Wednesday Night

The battle for this poor little boy gets harder and harder I would not want to see an animal suffer the way this 12 year old boy has suffered. Before the meeting Yesterday Mikeyd pulled the feeding tube out again. At the meeting we had I spoke with Dr Y we got him to agree to leave the feeding tube out for a few days and see how he does he already lost a ton of weight and a few more pounds for a few days could not be much worse. Sure enough The first night without the feeding tube also the first night without throwing everything up might be just a coincidence. He had one good night without the feeding tube and was so happy it was short lived and traded for two leg cast. When Mikeyd was moved from CHOP to CSH he had good range of motion in his ankles PT worked them by day I worked them by hand at night when he was lying in bed so they would not lock up before he left CHOP for some reason which no one can explain to me they decided to put both his legs is cast today all the way up to his knees they bent his ankles back and casted them, the right leg was fine but the cast on the left leg was to tight he laid there in pain for three hours without being able to speak he was able to communicate with me where the pain was I called the nurses and told them what was happening they told me that only the person who put the cast on could help him and that they were in a meeting after watching him in pain for three hours a nurse named Margaret felt so bad that she got a special order for some pain medication. I called the Hospital admin at that point and said if someone does not come in and help him I will go to my truck and get my tools and cut the cast off myself. Four hours later someone came to cut the cast back where it was causing the pain. I can't imagine lying in bed for 4 hours in pain not being able to speak or yell to get any attention. He did have one good hour tonight with his Uncle Charlie Aunt Jean Marie cousins Erin, Brendan and the O’Reilly’s before the pain medication wore off and then the pain started all over again. I hate to do this to my family but we may be going back to PA I will be speaking to some people tomorrow to see what we can do. This is like one step forward and 10 steps backwards.

Carol we just seen your post for Bonnie Siegel thank you Bonnie and we will send your love to Julia. Thank you Carol Force for always posting and for your support. Thank you Mrs. Wiltbank for being  there for Ciara. Thank you Ms. Gary for being in touch with Julia and Ciara it really means a lot to them. I guess I should just say thank you Bayshore School.
(a lot of people are having a problem posting here if you do not have a gmail account)
here is the link to Care Pages where you can post after you set up a login all you need is your email address and put your own password in. http://www.carepages.com/carepages/MikeyD
please keep praying and posting for MikeyD