Sunday, October 9, 2011

Fatigue

Not sure where to begin because my head is a bit... busy. Really, we have had a great weekend in that Bob's parents are here and we are enjoying fall, going to a pumpkin patch yesterday, playing, barbecuing with the neighbors, joining our church today... I'm having a hard time being completely present though with all that's been going on.

Some of you know that yesterday we ended up going to the ER. Dean was sleeping and the pulse ox started to alarm that his heartrate was dangerously low. It would not rebound and so I freaked out, waited, then decided to call 911. They agreed that I did the right thing and sent out a rescue crew to bring Dean to the hospital. While there, the doc asked if Dean desated on the monitor while the supposed low heartrate was happening. He didn't. That combined with a normal exam and EKG (that they did while we were there) probably just meant it was an equipment malfunction. What in the heck. :/

We have given up on the nasal cannula because it just results in fighting with Dean all night to get it on or keep it in. Then no one is sleeping. Instead, Bob hooked up the nebulizer mask to the oxygen tubing and we are doing a kind of blow-by oxygen near Dean's face. This means that someone needs to go in periodically and move the oxygen when Dean changes positions in his crib. So basically, Dean sleeps, but the person adjusting does not. :/ Bob is a very heavy sleeper (i.e. I have to whack him HARD to wake him up - haha) and so it's likely going to be me more than not. But at least we can protect Dean's brain from the drops in oxygen if we can do this. Pray for our sanity. :)

I broke down during church today. I was just thinking about how unfair it is that Dean has to deal with this, that we have to deal with all this, that this world is just not all that fair in general sometimes. I was tired, clearly, and just wondering if I was up to the challenges we have with us and to come. I asked myself the same questions when Dean was born, when we had the feeding tube, when Dean had surgeries... the difference with this apnea and desats is that they could really hurt Dean's brain and body. I don't know how much it's just something to get "over." Would love to hear thoughts on this one.

Our plan is to go ahead with the tonsil and adenoid surgery. We're looking into other matters that could influence apnea, like reflux, GH dose, diet. We will figure this out. I've made it my mission!

6 comments:

sara said...

much love to you, ali.

Janet Gulley said...

No words of wisdom, just prayers for MISSION ACCOMPLISHED.

Dorette said...

I am sorry you have to deal with this. We live in a broken world full of unfairness.

For me, when I suffer similiar "fatigue" - it helps when I try to imagine how AWESOME a perfect heaven will be!

Praying for renewed energy to keep on keeping on...

Andrea said...

Dean has the most amazing advocate and Mama. I can only imagine how hard it is. Hang in there. You're dong great! I believe God chose you to be inspired by Dean, but he also chose you as the best Mom for Dean. No one could do it better.

M said...

Ali,

Don't despair.

My wife and I are in the process of adopting a child with PWS. I have followed your blog for a few months, and find it one of the greatest sources of encouragement in our journey.

You're a great mama. Keep up the good work.

Ali Foley Shenk said...

Thanks, all! It helps. I'm just so concerned about little Dean's brain in all this. I want him to be the best Dean he can be.

M, that is wonderful that you are adopting an angel with PWS! Despite all this craziness, I cannot imagine my life without Dean. The joy is undescribable. :)