Dear John Paul,

It's 2:30 am and your dad just went to sleep.  We are giving a new night nurse a try tonight so if all goes well, this may be one of the last early morning letters I write for a while.

Right now, you are doing great and sleeping beautifully however you have given me several reminders this week that this can change very quickly.   On Wednesday, you gave me a pretty big scare.  You plugged your trach and within seconds your oxygen saturation level dropped from the 90's to the 40's and all the color disappeared from your little body.   We had to do an emergency trach change and it took you a few hours to fully regain your color.  It was horrible.   On Friday morning, you had  a desat that dropped to 38 and while you recovered fast, you couldn't stay up and I worked on you for about half an hour before you were clear and capable of maintaining your saturation levels.

Unfortunately, from various experiences we have had over the last weeks and months, it has become clear that while the nursing help is fine when everything is going well, they are not equipped to be useful in critical situations and generally are not capable of assessing your needs accurately.   Your dad and I have decided that the nursing care during the day is not worth what we sacrifice in constantly having a nurse present.  We have decided to only have night nursing and forgo daytime nursing.  I am excited to have a slightly more "normal" dynamic again.

You never cease to teach me, your dad and your siblings the basic principles of life...our need for faith, our reliance on God...our utter uselessness without Him....I would be a puddle on the floor right now if it weren't for the prayers of our friends and family...and the strength of your pretty amazing daddy.

I love you more today,

Mom

Dear John Paul,

It is a rare, middle of the week, middle of the day note, but I had to stop to officially document.....you are officially 11 months old!  Happy Birthday!   You have had a great day.  We had a birthday snuggle and you are on day 2 of your new diet with no issues to mention.

You saw the cardiologist last week and it was great news that your heart is doing great.  We also were blessed to have kept power during Hurricane Sandy even though your pop-pop was good enough to let us borrow his generator just in case!

We love you little man!

Mom