Summer Smiles and Surgery

“Wow, I’ve never seen a kid with this much stuff going on” said the older nurse going through Charlie’s chart while Grandpa, Charlie and I waited in the Children’s Hospital of Wisconsin pre-operative room.

“He’s had 4 eye surgeries?! Oh wait, 5… oh no… 6 eye surgeries” she asked. And he’s had stomach surgery?”
Silence…

“His problem list, wow, I’ve never seen a kid with this much wrong.”

I turned and looked to grandpa to see if his eyes are as wide as mine and debated whether I should say nicely say “you’re making me feel really bad right now.” I did not and she moved on.

She didn’t mean harm, of course, but I didn’t need to be reminded of all that’s wrong because Charlie portrays all that’s right. In fact, you wouldn’t know anything is wrong because he smiles through the pain. He wakes up every morning happy to be alive.

Celebrating July 4th at Camp Paragon

Charlie’s rod lengthening surgery on July 28 was successful. It was 5mos behind schedule due to constant illness. Charlie had RSV the first time, covid the second time and parainfluenza the third. My last blog was confident that the surgery would be on June 9; however, Charlie got really sick a few weeks before and we discovered that he had parainfluenza. Thankfully we didn’t have to be hospitalized but there was little sleep due to nonstop coughing.

Due to the significant delay in surgery, Charlie’s curve started taking over so the surgeon said that he lengthened the rods much more significantly on one side of his spine than the other to try to get the curve as straight as possible. He would like us to schedule the next lengthening in 4mos rather than 6mos.

Charlie also had a skin biopsy in two sections of his chest because of a shiny rash that popped up a year ago. When we initially visited Charlie’s dermatologist I thought she would say… no big deal. Rather, she said this is concerning as it could be something called morphea, which causes your skin to tighten and in severe cases can make it challenging to move. She did say that if Charlie tests positive for morphea, there is a dermatologist at CHW who specializes in morphea, along with other issues. Well guess what – he has morphea! I mean why wouldn’t he?! Of all the challenges Charlie faces this isn’t that big of a deal but the news took a toll on me because it’s one more thing. And it’s never ending. Issues/diagnoses keep on popping up. While I was frustrated with the nurse shocked by all of Charlie’s medical issues, I mean, she’s not wrong.

Here’s some information I found regarding morphea, but we plan to follow up with dermatology next month. Circumscribed morphea presents as isolated lesions over the trunk or chest. The superficial variant tends to be mild, with inflammation localized to the dermis. In the deep variant, the inflammation spreads to the cutis and involves the muscles and results in scarring. A deep variant can often cause complications like joint contractures. Contracture symptoms include pain and loss of movement in the joint.

Monday of this week, Grandpa, Charlie and I drove to Milwaukee for a repeat swallow study. Charlie had a swallow study in September of last year and he unfortunately failed miserably so we wanted to repeat it and see if there has been any improvement. Eating is part of Charlie’s school curriculum where they go to a restaurant and order food – it’s part of the community based instruction (CBI). It makes me so sad that Charlie sits there and watches his friends enjoy food and ice cream. As much as it upsets me, I’m pretty sure it upsets grandpa 100x more. Grandpa has always worked really hard with Charlie to get him to take bites, tastes and even little bites of cheetos. Charlie was doing really well with eating last summer which is why I suggested a swallow study – just to be safe. To our surprise, he was silently aspirating – which means everything that goes into his mouth goes directly into his airway which ultimately goes into his lungs. He doesn’t cough or show any signs, hence the silent part. The speech therapist said that if you or I swallowed something that went into our airway we would start coughing immediately and it would be very uncomfortable. She doesn’t have a specific answer as to why Charlie (and other kids) doesn’t cough BUT Charlie does cough 24/7 so there might be a correlation. She also suspects that Charlie aspirates his saliva which is part of the reason he coughs 24/7. After last year’s study we were told not to give Charlie anything by mouth. Months went by and we slowly started to give him a little bit here and there thinking it wouldn’t be a big deal. Plus he enjoys food and loves ice cream. So that brought us back this week and unfortunately …. exactly the same. We have been instructed to not give Charlie anything at all including water. Knock on wood Charlie has never had pneumonia so we asked why it’s so harmful. She said that the food sitting in his lungs is damaging his lungs and if Charlie suffers a respiratory illness the damaged lungs could be damaged enough to cause significant issues. We are also very careful about checking for loose teeth because if Charlie loses a tooth, it’s likely going into his lungs.

Despite all that Charlie battles, he is so happy and smiley and he literally wakes up every morning smiling ear to ear, ready to enjoy the day that God gave him and us. Charlie has loved every part of summer so far. Check out all he’s done….

Charlie is a Baltimore Oriole this year in Miracle League and had several visitors come to watch him play.

We drove to a wonderful friend’s house in Delafield and went tubing for the 1st time ever! Charlie loved the boat and enjoyed tubing way more than I thought. It helped that his buddy Logan joined us.

I signed up Charlie for 3 different summer camps: Camp Paragon in Green Bay, Camp Hope in Appleton and Animal Adventure Camp in Rockland. Charlie’s aide at school, Miss Kris, also works at Paragon so she served as Charlie’s one-on-one aide at camp and Charlie was SO happy! This was them on day 1 🙂

During the six week camp, they went to Lambeau Field, toured the Sun Drop Museum in Shawano, went swimming & strawberry picking, visited Bay Beach, Wildlife Sanctuary and the list goes on. They also went bowling and I was informed that Charlie was the only kid to bowl a S T R I K E!!!

This is Charlie after I pick him up from camp!

I spent day 1 with Charlie at Camp Hope because they didn’t have a one-on-one aide for Charlie. It’s a great camp and the people are wonderful but I felt Charlie’s needs are too much for them to handle, especially without a specific person handling feeds, diaper changes, activities ,etc. We still had fun.

The first week of August Charlie signed up for Animal Adventure Camp. This is a camp organized, in part, by a friend so I asked if it would be possible for Charlie to join them – since it’s not for kids with special needs. She assured me that Charlie would be fine and that they have enough volunteers for a one-on-one assistant. Wow! It was wonderful. Charlie loved it and loved all of the cute young volunteer girls who gave him tons of attention. He pet kittens, goats, guinea pigs, bunnies, participated in story time, went boating/fishing, made art and loved it all.

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Charlie’s diarrhea/SIBO/small intestinal bacterial overgrowth is back. We are used to this now. About every 3-4 months it returns. I message his GI doctor and he’ll call in a prescription for an antibiotic. We cycle three different antibiotics. I can’t tell you how many clothes this boy goes through because of it. Thank God for his amazing caregivers to deal with this. More often than not it goes up his back because of the way he sits in his wheelchair. He currently has bandages all over his back due to surgery and it’s been quite a fight keeping the bandages clean until his follow up appointment later this week.

Al and I were invited to attend Dairy Cares of Wisconsin Garden Party benefitting Children’s Hospital of Wisconsin. A wonderful couple host the party at their gorgeous house on the Fox River raising over $2 million since it began 11 years ago. I am truly amazed at the selflessness of some people.

If you pray for Charlie I would ask that you pray for a mild form of morphea on his chest, more muscle strength as Charlie hasn’t been sitting up and holding his head like he used to while sitting in his wheelchair – it’s as if he’s losing strength. We ask that you pray for the SIBO to end, his thyroid to stabilize (we stopped his thyroid medication last week), and a no-illness rest of 2022.

I’d also ask you to add my dear friend Diane and her husband in your prayers. Diane shared a facebook post about her husband having brain cancer. They have been privately battling this for 20mos. While their situation is nothing in comparison to Charlie’s situation – there are similar frustrations, anger, confusion and sadness. I wish that I could comfort them the same way so many wish they could comfort Al, Charlie and me but there’s nothing anyone can do except pray to God for a miracle. To that end, please add them to your prayers.