Saturday and Sunday I allowed myself the grace to be lazy and try and catch up on some much needed relaxation and sleep! All was going according to schedule until Alex started to feel bad! Sunday morning just as we were leaving for church, Alex mentioned he didn't feel great and asked for an extra dose of Hydrocortisone. That is not uncommon so I didn't think anything of it. Around 2:00 he asked for extra hydrocortisone again. At 6:00 he told me he was pretty sure he had a fever. Sure enough his temp was 102.2 so we headed to the hospital. Alex always causes a sepsis alert to be called when we arrive at the ER which brings a slew of medical people into our room. He stabilized pretty quickly and we were able to get up to a room on our favorite floor. Unfortunately the flurry of activity didn't slow down until 4 Am. (So much for my much needed sleep)!
By Monday Alex's temperature was gone. I ran home to get him something we had forgotten in our rush to get to the hospital the night before. When I got back, Alex was hunched over in pain with tears running down his face. Alex hides his pain ALWAYS so I knew he was really hurting. He was sure based on pain level and location that it was his pancreas. We scrambled to get him a dose of pain meds and he slept for a few hours. When he woke up his pain level was MUCH better.
Tuesday morning we decided with our doctors that if labs looked okay we could go home because he had been fever free for over 24 hours and his blood cultures had all been negative for 36+ hours. When the doctor came in a few hours later with a devastated look on her face, I was not happy. Luckily, blood cultures were still negative. However, Alex's blood counts had dropped almost 3 points in 2 days, his pancreas labs had bumped a little and his inflammation marker was up quite a bit. After more discussion, I reassured her that this used to be Alex's pattern. Those of you who have followed us for a long time will remember that we used to go into the hospital every 4-6 weeks with a high fever. We often wouldn't find a cause and frequently needed blood transfusions. We agreed that we would test his ostomy output and if there was no blood we could still go home as long as I promised to bring him back at the slightest sign something was off. So we made it home late Tuesday night.
|Always the diva|
|Not bad for being in the hospital|
|Our favorite visitor|
Alex has seemed fine since then. His labs Thursday looked a tad better. I am hoping that this is not the start of the old pattern. I am working with his doctors on what we need to tweak to try and keep him out of the hospital as much as possible.
We had a quiet day on the 4th as we tried once again to settle into home and relax a bit. Thursday, Alex had a unique opportunity to film a promotional video for Children's Miracle Network and a corporate sponsor. He continues to amaze with his poise and confidence in front of the camera and important people.
At each setback with Alex, I am reminded of the incredible village we have around us. Not only the doctors and nurses and hospital "friends" who are so amazing in caring for Alex physically and all of us emotionally, but also the friends who are always willing to step up and help make sure Maddy is loved on and having fun while I am with Alex. It means so much more then I could ever say to know that both of my children are cared for and loved regardless of where I need to be.
|Maddy thinks Mrs. Mitchell is her BFF|
This week is a busy one with appointments for both kids and another dance camp for Maddy Moo. Please keep us in your prayers as we try and stay healthy!