Thankful

Many of my friends have been posting what they are thankful for each day in November on Facebook. While I am not actively participating, I am thankful for many, many things. The biggest being that while our family has been altered, Jake is still with us. I honestly can't imagine, and try not to think about, what our life would be like if he hadn't made it. I am very thankful for my incredibly supportive husband who is my partner in this journey. I am thankful for our other son Luke, he's had a lot to deal with at the young age of 8 (just turned 9) and amazes me at times with how he handles things. I am thankful to have such a wonderful extended family and caring friends who continue to offer help and step in whenever it's needed. I am very thankful for Jake's friends who treat him no differently than they did before and continue to include him in their activities. I am also thankful for the teachers and staff at the boys school, their support has been so much more than I ever could have expected. Finally, I am thankful for all of you who care about Jake and our family and continue to pray for his healing. We are truly blessed.

A few weeks ago, I picked up a copy of Jake's medical records while he was at Children's Hospital, all 1216 pages. I'm glad I chose the disk option instead of paying per page! I've been going through some of it and am still not through his time in the ICU. There is a lot that I don't understand because of all the medical terminology and abbreviations, but the parts I do take me back to a time when I really don't think I was allowing the severity of his situation to truly sink in. I don't think I had the emotional or mental capacity to realize how critical he was those first few weeks in the ICU. Reading his reports makes it very apparent how sick he really was.

It's also amazing how much I had forgotten, probably as a self-protection mechanism. One of the things I was reading a few days ago was about the first time they tried to take out his breathing tube. It started off ok with the assistance of an oxygen mask and a few nebulizer treatments, but by about 5:30pm his breathing was horribly labored even with the mask. I sat with him on the bed doing everything I could to help calm him down to make his breathing easier but nothing was working. I remember having to step out of the room a couple times to pull myself together because watching him struggle so hard just to take a breath was just too much to take. Breathing is normally something you don't even think about and shouldn't be that hard. I remember the scared look in his eyes and the horrible sound as he kept trying to gasp for air. I kept asking the nurse to get a doctor so we could do something for him, I felt so helpless. After what seemed like forever, a team came in, evaluated him, and determined they needed to put the breathing tube back in. He was then heavily sedated, breathing calmly and finally able to relax. Going through that was one of the worst moments I had with him in the hospital other than the night he was admitted. While I remembered the overall event, I had forgotten all the emotion tied to it.

I have to read the reports in small doses because it's just too much to take in all at once. But it also helps give me perspective on where he is today and how well he's doing. I watch him from a distance sometimes and my heart is so full of love and admiration for how strong he is.

I didn't intend for this to be such a long blog, but wanted to give a quick update on Jake's longer school days before signing off. He was there for four hours each day last week including lunch and recess. I can tell he's really enjoying it because the first thing he tells me about when I pick him up is something funny one of his friends said at lunch/recess. While he's been a little more tired, it's a good tired and he seems happier. He seems to also like the variety of subjects in the afternoons and I'm getting good reports on how he's doing. We did run into a new "snag" this week when on Tuesday due to the cold weather, we went to put on gloves. You don't realize all the motions a hand goes through while putting on a glove, but we'll just suffice it to say, it was a struggle for his left hand. Just when I think we've figured out how to accommodate things for him, something new pops up we hadn't anticipated. I'm sure there will be more to come and we'll just figure it out as we go along.