Sunday, November 19, 2017

November, so far.

It has been two weeks since her scope in DC. For a while, I was so negative that I didn't want to write. Then, I only got brief moments to write. So, here's what I started after we were discharged on Friday, November 3rd.

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.

Me, Brandy, Sandy (my sister), Kelly and Maggie (my nieces).
I love my family. We are crazy loud, but really, we have so much fun when we are together.

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

Friday, November 3, 2017

DLB Results.

So, we are still waiting for them to take her back to the OR. I swear if I could add up all the minutes I have spent waiting on doctors, hospital rooms, surgeries, etc., in the last 11.5 years, it would be a scary amount of time. Maybe my super power is patience.

Anyway, I keep thinking that later today I will be happy or really sad. I signed the consent form for a DLB and for him to upsize her trach from a 4.0 to a 4.5. This is what I wrote about on October 11 about what it was like when she had a 4.5 in:

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!

So, here are the possible scenarios from today's DLB:

1. He finds something in her airway like a granuloma or scar tissue, and he removes it or dilates it. Hopefully, if this is the case, this solves the problem and gives her more air flow. Not sure if he would leave the 4.0 in, or if he would still upsize her. Either way, I am hopeful that she would have enough airflow to be able to talk.

2. He finds nothing and her jaw and tongue base is occluding her airway. He would definitely upsize her in this case, because her only air is through the trach. In my opinion, this would be a bad situation, because of all the things I talked about in my last post and the fact the she would not be able to make any sound.

So, we just have to wait and see. It is now 1:17pm and we are still waiting in the pre-op for them to take her back. Ugh. I thought I would take her pic and she would NOT cooperate! She keeps on doing this crazy face when I try to take her pic!



They took her back at 2:00pm.  He said it would take about 45 minutes. I only looked at my watch 1,092 times.

3:30ish, he came out to talk to me.

Here's what he found:

1. A granuloma. He removed it.

2. He upsized her trach to a 4.5.

3. Her trachea is collapsing on itself. It isn't so severe that the trach tube is keeping it from closing entirely. It stayed open without the trach in it, it just narrows. I don't know if this can get worse on its own. I suspect it can. It was caused by being re-trached. It just weakened it. This is very bad news. For several reasons.
    A.  It means she cannot go back and forth between being untrached and trached.
    B.  It doesn't necessarily mean she can't be decannulated sometime in the future, but it makes it way harder.
    C.  She definitely won't be decannulated until they feel good that there are no more surgeries ahead.
    D.  She could potentially need tracheal reconstruction. But, we can't even wrap our heads around that, so I won't speak further about that right now.

4. Something about the positioning of her stoma, and/or changes in her trachea has caused us to hurt her when we do trach changes. The trach is basically scraping/hitting the back wall of her trachea when we put a new one in. I am so glad she got this scope now, instead of any later, potentially allowing us to damage her more. We have to learn how to change it in a different way. No pressure, there.

5. The collapsing doesn't allow air to go past her trach and through her vocal cords. So, he put a fenestration (hole) in the top part of the cannula to allow air to escape and go through her vocal cords. He said he feels confident that she will have a stronger voice and that she will be able to wear a speaking valve. I am very thankful for that. And so appreciative of him doing whatever he could to help her. He had to experiment with many trachs and different size holes and placement of those holes to find the right fit. We will have to have custom trachs made to those exact specifications.

6. Her stoma and the skin around it and inside it is very fragile. I don't remember exactly what he said, but he mentioned that he might have to do a stoma reconstruction. The stoma is the hole in the neck, just in case you didn't know.

It would have been perfect if that list stopped at #2. But, it didn't.

I really don't know what to say. I am thrilled that she can talk. As she has recovered from anesthesia, she's been speaking more and I feel like she can tell she can breathe and speak better. But, she also asked me what it was (as she pointed to the trach). I think she was a little pissed that she still had it. And she could tell it was different/bigger, which I think is pretty cool.  She told me tonight that she wants her trach gone forever. I told her she still needs it. She said, "No, I dont." I told her she does, but that we are going to keep trying. She cried.

Her voice is stronger and way less robotic now, so I tried to focus on how great that is. I think it is a hard sell considering she had that just fine without the trach. Sadly, I can't remember what she sounded like before she was re-trached. It is as if parts of our life just diappeared from my mind. But, I think she sounds way more herself now.

But, I am devastated that we have new, permanent, complicated problems with her airway. And that this trach is here to stay for the foreseeable future.

My friend Mona came to visit tonight and brought me dinner from Peter Chang's.




It was awesome to see her and to eat a good dinner. She also saved me by bringing me some hearing aid batteries. Somehow I lost a bag of some of Harlie's stuff, which had her batteries in it!

Then, my friend Stephanie's cousin, Yvonne came to visit! She is doing her fellowship in the NICU here at Children's National. She brought me some food, too! So nice!!!

Hopefully we can go home tomorrow. But, unfortunately, Harlie will not be able to go camping. Tom and the boys and dog left this afternoon.

Okay, I am falling asleep while writing this, so I have to go.  Thank you for all the love and support!

Much love,
Christy xoxo




Thursday, November 2, 2017

October Summary

This is the blog post I've been working on and just hadn't finished. While I'm writing about what's going on now, I'll share this...

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.



November 2

I will pick up from there later. Still waiting for them to take her back for her DLB (direct laryngoscopy bronchoscopy).

Much love,
Christy

Airway issues.

Over the past week, Harlie has been having what I would call, episodes of respiratory distress. Just walking from room to room in our house was enough to cause her to start working very hard to breathe, retracting, abdominal breathing, and desatting (her oxygen saturation would drop from mid 80s to low 70s, sometimes high 60s). While she would recover fairly quickly once sitting down and catching her breath, it was still very unsettling. And it was very strange, because there wasn't a reason I could see. Her lungs sounded clear and she showed no signs of getting sick.

Her first episode was Thursday night. Since then, the episodes happened more frequently. And by a few days ago, she required oxygen around the clock, and her increased work of breathing was obvious, even when she was sitting calmly.

So, on Tuesday, I took her to see her pediatrician. She was not comfortable with her work of breathing, either. And she said it sounded all upper airway, like it was obstructed, and she needed to be scoped this week.

So, we went home and I emailed her ENT in DC. I told him what was going on and asked him if he could see her this week. He said I could bring her at 1pm the next day, Wednesday. Awesome!

We've also been noticing that her heart rate has been dipping unusually low lately. She has a pacemaker and it is supposed to keep her heart rate above 80bpm during her awake hours. We have seen her heart rate as low as the high 40s and low 50s during those hours. Since I was going to DC, I thought I would see if I could get in to see them, as well. Luckily, they could.

I was definitely worried about Harlie trick or treating that night. I didn't want her to keep getting out of her chair to go up to people's doors. I did not want her to have an episode while we were out. So, I asked our neighbors to please ask for candy for her. Which they were happy to do.

Harlie was Moana this year and Cooper was this pumpkin bobble head thing. Murphy was... well, I have no idea. He wore a silver drama looking mask , and was gone before I even got outside.



On Wednesday morning, we headed to DC for her appointments. We have a little superstition that if we are prepared to stay overnight, then we get to come home. But, if we aren't prepared to stay, then she will get admitted. So, we packed a bag.

Caylee (one of her nurses) went with us. Her ENT scoped her (put a camera down her trach) but saw nothing obstructing her airway below the trach. So, he said that there could be a granuloma or scar tissue obstructing around her trach tube. In order to know, she needs to be scoped from her mouth or nose. In order to do that, she needs to be under anesthesia. He said she was working too hard to breathe. He said he believes her trach size is too small. She's just not getting enough air.  So, he said he wants to scope her Thursday morning, and admit her today.

We weren't surprised. Listening to her breathe on the drive up was stressful. Honestly, I was relieved he was admitting her.

She wanted this baby care kit from the gift shop. She cracks me up.

Coloring in the emergency department (we had to get admitted through the ED).


We probably got to the ED about 4:30pm. And hung out there until about midnight. Then we got put on the heart and kidney unit about midnight.


Ahhh, finally some peace and quiet. That ED was pure chaos!

I don't know when she will go to the OR to be scoped, but they are assuming close to 7am. I really hope this is something easily fixable. I'll update when I can.

Thank you so much for your continued support. We would be lost without it!

Much love,
Christy xo

Tuesday, October 24, 2017

How we are doing.

I've been working on a post, but it is long and unfinished. I'll get back to it and post it soon, I hope.

For now, I just want to tell you that we are doing our best. But, honestly, it is a struggle every single day. Harlie is pretty miserable. I just went in to feed her (it is 11:00pm) and even though she is sleeping, she is uncomfortable and tossing and turning. She is itchy from her bed sore healing (which now has a rash around it) and itchy around her trach. Her face grimaces, even in her sleep. And I even gave her Benadryl tonight. It is very hard to see her like this. She is in pain, and there is nothing I can do for her.

Yes, on occasion we see glimpses of her personality. But, they are fleeting moments. For the most part, she's been pretty darn miserable since August 8th - almost three months! I think that is a lot for a girl who just turned eleven years old.

And it is a lot for Tom and I. Last night she said, "I hate my trach." She asks us regularly when can she get the trach out. We have no answer for her. Last night she said, "Maybe before Spring Break?" And her voice is so weak. And it is so much harder to understand her. It takes so much effort for her to talk, and most of the time we have to say, "what?" So she has to say everything multiple times! I miss her cute little voice and her cute little laugh so much it physically hurts.

And the nights or days when we have to suction a lot, or just do a lot for her medically, she will look at me and say, "I'm sorry." I'll tell her it is okay and I don't want her to be sorry. I will take care of her as long as she needs. Frustrated, she'll ask, "What's wrong with me?"

Some days, I don't know how much more my heart can take. It is hard to describe what it feels like to watch your child suffer. And we've had to watch so much over the last eleven years. It is not right. It is not the way it should be at all. And I just want to see her happy and "healthy" again.

For so long I was so hopeful. We had so many surgeries ahead, and they were going to make things better for her in the long run.

But now, that hope has been replaced by fear. I'm fearful that we won't be able to fix her jaw to enable her to get the trach out. I'm fearful that we won't get back to the way things were. I'm fearful she will get so behind academically that she won't believe how smart she is. I'm fearful she won't be able to develop friendships. I'm fearful of the day we have to take her back to the hospital for another surgery. I'm fearful that she won't find happiness again. I'm fearful we will lose her.

Every day is a struggle. And somehow Tom goes to work and focuses on his clients and what they want. I don't know how he does it.  Some days I can't get myself out of the house. 

And Cooper misses his buddy. She doesn't play like she used to. He had a bad day last week. Just misbehaving, not listening, etc. It was over the top for him. So I finally sat him down and with more concern than anger, asked him to please tell me what was going on with him. He started to cry and he told me that he's lonely and he misses Harlie. He said that she always tells him she's too tired. He will go and just sit with her and watch what she's watching just to be with her.


It is hard. Everything is just so freaking hard right now.

This is not sustainable. We have to figure this out. We just can't live like this for an undetermined amount of time. We need to focus on getting Harlie happy again. And once she's happy, we will be happy, too.

Harlie loves to go camping. And our fall camping trip is just two weeks away. This is the most fragile she's ever been when camping. So, we are a bit nervous about it. Tom is working so hard to make this trip safe and fun for her. But we are struggling with a few things. For example, this trip is unplugged, meaning no screens. But, Harlie can't play like she used to.  She lacks energy and mobility right now. So, we are struggling with what to do about that. If watching tv is how she is coping, I hate to just rip that away from her.

Well, it is late and tomorrow is a busy day.  I am going to force myself out of the house to go and get a very overdue mammogram. If that doesn't motivate me, then I don't know what will. Then I am going to go to work and try to pretend that my life isn't as bad as it is. So, I need to get some rest!

Thank you for reading. Thank you for caring about us. We appreciate it more than I could ever say.

xo,
Christy


Thursday, October 5, 2017

General Update

So, Harlie's birthday was Monday, the 25th. And Cooper's birthday was Tuesday the 26th. He turned 9.

It was very hard to make Harlie's birthday special this year. For one, she's in pain most of the time. And she can't choose a special breakfast, lunch or dinner. She doesn't eat cake. And we are all kind of just in a miserable place right now.

Anyway, she's been asking to get her ears pierced for a long time. And we wanted to do it over the summer. But then, with her surgery coming up, we thought it would be better to wait till after. So, after all she's been through, we thought that would be a good way to make her birthday special.

I've called this place several times. Over the summer I told them about her small ear. They said they would have to look at it, but didn't suggest that I make an appointment with anyone in particular. At any rate, my ability to plan and coordinate is at an all time low right now. My brain is somewhere else. So, by the time I called recently, they had no appointments available, but said it is first come, first serve. So, in we walked.

They wouldn't do it. They said her small ear probably needs a different kind of jewelry (neometal) because there is no room between her tiny lobe and her neck. And she said that she didn't feel comfortable doing it and that I would have to make an appointment with the owner. Ugh!

I explained to Harlie that she couldn't get it done and we would have to come back later.  She just said, "okay", no tears. It kills me that she handles disappointment so freaking well.

A few days later, while on the phone with this place, an employee told me that the employees working that night questioned whether she could speak for herself. Ugh. Oh, what they don't know about her!!! She's full of words, and thoughts, and feelings! Even though she looks different. Even though she's been through hell. And even though she is having to learn how to talk with no air passing through her vocal cords. It breaks my heart that what people see at first glance is so very different than what's really there.

So, we got back in the car, and we panicked about what to do. We had no back up plan!! How did I mess this up so bad??? This girl, who is so loved, probably wasn't feeling it at all. Her cousins Maggie and Kelly came with us for the big event (flop) so, at least they were making the night more special and fun.

Years ago, we started a tradition of taking them to the toy store on one of their birthdays and letting them pick out their gifts. I don't remember how this started. But when I asked them if they still liked that, they both said yes! So, instead of going on Cooper's birthday, we went then.

Cooper picked out two small gifts. And Harlie picked out a camping Playmobile and two movies. That is all they asked to have. Isn't that crazy?

Don't you love her shirt?
It was a gift from her summer tutor, Ms. Johnson. 
After that, Harlie asked to get ice cream. That is a minor miracle, as she never eats it. Usually she takes one small micro lick, and calls it a day. But she actually ate most of one scoop. I'd give this girl all the ice cream she wanted, too.


Then we went home and let them play a bit.

It was a hard day, in general. Her birthday always brings mixed emotions. I don't want to remember the day she was born, as it was one of the most difficult and painful days of my life. She's come so far, that I usually feel more success and pride than saddness.  But, not this year. We went back so far and lost so much. And she's in pain. She is very limited in what she can do. It changed so fast. And we are all grieving.

Anyway, Cooper's birthday was good for him. But he's always happy.


I love how Rooney is lurking in the background!

Harlie has gotten so many cards! 


This shirt was a gift from my friend Susan P.
Love it!

Last Wednesday, we had a follow up appointment with the wound care nurse practitioner. That went well. Her pressure sore is healing "nicely". And she's gaining weight well. She's now up to 54 pounds, which was her weight at pre-op in August.

Forgot to tell you that we met with her physical therapist and a wheelchair guy more than a week ago. We picked out a new wheelchair for her as she has totally outgrown the one she has.

And we have come to the conclusion that she will most likely not be able to push it herself. That is just too taxing on her heart and lungs. So, we are getting her a smartdrive.
It is an attachment that goes on her wheelchair. It allows her to move the wheelchair without her pushing it. And it keeps the chair from being too heavy for me to put in the car. Most motorized chairs are too big and heavy for our current car situation.

She will wear a bracelet that connects via Bluetooth and when she taps her wrist twice, the wheelchair will go. When it is up to the speed she wants, she will tap her wrist once and it will lock in place. Then when she wants to stop, she taps it twice again and it will stop.

It is pretty exciting to think about giving her that independence. I don't know when we will have it, hopefully by Christmas?

She started homebound school last Thursday. Now that she's gotten a few sessions in, I think I can already see a small difference in her spirit. She definitely misses school. Last week I had to take her with me to get Cooper from school and take him to swim practice. I heard a noise from the backseat and looked and saw she was crying. I asked her what was wrong and she looked away and said "nothing." I asked her if seeing her school made her sad and she said yes. She also asks me, "When am I going to be my normal self?" My heart breaks for her so many times a day.

I've had a hard time writing because I just don't have much good to say. Life is really hard right now. And I constantly worry about how she is now, and how she's going to be in the future.

Management of her trach has been very difficult. She plugs every single day, multiple times a day. That means that secretions get dry and sticky and fill the trach tube, reducing her airflow.  I have been trying to figure out why that's happening. Even at night when she's on heated humidity. Its stressful.

We have been giving her a calorie powder in all of her feedings. I'm thinking this is drying her out. I've added more water to her schedule and I haven't seen a difference. Today I am going to have to reduce the calorie powder and see if that changes things.

I'm back to being an amateur medical sleuth, looking at everything as a potential clue and trying to figure things out so I can make things better. It is exhausting on my brain.

Well, today we try to pierce her ears again. We have an appointment this time. I sent the owner pictures of her ears to help her figure out what she wants to do. Should've done that months ago. But those are the things my brain just can't do right now.

Thanks for reading. Thanks for all your continued support. Thanks for your love and patience with thank yous that I haven't been able to say to you individually.

Much love,
Christy xoxo








Sunday, September 24, 2017

Harlie's 11th birthday eve

Harlie's birthday is tomorrow (Monday). She will be 11 years old. This post that I wrote on the eve of her 7th birthday, popped up in my Facebook memories today.

Ahhh, the innocent hope I had four years ago. That innocent hope I will never have again. I'm experienced. I'm seasoned. I'm tired. I'm sad. I'm angry.  And I'm trying. But it is hard.

Since that post four years ago...

I had to stop sending her to school and put her on homebound,
She got healthy (thanks to not going to school).
She started to tolerate a cap (which allowed her to learn to breathe through her mouth and nose for the first time ever).
She was decannulated.
She started to attend school for short periods of time.
She worked up to full days.
She changed schools and moved to our home school.
She attended her first entire full school year ever, 3rd grade.
She went to swim lessons and could hold her breath and pick up things from the bottom of the pool.
She talked up a storm and was able to be understood, even by people who didn't know her.

LIFE WAS GOOD.









Then she had surgery to open her mouth and BOOM, all that good stuff was gone.
She almost died.
She was re-trached.
She got a horrible bedsore.
She went septic.
She spent 4 weeks in an ICU.
She's back on homebound because she can't attend school right now.
She has virtually no air leak around her trach, so she can't wear a cap or speaking valve. She can hardly speak, and knows it.

Honestly, there's not a lot of silver lining right now. Trust me, I've tried. And I consider myself a master at finding it.

I need to have patience. She went through utter hell, and lived to tell the tale. I need to give her body time to heal and hopefully, she will start to get her strength back and will eventually be able to breathe around her trach (without additional surgical intervention, which is my fear). It is just really, really hard.

I need to have something to hold on to that tells me this will all be okay. But that innocent hope is gone. And life with a trach (AFTER life without it) isn't okay. I'm sorry. But that's how I feel.

There was a time years ago that her eating by mouth was important to me. In time, I came to accept that maybe that just isn't going to happen. And, well, life without food IS okay. Maybe she feels differently, or will in the future. But, from my perspective, she has a really good life without food. Being tube fed hasn't really stopped her from much.

But the trach? Well, that's an entirely different story. It stops her from a lot. And I'm so terrified that it won't be temporary.  And I'm angry. I'm angry that life has to be so freaking difficult for her. She's just a kid for crying out loud!

I know that most parents feel like their kids grow up so fast. And they do. I know, I have two of those myself. And I am so grateful that they are healthy and free to grow, as they should. I see girls who are Harlie's age, and they are becoming more mature, looking more and more like beautiful young ladies.

Harlie's body is not free to grow. She is 11 years old and still wears size 1 in shoes. She weighs 52 pounds, which is 2 pounds less than she weighed last year at this time. She measured 48 inches tall a week ago, but was 49 inches tall last year (explained by loss of core strength and not being able to stand up straight). All of this is because her body can't focus on growing. Not that I care much about growth charts, but to illustrate my point...


If August just hadn't happened... Harlie had such an amazing two years. The fall to here was fast and hard. I wish this post could be more uplifting. Maybe her next birthday eve...

Tomorrow, I hope she feels better than she did today. I hope she knows that I will always fight for her and that I will never stop trying to make her life better. I hope that she has more good days than bad. And I hope she knows that we are so, so grateful that she's here today, for us to love with all of our hearts. And I really hope that all goes well with her main birthday present, getting her ears pierced! We are taking her tomorrow when Tom gets home from work. Hopefully, tomorrow I will be able to post that it was a success.

Thank you for all the love you give to our sweet girl. We are so grateful!!

Much love,
Christy xo