Friday Update

Harlie is doing much better today.

To finish on the things I wasn’t able to write about last night…

When the surgeon went in to remove the wires, he discovered that her right, front top tooth was too loose to leave in there. So, unfortunately, he had to pull it. We are thinking that since her bottom teeth were wired over her top teeth, the bottom ones must have been applying too much pressure on that tooth, causing it to loosen.

Considering what happened yesterday, I know I probably shouldn’t care. But I can’t help it. She’s only three! And it will now be years before her permanent one will replace it. Right now, it is really hard to picture her without her front tooth. Especially since her mouth looks pretty bad at the moment. Everything is very swollen (gums, roof of her mouth and lips) so it’s hard to tell what she’s going to look like. It’s like her top gums have swollen so much that all her top teeth have spread out – if that makes any sense.

But, overall, I think her face/jaw look really good. Already today it appears that the swelling is decreasing. For some reason the left side of her face was more swollen. Maybe there was more trauma to that side when the wires were pulled, I don’t know.

Her surgeon stitched up the incision/wound site. I’m told that is a good sign that there was enough viable tissue there to save (which saves us from having to pack her wound and have it heal from the inside out). Also, I forgot to mention last night that he looked in her mouth and didn’t see any sign of the wound going all the way through. So, we were all very happy to hear that.

During the 9 week wired period, she did some damage to her tongue. Her surgeon is thinking that maybe she cut it on the wires. Yesterday it looked WAY worse and it was very upsetting to me. It was just the straw on the camel’s back, I suppose. Seemed kinda cruel to me that her tongue would get damaged with all the challenges she already has. That would definitely affect her feeding and speech, which just made me mad. Plus it looked really gnarly, making me immediately picture kids making fun of her.

However, today it looks better. And when Dr. Magee (her surgeon) called me today to check on her, I asked him about it. He said that he did see it, and he can fix it. He said in hindsight he probably should have just fixed it right then. But, in all the excitement, he didn’t think about. Although now that I think about it, it’s probably best that he didn’t. For one, why give her another thing to deal with, and two, that could possibly be another source of infection. At any rate, he said that it is an easy fix, for which I am extremely grateful.

Since we are still here today (and will be through the weekend I’m guessing) we had to go to our back up plan. Which was that Brandy would drive my car back to Richmond and leave me here with Harlie (of course). The original plan was that Jennifer would drive down today and pick us up. But, since we had that scare yesterday, Tom cancelled his appointments and drove down this morning. Luckily, my friend Melissa was able to come and sit with me after Brandy left. Then she drove me to her house to spend the night. It was so nice to be able to go to a warm, comfy place after yesterday. I was a little nervous leaving her for the night, but her night nurse was awesome and we had her last time we were here (in fact, she was one of the nurses that was there when Harlie had her breathing episode) and she assured me she was safe and that she would call should anything happen.

While I definitely think she is feeling much better, she is being quite the bear to handle. She has been so protective of herself (aka fighting anyone who looks at her) that they had to give her IV Versed to be able to change her trach this morning! She’s had her trach changed once a week since she was three weeks old. And even when I tried to do it (thinking she would be more comfortable) she still went nuts. And they don’t want her getting that upset right now, so they decided to try the Versed. And it didn’t really work. She is just too tolerant of drugs!!!

Then, shortly before noon, her last IV access blew. That was unfortunate because they were going to give her sedation meds through that IV to put a PICC line in. One needs to be sedated for that procedure. So, they ended up having to give her an IM medication and versed through her g-tube so they could get another IV in, to give her the sedation meds, to be able to put in a PICC line. Whew! Of course, they asked us to leave for all that torture (standard protocol when a patient gets sedated), which is always hard on us (or any parent who knows you can’t help your child when they are in pain). So, Tom and I went to lunch.

After we got back, the infectious disease doc came by. The cultures are growing something, but it’s still too early to tell for sure. The nurse told me earlier that she heard it was looking like MRSA, but he didn’t say one way or the other. However, they have been on contact precautions all day (standard protocol with something like MRSA).

What he did tell me is that she will have to be on IV antibiotics for SIX WEEKS!!!! SIX WEEKS!!! He said bone infections are very difficult to treat and take a long time. We will have to come back once per week to have all her levels checked so they know that the meds are doing their job. Ugh. Now we just have to hope that the PICC line stays put for the six weeks. If it doesn’t, then she’ll have to get another one placed. Normally they take the catheter from the arm all the way to the right atrium of the heart. However, they didn’t do that for her. Because of her funky heart, they could only go to before her subclavian something or other. I’m thinking maybe that makes it not as secure? But I don’t know yet. And I don’t want to think about it. So, please cross your fingers that things will start working out for her.

As far as when she will be able to come home, this is my understanding:

They have to get confirmation on the cultures and she will need to be switched to the applicable IV antibiotics for 24 hours (to watch for any adverse reactions) before discharge. The ID doc said that we should have the cultures back Saturday or Sunday. So, if all goes well, we’ll be able to leave Sunday or Monday.

As you might have guessed, Harlie is a little different. She doesn’t follow any norms – medical or otherwise. And she often does just the opposite of what makes rational sense. It only adds to the challenge of being her parent. To prove my point, here’s a story…

You might remember that we’ve been struggling with potty training since the summer (like July). I believe that she CAN do it, she just doesn’t want to be TOLD to do it. When we knew that she would have to get used to wearing a hearing aid – I threw in the towel on potty training. There are only so many battles I can fight with her.

SO, last night (Thursday night) – around dinner time – they took out her Foley catheter. As of this morning, she STILL had not peed! And, keep in mind that she’s receiving IV fluids. So, her nurse felt her bladder and it was full. Her nurse figured she was potty trained and brought over the portable potty. Do you know that girl sat on the potty and went? Is she something or WHAT?! THEN, a few hours later – she still had a dry diaper. And she signed “potty” AND pointed to the potty! So, her nurse put her on it again – and she went!!!!

She has now gone ALL day with a dry diaper! She’s used the potty all day. And she’s even pooped in the potty – which is a dang miracle. I am just astounded.
So of all weeks – she’s going to pick this one to potty train herself. Thanks, that’s very convenient. I swear, that girl is something. She does things on HER terms. Her nurse said that kids that are in the potty training stage always regress while in the hospital. She has never seen one ADVANCE!

Well, they are about to kick us out of the PICU for shift change. So, we’re going to go eat dinner and come back later to visit with her some more before going to our friend’s house (Matt and Melissa) for the night.

I will update you as I can. Thank you for all your comments of love and support. I can’t tell you how much that support helps me get through these tough times. They are so appreciated!

Love,
Christy