October 3
I had Harlie's IEP meeting at her school. IEP meetings are never fun for parents. But, I feel very lucky and believe I have a good team that really cares about Harlie. Since she can't attend school right now, she is receiving home bound education, which means the teacher comes to our house to teach her. Unfortunately, teachers can't come during contract hours (which means they can't come during the school day). There are teachers that can come during the day, but Harlie needs her special education and hard of hearing teacher. So, the higher ups were emailed and the situation was explained - she is young, very behind, has special education needs, and is recovering from a horrific hospital stay that left her with a bed sore that escalates in pain throughout the day. So, the later you come to teach her, the more pain she's in and the harder it is for her to learn. All the people that needed to make an exception in her case agreed and said yes, her teacher can come during the school day. This was a big win! I'm so thankful for all who thought about her case and wanted to do what's right for her!
October 5
Harlie got her ears pierced successfully! So, that's a win. She was so excited to get them done.
She definitely did not like the piercing itself, but recovered very quickly and jumped off the table to go check herself out in the mirror with a big smile. These are the earrings she picked out.
I almost cried, as I was a little overjoyed at the privilege of getting to do something so normal with my daughter. And as little as she is, in that brief moment, I realized she's growing up (albeit at her own, very slow pace). And I was really happy for her.
October 6
In doing Harlie's nightly care, I found a blood blister under her trach stoma. It is so hard to find something on her and inside I'm screaming, "WTF is that?!" But, outisde, I have to be all poker face and say with a smile, "Okay, let's go get your pajamas on." I took a picture and emailed her local ENT to ask her for guidance. The next day, the blister was gone and there was a little spot that looked like pus. So, she called in a prescription for some ointment to put on it after we clean it with peroxide. This area of her skin has really taken a beating. It hurts to look at it.
October 7-8
Cooper had his first swim meet of the season and just moved up to the 9-year old group, which means he only swims 50s or more. No more 25s for this guy. He had five events and shaved off time in each event.
October 9
Two years ago today she had her stoma closed. I remember how incredibly happy we all were. I still can't believe we are where we are now.
October 11
Her trach management has been difficult. Much more so than it was when she had it for the first nine years. I can't really remember her plugging before. But, this time, she has plugged almost every single day, sometimes, several times in a day. Plugging means that secretions get sticky and/or dry and clog the trach tube, making her airway even smaller, or sometimes blocked entirely. We have to put saline in her trach to help break down the mucus so we can suction it out. It is very stressful on all parties. So I started to think that maybe her trach tube is too small. Maybe if we went up a size, she wouldn't plug so easy.
This is something I had been thinking about for a couple of weeks. My only hesitation was that I was afraid she would have no voice whatsoever. While I know that breathing is the priority, her ability to communicate is pretty important, too. And taking her voice away was a huge concern.
After talking it over with a few people, we decided to try it. So, Brandy and I did the trach change and upsized her from a 4.0 to a 4.5. After I put it in, I sat her up and Harlie put her finger over the trach to say something. Not a sound came out. Her lips moved, but she was completely silent. She looked at us, hung her head and started to cry. I sat her on my lap and tried to tell her that it was really important that she can breathe safely. I tried so hard to be strong and not cry, but I just couldn't help it. It was killing me. How could I ask her to be okay with losing her voice? It's just too much. So, Brandy said, "We'll work harder to make the 4.0 work." So, we put her back on the bed and took the 4.5 out and put a 4.0 back in. And her weak voice sounded strong again compared to nothing. And I was grateful. So, we are now giving her scheduled saline nebulizer treatments to help prevent the plugging and that is going well. Whew!
October 12
Our elementary school had their fall festival fundraiser. Cooper really wanted to go. So, we asked Harlie if she wanted to go and she asked us what it was. We explained it and she said yes. I was afraid it would make her sad to go to school for that. But, I think it was good for her. I heard lots of kids saying, "That's Harlie!" And, "Mom, Harlie is here!" It was really cute. The best though is when we were standing in a line for her to play a game and the girl running the game came out of the classroom and went up to Harlie and said, "Harlie, want to play our game?" Harlie said yes and the girl took her to the front of the line. It was so sweet and thoughtful!
October 13
Kids got their flu shots and Harlie got her 11-year old immunizations. The boys went first and neither flinched. Harlie was crying just sitting there. Her medical anxiety is off the charts. I've never seen her like that before. There is no reasoning with her and nothing anyone says makes a difference. So, I had to put her on my lap and just hold her to get through the moment. I knew she wouldn't like it. But, I did not expect her to be that bad. She really made it so incredibly difficult for the nurses.
Given her anxiety then, I decided to reschedule an appointment for her g-tube (how we feed her). Back in May we saw someone about putting a different g-tube in. Right now, we change her g-tube every three months. It is a balloon type mini button. But, they now make a balloon-less g-tube that has be to be inserted at the doctor's office and gets changed only once a year. But, she said that it does pinch for a second when going in. But, Harlie is no dummy and she will tell that it is "procedure-like" and will likely freak out. And I just don't want to ask anything out of her medically that isn't completely necessary at this time. So, I rescheduled it for January and we'll see how she is then.
October 14
Tom and I took Murphy to go see the Foo Fighters concert.
Tom bought the tickets a long time ago. It is hard for me to look forward to doing something like that. A few weeks ago we went to see the Head and the Heart (also bought those tickets months ago). I LOVE them. But, looking forward to doing something out of the house makes me feel guilty, too. So, my feelings can get complicated. Overall, I'm not my happy self right now. But, at the Foo Fighters concert, I made the decision to try really hard to live in the moment. And that's what I'm going to try to do as much as possible.
Most of the time when I think of Harlie and what's going on with her, I look in the future and it is overwhelming. And there are so many unknowns. It occurred to me that she probably isn't doing that. The other day she saw a commercial for a new episode of Teenage Mutant Ninja Turtles and she was excited about it. Maybe she's living in the moment, too. Although she does ask us when she's getting the trach out. And we all get sad and I have to tell her that she's still using it to breathe. And if we took it out, she wouldn't be able to breathe well enough. So, she looked for her cap and tried again to put it on, and breathe without the trach. No luck. As of right now, we have no plan, medically speaking. Which is kinda hard. But, it is still too early to make one.
One of her surgeons emailed me a couple of weeks ago. She said she'd been thinking about Harlie and hoping that no news was good news. I had to email her back that I really believe that she has an upper airway occlusion again. Put simply, she cannot breathe through her mouth and nose, period. She is trying, but she just doesn't have an airway above the trach. This was her original problem and why she was trached for the first nine years of her life.
We climbed a mountain and it took us NINE years and FOUR brutal jaw surgeries to do it. She had a fifth jaw surgery and two days later, we fell down that mountain and we are right back where we started. Frankly, I'm having a hard time picking myself back up. I hope and pray that I'm wrong and that she just needs more time to recover. I think about this almost every second of every day. I want to solve this problem like yesterday. I want it to be the way it was. The thought of living for months or even years like this, feels impossible.
October 18
We saw wound care today for her bed sore. It is definitely a lot smaller and we are making a lot of progress. But the new tissue around it is very sensitive and fragile. And now she has a rash on the outside circle of the area. Unfortunately, we can't really treat the rash while we're treating the sore in the middle. Anything that we would put on the rash will prevent the dressing from staying on her skin. And right now, the dressing over the sore is the priority. We are still looking at weeks and weeks of healing.
October 19
This morning she had physical therapy for the first time in a really long time. It was a 9am appointment, which means we have to leave the house no later than 8:30am and that really doesn't leave any time for traffic delays. And I had no nurse. As I was packing to go, I kept remembering more and more stuff that I should have with me, just in case. I had to shake my head as I was carrying more and more stuff to the car. How in the world am I back here, lugging all this crap around?
And I thought about a nightmare I had the other night. In my nightmare her trach came out, she couldn't breathe and I didn't have her go bag with me (emergency kit with back up trach stuff). I had picked her up out of her chair and carried her somewhere, so I didn't have the hands to carry her go bag. Anyway, it was a terrible dream and so real in so many ways. So, you can bet your butt I'm not going anywhere without that go bag. And yesterday at her wound care appointment, her sats were rather low and I didn't have her oxygen with me. So, I ran back inside and grabbed an oxygen tank, just in case.
Just walking to the room from the car left her breathing really heavy. So I checked her sats and they were 73! I went back to the car and got her oxygen and put her on it. I guess any exertion right now is really hard on her body.
Tracy is awesome though and thought of things she could do anyway. And Harlie had fun.
October 20
Harlie had speech therapy today. She actually had it twice - she had her school speech and her private speech after that. Now that Harlie can open her mouth, she's been wanting try certain foods. When we were in the grocery store the other day, she saw a box of macaroni and cheese that had Teenage Mutant Ninja Turtles on it. She wanted to try it. So I bought it. Her nurse made it today so that it was ready when Amy got here. Harlie got a spoon and wanted to put a big scoop in her mouth. Of course we can't let her do that. So Amy found a small piece and let her put that in her mouth. She gagged and had to spit it out. She just doesn't know how to handle and move the food around yet. But, she certainly tried. I couldn't help but wonder if Harlie was disappointed. Had she looked forward to this and expected a better experience? Maybe she thought she would just know what to do once the food was in there? Maybe she thought it would be easier? Amy put a bite in some mesh and let her chew on it so she could taste it.
October 21
We took the boys on a hike to Mt. Pleasant, Virginia.
I will pick up from there later. Still waiting for them to take her back for her DLB (direct laryngoscopy bronchoscopy).
Much love,
Christy
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