Jo remains at children's still experiencing periodic sustained periods of pain from an unknown source. This Monday will be 2 weeks of tests, countless discussions, and best guesses as to what is going on, it is beyond frustrating and amazingly difficult to come to terms with.
Basically Jo had a pump implanted to alleviate muscle tone issues he has experienced since the injury. "Tone" looks alot like a muscle spasm and for Jo it always effected his right side most. It was very common to see Jo's right leg fully extended and his right arm pulled tightly to his chest. The pump delivered a low dose of medicine directly to his spinal chord providing simple relief for the conditions I just described. The scary part is what to do when something goes wrong, it basically REQUIRES a visit to the ER. Another series of tests to make sure everything is ok with the pump first, and then an evaluation of what the real problem might be. In this case Jo's pain was very severe and we didn't feel comfortable with a discharge until we knew what was causing such severe pain. When we brought Jo in he was completely spasmed and in a great deal of pain. His only relief for several days was pain meds while we tried to figure out what was wrong. Having come full circle we may never know what exactly was the source, we do know what it ISN'T. Nothing wrong with the pump, no infection, no issues with his most recent MRI, and no gut issues after multiple ultra sounds. Since his pain has begun to resolve, this is all great news, and while we would love to know exactly what the cause was we are happy he is no longer in pain.
In addition to helping Jo manage his pain we also wanted to address his regression with physical abilities to his LEFT side. While the pump did relieve stressful and painful spasms on his right, Jo took a huge step back with his strength on his left side. At the beginning of the year his left hand was active and strong, his head turns were quick and steady, and his cognition and participation were amazing. Post pump almost everything faded.
As of this morning Jo is doing much better each day and his pain is definitely fading. Once we get our arms around the cause, or our best guess, manage his meds, and his pain is alleviated we will be taking Jo home. We are confident that will be early next week.
We had a care coordination meeting with the entire team at Children's yesterday in an effort to get our arms around all of the issues. As usual the team was great and covered all of our concerns. Over the next few days we will be monitoring Jo as we run a few more trials. Jo is definitely on the road to recovery and we can't wait to get him back home!
Jojobinks we love you and are so proud of your strength. We are very happy to see you feeling better and getting your smile back, you are amazing! We know you are anxious to come home, and we can't wait either. Rest and heal and don't worry! We love you to the moon and back sweet angel, YOU'VE GOT THIS!
Very quick update:
Jo has had a tough few days dealing with discomfort and severe muacle spasms. They culminated with 2 trips to the ER within 24 hours including an appointment with the rehab clinic.
It is difficult to describe just how much pain Jo was in yesterday almost the entire 14 hours at the hospital. Prior to the decision to admit him for further observation he would be screaming in pain and completely spasmed on his right and left side. Mom and dad have not seen him like that ever before. It was horrible.
They have run too many tests to cover in a short blog post. Everything has come back negative. He still is experiencing periodic pain but the pain medication has has definitely helped keep him confortable. He rested well overnight.
So, Jo is back at the Children's unit, he is a rock star and all his favorite nurses are giving him the best care. We are very happy knowing he is getting amazing care, and we are confident we will figure out what's going on.
It is unlikely he will be discharged until late tomorrow at best. Asking for your thoughts and prayers as we get this sorted out. We love you all!
Jojobinks, we are here and dont worry! Stay strong and we will figure this out! We love you to the moon and back sweet angel, YOU'VE GOT THIS!