I got such little sleep while in the hospital. And Harlie was sad, and so was I. We left the hospital at about 1 or 2pm on Friday. And I cried the entire drive home. The last time I did that was when I was pregnant with her and we learned that she had serious heart defects, in addition to her lung disease.
To say I was feeling down would be an understatement. As far as this trach goes, there is no light at the end of the tunnel. We wished for so long and worked so hard to get it out, it still feels like a shock that we are here.
The trach wasn't a choice when she was born. But it didn't feel like a life sentence. It felt like we were going somewhere and that we had time to get there. Now, it feels like we were sentenced to live a life we didn't want. It is a major loss of freedom. And I'm having a hard time coming to grips with it.
I know that we have to accept it. I know we have to make the best of it. I know we have to live our life differently and we have to think differently. We need to focus on what she CAN do, not what she CAN'T do. But that's all easier said than done. And it is complicated when she has her own feelings and she lets us know that she is not happy with the trach. The other night she said something that ended with, "this stupid trach."
I forgot to tell you that when we were in the ER getting admitted in DC for the DLB two weeks ago, they wanted to give her an IV. She said no, of course. I asked them if they could wait till she was in the OR (I knew they wouldn't go for it) but they said no. They did promise to only try one stick. If they didn't get it, they would wait. They called the IV team and that guy was AMAZING. He got it in so fast! Best stick ever. But, of course, we still had to hold her down. After they left and Harlie was still calming herself, she looked at me and said, "Why didn't you tell them to stop?" Ugh. Kills me that she could think that I'm not protecting her. Heck, in her eyes, I'm even helping them hurt her!
Anyway, back to leaving the hospital... it was quiet when we got home. Tom took the boys and the dog on our fall camping trip. I was so sad for Harlie and I to miss it. But, there was no way she could go.
A friend of mine had dinner delivered to the house that night. That was amazing since I don't cook and I really didn't want to have to make any more decisions for a while. Thanks Marcy and Patty!
On Saturday night a bunch of my family came over for a little "party" to cheer Harlie up since she couldn't go camping. My mom brought Harlie a Lego Friends set to build. She didn't get up until she was done.
We ate dinner, watched the movie Sing and laughed a lot. We also acted like we ate all the boys' Halloween candy and sent a photo to Tom to show them.
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| Me, Brandy, Sandy (my sister), Kelly and Maggie (my nieces). |
Sunday, Nov. 5
The boys got home from camping. It is so weird that we missed it. Been going there twice a year for years. It was not easy to have to sit it out. You could tell that Cooper missed Harlie. This is how they were the rest of the day.
Harlie is really gaining independence. She hooked up her own breathing treatment, including putting the saline in.
Monday, Nov. 6
Harlie's IEP was that morning. I was not up for that. I knew I'd cry, and I don't like to cry in front of people if I can help it. So, for the first time ever, I didn't go to an IEP meeting. I conveyed my wishes and let them handle it. I believe we really have a great team, so that helps. All went fine.
I had parent teacher conferences with four of Murphy's teachers that night. I'm happy to report that all is well there. They all said that Murphy is a really good kid. Counting my blessings there.
But, for Harlie, the nights are always harder than the days. Her sadness breaks my heart. If only I could make it all better.
Tuesday, Nov. 7th
We saw her pulmonologist. We love Dr. Schmidt.
Dr. Preciado (her ENT in DC) said that if her sats/oxygen requirement didn't improve within a few days, then we should see pulmonary. Unfortunately, they didn't. At this point, she was not tolerating the speaking valve at all. Her strong voice I heard initially was gone. She was back to talking while holding her breath. But her lungs look good and are not part of the problem.
I can't remember if I've already mentioned that she is still desatting when she walks any distance. Just walking to the bathroom gets her out of breath. So, Dr. Schmidt said we need to see cardiology for her exercised induced intolerance. Sometimes, I feel like we are chasing our tails.
Wednesday, Nov. 8th
Harlie had school picture retakes that morning. When I told her we were going to school for pictures, she asked if she could take her backpack. She wants to go to school so badly. But, her body is just not ready. Anyway, she did fabulous and I cannot wait to get her photos!
We also saw her wound care NP for her sacral ulcer (bed sore). She said we don't have to come back unless anything changes. And she told me I did a good job treating her wound. It healed really well. It is still sensitive, but it is closed, which is awesome. The new skin will remain more fragile and sensitive for a while.
Thursday, Nov. 9th
Tom and I had a date night and went to see a showing of the movie Le Ride. It was really good. Very enjoyable to watch.
Then, that night, we had some trouble with Harlie.
I never showed you a picture of the fenestrated trach.
The top trach has the hole in it (fenestrated). The bottom is a normal trach, different brands. This is how it works.
Ideally, air can get past the tube and then go through the vocal cords to make sound. In Harlie's case, there is some collapsing around the trach, not allowing air through. So, the fenestration allows air to pass.
It is not perfect though. One of the problems that we had was that when you suction, the suction catheter would get stuck on the hole, not allowing us to safely suction her. Another negative, is that stuff can grow through the hole.
This night, I think that's what had happened. Because when we suctioned her that night, and hit the hole, she flinched and started crying telling me that hurt. After that, she wouldn't let us near her trach, which is terribly unsafe. She has a strong cough, so we left her alone through the night.
Friday, Nov. 10
That morning, this trach issue got worse. She was very upset and her work of breathing increased dramatically. So, when Brandy got here, we did a trach change. I only had one fenestrated trach. The rest had been ordered, but weren't in yet.
She said she was very afraid of me changing her trach. And frankly, so was I. Especially since I had to use a different technique to avoid scraping the back of her trachea. It went okay, I guess, but she bled. It seemed to stop after a few minutes.
I went to work, which has actually been really good for me. I don't usually work on Fridays, but I've been trying to catch up from missing so much time in August and September, so I've been working whenever I could. Plus, I never know how my week is going to go. I plan to work two days, and then something happens, and I can't.
Anyway, I came home that afternoon and Harlie was still bleeding. And she was still very protective of her trach and wouldn't let us suction her. And she was still working pretty hard to breathe. It didn't make any sense.
We were supposed to go to my brother's (Bruce and Nancy's house) to draw names for Christmas. There was no way she felt up to going. So, Caylee came to stay with her. It took us a while to get her settled, so we went late. It was so good to be with my family. Sometimes things are so tense at my house. I feel like I don't ever take a deep breath when I'm around Harlie. It is very difficult to hear her breathe like that.
Anyway, we got home and it took three of us to suction her. It was terrible. We got her settled for the night and we were really hoping that she would calm down and sleep okay.
That is not how it went. Her work of breathing just got worse and we were very worried about her all night. No one slept. I thought about taking her to the ER. I don't understand why she couldn't breathe with that trach. But, after thinking about it, I realized it didn't really matter. She couldn't breathe, and the first thing you do, is change the trach. But I was very worried she wouldn't let me. She was so protective and wouldn't let us near it. And if I had to fight her, I thought that was too risky. My thought was that maybe she should get something to calm her down (like Ativan or something) at the ER and we could change it where I had back up and we could better help her. Also, since I had just changed it less than 24 hours ago, if the trach wasn't the issue, they could move on to the next step.
So, at almost 5am, I got up and got dressed. Tom started the car and got oxygen ready to go. I went to get her up, and saw that she had wet the bed, something she NEVER does. That made me even more worried. She told me she couldn't catch her breath and she could only say one word at a time. When I got her up, she completely fell apart and was in full respiratory distress. I realized there was no way I could drive her to the hospital. I was seconds away from calling 911, which I really didn't want to do. So, I said to Harlie, "Will you let me change your trach?" And surprisingly, she nodded yes.
She signed that she was scared. I told her that me and daddy were right here and I asked her to be brave. So, we put her on the floor, and I put in a non-fenestrated trach. This change actually went better than yesterday's. We sat her up and she took a deep breath, and smiled. And the respiratory distress was gone. Thank God. Because that was awful.
I put her in bed with her clothes on, and she fell fast asleep.
We are so, so thankful for comfortable breathing and restful sleep!
She didn't tolerate the speaking valve with the fenestrated tube. And she certainly isn't tolerating it without. But her speaking is the same. She talks while holding her breath.
For some reason, I am feeling a bit less sad now. I'm so grateful that she's here, and that she's finally breathing better for the first time in months. I just can't see her in respiratory distress anymore.
I will never stop missing the sound of her sweet voice and laugh. No amount of gratefulness will ever take that away. And I hope and pray that one day we will get to hear her again.
I told her ENT that one day, I hope to have a road map to possible future decannulation. I need something to give me hope again. Honestly, I think it is very far away. If all goes well, in 8-10 years, we will be faced with a heart and/or lung transplant. Early adulthood sounded so far away when she was a baby...
Anyway, I have spent most days having to put forth a concerted effort to not cry. But I'm better now. If we can manage this trach without constant worry, we might just survive this. She seems a bit happier, too.
Just a few nights ago, when I was putting her in bed, she told me she wanted to do it by herself. I said, "you want to suction yourself during the night?" She said, "Yea, give you a break." She's hilarious and oh, so sweet. But, suctioning yourself while you are sleeping is a lofty goal (that she did not achieve). But it sure was nice to see this sweet smile again.
She is still having issues with this exercised induced intolerance. After speaking with her cardiologist, the next step is to do a heart cath. Just walking around the house causes desatting and increased work of breathing. Today, she got up to feed the dog. When she sat back down, she was out of breath, and her sats were 70. She is too tired to play or go to school.
So, we are working on getting that scheduled now. Her last heart cath was four years ago, on December 13th. I remember it so well. At that time, we couldn't get her off oxygen. Anyway, hopefully we can get a date soon.
I think life with the trach will be a touch easier to accept when she is fully recovered and well again. She was so good before this surgery. Good in every way. After the trach, it's just been one issue after another - the bed sore, the belly infection, the trach stoma issue, the too small trach, the plugging, the respiratory distress, the fenestrated trach, this exercised induced intolerance, the oxygen requirement, etc. Heck, having the trach is supposed to alleviate many of these problems. To have breathing issues WITH the trach just feels like adding insult to injury.
We are scheduled for a follow-up appointment with her ENT in DC this Wednesday. But since she seems to be breathing easier now, I'm going to see if he will be okay waiting another week to see her. It is the day before Thanksgiving and traffic on 95 is going to be horrible. Like more horrible than usual. So, I'd rather not travel that day.
Well, that's it for now. Thank you for all the love. We appreciate it more than you know.
xo,
Christy
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