I am Titanium, for real.

 

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Aidan is five weeks out from having his spinal fusion. Two titanium rods were placed from his T3 all the way to his pelvis. That’s a lot of metal. His scoliosis was significant. It effected his ability to sit up and to walk and would eventually have compensated his health because of the scrunching of his internal organs. His bottom rib was sitting ON his hip bone. You probably can’t even contort your body to do that on demand. So off to the OR we went. We had a very positive experience with the medical staff and Aidan healed exceptionally well. We busted out of the hospital in just six days, record time for us.

Aidan is on no pain medications and is walking quite a bit. He has to relearn how to use his muscles which will, of course, take time. This is essentially a new body for him. Are you ready for some pictures?

First, let me show you his scar. We took his bandage off after just 10 days and it had dissolvable stitches. Check it out:

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Aidan didn’t love the process but he was very patient with his daddy who put his CNA skills to work.

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Here he is having some chill time after that big event:

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Now check out what this surgery did to him in the most practical sense. Here he is BEFORE surgery:IMG_6766

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And here he is AFTER:

 

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And feel free to take a little peek inside:

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Amazing, right? Aidan certainly thinks so.

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Home Again Home Again Jiggidy Jig

The truth is, the doctor gently stroked Aidan’s hair the entire time he explained recycled blood and intubation. He remarked several times that we’re a team and would make decisions regarding pain control together.

The truth is, Aidan’s nurses were exceptional. They were calm and friendly, fully present and competent. They patiently answered our questions and accepted our observations. They encouraged us to call at 2am just to check in if we needed to.

The truth is, the hospital stay was not that long, only six days, considering that Aidan’s back was cut from top to bottom. Garreth and I split our time. The team helped us managed Aidan’s pain and taught us how to move him. It can be quite stressful to hold your own child in your arms and know you’re causing him discomfort.

The truth is, we got out early. The discharge team had to scramble a bit to get paperwork in order. Last year we opted to stay an extra day because I was not comfortable with homecare. This year, I knew that recovering at home would be easier on all of us. We wanted our ticket out and because we proved ourselves to be capable, we were released.

Though we are deeply grateful for all of these things, we couldn’t help but stride out of the hospital singing: I got 99 problems but you won’t be one!

So we’re home now and Aidan is recovering remarkably well. We’re remembering the incredible amount of energy it takes to do nothing after an adrenaline crash. I showered and got dressed one day, but mostly I’ve been walking around in my “lounge pants” which are decidedly NOT pajamas. Aidan has been sleeping quite a bit, but also sitting up and sometimes even smiling. Today’s big event was removing his bandage. His scar is nicely closed up and will win every “mine is bigger than yours” contest around.

It’s taken me four days to write this post. I can’t be sure it’s full of complete sentences and I think I might be drooling. Garreth and I sleep with one ear open and kick each other to indicate who needs to get up for midnight meds. We have no recollection of how we survived the newborn years, but then we remember we survived hip surgery and know we can do anything. I even told my PT we need t-shirts: “Don’t mess with me; I survived hip surgery” with the corresponding, “Relax, it’s just spine surgery.” This is so much easier, but still…..

Aidan is spending more time awake and just got up on his actual feet for a few moments. We’ve seen him smile too. Of course, all I could get on the camera was Liam’s goofy face and Aidan, oh so serious. Enjoy anyway….

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P.S If you like the snarky pop song gimmick you’ll love a Love Song for Insurance.

A Day at the Museum

Last week Garreth and I decided to have a fun, memory making time just with Aidan. These activities can be difficult to plan. What will he really enjoy? What is nearby and accessible? What would be consider a special activity, outside the norm?

We decided to go to our local children’s museum, and since we thought it best that he not run over the local children, we put him in his manual chair. Aidan was able to wheel around at a reasonable speed and participate in the cool activities at his eye level.

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Garreth and I enjoyed our time together and took a selfie to prove it:

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And because Disability World is with us wherever we go, we stepped into the EEG exhibit and joked about charging people to see us. The point of this particular exhibit is to teach you about bio feedback and calming brain waves which apparently only Garreth has. We strapped it on Aidan and watched the waves go bonkers. Good times.

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We are down to one week before spine surgery. Two titanium rods will be placed around Aidan’s spine from just below his neck all the way down to his pelvis. It will be a long day under anesthesia.

Scalpel and spine, hurt to heal.

Garreth and I are a great team but handle these situations differently. I need to name the monsters under the bed to be rid of them and then plan to be prepared for a variety of circumstances. We’ve known for a long time that Aidan would need this surgery. It’s still considered elective, absolutely necessary but certainly not an emergency. That should take the stress level down a bit, but scalpel and spine, hurt to heal, still builds tension.

My brain and body are in overdrive right now. Garreth’s work changed insurance carriers recently which has led to a bit of a kurfuffle with prior authorizations and such. It’s easy to say that the people who get paid to work this out should just work it out, but generally speaking it doesn’t work that way. I asked one wonderful man at the hospital, after he checked the records and said they had no information about Aidan’s surgery, if there was a chance we could show up to surgery and have no idea who was paying. He said absolutely not. It’s the hospital’s job to figure that out and yours to take care of your child. I love him for believing in unicorns.

And then there is the nursing care. Don’t even get me started. Really. I’m grateful to have a strong nurse advocate who is pleading my case to the state, but honestly, what is there to say? We haven’t had coverage in ages and we’re asking for so little and we haven’t received the level of care we should have.

All of that to say we really needed a day at the museum. Life shouldn’t be all about phone calls and worry and details and such. It should be about laugher and exploration and making memories. So we did.

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