Colby's baclofen pump was officially removed today by 3:00. He has had a very hard time recovering from surgery. Part of it is due to withdrawals from the intrathecral baclfen, the other is due to the fact that no matter how many times I explain the the pharmacy what time his meds are due and what doses he gets they always get screwed up. I realize that 7 medications is hard to keep track of but I know they can do it for kids going through chemo that take like 25 medications so 7 seems like it shouldn't be to difficult. Anyway enough ranting I'm just grateful that we have found the source of the problem and that it has been removed.
I'm starting to wonder if we had to go through this so that we could firmly decide that we really don't want a baclofen pump. I don't know if I can subject him to another major surgery like this any time soon. He has a drain coming out of the big incision in his stomach so that all the crud can come out that was causing the infection. Not a pretty site. I'll take a picture tomorrow but I don't know if I will post it for everyone. It is soundng like we will be here until at least Monday afternoon if not longer. It will depend on how he responds to the antibiotics. Right now his fever is still high and his blood pressure and pulse rate are definitely to high for a three year old.
I cannot even begin to explain the strength my little man has inside him to go through all of this. He still glares at the nurses and yells at the doctors but he is trying so hard to be patient and not scream all day for his mom and dad. He is so tired but he still smiles at me with his eyes.
The bishop came by today. We are so blessed to live in such a wonderful ward who are always looking out for us. He was down with his family and took time out to come up and visit with us. I know that there was a very good reason for us moving into the house that we live in. We couldn't have made it through the last year and half with out their love and support.
I wish I had more pictures to post right now but I don't so I will try and get some on here soon. Just one more thing to do on my to do list! Thanks to everyone who has been praying for Colby we can't thank you enough!