. This place is really comfortable - small but not too small and familiar, in a good way.  

I wrote most of the above two weeks ago, when we found out her surgery date. I've had a hard time getting back to this post to finish it. Since I started it, we got our pre-op appointments scheduled for the Friday, March 24. So, we will go up on Thursday. Luckily, that gives Tom a few days to get his project underway so he can be gone for a bit. 

I'm totally dreading this surgery. A few people have asked me if she'll be okay. I guess since I'm sharing anyway, I'll tell you the ugly truth. I always worry if she'll be okay. I never go into a surgery thinking it is no big deal. Never. I just try to hide my worry from everyone. No one wants to talk about that kind of worry anyway. 

On a lighter, more positive note.. Harlie is going to summer camp! YAY!

You might remember that our boys have been going to summer camp - Winona Camps for Boys in Maine for about six or so years. Well, Murphy aged out now. But, Cooper still goes. Every summer, Harlie has watched them go and wished she could go, too. I think she thinks that WE don't want her to go. But, that is so NOT the case! We'd love for her to be able to go! I've tried to get her into several special needs based camps - but the trach has always been a deal breaker. But, this camp is only for kiddos with trachs! 

I found out about Champ Camp from a fellow trach mom/family. Her daughter went to camp and graduated as a camper this past year. It looks amazing. So, I applied in January and had a phone interview. We talked over some things. I totally get that Harlie is a lot. I'm not blind to that. But, I also know that she manages it so well, really. Plus, I have the full support of the docs that know her best. We then had a zoom interview with different people and I completed a bunch of paperwork. We got official word last week that she was accepted! Hallelujah! 

The camp is in Indiana in June. Oh, what an adventure for Harlie! We are so excited for her! Hopefully, this surgery will go fine and she will heal up and be ready by June. That's the plan anyway. 

Okay, I'm just going to end this here. I'll blog more during her hospitalization. 

Thanks for all the love!

Christy xo