Thursday, August 19, 2010

All we need is just a little patience...

Said woman take it slow
It'll work itself out fine
All we need is just a little patience
Said sugar make it slow
And we'll come together fine
All we need is just a little patience
Patience, patience, patience
-Guns N Roses, Patience

No real news today; it was a fairly steady day. I feel very relieved to be through the first 24 hours post ECMO, but that certainly doesn't mean we're past the scary times. He's still heavily medicated with drugs that help to support the function of his heart. His latest echo showed that the outside of his heart is squeezing pretty well, but the inside part (the septum that divides the chambers of the heart) is not doing much yet. We're still very hopeful that it will continue to get stronger as it heals from the trauma of the past week.

I'm trying to remember that Jay's body IS healing ... but he's going to take his time getting there. We begged and pleaded for his heart to return to a normal rhythm - and it did. We begged for his heart to begin squeezing on its own - and it did. Now I want to see him able to come down from some of the medications so he can start waking up - and I fully believe that he will. But it's all going to take time, and I need to relax and be grateful for the steps that we're taking, even when they are somtimes too small for me to see well.

It's very hard not to get caught up in what "the numbers" mean. The monitor above the foot of his bed is constantly giving information ... instant to instant blood pressure, O2 sats, heart rate. The daily echo gives measurable data about the function and output of his heart, the pressures within his heart. It's hard not to hyper-focus on those numbers and read more into them than I should. They are just hints to help understand his overall healing. At the same time, the numbers give insight about how he's doing, and if those numbers start dropping, we want to address it before the trend becomes a problem. That is a major balancing act, and one I'm struggling with. Why is it that one day dropping pressures and beeping alarms are a big problem, and the next day those same pressure readings and beeping alarms are a "wait and see" indicator? I trust the docs, but I want so desperately to see signs of improvement and tend to latch onto anything that will tell me he's getting better. Sigh.

So, patience. I'm trying to remember that God's healing hands (and the wisdom of countless doctors and nurses!) have brought him this far and trust that they will continue to support him in the days and weeks to come.


Anonymous said...

I am glad to see your post tonight. For some reason, I have been having a hard time getting to sleep, and I usually am asleep in 10-15 min. Perhaps it was because I hadn't heard how Jay was doing yet.
I am glad for the steady improvement. My prayers will be for the inner muscles of the heart to strengthen and that they will be able to ween Jay off the medicines and that Jay will be able to tolerate it. We need to pray you guys home! But, we need patience, too. All in God's time. He makes all things beautiful in His time. (I like that song).
Love you,
Aunt Ali

Anonymous said...

we must remember to praise in Him..believe that His will be done and His arms and angels are surrounding you now..

Anonymous said...

Remember this day, this post, because one day, the irony of your words will make it funny. The day will come when Jay is well enough and he's ready to get up and play. You'll be nervous about letting him do too much and will likely tell him to be careful, go slow. Thinking about days like today when all you want is to speed things up is sure to bring a smile. :-)
Who knows, maybe Jay is giving YOU time to prepare yourself for the jumps he's about to take.
I pray God will give you continued hope for tomorrow and peace with today.


Emily Erin said...

Sending love and prayers for continued recovery, and yes, some patience. This too shall pass... praying that Jay's fever has gone down and that he'll continue to make steady progress towards health.

Anonymous said...

Dear Jen,
I can't tell you how my heart aches for you when I read your words. Having been by the side of a sick baby in my day, I remember well those feelings of helplessness as you see them suffer. Our situation wasn't even life threatening but we still hurt for her. Hang in there, as you are, and time and God will take care of things. God bless you and Derek and help you with the patience thing.

Nancy Kiltie

Archie Gupton said...

Jen, you are approaching the real times. The patience is the hard part, and you will be fine, as will our Tool Boy! This is when his body reminds us how both fragil and tough our human body is. More it reminds us that when progress may be intangible, what do those who are Faithless depend on?
You are amazing, and a big Inspiration...for us all. Questioning is good! Like those single footrints in the are not alone, you may just be lifted, so only one set of footprints remains...your God's. Peace

Anonymous said...

We're there for you and praying for strength and patience and God's abiding presence to sustain you all.

Love from the Lingafelts

P's mom said...

Hang in there Jen! Jay HAS come such a long way in such a short period of time. Although, I know we'd all like for him to completely recover overnight and run out of the hospital full speed ahead tomorrow! How's Luke doing? Getting better I hope!

Anonymous said...

Dear Jen,
I have been avidly reading your blog and have been sending prayers and pixie dust over Jay and all of you. I just think you are incredibly brave and wonderful to write this blog. I hope you will publish it later so Jay can read about his unforgettable journey.
Best Wishes, Karen Sairanen