So, as you know, we came to the grueling decision to bring Elijah back to Baltimore for a very important, urgent, and experimental new surgery our specialist proposed. Due to Elijah’s age we must be pro-active because he has less time to grow than a younger child, which complicates treatment options. So, on Tuesday, Doctor Standard wheeled him back to the operating room w/high hopes as we waited and agonized and waited. During the 7 hours Elijah was in surgery they cleaned out the dead bone in his Perthes hip, took bone and bone marrow from his other good hip 😦 as well as cadaver bone and other juicy meds to create a putty like substance that they carefully crafted and sifted through a straw like utensil and repacked Elijah’s hip. They then expanded and reshaped the outlining of the hip (cartilage) to create a spherical shape hip. They then attached and bolted the external fixator to E’s hip/leg. That was one piece of machinery I hoped to never have had to see again. Sad face. Sad face. Sad face. Elijah is only the 9th child to have ever had this surgery and the uncertainty of that was quite overwhelming. So, when Doc Standard walked out with a hopeful smile to update us we were just relieved that portion of the journey was behind us. Doc conveyed that he was very pleased with the preliminary results of the surgery, but since this surgery is in such uncharted waters that the next several months are extremely critical in setting a solid foundation for E’s hip.
We were quickly taken back to greet Elijah in recovery. He was so still, so restful, so tranquil…..and then he threw up. Once Elijah settled down and his nausea finally subsided we all were then faced with the cruel reality that we have to come face to face with the ex-fix again. We all gave it a respectful and despicable acknowledgment. Never have I loved a piece of equipment so much and despised it at the same time; it is giving Elijah what we can’t…..a fighting chance at running again. We stayed in recovery awhile and were then transported to E’s room. We were generously greeted by all those who remembered us last time we were here. It was bittersweet, because as much as we appreciate how well these medical teams take care of us, we wish desperately not to be here. Elijah was exhausted and we settled in and turned in for the night.
The next morning we awoke to a fairly upbeat Elijah who was still rocking a hard core epidural to keep his pain under control and it was doing just that. Our PT & OT came in to help him get out of bed for the first time and take about 3 steps to his chair. We all held our breath and gritted our teeth as he dug as deep as possible to slowly glide and lift those normally busy and active legs across the floor. He did it. Nothing was gonna stop him. We then got word that there was going to be a special superheroes party in the kids’ playroom sponsored by the Hope For Henry organization with special appearances by superheroes, toys, treats, and more. Our room is closest to the playroom and the party got so crowded so quickly that Elijah was going to have to wait a good long while before even attempting to get out there, especially in his wheelie chair we had him in that is an absurdly large contraption. Our nurse came in to tell us to just hang tight and to tell us that a surprise guest had shown up at the party, Ray Lewis. Now, Ray Lewis in Baltimore is like an Anthony Munoz in Cincinnati. People clamor to meet them. We thought maybe Ray came to the hospital often, but they assured us he does not. Our nurse knew we might miss seeing him because he was in the large party room. Before we knew it he walked into our private room and encouraged Elijah. I was surprised how tender he was with Elijah. He reiterated to Elijah that he began playing football at age 11 and that he has had 9 surgeries and each one had made him stronger. He got down on E’s level and spoke with him, autographed his jersey, shook his hand, and told Elijah that he was his highlight of the day. Something Elijah will hold onto forever. I was grateful that the Lord gave Elijah that moment…..that whisper that only God can give that says, “I told you I’ve got you.” The rest of the day was pretty low key. And then the night began…
At about midnight Elijah’s bowels began doing cartwheels, flips, and splits. I’ve never seen so much pooh and wiped so many buns (well, except for that time when I had 4 babies 🙂 in my life. The staff was a bit puzzled and we began to get a bit concerned. Today was also the day the epidural was going to get turned off and I was a nervous wreck. I’ve had a baby with and without an epidural and I assure you it makes all the pain difference in the world! Because the epidural’s entry point in his back had been compromised by pooh-pooh they wanted to get the epidural out and the area cleaned. Epidural came out. Oral pain meds began. Pooh-pooh continued 24 hours. Oh, and remember Vince Vaughn in Four Christmases, yep, that was Shayne during the whole pooh experience. We got to the point that we were downright delirious. We cope a lot by laughter. This was the perfect stomping ground for hysteria and we needed it. We spent the remainder of the day on doo-doo duty.
This morning Elijah’s pain shifted to his stomach. He became extremely nauseous and began feeling exhausted, dizzy, and faint. He still managed to plow through his PT, although I’m pretty sure he kept pushing because he felt he had a rep to protect. All our nurses comment on how likable, kind, and committed Elijah is to working hard. I think he didn’t want to disappoint them. Once we got him back into bed he had a window of joy as he worked up the energy to face time with his class back home, but once they hung up he crashed and burned big time. I spent lots of time reading to him and just staring at him. We are hoping this passes quickly so we can continue to support and care for him as he continues to #tackleperthes. Not sure what tomorrow holds, but grateful and confident that we know WHO HOLDS OUR TOMORROW.
Thank you to each one of you who continue to cheer and pray our boy to victory, as well as take time to read and journey this with us. When Elijah was diagnosed we found most of our information about Perthes from the amazing blogs of others, which is another reason we share, for those who will come after us. I spoke with a woman recently whose daughter was diagnosed and she told me she checks daily to see if we’ve updated. Just wanting to shed light…and hope even in our struggle.
As I was walking beside Elijah’s bedside when he was being transported to his room in the pediatric unit, a painting on the wall jumped out at me. It said – The pain you’ve been feeling can’t compare to the joy that’s coming. What a day that will be……
Tackling Perthes one play at a time,