I haven’t had the time or energy to post the past few days although every day I try. I try to find a quiet corner of the hospital to sit and drink a coffee and write, but it hasn’t been happening. I actually hate when a few days go by without writing because I feel like I won’t remember everything I wanted to say.
First of all Kai is doing well. Almost too well. When our friends from the jimmy fund came by Monday morning we all talked about how surprisingly well Kai looked. I don’t think any of us even expected to be here Monday, but here we are. Kai has always done things his own way and this will be no different.
As good as he looks, I know things are changing. Each day this week we have increased one of his meds. He had a few episodes o breakthrough pain, but everyone is very quick to make a new plan that will keep him comfortable. He has been sleeping more and more the past few days, which is hard to see especially when he still looks so good. His is still soft and pink and warm. He is still breathing steadily and clearly.
I have started getting his blood pressure done each morning. I felt like it would be a good way for me to see if things had changed overnight, but of course in true Kai fashion, his pressures have been BETTER each day…
It seems as though the infection has cleared and isn’t coming back. I am thankful for this but it also leaves me wondering…I am afraid now that this could go on a long time. Will he suffer more by going slowly as the hydrocephalus builds? Will the hydrocephalus build quickly enough or will the tumor end up slowly taking over?? Will we be here at the hospital for weeks? Should we try to go home?? I thought after making the call last week that I would no longer have to think of these things. I though we decided to let things happen as they may and chances were good this infection, this shunt malfunction, this tumor would take Kai, and it would likely be soon.
But for now he is looking good.
He is enjoying the party and the snuggles and the love.
After sleeping most of yesterday he is brighter and more alert this morning than he has been all week.
Oh Kai, I only want to do what’s best! When things are bad it is SO obvious, but when you are here in my arms this morning, happy, content, looking around it makes it so hard to remember we are doing the right thing. I have start letting you go all over again.
This morning we had breakfast together. We got a good nits sleep and no one else is here yet. He has not taken anything but a few drops of water by mouth lately, but on Ashley’s birthday he had some frosting from her cupcake and today I filled a 5ml syringe with my orange mango juice. He opened up wide and drank it drop by drop. I know it’s not much but he loved it. He has always been a sweet tooth just like his mom!
A few days ago we also had some professional pictures taken of him here in the room and yesterday I had Mark bring Kai’s photo albums from home. I have covered his door with photos and everyone keeps stopping to look at them.
There are so many good ones. So many where he is smiling and playing and doing things I had forgotten he used to do. It is a good reminder of where we are now, but also that he did do a lot in his few short years. It is sad and hard to look at them sometimes but I’d do anything to see that smile.