Perseverance Wins the Race
Christopher is our rock star with faith and perseverance; he will win this Perthes race. We returned from Baltimore on February 28th and our real journey began. This is by far the hardest thing we have ever done in our lifetime. We have one month under our belt for Christopher to be non-weight bearing. We have two more months to go. I keep saying ‘let’s just make it through the summer’. It’s hard to watch your strong, fun loving child struggle to get to one place or the other. He has to hop on the good leg with a walker to move anywhere or be transferred to the wheelchair. I’m happy to report that our transfer to the car and shower skills have improved but it still scares me.
Christopher stated on Monday that he would never ever, ever, ever do this surgery again. It would be easier without the broken hip but that wasn’t his journey. We took x-rays and are still awaiting the results from Dr. Standard. He is still sitting at 60 degrees. We have struggled with getting his pain medications refilled. Evidently, you cannot cross state lines with a schedule 2 drug in the state of Texas. You are required to have a state physician write the prescription on a special Rx pad. It has been frustrating beyond reason to see our child hurt and know if we had the right medication it wouldn’t be this way. Our pediatrician finally wrote a temporary prescription but it was only a two-week supply.
Night time is not the right time
Christopher has very rough nights even before he settles into the constant passive motion machine. It seems like the muscle spasms are worse then but lately he started to get jolts of pain down his leg. That is new but we know it’s to be expected. The strangest part is when his 12″ scar starts to burn. That’s when the real fun begins.
Christopher was discharged after nine days in the hospital. It felt like we were barely there but we were on Sinai time. Our nights were days and the days nights. The nursing staff is top-notch. They took really good care of our boy. Every day in the hospital, felt like ‘ground hogs’ day. Every morning around 6am, Christopher become nauseated and would need anti-nauseous medication. We would place a wet, cold wash cloth on his forehead and then he would go to sleep. We still ordered breakfast but he never ate until later in the afternoon. Until the last day, he finally didn’t feel nauseous and was able to eat breakfast. He finally passed the physical therapy test. He was ortho static the day before and passed out three times. It was very scary.
We arrived at the Hackerman Patz House around 6pm on Friday, February 22, 2013. A family friend brought us dinner and took me to CVS Pharmacy to pick-up a few things. I learned in the hospital that taking medications with milk can stop the nauseous cycle. Christopher drank the milk with his meds and he may never want to drink chocolate milk again in his life. Shortly afterwards, around 11pm, he vomited over all himself and the brace so we quickly tested our transferring to the shower skills. It scared us to move him to the shower but we had no choice. I’m so thankful for the washing machine and dryer at the HP house, dawn liquid and a hair dryer. Who knew you can clean a brace with removable velcro padding and dry it so quickly. After the first night, every day was a little easier. The first trip to Physical Therapy was exciting because motion made Christopher nauseous. Every day, we would test the waters. It was one step closer to getting home.
If you cannot sit at 90 degrees and must be reclined to 60 degrees, you can accomplish this in a commercial coach sitting. However, first class on United reclines to 60 degrees. We came close to switching our tickets but we wanted to be together. We had Christopher sit with his bum very close to the edge of the seat and he leaned on Michael the entire flight. We had to give him more pain meds because it really hurt. He kept saying his bum hurt and then we figured out it was the hip. We made it home to a joyous reunion with his little brother. He was laughing and crying at the same time. It was the longest we have ever been away from him. He still hasn’t left our side.
Thankful Beyond Words
I would like to thank a few people that made our journey easier:
Troop 557 – thank you for the goodie basket and the rock so Christopher could take a part of you on this journey. He carried that rock with him the entire time. Thanks for the love and support.
The Rogers family and friends – thank you for coordinating the goodie basket from home for Christopher. Christopher loved the homemade Valentine cards, goodies and games. Your prayers cards for us during surgery really helped me stay calm. Thank you for everything!
The Foote family – thanks for meeting us for dinner, visiting in the hospital and being our sounding board along this journey. Without you, we would have never found Dr. Standard. Thanks for all of the love and laughter!
The Garman family thanks for making our days brighter. Thank you so much for dinner (two nights in a row) and the great escape to the grocery store. You made one of our darkness days seem brighter. We will be forever grateful.
The Smith family – it was so great to finally meet you. We hope that your perthes journey turns out far better than ours. Thanks for the love and prayers over the years.
The Miles family – it was so great to meet you and to hear Dylan’s inspiring story. It was also great to meet someone with my love of flip flops. 🙂
The Davis family (including Nicole) – you are our rock and family. We can always count on you and we are always excited to see everyone. It was great to see ‘my girl’ again. Thank you for all of the necessities that helped make the HP house more like home. Love you to the moon and back.
The Barzilla family – thank you so much for visiting and praying over Christopher before we left and building the handicap ramp. Without that, Christopher would be home bound. Your faith and generosity is unparallelled. You are a true inspiration to Christopher and us.
My Iatric Systems family – thank you for all of the kind words, support and love during this journey.
Mrs. Schusterman’s Student Council – thank you so much for the cards and calling him before we left. We couldn’t remove the smile from his face that day. 🙂
Mrs. Harrah’s Art class – thank you for the get well cards that were so cool. I have no idea how you managed to write the homemade cards that were only viewable with a mirror. Christopher loved it!
My Perthes family – thank you for all of the support and being our sounding board along the way. I don’t know what I would do without you. Thank you Alice, Kristen, Sandi and Gigi for all of the advice and preparing us for the surgery.
My dear Mother – thank you, thank you, thank you! Without you, I would have never made it. Thank you for everything. I will never be able to repay you but I’m sure going to try. Love you!!!