Life at Home 2 weeks after HyProCure Surgery

When we returned home from our travels with Kevin’s surgery it was late and we basically only took time to unload the car before going to bed. The next morning Jon had to leave the house early for a meeting. I wanted an extra person around until I had a handle on how it was going to be with Kevin in the house. Luckily a good friend was able to come over that morning to keep an eye on Kevin to make sure he didn’t get up until I was able to get ALL our travel stuff unpacked and feel settled again so I could keep my focus on him. It took me several tries that first day home before I was able to find the most comfortable position for Kevin (see photo below). We had an abductor wedge because we had tried to use it with Kevin in the past, and it seems to help with keeping him in a good alignment. But it is not something we use all day. He is tolerating the boots much better than when we were out of town. I am happily surprised that keeping him off his feet is not that much of a challenge, as long as he is happy and entertained. There are still times when he makes a move to get out of the chair and sometimes he gets uncomfortable wearing the boots or abductor wedge and so we do our best to make him as comfortable and relaxed as possible. We are still watching a lot of Disney Jungle Book and Disney Mulan movies. Some of his other favorite shows are Little Einstein, Jake and the Neverland Pirates, Thomas the Train, and Sesame Street. Kevin’s cousins also made him another music video using Kevin’s new favorite song “Happy” by Pharell Williams (not Will Ferrell as I originally wrote but was thankfully corrected :), so we also watch that over and over again. Unfortunately, going for stroller walks outside is not an option right now, which is disappointing because that would be an excellent way to occupy our day. But the outdoor allergens are too risky right now and we don’t want to add any other complications to our life at this time. We lovingly call Kevin our “bubble boy.” Kevin and I recently started going to the mall which gets us out of the house and I can get some exercise while pushing him in the stroller. We also use the Hyperbaric Chamber a couple hours every day and I spend that time reading to Kevin and often times napping.

The hardest part of Kevin’s recovery was the first week after we were home while he is sleeping with me in our bed. This is something we never do except when we travel and stay in a hotel. Typically when we are in a hotel he doesn’t sleep well. If I turn over he immediately wakes up and thinks it is time to get up or something. But this time when we were sleeping in the hotels he was sleeping very well even the first night before the surgery. But after we got home we were lucky to be getting 4 hours of sleep, sometimes only 2 hours. I think he was staying awake at night because of the light from the bedside clock and even the light on the smoke detector. We feel it is necessary to sleep with him: to be sure he doesn’t get up on his feet; to be sure he doesn’t tamper with his bandages; and to be sure he keeps his feet in a good position (which is often the case because he is so flexible). Fortunately, Kevin and I are sleeping much better at night now and are feeling much more rested in the morning.

The other challenge with nighttime is that I recently had a hysterectomy and am experiencing the classic hot flashes especially at night. So before his surgery I was dependent on our ceiling fan to cool me off when needed. But because of Kevin’s obsession with ceiling fans, turning it on while trying to sleep with him is not an option…he would never sleep. So for now even though the weather outside is cool during the night it is also filled with outdoor allergens that I mentioned. So we have to have the AC on very low at night so that it will run and keep me cool. Sometimes I’m not sure if I am having a hot flash or if it’s because Kevin is a big snuggler - which I LOVE - but he likes to to sleep cheek to cheek and our cheeks are often wet and I’m not sure if it’s from the sweat or drool.

I was also concerned about being strong enough for the lifting. Since having my surgery my stomach is still very tender and weak. I can manage transferring Kevin (he’s a little over 50 pounds) from the family room recliner to the dining room table to the program table. I can even manage getting him in and out of the car…but not too many times. But I leave the stairs for Jon. And we do try to strategize so we are not transferring him needlessly. 

Today we had our 2 week follow up with Dr. Joe through Skype. Dr. Joe said the surgical sites on both feet look good. He said that it is important to keep the boots on especially his left foot because of the angle he keeps that left foot is not as flexible as the right foot. I’m sure Kevin will be happy to get his first bath after surgery tonight! Next week, we will be in Philly for our FHC revisit. Dr. Joe will be at FHC on Thursday and will see us there but we will also need to go to his office in NJ while we are there so he can check on his feet through an X-ray.

I don’t think I made this clear in my earlier posts but Kevin is non-weight bearing for at least the first 3 weeks after surgery. We will find out next week when we see Dr. Joe when Kevin can begin to start standing and then walking. I do know that this will be a very long slow and gradual process to ensure success for Kevin’s feet. 

Resting comfortably at home

I think he needs a crown!

I even made sure Kevin got to see the

Friday Garbage Trucks with a front row seat

Kevin's loves his old recorded Thomas the Train story 

from Uncle Steve, Aunt Dawn, and Cousins
He received an Easter/Care package from them
with lots of new fun stuff including an Easter story book read 
and signed by the family on video and a BIG apple!