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