Saturday, July 18, 2009

My Baby

Our overnight stay at hospital went fine. Gary got his cytoxin and methotrexate. Today he is very tired. He seems stiff and slow moving. The next couple of days he will recover. He fell asleep at about 330 then was up again at 730. He was up for about twenty cranky miserable minutes, and he is now down for the night. He was very irritated and itchy when he woke up so we gave him benadryl cream and benadryl in his ng tube. He seemed to very swollen around his eyes. They were very blood shot and looked funny. He has been complaining about them in the morning when he wakes up. Gary complained a few times during the examine in Chicago when they pressed under his eye. I had mention this to the doctors and asked if a eye examine would be appropriate at this time. He just had one done 2 months ago. I never got an answer on it. On Monday, I will call and make the appointment myself. The high doses of steroids he is on, as well as the other drugs put him at a higher risk for problems. My poor baby :(


  1. Summer is in full swing, and I am glad that your trip was smooth, even though you might not have received all the answers you were looking for. There will probably never be "the one answer" you want to hear, but you already have the one answer you need. In that, you are never alone. Jesus will always be by your side every step of the way.
    I know you were taken aback a little when Dr Pachman talked about taking care of yourself, well I was not there to hear what was said, but if you are a fan of "the princess bride", there is a line in that movie that comes to mind. "If you have not got your health, you do not have anything" That movie is always good for a laugh or two, and if you have never seen it, I highly recommend it. Remember Prov 17:22 Sorry for the rabbit trail, but my point was, make sure that you do not run yourself ragged and neglect your health too. In reading a statement from Mason on another comment, and knowing my neice with CP, they do not see it as a handicap or disease, it is their life. They adapt and learn to live with it while we have a tendency to feel sorry for them. Yet at times, I feel like they live better than I do. They are a blessing and understand what a blessing is. Keep up the good fight and never feel alone........

  2. sorry, but some day I will figure out this comment thing. I just left a lengthy anonymous reply, and forgot to sign it. Lynn

  3. Erica - It kills me to read your posts and think back but just know that you are on the right track. When we finally got Mason on Cyclosporine he could no longer move anything but his toes and fingers All his major muscles had stopped working. Now he can lift his arms move his legs back and forth etc. He is doing so much better. You are two steps ahead with drugs that are doing great things for newly diagnosed children. You have great doctors. I know none of what I said makes this easy but hang in there and hug the heck out of him. It makes you both feel better. At least it does me!!! Hang in there. - Damon