They took Harlie back at 3:15.
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| Waiting is exhausting, for Dad. No worries, I got your back, Tom. |
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| In a good mood, even when hungry! |
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| Brave girl says, "I love you" with a smile. |
Got here and they just wanted to give me her hearing aids. Whew! But, way to give this mama with PTSD a heart attack! They told me that she was cracking them up in the OR and giving them all high fives. She is such a character.
So, for the breaking news...
Sometime after 5pm, her ENT came out and said he wanted to tell us what has happened so far. So far???
He said that he can see what happened and what he has to do. In the process of beginning the stoma revision, he discovered that the emergency trach (the one placed in Boston in August) was placed above her old stoma, and unfortunately through her cricoid cartilage (it isn't supposed to go there). This created a hole in her cricoid cartilage, which is a bad thing. Plus there was a ton of scar tissue. No wonder why she was having such a hard time with all things airway.
So, he needs to fill in that hole with new cartilage. He said he would try to take it from her ear. But, he hates to mess with her one good ear. So, he is going to try to take it from her bad ear. If her ears don't work, he will have to take it from her rib. That makes for a more painful and difficult recovery though. Plus, he said he would rather save her rib for a future surgery. Yes, what I'm explaining to you, might very well have to be done AGAIN in the future.
What he's doing is basically an LTR (laryngotracheal reconstruction). I think most of the time LTRs are done with a goal of decannulation (taking the trach out). Of course, we aren't there yet.
Unfortunately, her jaw is so small that he is unable to get a stent in her trachea through her mouth (which is clearly the typical way). The stent allows the cartilage graft to heal correctly (in the right shape). So, in her case, he has to be creative and do something he's never done before (but he's read about it in papers). They have to intubate her via her nose, and use the intubation tube as the stent. So, she will be intubated AND trached.
He will close her current stoma, and create a new one, in the correct place. And she will have to be kept sedated for TWO WEEKS!!!!
TWO WEEKS!
When they took her back to the OR, Tom said that he was going to miss her. It is weird to see her, but not see her, for a week. But, now two weeks?!?! We miss her already.
He feels like this is a good plan and he feels like this will help. It certainly explains a lot. And it validates my decisions and difficulties with her trach changes. But, there are still no guarantees. He can't really tell us what to expect. There is a lot of scar tissue, and removing scar tissue can cause more scar tissue to grow.
He said that if he didn't do it, it could collapse/close up everything above her new trach site and take away her voice completely. That is just not something we can risk. So, we signed the consent form for the LTR. And we wait and hope and pray for the best.
At about 6ish, one of the docs came out to tell me that they had successfully intubated her via her nose, but that it was very difficult and took a lot of trouble shooting.
Seriously people. Are things ever going to be easier for her? It seems at every turn, things go the hard way. My brain feels overwhelmed. She is so freaking complicated. She is so freaking unique. It is nothing short of a thousand miracles that she is still with us.
Now I'm starting to think of all the pitfalls that lie ahead. She got that horrible pressure sore after just two days under sedation in Boston. I'm assuming they will have to give her a central line for nutrition (which got infected last time).
Ugh.
I've got my work cut out for me. As do all of her docs and nurses.
It is now 7pm and someone just came out to let us know that he is still working and that she is "fine." We are now the last parents in the waiting room.
Thank you so much for all your thoughts and prayers. We appreciate them more than you will ever know.
Much love,
Christy xoxo
3 comments:
I am stunned to read about the improper placement through your precious daughter's cricoid cartilage. I know the trach was placed in am emergency situation; however, the improper placement seems unimaginable.
My heart goes out to you one mom to another. It’s like dominos! Can’t anything be easy? No wonder you were hitting a ridge in the back when trying to change Harlie’s trach! I have to echo Nicole’s sentiment. Unbelievable! By the way, my daughter had a trach to bypass scarring in her airway. Once she finished growing the opening that was left had gotten big enough that she could be decanulated even though the scarring was still there. I hope that growth will help some of Harlie’s issues. I have never posted but have been keeping you, Harlie, and your family in my prayers for years.
2 weeks? That’s an eternity. I’m sorry you all are going through yet another long challenge but I’m so hopeful it will lead to a better situation when it’s over.
We will be in VA from 3/14-3/21, but it sounds like you would just be getting home from hospital.
Sending all our love and support. If there is anything we can do please tell me!!
Robin
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