Thursday, June 29, 2017

Going Home Photos

We weren't able to use our car to get Kevin home because he doesn't fit through the car door or have enough room to sit. We are so thankful that Jon had access to a van with a wheelchair lift from work. It was a tight fit but after a couple tries we got him positioned just right to get him through the doors into the van. It's a bumpy ride but our driver got us home safe and sound.

Wednesday, June 28, 2017

Tuesday, June 27, 2017

Home from the Hospital on Sunday

We came home from the hospital on Sunday and we were able to enjoy a relaxing afternoon on the porch! We deserved it!

As with all hospital stays we had some ups and downs but overall Kevin was in good hands and we are glad to be home. On Friday evening, Kevin's blood pressure was elevated and they continued to be concerned about his left leg swelling. Kevin was agitated and it's difficult to determine if he was in pain, tired, wants to move, all of the above. He eventually closed his eyes and slept well the rest of the night. My mom and I slept better too that night. The epidural was turned off early in the morning. The resident orthopedic doctor came in first thing in the morning and decided to split the left cast from top of thigh to knee due to swelling. A couple spacers were added in the split and then taped up. It should be okay the remaining 4 weeks until the cast comes off. From there, things moved quickly, Kevin's IV line was removed, the epidural, his heart monitor stickies, and the catheter (ouch!). What a difference it makes to get all those wires and connections removed. I got some coconut oil on Kevin's skin because he had been irritated and itchy the night before and then he got to wear a t-shirt.

On Saturday, after the wires were removed it was a good time to practice transfers. It was  overwhelming. There are so many things to think about before you move him. Then thinking through the logistics of how to get him home in a vehicle (his legs don't fit in our car) and into the house (with steps and doorways too narrow for the width of his legs). Kevin's surgery was on a Thursday so when they started the process to order us a wheelchair, bed, and bedside commode on Friday, nothing was resolved or confirmed before the home health care company closed for the weekend. Jon was able to get access to a van with a wheelchair lift from work but we needed a wheelchair. Kevin was upset, maybe having some pain because he was due for some medication, and probably feeling a little scared not knowing what to expect when we were doing transfers and this made me feel awful and this mama was tired, stressed, and needed a time out. I sent an update to my Monday night group and one of my friends said her (young adult) son, Nick was willing to help us with transfers and that he has experience. God is Good, God Provides! The day wore Kevin out too because he took a nap for about an hour and fell asleep again after dinner for an hour. I figured he needed some extra rest...but then it backfired when he had trouble getting to sleep for the night and when he got his medication at 3:00am he couldn't go back to sleep. I ended up letting him watch the Polar Express movie and he eventually slept, but it was a restless night.

Fortunately, we not only had access to Jon's work van but also to the wheelchair his Dad used. We were able to make the wheelchair work for Kevin and now we had a way to get Kevin home. I said both of Kevin's Grandpa's came through for him...because it was Grandpa H's wheelchair and Pap G. got it lubed up and working well. Our new best friend, Nick was able to meet us when we arrived home to help transfer Kevin into the house. I instantly trusted Nick and he and Jon worked well together to get Kevin transferred and it all went very smoothly. Nick even stayed to help Jon get Kevin's bed downstairs to the office since we weren't getting the hospital bed in time. We set Kevin up on the front porch for the remainder of the afternoon. The weather was perfect and we enjoyed a very relaxing day home from the hospital on the porch...some wine may have been involved for us adults. We had a little extra drama as we put Kevin to bed because he had an upset stomach, but afterwards he slept well his first night home in his own bed in his new downstairs office/bedroom.

I am so thankful that we didn't need to stay in the hospital until the home health care company reopened on Monday and we are able to make due without their wheelchair and bed that were ordered for us but I was still in need of a bedside commode. Kevin doesn't fit into the bathroom to administer his enema and we would need extra room to find a way to prop his legs up while he was on the toilet. I posted on Facebook that we were in need a bedside commode and one of our old friends from Kevin's early program days was able to provide for us. She was even able to drop it off soon after we arrived home. But when we assembled it, it didn't have a slide out bucket, which was the kind we used in the hospital. Having the slide out bucket from behind enabled me to take the bucket out to clean him up before lifting him off the seat. On Monday, I spent hours calling and recalling more than a dozen places and waiting for the home health care company to return the two messages I had left asking if they carried this type of bedside commode. My parents eventually went to the business but they didn't have the kind we needed and no one did. I was very confused why no one offered it when it was the kind we used in the hospital and I was feeling very frustrated and frazzled after spending hours on the phone calling over a dozen different places. I even had friends out checking stores and thrift stores for me. When I gave up defeated, I soon realized Kevin's left leg was swollen and I never gave him lunch...making me feel awful (even though he was fine)...but I was upset how much time I had spent on it and felt like I was neglecting Kevin's care. After Jon got home from work, he helped me with the enema process on the bedside commode we were given and he did the extra lifting so I could clean Kevin up. So the first day, had some extra challenges on top of figuring out our new routine. There's still a lot of thinking and planning and moving stuff around to make room before transferring Kevin. It will get easier. God will continue to provide for us the help we need to get through each and every day...and sometimes that includes a little wine at the end of the day. I am so grateful that my parents are here with me to get me through these first couple days and the friends that have offered to help me at home once they leave.

Friday, June 23, 2017

Day After Surgery - Friday

Last night, Kevin slept pretty well between the nurse checks. My Mom and I got a little sleep too on our pull out recliner beds in Kevin's room. He seemed comfortable enough with the epidural that we were able to skip some of the oral pain medication. The only oral medication he has had today is the Valium and a little Tylenol. Early tomorrow morning they are going to stop the epidural and see what his tolerance is with oral medication only.

The doctor stopped in first thing this morning and he said everything looked good. We've had a busy day of medical workers in and out of the room today.  Occupational therapy fitted him for a wheelchair. We practiced transferring him a few times today. He sat in the wheelchair and portable toilet seat for an enema during the transfers. Kevin's appetite has been pretty good today and he's gotten to watch a couple of his favorite movies which put a smile on his face. The hospital is aware of Kevin's many food allergies and I prepared ahead of time and brought all of his home cooked food with us. This morning he got a tray for breakfast with two strips of bacon and an orange juice...really!? I think Jon ate the bacon :)

Kevin chose the color orange for his casts. Last night we tried to hide them under the covers because he kept grabbing my hand and putting them on the casts...saying with his eyes., Do something!  The widest part at his feet is 37 inches apart. Jon measured the doorways in our house are 33inches. His feet just fit on a single twin bed. This isn't going to be easy. The cast length is 27 inches, from his toes to the top of his thighs. He has enough room to wear a diaper.

Kevin is getting very good care by his nurse's. They are diligently checking the slight swelling in his left leg. If his leg would swell any more they would have to split the cast. We also need to shift him to prevent pressure sores while wearing the casts for 4 weeks.

Thank you for surrounding us with your love and prayers. All will be well.

I was trying to add a photo of Kevin but I can't do it from the iPad so I'll do it later.

Out of Surgery & Resting - Thursday night

The surgeon came out to talk with us just before 6:00pm. He said he is really happy with the results. He also said "the dangerous scary part is done, but I'm not saying the hard part is done." We got to see Kevin shortly after and it was rough. The look in his eyes was heartbreaking. He was agitated, moaning, and grabbing. I thought we might have to restrain his right arm. He received pain medication on top of the epidural and he was still very agitated. After a couple hours, we gave him some applesauce that he seemed to calm down. He wanted more so I gave him some chicken with stock, coconut oil, avocado and some sweet potatoes. He gobbled it up and even started feeding himself. After that he started making some content sounds..which made this mama (and the rest of the family) take a big sigh of relief.

My Mom and I are having a sleep over with Kevin. He is resting and was finally able to close his eyes after 10pm. He's getting some sleep (and snoring on his back) between nurse checks. To keep the swelling down, his legs are elevated and icing the incision. He is also getting Valium to help with leg spasms.

Start guessing what color Kevin chose for his casts. I'll try to add pictures next post.

Prayer of Thankfulness for keeping Kevin safe during surgery and continued prayers for Kevin's healing and to find comfort.

Thursday, June 22, 2017

In Surgery Thursday 2:30pm

We were scheduled to arrive at the hospital at noon. I was with Kevin as he fell asleep to the anesthesia at about 2:30pm. They put in an epidural first and then the surgeon began the hip surgery at 3:30pm. The doctor said his part will take 2 hours and 45 minutes. So we are planning on about 4 hours with epidural and waking up afterwards. They will leave the epidural in while we are in the hospital. So the doctor said he'd try to keep us here until Sunday so we have the epidural as long as possible before coming home to help with Kevin's pain.  Please continue to keep Kevin, surgeon, and medical staff in your prayers. Thank You!

Yesterday, was the first day of summer and Kevin's last day of freedom for a little while. I've been encouraging Kevin to play in the basement and outside on the porch as much as possible. These last couple weeks we have been blessed to fill our days with lots of sunshine and porch time. We are so grateful to a couple friends who invited us to swim in their pool...which is Kevin's favorite summertime activity! And we met his cousin at our favorite all-accessible playground.

Yesterday, we started our day with Grandma and went to the theater to see the movie Trolls. It was a perfect start to our day with that positive and happy movie and music. We got a bite to eat with Grandma afterwards and then she read some books to Kevin while I ran a few errands. A little later Grandee & Pap arrived and Kevin said LOVE on his Talker!!! We went to our favorite vineyard for a lovely meal outside and beautiful evening.

Since we didn't need to leave the house until 11:00am this morning, Kevin got to snuggle in bed with Grandee and Pap after I grabbed a few snuggles myself. He also got a nice long bath! As we left the house I didn't have the heart to announce we were on our way to the hospital but Kevin knew something was up. We had read the book I made him about going to the hospital for surgery. He was not making his happy sounds as we got on the highway, like he normally does. And when we arrived at the hospital it was easy to tell he remembered being here in January for his foot surgery. He didn't sit down in the waiting area until after waiting an hour. He wanted to stand near the exit door while watching the water fountain and xylophone player below in the lobby. We can't believe he didn't try to run out the doors. Walking back to the room was emotional for Kevin and consequently me. But things moved pretty quickly and there was not any waiting between all the doctors and nurses getting their information. We were able to wait to put the wrist bracelet on him until after his "relaxer" medicine because he was very agitated by it last time. Kevin had his spoon to calm himself and I was really impressed he didn't drop it once. So grateful for my parents being with Jon and I today. .

I'll try my best to update when he's out of surgery.

Wednesday, June 21, 2017

Hip Surgery on June 22, 2017

Thursday (tomorrow), Kevin is having surgery on his left hip. We'll be in the hospital overnight and I've got his food and any other necessities prepared. We've been lucky, our last overnight in a hospital was Kevin's first year of life...before he was eating food. The hip surgery requires him to be in a spica cast for 4 weeks - both legs will be casted with a bar between to keep the hip immobilized and non-weight bearing until 6 weeks after surgery. At that point Kevin will begin intensive all day therapy (M-F 8-4) for about 3 months. This will ensure that the foot surgery in January and the hip surgery in June benefits him the most. There will be intense retraining needed for his walking and brain.

Kevin's hip is not currently causing him any pain (that we know of) and it is not totally dislocated but it does not sit in the joint properly. We've been told by several doctors the importance of intervening prior to dislocation as it is much harder to maintain the hip once it has already dislocated. We were also told that pain and arthritis would be sure to set in if it's not corrected. We also hope that by de-rotating the left hip, we can correct some of the in-toeing as he walks. This procedure will likely leave his short leg even shorter.

I'm feeling more prepared and calmer going into this hip surgery after experiencing the January foot surgery. Kevin was fortunate to come home from the January surgery with a nerve block and no oral medication was needed for pain. This surgery will be different and he will have pain so I am concerned about that but I know there is nothing more I can do. My other concern is being prepared at the house for lifting and transferring him with the spica cast. I can't imagine lifting him in this awkward position, especially now that he gained ten pounds after the last surgery...but God will provide...He always does.

Thank you for your prayers for Kevin's surgery, doctor, nurses and hospital staff, and for Kevin to find some form of comfort during his recovery time.

I found a description of the surgery that I copied below from Surgery Encyclopedia.

Hip osteotomy


A hip osteotomy is a surgical procedure in which the bones of the hip joint are cut, reoriented, and fixed in a new position. Healthy cartilage is placed in the weight-bearing area of the joint, followed by reconstruction of the joint in a more normal position.


To understand hip surgery, it is helpful to have a brief description of the structure of the human hip. The femur, or thigh bone, is connected to the knee at its lower end and forms part of the hip joint at its upper end. The femur ends in a ball-shaped piece of bone called the femoral head. The short, slanted segment of the femur that lies between the femoral head and the long vertical femoral shaft is called the neck of the femur. In a normal hip, the femoral head fits snugly into a socket called the acetabulum. The hip joint thus consists of two parts, the pelvic socket or acetabulum, and the femoral head.
The hip is susceptible to damage from a number of diseases and disorders, including arthritis, traumatic injury, avascular necrosis, cerebral palsy, or Legg-Calve-Perthes (LCP) disease in young patients. The hip socket may be too shallow, too large, or too small, or the femoral head may lose its proper round contour. Problems related to the shape of the bones in the hip joint are usually referred to as hip dysplasia. Hip replacement surgery is often the preferred treatment for disorders of the hip in older patients. Adolescents and young adults, however, are rarely considered for this type of surgery due to their active lifestyle; they have few good options for alleviating their pain and improving joint function if they are stricken by a hip disorder. Osteotomies are performed in these patients, using the patient's own tissue in order to restore joint function in the hip and eliminate pain. An osteotomy corrects a hip deformity by cutting and repositioning the bone, most commonly in patients with misalignment of certain joints or mild osteoarthritis. The procedure is also useful for people with osteoarthritis in only one hip who are too young for a total joint replacement.


A hip osteotomy is performed under general anesthesia. Once the patient has been anesthetized, the surgeon makes an incision to expose the hip joint. The surgeon then proceeds to cut away portions of damaged bone and tissue to change the way they fit together in the hip joint. This part of the procedure may involve removing bone from the femoral head or from the acetabulum, allowing the bone to be moved slightly within the joint. By changing the position of these bones, the surgeon tries to shift the brunt of the patient's weight from damaged joint surfaces to healthier cartilage. He or she then inserts a metal plate or pin to keep the bone in its new place and closes the incision.
There are different hip osteotomy procedures, depending on the type of bone correction required. Two common procedures are:
  • Varus rotational osteotomy (VRO), also called a varus derotational osteotomy (VDO). In some patients, the femoral neck is too straight and is not angled far enough toward the acetabulum. This condition is called femoral neck valgus or just plain valgus. The VRO procedure corrects the shape of the femoral neck. In other patients, the femoral neck is not straight enough, in which case the condition is referred to as a femoral neck varus.
  • Pelvic osteotomy. Many hip disorders are caused by a deformed acetabulum that cannot accommodate the femoral head. In this procedure, the surgeon redirects the acetabular cartilage or augments a deficient acetabulum with bone taken from outside the joint.


Immediately following a hip osteotomy, patients are taken to the recovery room where they are kept for one to two hours. The patient's blood pressure, circulation, respiration, temperature, and wound drainage are carefully monitored. Antibiotics and fluids are given through the IV line that was placed in the arm vein during surgery. After a few days the IV is disconnected; if antibiotics are still needed, they are given by mouth for a few more days. If the patient feels some discomfort, pain medication is given every three to four hours as needed.
Patients usually remain in the hospital for several days after a hip osteotomy. Most VRO patients also require a body cast that includes the legs, which is known as a spica cast. Because of the extent of the surgery that must be done and healing that must occur to restore the pelvis to full strength, the patient's hip may be kept from bearing the full weight of the upper body for about eight to 10 weeks. A second operation may be performed after the patient's pelvis has healed to remove some of the hardware that the surgeon had inserted. Full recovery following an osteotomy usually takes longer than with a total hip replacement; it may be about four to six months before the patient can walk without assistive devices.


Although complications following hip osteotomy are rare, there is a small chance of infection or blood clot formation. There is also a very low risk of the bone not healing properly, surgical damage to a nerve or artery, or poor skin healing.

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Outer Banks May 27 - June 3

Our vacation to the Outer Banks with the G family, Memorial week. It was our first time to the Outer Banks and we are all in love with it...minus the mosquitoes. This was Kevin's best vacation yet - lots of laughter and smiles!

Jon and I had questioned if we should get a beach wheelchair for Kevin. Boy, are we so glad we did! Our house was on the beach but we had a couple sand dunes to cross over to get to the ocean and that would have been a long haul if we were carrying Kevin...which would have drastically limited Kevin's trips down to the beach. Fortunately we did rent a wheelchair and he was more than happy being pushed down to the ocean. Although there was one time he wasn't happy going down to the beach. It was the first night we had a campfire on the beach with the family. We've never taken Kevin down to the beach at night so it was a new experience and it wasn't part of the vacation after dinner routine - LOL. There were tears and he was not happy even with everyone there and his snack. But he eventually calmed down enough to sit with me and the smiles came back and he enjoyed himself. Our last night of vacation, we had another fire on the beach and he was good to go - which gave us some good family pictures on the beach.

Kevin loved swimming in the heated pool! He spent HOURS in it. Kevin was able to touch the bottom of the pool so he was very independent while he was swimming. One day we were having our lunch by the pool and I couldn't get him to get out to eat. Finally when I insisted that he get out of the pool and eat he VERY SLOWLY made his way out of the pool. LOL! I loved having that typical kid moment.

My favorite moment during vacation was when Pap organized a game night with the LCR (Left Center Right) dice game. He said it was a game that everyone in the family could play - and he was right! Kevin had so much fun rolling the dice! He was laughing and smiling the entire time! I love those smiles!

I am so thankful that we had this opportunity to have a big family beach vacation...after Kevin's January foot surgery with enough recovery time to be back on his feet and walking...and two and half weeks before his hip surgery. So I feel like we got to experience some summer fun.

We made it!
Loves the ocean water
Love this big table to comfortably fit all 14 of us
Dad's birthday balloon
Rockin' it with Pap
Beach Boys
Watering can
Not happy on the beach at night
Ok, maybe this isn't so bad
Ok, now I'm happy again
Kayaking on the Sound
Uncle Steve kayaking with his "lean to the right" partner
LCR dice game
I LOVE this PROUD look on Kevin's face
as he's getting ready to roll the dice!
LCR Giggles with Carrie
More LCR Laughs
LCR Smiles with Emma
Swimming with Dad
T-Shirt Souvenir's
I like morning snuggles on the deck. 
Taking a ride on the beach with Grandee and Aunt's
He could do this for hours
Kevin and Grandee
The ocean was still a little chilly.
Making sure he doesn't roll away
Dad went fishing and caught a big fish
G Family
Last night on the beach
Uncle Steve sharing the wheelchair
Imagine Beach House
Cape Hatteras Lighthouse