One Very Long Day

Today brought me back to the day this journey started down in Kentucky on June 29th, 2015.  That was the first day in all of his then 8 years that Mason had truly experienced pain.  The ambulance was loud with screams and crying and the ride felt like 2 days instead of 20 minutes.  As I closed my eyes today in the PACU to hold back my own tears, I listened to Mason moaning and crying out in pain and it was like an instant connection in my brain to that hot, rainy Kentucky day.  I didn’t have Matt to take over so I could step away and compose myself (aka cry like a baby) because they would only allow one of us with him.  I had to bite my lip and be strong.  I realized today that as hard as this journey has been, there have been few days where he was in unbearable pain.  There have definitely been moments along the way when he has been in pain – like when they literally had to rip out his infected Hickman catheter or when we had to do physical therapy, or recover from numerous other surgeries – but none of these compared to today.  He didn’t smile when the nurse said, “Your mom is here now!”  He was terrified from the pain and tried to utter, “My hip hurts.” through his mask and dry throat. After 4 hours of minute by minute pain management and multiple times sedating him with meds to help him get through, he was finally stable enough to come to his room.  Up until the very last minute, the plan was for him to come to the PICU because of his need for constant sedation.  But, his pain was finally controlled enough to come back to the Peds Unit where he is comfortable and the nurses know him and care for him well.  We are all relieved that we escaped the need for the PICU as we are all more comfortable in our regular home away from home and we hope to be able to get more sleep than we would have in the PICU.  Plus, we are in the very best room and have a beautiful view of the city for what we hope and pray is our last time here for a while.

Mason is sleeping comfortably now and I hope to go to bed very soon.  This day feels like it started about a week ago.  He still has his two buttons he can push when he needs pain meds.  He hasn’t eaten anything other than 2 popsicles all day which is not typical for him on a surgery day.  But, he’s being monitored with every machine imaginable, so I feel confident he is in good hands and I can actually close my eyes tonight and not worry (too much).  Both surgeons feel like surgery was a complete success.  The femur margins came back clear in preliminary pathology and Dr. Rosenthal then cut one more time just to be completely sure he got it all.  The top of Mason’s femur is headed to 4 places in 3 different states very soon – Miami to Dr. Rosenberg, New York to Dr. Meyers, KU lab, and KU biospecimen research lab.  They were able to put an adult prosthetic in – bigger than what they had previously measured.  This is wonderful news because it means the need for future surgeries will be less.  Instead of 2 more surgeries until he is fully grown, he will likely only need one more surgery.  His right leg is currently 1.2 cm longer than his left leg to buy more time as well.  And, the crazy part about all of  it is that both surgeons said he can immediately start bearing 25% of his weight.  He has been non weight bearing for so long that it will be hard to retrain his leg to do a little work, but this is overall great news to get him back to walking again sooner.  And, he now has the best show and tell ever to start school with.  They actually gave him the plate and screws they took out of his tibia.  And, they are not at all what I envisioned.  He thinks it’s pretty cool and couldn’t wait to show his dad, Alli, and the nurses.  It just looks like something you would buy at Lowe’s and it was supposed to be in his body for the rest of his life.

Another fun fact we learned today is that Dr. Rosenthal also  knows Dr. Meyers in New York and has confidence in his ability to get us on the right path.  Both he and Dr. Tilley feel like Mason will easily be New York ready in 2 weeks.  We have our appointment set for August 15 and are still working out flight and lodging details.

….Ok…two hours later I am coming back to finish.  Now we are having what appears to be muscle spasms along the incision and major discomfort in his stomach.  Labs were drawn to rule out pancreatitis and they’ve started him on Valium.  It could be a long night. If any of the above doesn’t make sense, give me grace and do your best to connect the dots. I’m beat!

Pray for comfort and quiet so we can get some rest.  Praise God this day is almost done and an overall success!

 

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3 thoughts on “One Very Long Day

  1. All sound’s like great news (except the pain part) and I’m sure the pain will lessen even more as time goes on especially after the third day as they say. Keep being brave & courageous! Mason you are the toughest boy I know! If there was an Olympic event this summer for endurance, your family would win the gold!! Continued prayers for healing & comfort in the days ahead.

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  2. I have been continually following and praying for all of you. I wish I still lived in NYC so that I could help you there. Please let me know if I can be of any help with any planning or anything at all. – Jill Hemann

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