September Recap

Hi! So much time has passed, that it is hard to know where to start. Here's what I started to write ages ago... 

September 1, Wednesday

We left the hospital and made it home five minutes before the IV medication/supplies delivery.  It is so funny to me how important the "little things" are to us - especially during stressful times. We were expecting IV medication balls (which is what we've used the two other times she's come home with a PICC line in 2010 and 2013).  The rep that visited Harlie's room in the hospital told me they would be the medicine balls, and they need to be stored in the refrigerator, so Tom cleaned out the fridge in the garage so we would have room. We opened the medication box and they were NOT the medicine balls, and the instructions said to store them at room temperature. Of course. 

The reason why this switch was frustrating to us is because with the medication balls, there is very little room for error. It was as stress-free as dosing IV meds at home could be. With the meds this time, we had to mix the meds, and prime a line. The line had to be changed every 24 hours. But, in between doses, you had to make sure it was protected and kept clean. And when you are tired, it can be stressful to double (okay, triple) check yourself every time you alcohol swab, put in saline, alcohol swab, hook up the meds, wait for it to finish infusing, alcohol swab, saline, alcohol swab, heparin, etc. I know I made this harder than it was. I was just always so scared I was going to make a mistake and accidentally hurt her. 

The meds were ordered for every six hours. And she came home with med times at 3pm, 9pm, 3am, and 9am. It took about an hour or more to infuse. So, the 3am one was awful. We slowly adjusted the times and changed them to 5am, 11am, 5pm and 11pm.  Any way you do it, you're going to lose some sleep. Meds were ordered for 14 days. But the ID doc at the hospital told me that it would more of a clinical decision as to when to stop (based on how her skin looked). 

September 2, Thursday

We had already scheduled an appointment with a new-to-Harlie Electrophysiologist (EP) from Children's National that works out of a satellite office here in Richmond. I can't remember if I mentioned earlier, but Harlie's pacemaker has about a year left on the battery.  It is a minor surgery to replace the battery, IF the leads to her heart are okay. They placed the leads in her heart when she was just four days old. She is about to turn 15. So, I guess they test them or something ahead of time? So, now that we are at a year out on the battery, we have to see an EP more regularly and send submissions from her pacemaker every month. We do the submissions at home, and it goes through the phone line? Well, it used to go though a phone line, but maybe now it goes wireless?  I don't know, nor care really. It goes through, and then they call me to tell me all is well. 

Anyway, so we went to see that doc. She was nice and all was good there. Apparently, the typical method is to wait until the battery is really low before you change it. It has some safe guards and will go to other battery-saving settings until it gets replaced. She said it just doesn't shut off one day. But, in Harlie's case, there are no guarantees that things will go as planned. Often, other issues will come up that change the priority list (surgeries, infections, sickness). So, they are going to leave some room for error. 

I had to laugh when we went to the appointment. Look at the sign on the elevator. 

Okay, Harlie, just wheel yourself out, and we'll meet you in the lobby.  You have a two-year old? Just let 'em go down alone. I mean, that is the safest, right? Haha! 

September 3, Friday

A friend of mine surprised me with cupcakes and cookies. I couldn't get a picture before the cookies were eaten. 

Thank you, Shawn! You are the best! xo

September 4, Saturday

Harlie broke out her guitar and found a website that teaches you how to play - all on her own! She has been working hard all by herself. She went through all the free aspects of the website and then got to a place where you have to pay for a subscription to get to the next thing. She brought her tablet to me to do it. I have NO idea if this is a good website or not. 

So, I asked Facebook for some guitar lesson recommendations. I don't know if you remember back in May when Harlie was in the hospital here at VCU, she had a music therapist (Brooke) come and play for her. Well, she reached out to me and said she would love to work with Harlie and will come to our house every week.  She has now come two times and she says Harlie is doing great! She's already learned so much on her own! I had Harlie show her that website and ask her if it was worth doing and she said yes. So, we got her the subscription so now Harlie can practice to her heart's content. 

We will definitely have to get her a better guitar. We'll see how she does over the next couple of months and we'll get her one for Christmas if she's still enjoying it. 

September 8, Wednesday

This was the first day of school for the boys. 

Cooper - 7th Grade

Murphy - 12th Grade

I went to Harlie's school on the 7th to make sure all was okay for Harlie to start. She is supposed to go to school for Advisory class every morning, and she is taking Art later in the day (every other day, since they are on a block schedule). Well, there is a lot of paperwork the school nurse has to do and she didn't realize that Harlie was going to be in the building, so that took some time. Unfortunately, that meant that Harlie had to wait a bit to start. 

I also found out that Harlie's teacher who has been coming to our house for a long time (I think she's been teaching Harlie since the 3rd grade) will not be returning as her teacher this year. It is so hard when we get attached to people and they have to leave. This change started a landslide of feelings for me and problems getting Harlie on track for school. I can't possibly go into it now. Just know that when your kid needs a teacher with special skills, patience, ingenuity, creativity, compassion, etc., and you have one that you like, a teacher change is a BIG FREAKING DEAL. 

September 9, Thursday

Harlie had an appointment with both Infectious Disease and wound care, both in DC. Unfortunately we couldn't see the same ID doc we saw when Harlie was in during her PICC line placement. Coordinating ID and wound care wasn't easy. So instead of driving to DC on two different days, I sacrificed the doc for the convenience. Rookie mistake. There is no convenience in special needs. I don't know if the outcome would've been different or not. But, this doc felt confident that the infection was gone. She said there was no evidence of an ongoing infection and that she felt it was very unlikely to have gotten to the hardware in her jaw. 

My eyes must've looked skeptical over my mask, because she asked me what I was thinking. I told her I want to believe her and I want her to be right. But so often providers are wrong. I'm not saying that in a mean way. Harlie is a complex kiddo and oftentimes things just don't go the way one would expect. With her, you have to expect the unexpected. I think being wrong about this one is too risky and I said as much to her. 

But, then she explained to me why it wasn't beneficial to keep her on the meds longer. I was a little concerned that she was thinking about how hard it was on us parents to deal with the PICC line. Granted, it isn't easy. But, I told her I would do it for as long as I had to if it meant not having to take out the jaw hardware. 

In the end, she discontinued the antibiotics after a 14-day treatment (which was the following Monday, September13th). I spoke my peace, but I am no ID doc.

While we were there, we had to give Harlie a dose of her IV meds. That was a little bit of a pain since the meds have to be higher than Harlie's arm to drain in. See, if we had the medicine balls, it wouldn't have mattered. 

Anyway, Harlie told us that we needed a pole on her chair. I don't think we understood what she was saying, so she drew it on her tablet.  

She said she needed a new (or different? I don't remember) wheelchair. Of course, we said, Harlie, we don't have a different wheelchair. Where are we going to get one? She said "here" and we were like, no, there are no wheelchairs here. 

Then we left and when we got off the elevator, look at what was right there.

That's what she meant! She meant borrow a hospital one! Duh! We both saw the chair and she said, "Told ya." She doesn't get enough credit for being right. 

September 11, Saturday

Tom and I went to a wedding shower for Caylee (Harlie's nurse) and Blake. It was a lot of fun. 

Blake, me, Caylee and Maggie

September 12, Sunday

We went to a bridal brunch for Caylee. 

Harlie is a junior bridesmaid, so she got to go, too. She had a great time and "won" a guess how many kisses are in the jar. What a coincidence that the prize was a Ty plushie (that she didn't already have!) and some cute fingernail polish. Haha! That Caylee thinks of everything!

It was also the first game for the Steelers, which they won. Spoiler alert, they haven't won again since. 

September 14, Tuesday

A nurse came to remove Harlie's PICC line. That went fine. 

September 17, Friday

Today was Harlie's first day back in the school building since November of 2019! Maybe I've already mentioned it (so sorry) but Harlie got the flu in November of 2019 and spent two weeks in the hospital (most of it on the ventilator). Since she had jaw distraction surgery scheduled for March 6, 2020, we just couldn't risk her getting sick again, so we kept her home, thinking we would send her back to school after the surgery. But, then Covid happened.  By the time kids were able to choose to go back, we were gearing up for Harlie's TMJ replacement surgery in April of 2021. So, we didn't think sending her back was a good idea.  Now here we are... almost two years later, and she's finally back in the school building. Look at how happy she was!

Woohoo!

Sometime in later September, we had some issues with Harlie and her education. Again, too much for me to go into in this post. All I can say is that I felt very worried that Harlie would get even further behind and not get what she needs in order to be as successful as possible. Having to micro manage her health and her education (plus work outside the home) has left me completely spent. This is a really hard thing for me to try and explain to those that have never had to do either of those things - much less both at the same time. I'll have to save her education for it's own dedicated post - IF I ever get the energy to re-live it and write it down. 

September 23, Thursday

Sigh. I wish I could say I was surprised. Sometimes, I really hate it when I'm right. 

The growth grew back! Less than 10 days after coming off the antibiotics. I hope they told the ID doc that said she felt confident it was gone. This is a prime learning opportunity for her. 

I took a pic and emailed her ENT in DC. He called me that afternoon - but I was in a meeting and didn't see his call! Ugh! But, he contacted her ID doc and she called me later that day (her original ID doc from her hospital stay - NOT the one we saw who discontinued the antibiotics). She scheduled a virtual appointment for us to talk the very next day (Friday) and scheduled an in person appointment for Monday.  

September 24, Friday

During our virtual appointment, she put her on an oral antibiotic for me to start immediately. She even called our local CVS to make sure they had it in stock (it is a liquid, which is not the common what it is prescribed). They did not, so she found another local CVS that did have it and called it in to that one so I could get it asap. Docs don't normally do that, so I really appreciated her going the extra mile. 

September 25, Saturday

Today was Harlie's birthday!  She turned 15! 

For her birthday, she wanted to go on a long walk, go on a picnic, and I can't remember what else right now. Oh, maybe plant some bulbs? We did everything she wanted to do that day. I took lots of pictures, so I'll have to dedicate a separate post for that. I think she had a great day. 

Oh, the things that interest her. 

Dad showing her.

September 26, Sunday

Today was Cooper's birthday!  He turned 13! 

For his birthday he wanted to do some stuff with his friends, which he did. I can't remember if I have said this before (pretty sure I have) but gift giving is NOT my love language and birthday parties are not my strength. 

September 27, Monday

We had Harlie's appointment with her ID doc. She called in the wound care nurse who saw us when Harlie was in the hospital. By this time it had already grown back to the full size it was at the time of removal. So crazy, and extremely disappointing, at how fast it grew back.  Her doctor expressed that she is willing to give this antibiotic a chance. She is totally supportive of trying to save these joints as long as Harlie's health isn't at risk. At this point, the infection looks like it is at the skin only (not in her blood). 

The wound care nurse (Sam) said there is nothing to do really, since it isn't an open wound - it is a closed growth of some sort. Her ID doc did say it is a very unusual reaction to an infection, and she hasn't ever seen this exact situation before. That is so Harlie. 

Within a few more days of being on this antibiotic (Doxycycline) the growth started to "dry" up and shrink. So, it appears to be working. We will stay the course for a while and make decisions as we go. 

I will stop this post here because it is already so long. I will pick up with October soon. I can't believe how much of my life I share and could share. In the interest of time, both yours and mine, I've skipped a lot of stuff. Haha! Shockingly, this is just the highlights. 

Thanks so much for checking in, continuing to read my posts, and being so incredibly supportive of our girl and our family.  I appreciate it more than you'll ever know!

Much love,

Christy xo