OK folks, here it is. The "gripe post". If you don't know what I am referring to, scroll down to read my last post and maybe even the one before it. That should give you enough backstory.
Before I start griping, let me just mention that I still consider the life we are leading as a family a blessing. Marissa is the most precious gift from God I could have ever asked for (even when she is doing her best impression of a Terrible Two Year Old!). I still count ourselves lucky because, honestly, things could be so much worse. I don't have to look very far out my front door to see that. I know that everyone has their burdens in life to bear and life sucks for everyone at some point. There is so much more suffering in the world than what we are going through and I am grateful that Marissa is here at all. I also know that God already has this all planned out and He will guide us through it. I struggle on a daily basis with my efforts of handing the worry and stress part over to Him. It usually goes a little something like this:
"Here you go God, take it, I just can't carry this. OK, thanks for holding it for a second God, I'll take that back now."
I know I need to trust Him but as I mentioned before, I am a huge worrier. On top of that, I'm a control freak. I just need to realize God has been carrying Marissa through things her entire life. Literally from day one, before she was born. He has a plan.
That being said, THIS SUCKS!!
Basically, Dr. P told us that Marissa has a very tiny chance to outgrow her vocal chord issues and be rid of the trach in several years. She talked about how the trach itself can cause vocal chords to malfunction. Basically, if you don't use them, you lose them. I explained to her that Jeremy and I think this problem may actually be congenital. The high pitched squeak we hear when she inhales sometimes is the exact same sound we heard minutes after she was born, minutes before she was intubated for the first time. After that, each time she was extubated, her stridor was still that high pitched squeak but it was combined with a raspy sound because her vocal chords were trying to heal from having a tube shoved between them. We thought that the sound would clear up as soon as she was given enough time off the vent. That never happened, as she would go for about a week off the vent and then need it again. This went on for two months and we eventually decided she needed the trach due to malacia and her small, recessed lower jaw. It didn't occur to us that she might have a vocal chord problem until much later. After Dr. P heard what we had to say about it, she agreed that the issue sounds congenital and, therefore, the chances she will grow out of it are slim to none.
So, without using so many words, Dr. P basically told us that we have two choices: the possibility that Marissa will have her trach for life or Marissa undergoing a major surgery that will change her sweet little voice forever and increase her risk of aspiration. I have also read from other parents of kids who have had the rib graft surgeries that there is a risk of the surgery failing and needing to be repeated. The strength of her neck will be compromised and a blow to her neck could be very serious, even deadly.
Now, I want to be clear here. I am fine with her having the trach as long as she needs it. I couldn't say that even a year and a half ago but I am fine with it now. Sure, the trach brings on a lot of extra work, supplies, worry and stress but it has become just as much a part of her as the nose on her face. We are used to taking care of it and all that comes with it. For the most part.
I want the trach out for her. I want her open airway and compromised immune system to be gone. I want her to know what it is like to breathe without a hole and a tube in her neck. I want her to be able to play and learn without having to stop twice a day and have her trach cares done. I want her to be able to work on swallowing and tasting food without a tube sticking down her throat. I want her to be able to swim and play at the beach. I want it for her.
Back to the choice of a trach for life or a major surgery that brings on it's own major side effects. Just a warning, I am going to get a little crass here. I see this "choice" as being just the same as getting to choose between a poop sandwich and a poop taco for lunch. Both stink. Both leave a horrible taste in our mouths. Both are equally hard to swallow. Some choice, huh?
I am just so sad it has come down to this. It wasn't supposed to be like this when the Dr. discussed traching her. It was supposed to be a year, tops. It will be three years in May. I have watched kids that I have grown to love, both in person and in cyber space, get decannulated. One Little Precious just got her trach out Tuesday! It made my heart soar to see! I literally cried tears of joy when I read her mom's update. Unfortunately, it also stings a little. It stings because I am not sure if/when it will happen for my Little Precious and if/when it does, it will only come from a major surgery that will have some major side effects.
So, I think I am done griping, for now. I fully trust Dr. P with this and I know she will do what is best for Marissa on a timeline that is best for Marissa. Now, I just need to educate myself as much as possible to prepare for what the future holds. And give it to God. And not take it back.
Oh, I almost forgot. Hope asked how Dr. P's babies are doing. She said they are doing fine and are getting bigger fast. Her son is still on O2 but they were able to take her daughter off O2 a while back. I wished I had asked to see pictures but I forgot. I am sure they are cute as buttons, just like Dr. P. : )
Sorry this was so long, and kind of all over the place. Thanks for reading.