Bye-Bye, Epidural – So, for the first 3 days post-surgery Elijah’s pain had been fairly manageable, although he was vomiting quite consistently. Today, however, that would all change because the “big boy” epidural was coming out and shortly after his catheter. Obviously, they wean him off the epidural slowly to allow his body to adjust, but what an adjustment. He managed fairly well until about early evening. That is when his pain kicked into overdrive. For the first time he was really feeling the effects of the surgery. It wasn’t pretty. Lots and lots and lots of tears from both of us. Of course, it hit at a time when Shayne had stepped out to get something, so it was the nurse and I desperately trying to calm him down, ease his fear, and distract him from the pain. Hoping I don’t ever have to experience that again with him…..ever. The nurse flushed some meds through his IV to help and eventually he drifted to sleep. Hard to watch, especially since the day before the nurses were all calling him the cruise director of the children’s wing as he socialized and visited with many other kids. Sounds like Elijah, right? The boy never stops talking. He has lots to say, and I love hearing his voice. The medical team was hopeful that if he got a good night’s rest and had no other pain hiccups that he would be released the following day.
The Tiger Breaks Free! – When Elijah awoke he was whooped from the painful episode the night before. He was dying to sleep longer, but PT came in to get him moving. After throwing up twice he managed to get in a good walk with his walker. He then returned to bed and slept for 4 more hours. Due to his nausea he had not had an appetite at all. This was a bit concerning to the nurse and they discussed keeping him longer, but the doctors felt like he had done so well that if we were comfortable taking him that we could go. Was I comfortable? Um….NO, but did I know that the Lord would provide Elijah the strength and us the understanding…..absolutely! So, we packed up his very colorful Tigers, Stix, Buckeyes, & Mosaic room and loaded him up in the wheelchair and prepared to bust the Tiger out of his cage! As we walked over to the HP House my mind was flooded with emotions. We had planned to go on a family vacation this July and instead we’re wheeling our boy out of a hospital as he faces a very tough disease. Not my happiest moment, but God is still good….ALL the time. I tried not to question why, but instead asked the Lord for the how…..how can you use this for your glory? He reminded me that he already has worked it for good. One of the staff members who came in daily to clean Elijah’s room was named Barbara. We took such an interest in her and her story. She’s a single mom who had her daughter prematurely. She weighed 1.4 lbs when she was born, and she’s worked at the hospital for 8 years. We got to love on her, encourage her in her faith, and pray with her. It was so special. God does know what He’s doing, doesn’t He? And, we were off……
Hello, HP House – Directly next to the hospital is the Hackerman-Patz House, which is a home where families can stay for a bit more affordably than the price of a hotel, but with the convenience of traveling back and forth to the hospital for physical therapy. It’s such a special place as you get to meet families from all over the globe who are facing similar health challenges. Getting Elijah in a car is going to be quite a daunting task at first, and this allows us to wheel him back and forth to the hospital.
Time to #tackleperthes – Ok, so day 1 with Team Walters went like this…..
Elijah had PT at 9:00 am and it was a beast getting him there for it. He is still very nauseated, especially in the mornings and it takes what seems like forever to get him to stop vomiting or feeling like he’s going to faint. We plugged along and got him there with several minutes to spare. Score! This was definitely 1 of his toughest hours so far. His therapist pushed him big time and encouraged him to fight through the pain. The moans and tears were plentiful. I was sad for him, because I wanted it to be me not my boy suffering through this ordeal, but I was overwhelmingly proud of how far he was willing to take his pain threshold. PT wiped Elijah out physically and emotionally and he took about a 4 hour nap. We totally let him because we knew what was ahead…..pin care and showering for the first time since surgery.
We thought it would be best to get him showered closer to bedtime, so it would help him rest. We knew this was gonna kick our butts, but I don’t think we realized just how much. Helping him shower will become a daily ritual because it is also how we will clean the 6 pins holding his hip and leg in place and do our best to keep him from getting a pin infection. So, getting a 10 year old 80 lbs. boy who cannot walk and has 6-8 lbs. of hardware sticking out of his leg is quite the challenge. So, instead of a shower for 1 it turned into a shower for 3. Shayne and I were just lucky enough to remain clothed. I held Elijah under his arms from the back while he held onto the shower bar and Shayne began taking off all the gauze and bandages on his pins. HOLY. HOLY. HOLY. This was the first time we really got up close and personal with his pins. I began to tear up, but Shayne gave me the dreaded “don’t you dare or this whole shower operation might fall apart” look. I sucked it up and Elijah who was obviously in a delicate state soaked up the water. I could see the healing waters flow on him, around him, through him. I could sense that for a moment he felt like he was…..Elijah. We finally got all his pin pads replaced and got him tucked into bed.
Our conversations here are not much different than our chats at home as it pertains to setting goals and making strides. We ask that each day he makes a gain, has a victory, improves on something. You know how much we love sports in our family, especially football, so we decided to start listing all the “downs” he/we get. Today’s were quite significant for all of us. We ask that you celebrate the little victories with us, continue to pray that Elijah tackles Perthes like a Tiger, and cheer him on all the way to the finish line. He is a champ.
Monday’s yardage gains:
1st down – Elijah’s first full time physical therapy session post-hospital completed! He was fierce.
2nd down – Elijah was able to stand over the toilet and you know…pee. Might sound like a simple task, but I can assure you it is not!
3rd down – Team Walters pin care complete for the first time!
4th down – Elijah’s first shower post-surgery complete! Boo-yah! Felt like we won the Super Bowl!
Thank you friends and family for your infinite love and support. Here in Baltimore doing our best……
One proud Tiger momma,