Tuesday, September 7, 2010

7 Sept Morning Update: There is an A and then there is an A

I don't know about you guys, but I am a dork. I am. I was that kid, the one blowing the curve, the one who thought that not all A's are created equal...and you know what Nolen buddy, I still think that not all A's are created equal. I want you at 97-100 Pulse Ox at all times...I don't want just any A, I want an A+.

Before his temperature drop when he was still cooling down from a fever

We are waiting on the doctor, so there aren't any new ideas about what could be causing this, and in some ways I'm secretly praying for a positive culture so that I can KNOW what's wrong and where to go next with this. Watching your child fight the unknown is not fun....fighting the known is only better because you can measure progress, treat symptoms and learn how to help.

They are trying to wean him off his Oxygen (but it does NOT look likely, thirty minutes into being down at 35% and he's already dropping to the low 90s). My sister suggested that I keep a journal of his levels for a day or more to see if I can "capture" the pattern I'm seeing happen repeatedly but the nurses and doctors keep brushing off (with good reason, they don't see it because they don't make any type of note of a O2 level less than 100, whereas I know the numbers, I watch his average drop from being the high 90s, to the mid 90s, to the low 90s and then bottom at the 80s/70s). She thinks if I can catch the pattern on paper, perhaps they will be more willing to consider that there is a pattern at all. So here I go with my excell spreadsheet...every thirty that I know what to do, I'm doing it and feel so much better.

Nolen's experienced another "personality" change he has returned to the severity of lethargy/floppiness/unresponsiveness that initiated his move to the PICU. He isn't waking to eat, so we are doing bottle feeds. He has good feeds (4 oz of breast milk) but he is experiencing shorter and shorter wake times following feeds. Here is a picture of my sweet man, enjoy
He is warming up very slowly.


welcome to our wonderland said...

I think keeping a journal is a great idea then you can say hey look at this and they can see the pattern too.

he is so cute!!

maybe the sleeping is a good, getting better sleep.

that is great that he can get 4 oz in that will keep up his immunity.

thinking of you and wishing I could help out more, but praying hard and everyone I know in blog land, twitter, facebook, our church, family and friends are praying hard little guy!

Kim said...

He is so beautiful. I'm glad you are keeping the journal - doctor's are too quick to dismiss Mom's intuition that something important is going on.

welcome to our wonderland said...

just thought i'd let you know my church sent out a mass email asking for the parish to pray for Nolen.