"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Thursday, October 15, 2009

The Post I Told You Would Come

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.


Queen Mommy said...

I guess I hadn't really researched the pros and cons of the tracheal reconstruction surgery (most commonly referred to in "these here parts" as the LTR or Laryngeal Tracheal Reconstruction). When we first discussed decannulating Lily, I remember the ENT saying to me, "I know if I told you I could take your daughter's head off, spin it around, reattach it, and remove the trach that you would want to do it." [Um, oooka-ay.] He told us the only way Lily would ever get her trach out anytime in the near future was to have an aortopexy. The first time the surgery was suggested, the cardio-thoracic surgeons said, and I believe this is a direct quote, "Are you crazy? I'm not going back in to mess around with that baby's aorta!" (Keep in mind that this discussion took place just a few, short months after Lily's life saving surgery on her aortic arch to correct the narrowing.) This time when he brought it up, everyone was on board. We still thought Lily would need an LTR, but it turned out that much of her tracheomalacia was due to scar tissue in her chest wall. Once that was removed, her malacia improved significantly! The ENT bronched her a few weeks later, and he said we could attempt decannulation after she had a T&A. *Many* of the kids around here have LTR's (with the rib graft), and from what I understand, have them successfully. While you're considering your options, maybe it would be helpful for you to talk to other parents whose children have had a reconstructive surgery. They may be able to offer some insights, especially if it's been a few years since the surgery. Will continue keeping you in our prayers. I know these decisions are never easy to make!

Queen Mommy said...

If possible, see if Dr. P has some other parents who would be willing to talk to you about the surgery. Many times surgeons get requests like that, and they should be able to accommodate you. (I used to work for a surgeon before having the girls.)

The VW's said...

O.K., This post had me cracking up, crying, heartbroken and yet happy! How is this possible?!

Your quote on giving it to God "for a second" is so true! This made me laugh so hard, because I am SO GUILTY of this too!

I am so saddened to know that you guys are having to face this decision! What a difficult one to make, and like you said, neither have great outcomes! THIS SUCKS! Why can't life come wrapped in a nice pretty package sometimes?!

We have a friend that has had a trach for many years. She ended up with it because of a failed tonsil surgery. I'm telling you this to try to comfort you some. This lady is the MOST AWESOME LADY that anyone will ever meet! I don't even see her trach, I just see her! She has so much compassion for people and she has such a love for God! She knows that this was brought into her life for a purpose, and let me tell you, she has become the best person because of it!

I realize that this doesn't make it any easier, since as parents, we want the world for our children. But, God does have a purpose in all of this and He has given Marissa such a lust for life, that I know that nothing will bring your down! I am so excited to see God's plans for her, seriously!

You and Jeremy are wonderful parents and God has entrusted this perfect gift with you both. Hang in there! This does SUCK, but there will be good that comes from all of this!

Keep griping, keep laughing and keep praying! It's the only way to get through this life! I'll be praying for your family and thinking of you too! LOVE, HUGS and PRAYERS!

Michelle said...

OH girl!! My heart aches for you. I just mentioned to another Mommy who is getting her boy's trach today how it was bittersweet for me yesterday. As i sat beside her, as happy as I was that it was out, I was saddened bc I knew my friends who would still be struggling with trachs. I can't imagine the decisions you are facing. I wish I could reach out and hug you. I love how you wrote that God has been controlling things from the beginning and you are so right. Wish I could say or do something but I will do what I can and that is pray for continued strength and peace. Love you guys!

Janice said...

Your friend Queen Mommy is wise. And wisdom is what we all need. God promises to give it to us if we ask Him. And although you give this situation to Him for a few seconds and then take it back, He understands. He has many children. And He has prepared an abundance of grace for you through your friends and physicians.

Our hearts reach out to you. I'm sad about these choices but then I look at Marissa and rejoice that we have her.

It's time for a prayerfest for this baby and I know just the right group of grandmothers to do this. There's no prayer more powerful, more sincere, most unselfish, so driven by love and so sacrificial as the prayers of a parent for their child. And us grandparents are right in there.

Love you.

Nana and PaPa said...

Oh Sweetie....you are blessed in so many differnt ways...one of which is all of your blog friends who are so wise and so supportive. They know, they understand and they experience many of the same things you and Jeremy are dealing with. Even though we all wanted a more positive answer, there is still time for the decisions to be made...and many months of prayer for God to work His plan into this situation. You are surrounded with prayer warriors; those that read and follow this blog as well as grandmothers in a prayerfest....prayer chains in churches, and family and friends of all kinds. You (we) are truly blessed be have Marissa in our lives. I too have laughed and shed tears reading this blog, but I know....I KNOW....that God is still in control. And no matter what the future will hold for Marissa, she, as well as all of us, will make the abosolute BEST out of it! She WILL experience things in life that you want for her. Those experiences may need a bit of modification...but it will happen! Yep! You learned well how to tell God you're giving Him control and then wanting to keep your fingers on the steering wheel...just to be be sure He's steering in the right direction...lol.....right???? Love you all and praying with all I have.
Nana & PaPa

The round-the-worlders said...

Ditto. These comments are right on. All I can add is that here is another area of support and prayers from this camp.

Marissa is perfect. After the procedure, whichever it ends up being, she will still be perfect. OK, I am a grandma, but maybe I am not exactly objective, but there are just too many reasons she is perfect. G-d made her, you and Jeremy are raising her (with G-d's help) and a whole lot of people, even those who have not yet met her, love her tons. Since G-d is love, she is so full of love, how can she be less than perfect forever.

So, thanks for griping. It is good for your soul. Just know that all will be well, that you will be able to handle it and that Marissa will always be perfect.

We love you all, and are always here for you, in person and in our prayers.

Love Arnie and Dad

My name is Sarah said...

This is Joyce.I just found your blog from Jaxson and Lacey. I have been reading through your blog and certainly feel your frustration. Your daughter is darling with such beautiful hair:)

Our Sarah was trached when she was nine months old due to subglotic stenosis and tracheomalacia. We tried the crocoid split surgery and it was not successful. Our ENT said at that point he was not touching her airway again. So we accepted that she would have the trach for life.

At the age of six a new ENT came into town and she did a scope and decided there was a possibility she could decanulate. Sarah's original ENT who was still somewhat involved thought she was wrong. We went ahead with the surgery and Sarah lost her trach just after her sixth birthday.

I tell you this only as a way of saying maybe a second opinion might be an option and to never give up hope. We have had more than our share of pneumonia's over the years but a few days of IV rocephine and solumedrol and she is on her way again.

I will be continue to think of you and the difficult decisions before your family.

Colleen said...

I know how frustrating it is playing the waiting game. There are times when there seems to be no end in sight for the little man and the trach. I want to know exactly what the timeline is too. I also have to remind myself that it's not my timeline. Marrissa is so blessed to have such wonderful parents who would give her the world! Giving you extra hugs, smiles and saying prayers!

KH said...

I know this sucks so bad and you get so frustrated with the situation and yourself for how hard it all is for you to deal with, but I just want to say I think you are a great, amazing mom and that you seem to deal very well! I can't even read all those surgery words, much less think through what it would mean for my daughter to face them. My own two reminders this week have been that faith comes from God, not me, and that He does not forget us. He has not forgotten you or Marissa--she doesn't worry about herself because you're taking care of her--God is taking care of you, too. Thanks for sharing your heart. You will be in my prayers!!! Love, Kendra