We are less than a week from Owen's surgery date and my emotions surrounding it could not be more mixed. Yesterday at work, I was sick to my stomach all day thinking about what he was going to undertake in less than a week...and that I was voluntarily choosing these procedures for him. Owen needs to have a feeding tube placed. I know this. To place the tube he has to go under general anesthesia...and if he is going to do that, then it only makes sense to perform a muscle biopsy to rule out mitochondrial diseases. I know this. I just hate to make him go through all of it.
Pete and I brought Owen to the hospital last Monday to meet with the surgeon who will perform the muscle biopsy, skin biopsy, and work in conjunction with GI to place the g-tube. I instantly liked him and feel very comfortable knowing he will be in charge of my sweet guy for a few hours. While I can't remember his exact words, he had the ability to share with me that a large portion of the muscle in one of Owen's thighs would be removed (because Owen is so small and skinny), yet he said it in a kind and slightly joking manner; he made it less frightening in that moment and okay. Of course, now I worry endlessly about how painful the recovery will be for my little guy, but it needs to be done. I know this.
Owen needs to return to the hospital this Monday to meet with anesthesia and ENT. Owen's surgeon feels it is important for the anesthesia team to meet him prior to the surgery so they are prepared for all the fun Owen will be providing them on Thursday. Owen's airway continues to be a concern. It has been progressively getting worse over the past year and is starting to be at a place that truly frightens Pete and me. ENT has been added to help address the collapse and provide us with options. They may chose to perform a bronch on surgery day (I believe this is a scope-type procedure where they will go down his throat to ascertain exactly where the collapse is happening). I will know a lot more after we meet with ENT on Monday. Karen plainly laid out the fork in the road that we are approaching with Owen. Our first option is surgical intervention: a
Uvulopalatopharyngoplasty (UPPP) and then eventually when that fails, a tracheotomy. The other option is sedation. We use medications to sedate Owen so that he does not become agitated and that will allow him to manage his airway more effectively until it collapses entirely. Can't say we really like either choice...so we will meet with ENT and hope they have an option that falls somewhere in the middle.
Owen's temperament the past few weeks has been great. He is calm when awake and seems content. This is partly why I am struggling so much with the impending surgery. We are achieving the quality of life for our little turkey right now that we are always striving to maintain. It would be a lot easier to send him into surgery if we in the midst of weeks of poor eating and intense irritability. This surgery should have happened in April when Owen was having relentless seizures and really struggling. Given his happy mood, I have been taking him out and about a lot more. Owen has been enjoying his wheelchair which makes him a lot more manageable outside of our house. We even tackled the grocery store the other day and I think he loved it!
There is a super special family living in Chicago that I have come to care deeply about via blogging. This mom reached out to me over a year ago to tell me how much she enjoyed reading about Owen. I immediately started reading her blog about her family and specifically about her son who has a very rare genetic disease. She is really an inspiration to me- her writing has always focused on the triumphs of her son and has really helped me on the days when I want to wallow in the "why me", "why Owen", "why our family" doldrums of living life with a special needs child. After a post about Owen's impending surgery, she emailed me and said she had something she wanted to send Owen. In the mail we received a personalized cape from a group called
Tiny Superheros. What an amazing gift- if ever there was a super hero in our family, it is Owen! Owen happily wears his cape wherever he goes on the back of his wheelchair. I think it totally ups the cool factor for my sweet boy. We are so thankful that Owen is part of this amazing group and we immediately knew we wanted to pay the generosity forward. There is a Tiny Superhero we know who totally deserves a cape.... and it will be arriving soon!
I will try to post one more blog with the updates from the appointments this coming Monday. Surgery is scheduled for this coming Thursday, June 27th. I hope everyone who reads this blog with hold Owen close in their hearts that day and say a prayer for him. Here are a few pictures of Owen until next time:
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| On the swing at the Early Intervention Resource Room |
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| Ball pit at the Early Intervention Resource Room (he didn't love it which was really surprising....) |
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| Bath time- I love that he demurely adjusted his leg for privacy during the photo shoot! Who knew when we bought our house how much we would love having a giant claw foot tub in the main floor bath! |
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| As cute as can be |
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| Early morning snuggles- these two crack me up! |
