Blurry but super sexy hospital gown being taped closed to hold “manhood” protector in place for x-rays.
Garreth, Aidan, and I spent the day at Boston Children’s Hospital talking to two Orthopedic surgeons who work closely with Aidan’s regular orthopedic doctor.
So do you want the good news or bad news first? How about The Not Completely Sucky, The Where the Hell Did That Come From, then The Good News and we’ll top it off with a little To Do list?
Not Completely Sucky – We started our day with Dr. Spine. He was very thorough and explained everything well and had blue eyes on par with Aidan’s. We’ve been told for years that Aidan would need spinal surgery to straighten out the curve in his back. The question has always been when. Well, this doc said mostly what we’ve been hearing for years; Aidan looks good now and we really want him to grow as much as possible before we do surgery. Dr. Spine ordered an MRI to make sure there aren’t any underlying spinal issues that we don’t know about. This stinks because I just refused an MRI for Dr. Neuro this year because it involves sedation for Aidan. However, Dr. Spine said it’s crucial information for his surgery. So I guess the good news is we get a 2 for 1 – we can look at Aidan’s back and his brain at the same time. Aidan’s spinal curve is ok for now so it’s possible spine surgery is still two years away. However, Aidan has hit the stage of growth that can change the curve quickly which would make surgery more imminent which super sucks because….
Where the Hell Did That Come From – Aidan is having double hip surgery in 6 months. Dr. Hip was also wonderful and has blue eyes on par with Dr. Spine. (Are you seeing a pattern as to how we choose our docs?) To be fair, our docs have been watching Aidan’s hips but have been more tentative as to whether or not he’d need surgery. Turns out hip surgery is better to do before growth stops so the time is now. I was also under the impression that only one hip needs to be done but for a variety of reasons it’s actually both. The suckiest of all sucky is that recovery means Aidan cannot bear weight AT ALL for 6 weeks. I clarified this several times and really wanted to say, “He loves to walk and has worked so damn hard to do it and how dare you take that away and who exactly is going to pick this big boy up?” Instead, I started to cry because I totally knew the answer (and because I was tired because, well, you know, I had to leave the house at 6am and I’m not a morning person or a city person). Dr. Hip looked at us with great compassion and maybe just a hint of perspective as if he was thinking, “It’s not like you’re a cardiac or neuro patient.” Oh Wait….. WE ARE! Dr. Spine would really like Aidan’s seizures to be under control because they may affect his recovery. Which brings me to……
The Bonus Suckiness – We’re doing drugs, well, not all of us, though we probably should be. We’re starting new seizure meds for Aidan. I’m sort of dreading that but it’s time. It just is. The truth is, Garreth and I have walked more or less comfortably in Developmental Disability World for 11 years now having each other’s backs. But Medical World sucks! Can you tell? I can handle therapy and IEPs and taking his own sweet time to meet goals, but drugs and scalpels and shutting the body down and recovery…. no thank-you. We’ve hit a wall. Garreth and I were weary from other stressors walking into this appointment. But here is……
The Good News – Here comes the hard core positive spin. There’s an Au Bon Pain, Bertuccis, and Starbucks all on the hospital campus. I get to eat chocolate croissants, bread sticks, and lattes for a week. Also, Garreth has a pair of scrubs now because he’s a CNA (did I tell you that?) so I’m totally gonna wear them and walk into an operating room and say, “STAT!” Then I’m gonna hang out in the staff lounge and throw around all the neurology I know. Who wants to take bets that I can outsmart a resident?(an intern would be way too easy). We also heard about a thing called Sophie’s Place music therapy which gives us hope for other families like us that have access to this amazing opportunity. Which brings us to….
The To Do List:
*We have plenty of time to work out logistics. I’ll be in Boston for a week with Aidan and then at home with him for several weeks to recover before he goes back to school. *I’ll be working closely with the school since full recovery could take several months. It’s hard to say what level of function Aidan will have in that transition time. Fortunately, we have a great school team that is experienced with medical issues. *Aidan needs to gain weight STAT. Yeah, well, we’ve known that for years but the docs said it’ll make a difference in recovery. *Garreth and I will need to go on vacation this winter. We’re well aware that we’re not in the right place for this surgery now and have to reload soon. *We’re in the process of ordering a super snazzy hospital bed that will really help with recovery so we need to hope that our insurance is super excited about covering that STAT!
If you’re still reading this and wondering how we are….well, we’re exhausted and overwhelmed. After a day or two of freaking out we’ll regain our perspective. It’s not like they’re taking out half his brain or anything. We kinda sorta knew this day was coming and now it’s here. Like everything else, we’ll sleep on it and take it in stride.
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