Thank you everyone for surrounding Fulton, and our family, in prayer this last week. If you haven’t been following along on social media (Pictures are all on IG.), let me bring you up to speed, and if you have, let me fill in the details for the last couple days.
Saturday – I took Fulton shopping at Target with Addie and let him buy a bunch of stuff with money and gift cards he had left over from his birthday. Usually I hate taking my kids shopping because I get frustrated with all the new crap they want to bring into the house (forgetting all the crap they already have). But,in this case I made an exception. He picked out a bunch of stuff including, SIGH, a stuffed Blank Panther.
Sunday – I spent the morning convinced I was going to cry through Mass and Fulton receiving the sacrament of Extreme Unction. Thankfully, I pulled it together by thinking about how blessed Fulton was to be able to receive this sacrament (pretty sure he get’s bragging rights not many 10 years old have in regards to sacraments), and also by reminding myself that if he saw me blubbering, he might start to really worry about the surgery. A few of our friends joined us, and we gratefully received meals and cards for the coming week.
Monday – I scrambled to make sure all the necessities were packed, and tried to reassure Teddy Fulton and I would see him again soon. Tony, Fulton and I arrived at the hospital just before 11 a.m. We got Fulton settled in his room and he got x-rays and labs. Tony went home and comforted Teddy who, while loving his grandparents and all the ice cream they were feeding him, was not happy about my absence.
Tuesday – Fulton went down to the OR around 6:30 a.m. It was there, while I chatted with anesthesia and the OR nurses that he admitted for the first time his fears about the surgery. He was convinced something bad was going to happen, and I tried to not burst into tears. We hugged him and tried to reassure him before a dose of medicine through the IV relaxed him enough for the worry to subside and he started smiling before they finally rolled him into the operating room. Tony and I sat in the waiting room for a bit working on our laptops (the hospital wifi not being as awful as I remembered, but still hovering around dial up speeds), before walking around outside and grabbing lunch from a food truck. We waited some more, eagerly anticipating the phones calls that came about every two hours from the OR to update us on the surgery. Around 5 p.m. we got word that surgery was done and the surgeon would be able to talk with us soon. We were happy to hear everything went well, better than expected in some regards. When he showed us the x-ray of Futon’s corrected spine, Tony and I were amazed. We never expected them to be able to get Fulton so straight. It was amazing. And they even left an opening where Fulton will continue to receive his Spinraza injections. I’d felt supported by prayer all day, but seeing those images, and hearing the words of the surgeon lifted a huge weight off my shoulders. I knew we still had a ways to go until Fulton was home and things were back to normal, but a major hurdle had been cleared.
We’d been told to expect Fulton to remain intubated (relying on a breathing tube for breathing support), but when we arrived in ICU, the tube was already gone, and he was doing great with only a bit of supplemental oxygen. Although he was talking a bit, we were assured the drugs he was on would prevent him from remembering anything. He was hooked up to what seemed like a million machines. Tony eventually went home, and I stayed bed side for a night of endless nurse visits, machine alarms, a couple pumps needing to be replaced, and Fulton’s requests to be repositioned.
Wednesday – Fulton was pretty miserable. I spent all day trying to keep him comfortable and not much else. He spent time in his wheelchair, but he hated every minute of it. That afternoon, Fulton required a blood transfusion as well. That, and some solid food perked him up a bit, but even after Tony arrived and I went home, Fulton had a rough night. I finally got a good’s night sleep, and Teddy could tell me about school.
Thursday – I saw Teddy onto the bus, checked school work, showered and went back to the hospital fueled by lots of coffee. Fulton was mostly the same and not excited about being in his wheelchair when I arrived. I helped move him out of the ICU and into his room where we continued to try to make him comfortable and alleviate his nausea. We had some success in the afternoon and Fulton manged to nap, and eat, but the evening (after throwing up) was spent constantly being repositioned trying to find the least painful spot.Fulton keeps asking how long he’ll be in recovery and I keep trying to explain recovery will last six to eight weeks, but he won’t feel the way he does right now that entire time.
Random thoughts – Shriner’s is a much smaller hospital compared to Children’s Hospital of Philadelphia where the boys get a lot of their care. But smaller does have it’s advantages. It’s much quieter and less crowded here. Everyone on the staff seems to know one another and everyone in the whole hospital seems to know Fulton. The doctors and staff check in more frequently, and are easier to reach. They also have several large community play areas perfect for wheelchair driving. Downsides include a very limited cafeteria that only takes cash, and less medical supplies on hand. Thankfully I brought some of Fulton’s supplies just in case. We didn’t need all of them, but after thinking about it, it makes sense that a smaller charity hospital focused on orthopedics would have less specialty items on hand vs a hospital that treats hundreds of conditions.
That’s enough for one post. I need to try to get at least a few hours of sleep on this so called “sleeper chair”. Thank you again for all your prayers, please keep them coming if you don’t mind.
In the mean time, write about your week and link it up below. Be sure to include a link back to this post so your readers can find the rest of the Quick Takes. I look forward to reading your posts.
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