Surgery, Surgery and more Surgery

Charlie’s latest scoliosis surgery was on December 1. The surgeon lengthened the rod on Charlie’s left side and replaced the rod on the right side. He also had his annual eye exam under anesthesia (EUA) at the same time. It’s HUGE that they were able to coordinate both on the same day, to avoid another OR/anesthesia procedure. I was nervous about both surgeries not happening since his last one was postponed 4 times. But it happened and Charlie handled it like the champ he is!

I’m nervous now of a couple of other surgeries Charlie will likely need – hip surgery and ankle surgery for both ankles.

The feet have been an issue for a few years – both ankles bow outward. He wears braces to hold them in place and to wear while standing since he can’t possibly stand on his feet bowing out that way. The problem is… Charlie’s braces created several blisters. It’s been a lot of trial and error and several new pair of braces but we have a decent pair now. Charlie’s surgeon said that ankle surgery is a tough one and if he performs the procedure too early then Charlie will need to repeat the surgery in a few years. Therefore we have been trying to prolong it as long as possible.

Left ankle is worse than the right

We saw his orthopedic surgeon on November 1 to discuss Charlie’s dislocated hip, a new concern. During that appointment he looked at Charlie’s feet and said they are flexible and look good as long as we keep bracing. But a month later Charlie’s physical therapist emailed with concern. I agree, I can barely look at Charlie’s feet because the bone is really protruding through his skin. It’s hard to look at. As long as he’s tolerating his braces we figured he can wait until his next appointment in May; however, over Christmas break Charlie made it pretty obvious that the braces now hurt his feet. We have an appointment in early February. You’d think ankle surgery wouldn’t be bad but I’m told it can be pretty painful. The good news is Charlie doesn’t walk but obviously we want to get him back up and bearing weight asap for his overall strength.

Since school started, Charlie has been jerking his left leg – usually when we lay him flat to change diaper. Charlie’s PT expressed concern over the left hip and suggested that we get an x-ray of his hip. We did and it showed the left hip is fine, but the right hip is dislocated by about 50%. I panicked. All I could think is that Charlie is going to need hip surgery very soon. None of his doctors seemed too concerned. They said – you’re good to wait a couple of months until your next ortho appointment. So I called Charlie’s foot ortho and asked if he could fit us in to look at the hips. We went on Nov. 1 and the surgeon explained that yes, Charlie’s right hip is around 50% dislocated BUT when looking back at previous x-rays of Charlie’s spine – he was able to see that in June of 2021 Charlie’s right hip was about 50% dislocated then. So in his opinion, the good news is that it’s been stable and hasn’t worsened. Thing is – I had no idea of the 2021 discovery. The plan moving forward is to x-ray his hips every 6mos and hopefully stability will continue. I guess hip surgery down the road is pretty likely but between his back surgeries every 6mos and probably foot surgery, I am hoping to hold off as long as possible.

School is off to a nice start. We were sad that his little girlfriend was switching schools, but a couple of weeks into the year, she showed up. She’s not in Charlie’s class but he gets to see her at recess. He loves gym class because the kids get a little wild and Charlie loves watching chaos – especially if that chaos means kids getting into trouble. He loves music class and story time but hates independent time. I’m told he puts his head down and refuses to do anything. Charlie is used to always having someone by his side giving him attention so when he doesn’t get it… he’s OUT.

Walking with his girlfriend

He loves speech therapy because he loves his therapist Amber and can now say her name. He LOVES watching this video and is very proud of himself.

We had a very busy October-November! Al and grandpa hunt and that’s prime time hunting time. Plus their hunt started in September this year since they got a bear license. I found a new caregiver to fill in some of the gaps and she is absolutely wonderful. She doesn’t have kids so she does overnights. She’s probably stayed with us at least 5 nights in the last few months. While grandpa dealt with his own health challenges, she joined me on doctors’ appointments for Charlie to/from Milwaukee.

Looking at fall leaves Up North with Grandpa

Halloween was great! Charlie is obsessed with music and anything Spanish so a mariachelo was a perfect costume.

Charlie stopped methimazole, his thyroid medication a few months ago. He was doing well until his last test and he’s become hyperthyroid again – it came on pretty significantly. His heart rate has been averaging 160 which is very high. His baseline is 120, which is also high, but that’s his baseline. We resumed the medication and doubled what we were giving him hoping to bring it down. We met with Charlie’s cardiologist who wants to wait and see if the medication helps reduce the heart rate before administering propanolol. His ECHO looked great!

Riding Maverick by himself!

Much to my surprise, the place in Green Bay where Charlie went to camp for six weeks this summer, also offers two Saturday camps a month. Charlie has been going and absolutely loves it. They have two outings a day and you pick the best one for your child. They include local museums, indoor swimming, trampoline parks and walking around the mall.

Charlie touched a rock from Mars at the museum via camp. Al said – at least it wasn’t a rock from Uranus 🤣

At camp – visiting a museum

As mentioned, Charlie had his latest back surgery on Dec. 1. He will get these every 6mos until he is old enough to get a spinal fusion. It actually might be sooner than I thought. His surgeon said newer research is showing benefits of doing it earlier than later but I’m not ready to process that. Charlie spent one night in ICU then we were discharged the next day. So much illness has been going around that if the hospital was too full, it would cancel his surgery since there wouldn’t be a bed for him. Thankfully we were good but they did discharge us faster than we’ve ever been discharged – which was nice. Usually they’ll tell you at 8AM you’ll be discharged today and you’re lucky if you leave by 3PM.

The day after we got home Charlie and I had a very busy day. Al had plans so I wanted to keep us busy. Charlie doesn’t sit around. He has never self-entertained. In fact, he doesn’t handle sitting alone – hence why we got Bo. Bo will provide a little comfort when I have to do something. On Saturday Dec. 3rd – Charlie and I went to an event for special needs kids at a movie theater in Appleton. Then we rang bells for Salvation Army at the Green Bay mall for 2hrs. Bo came with us. I think Charlie would have loved it if didn’t just have major surgery. He was also dealing with significant constipation. Charlie refused to sit in his wheelchair, he just cried. And since we’re trying to lure people to us and donate money that wasn’t a good look. There weren’t chairs to sit so I sat on the ground, put Charlie on my lap and Bo next to us. It worked. We did get some smiles. Charlie loved when kids came up and put money in the kettle. I think Bo was our biggest money maker, though… Salvation Army emailed saying that the kettle we worked at raised $326.65 that day. Not sure how many other people rang at our location that day but there wasn’t anyone there before us or after us. I’m looking forward to doing it again next year!

Charlie had his school Christmas concert on Dec. 21. This was the first concert he participated in so we couldn’t wait to attend. I assumed that they would sing Christmas songs….I should have known that Syble Hopp likes to keep it more interesting. Charlie’s class sang It’s Raining Tacos. Hahaha. If I only knew what Charlie was thinking when that curtain opened and he sees all these people starting at him. The best part was meeting him in his classroom after the show. He has the biggest smile when we saw all of us walk in… grandpa, grandma, Al, Auntie Beth, the Aichers and me.

On Thursday, Dec. 22, Charlie had 3 doctors’ appointments scheduled; however a blizzard was fast approaching and we knew that if we waiting to leave for Ohio on Friday then we would never make it. So I canceled two of Charlie’s appointments and moved up his post-surgery appointment. His physician assistant removed stitches and said Charlie’s back looks great. We rushed out of there and headed south. Roads were already snowy and a bit slick but we thought, once we get through Chicago and head east, we’ll be good. I live streamed ABC7 Chicago’s 11:30AM broadcast to gauge what to expect as we got there. I got to see my friend Diane Pathieu reporting live from O’Hare 🙂 They were saying that at 3PM a blizzard warning begins for all of Indiana. So much for thinking we’d be in the clear once we got through Chicago because we got to Indiana at 2:51PM. We were at the very front of the storm and it was awful. The fastest we drove was 45MPH. Once it got dark you couldn’t see if you were even on the toll road. I feared we would never get ahead but we did just as we entered Ohio. Then it was hard rain. We’ve never been so happy to see rain. It took us almost 2hrs longer than it normally takes but we made it. Charlie did amazing. Bo did too. I have him some calming treats and they worked.

The weather was worse than I expected once we woke up Friday. Plus 45min away on the Ohio Turnpike (the route we travel) there was a 50 car pileup with 4 deaths and dozens of injuries. Absolutely awful! Al and I heard the wind all night long, temperatures were below 0 and power was out at my stepsister’s house – the place we’re having Christmas in a few hours. We had to change plans and have all of my step family at my grandma’s house….. 30 of us piled into her family room for a Christmas themed game of Family Feud, musical presents, chanting and gift opening. We went to my uncle’s house for Christmas Eve and woke up at Mimi’s house (my grandma) on Christmas Day. Then back to Wisconsin. All of us had a great time, especially Charlie – but he was ready to see Grandpa.

We opened gifts with Al’s family later in the week and Charlie got a new snow sled from Grandma and Grandpa! Another special needs family brought it our attention. It has a running platform to stand on the back and push or ride along. It works really well. Charlie got to test it out up north over the New Year’s weekend. Thankfully there was still snow up there!

Up next – Charlie sees pulmonology, orthopedics, neurology and PMR (physical medicine & rehab). Pray for a miracle regarding his feet. I am pretty concerned. Please pray for Charlie’s continued happiness and a quieter few months with less stress for me.

In the last blog I shared that my friend Nick has been battling brain cancer for the last two years. His wife, my dear friend Diane, did a news story at her tv station in Chicago and Good Morning America followed up with a story. I hadn’t heard of methylation profiling until now and it’s pretty incredible. Please pray for Nick and Diane as they continue their ongoing fight. I was so happy to see them in person in more than 2yrs!!!

The Pfister in Milwaukee