Wednesday, December 14, 2016

Frustration is the name of the game

It's hard being a six year old in the hospital.
It's even harder when, in the last 48 hours, you've had an invasive procedure, a seizure, are in heart failure, have low blood sugar and have a respiratory infection of some sort. Oh, and then there's the whole half a heart business to begin with. 

Yesterday, as the nurse was removing his ART line (and before they took his foot iv out and added a new peripheral iv in his arm), Bodie said to me "Mommy, everything hurts."

I know how you feel, bud. When you hurt, mommy hurts, too. And when everything on you hurts, every single bit of mommy hurts, too.

Big picture, he's doing well. He's recovering well and holding his own rhythm nicely, particularly considering he's no longer on beta blockers. He is responding well to aspirin as a blood thinner, so we are able to table the Coumadin discussion unless or until his heart function gets worse. We got moved to step down at 6:30am this morning. And just got approved for 4 hour pulse ox checks instead of continuous, which gives him a lot more mobility (one less cord attached to him).
All good things and definite answers to prayer.

But he's tired. And he's bored. And he's easily frustrated on a good day. And since the last two days haven't exactly been "good" by a 6-year old's definition, you can guess how low his frustration tolerance is at the moment. It seems we keep starting and stopping projects, with him crying "I give up!" shortly after starting. 

He did perk up when Daddy showed up yesterday - they played Minion rush and ate some serious chow mein together (thank God for Panda Express!).
And he slept GREAT last night, with no dips in blood sugar and high sats. His color is so much better already. 

So now we're where the rubber meets the road from a prayer perspective.

We need Bodie to keep feeling better. 
We need him to be able to keep maintaining a good rhythm and good sugar levels.
Most importantly, we NEED the med changes to help his heart recover.

There is no guarantee his heart WILL recover. And if it does, we have no idea how long before we will start to see any improvements in either echo or maintaining his baseline sugars. It may be a very slow process to getting back to whatever his new baseline will be. There is so much we don't know. These med changes are sort of our last hail mary in terms of possible reversible heart failure explanations. After this, it's sort of we're stuck with what we're stuck with in terms of his heart failure and needing to list for transplant.

So we need prayers.
Very directed prayers.

1. Pray for Bodie's emotional health (and mine, by extension - his whining isn't exactly music to my ears).

2. His last dose of beta blocker was yesterday morning. It has a relatively short half life and has now been out of his system long enough to know he can do well without it. Huge answer to prayer if in fact the beta blocker was what precipitated everything we've seen. Please pray this continues.

3. His last dose of Flecanide (his anti-arythmic med) was yesterday morning. It takes about 48 hours to get out of his system. Please pray he has no arythmias as he comes off of it and that he tolerates being off of it well.

4. He is maintaining his sugar levels pretty well. Please pray that this continues.

5. BIGGEST REQUEST. Please pray that these medication changes WILL return his heart function back to baseline. We don't know if this will happen, but this is the Christmas miracle that we need.  For it to happen, would absolutely be a miracle. We need to stun everyone with the power of prayer and see his heart function completely bounce back. Please please please pray for this. 

We will have to be in the hospital at least a few more days to monitor his reaction to the med changes, but don't know much beyond that at this point. Please pray he responds well and we can go home SOON!


  1. In this season of HOPE, we pray that you and Bodie and Dusk and Sierra, can know the "peace that passes all understanding."
    We pray that you can remember the themes of "Comfort and Joy" that the First Lutheran children exuded at their Christmas program - just last Wednesday.
    We pray that God can take away your fear.
    Lord Jesus, bless this family!
    Laura and David Rusch

  2. Those old Beta Blockers are awful. They can cause hypoglycemia, hairloss and so much more,especially combined with other meds. GOOD NEWS he is off of them. I feel that alone is the answer to Prayers.
    Sending many positive thoughts and Prayers and a special one that you are home quickly and Bodie feels no more hurting and he is a happy boy once again.
    Don't forget to Breathe Mommy, take care of you too.

  3. Praying for your Christmas miracle!

  4. Sending lover and prayers constantly. Asking everyone I can think know of to get on board with their prayers. Lover and hope to all of you. Text or call if u need anything.

  5. Will pray before my head hits the pillow tonight.

  6. What a very strong and amazing family. God has chosen you four to share this journey with Him. He has gone before you, He has your back, He will always be by your side.