We have been preparing ourselves for Ethan’s big back surgery June 30th, until we got a call last week that due to Covid it had to be rescheduled. They didn’t have a date for us at that time, but wanted us to go ahead with all of his appointments needed to ‘clear’ him for surgery in the meantime anyway.
So we visited his amazing Pediatrician in person. Gosh, I love Dr Russell! She is such a fan of our bald kid and I’m so happy to have her in our corner! All good there, said he’s the best she’s seen in years. Weight is stable, coloring of feet and hands is better, and of course he was sitting up showing off for her.
Pulmonology was next-it was a Telemedicine appointment. Based on his history of being difficult to extubate, she thinks he may suffer from a little obstructive sleep apnea because he’s hypotonic (floppy) and that his pharynx may be a little floppy too. He’s required racemic epi and oxygen and even bipap after a couple of surgeries. And he’s never been able to cough hard enough to clear so we are getting a cough assist machine at home to start working on his cough. Because post-op and in pain and he sure won’t be coughing on his own.
Then we took him to see our favorite bald doctor-Ethan’s cardiologist Dr Kaine. After an ECG and Echo, all of which were FABULOUS, he’s ok from a cardiac standpoint for this surgery too. His echo shows mild aortic and mitral valve leakage, which we already knew about, but his Melody looks as good as the day it was put in almost 7 years ago!
And after we got home from that appointment, I got the call that they DO have a surgery date for us now-June 19th is the day! Sooner than we expected, but all good!
He has a couple more appointments before the big day and a full spine CT and MRI. Since his scans will be done under anesthesia he has to have a Covid test done the day before-drive thru style at the main CMH campus. And the day before surgery he’ll be having a PICC line placed which will serve as his IV access, so no need for a bunch of pokes to get an IV at the start of surgery.
Our next few weeks are going to be crazy busy with E’s appointments and I have my 3 month CT and several PT appointments along with my regular visit with my Oncologist and my shots.
I’d be lying if I said I wasn’t a nervous wreck about Ethan’s surgery, it’s a major one. It’s an 8ish+ hour surgery, but because of Ethan’s heart, there will be a second Ortho doc along with Dr Schwend in the case. They will keep it to 6 hours to keep him safe.
They will be placing rods the length of his spine from T4-L5 -so upper back all the way to his pelvis. He’s going to be in a lot of pain post-op, so pain control will be our main focus in the immediate days afterward. I don’t know all the logistics of recovery time, PT, movement, etc. We have an appointment with Dr Schwend on the 10th to go over all of our questions.
I’ve had several people ask if now is a good time to get this surgery done for Ethan with all that’s going on with me. And I thought about it, long and hard. But I’m not going to get ‘better’. And right now Hailey and Parker are both here to help me take care of him. And we’ll have nursing. It’s a harsh reality, but one to face that if we wait another year there’s the chance I won’t be in any shape to partake in his care at all-AND the older kids may not be here to help. And besides, since there’s a pandemic going on, any vacay plans we had for this summer are shot anyway-so surgery it is!
Last weekend my sister, Mom and I took a trip to La Junta, Colorado-my Mom’s hometown and where some of my Aunts and an Uncle still live. My sister-cousin from further North CO came down too. We had a great time. We laughed. A lot. We painted signs and ordered carry-out (fantastic vermicelli) we visited the cemetery where my Grandparents are buried. My nieces (really my cousins-but more like nieces) and I walked the cemetery and looked at all the headstones and inscriptions and flowers and trinkets loved ones placed there and saw a headstone that was a bench.
I thought, what an amazing idea. A place to sit and talk to your loved one when you need to. We joked about how some headstones were covered with flowers and what-not. I laughed and told the girls that just like the ginormous extra bow their Mother needed on her sign the day before, that I’m not a believer in ‘less is more’ but rather ‘more is more’ and my headstone better be as extra as that bow I made their Mom. More is more! And that I would haunt them all if they didn’t remember that. I also got to see my Aunt Linda who is fighting her own battle with Breast Cancer right now-she’s on the downhill slide with only about 9 Radiation treatments left! When I was younger she corrupted me and fostered my love of horror movies by allowing me to watch The Shining when I spent the night with her! We walked to the 7-11 for our Big Gulps and M&M’s and then hunkered down to watch my first scary flick-I was probably 7. But I wasn’t scared because we had her big Dobermans to protect us! Anyway-keep her in your thoughts. Have I mentioned how much my family hates breast cancer-I mean really-three women, when is enough? We need a cure already.
I’ve been unemployed now for 6 weeks and it’s a weird feeling. Kind of like an extended vacation. I miss my work peeps for sure!
I wish the weather would pick a season-it rained like a monsoon here today and was cold last week and then we had summer temperatures other days! Makes it hard to plan anything. But then again, I have big plans everyday. Gonna finish a specific project, gonna start a new one, gonna clean out the basement, gonna clean out the garage. And then some days I just don’t have it in me to do much of anything. So I don’t. I’ve started making smaller lists of things to complete-so I don’t feel so worthless when I only get one or two done.
I’m hoping when I tell my Oncologist about my fatigue that she has some grand idea to help it. Especially since I’ve found a good combo for my pain that doesn’t make me drowsy-I hate that my energy is so zapped all the time.
I’ve got a couple of sign-painting classes coming up and I’m looking forward to them. I had one last week and it was so nice to be around people again! And I love seeing people create something they are proud of-everyone thinks they aren’t artsy or crafty-and those people are always surprised at how good their signs turn out.
I hope everyone is staying safe. I’m sick of the Covid and what it’s done to all of us. I really miss my family and friends. My gals I used to walk with and have a GNO with. I miss handshakes and hugs. I want the world to open back up again, and damn I miss First Friday’s. I’ve binged everything on Netflix and Prime and Disney+, now I’m watching an old favorite NYPD Blue. I did just finish an incredible book call Man’s Search for Meaning by Viktor Frankl, recommended by my Onco Psychiatrist. It’s written by a Holocaust survivor who was also a Psychiatrist. Currently we are working on what I want my Legacy to be when I’m gone.
Right now it involves lots of sleeping, wine and swearing. Lots of swearing. My Psych thinks I need to work on that Legacy....we’ll see.
Keep Ethan in your thoughts and prayers to remain healthy for the next 3 weeks.
And good results on my CT Scan.
Will keep you updated.
Love, hugs and prayers,
K
Pic of Ethan’s curve-we can’t wait to see how much taller he gets when his spine is straight!
He’s our little hunchback
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