Jake update

Jake Post-Glenn

Jacob is doing really well so far. He has woken up a few times in pain. His cry was so sad but they gave him more pain meds and I held his hand (Which he squeezed very tightly around my finger) until he calmed down. He seems to be resting much better right now. He is doing well off of the vent. All of his numbers look very good. His blood pressure and heart rate have come down and his blood gasses are perfect.

He is no longer on dopamine but still on the Milrenone and pain meds. The chest tube still is not draining much so they think it will come out in the morning along with the RA line and probably the pacing wires. He still has great urine output which is also a good sign.

They are going to start feeding him tonight so I pray that goes well. They don't have the exact formula we use and it caused some gas and wretching when we gave it to him after the cath so we are starting him on pedialyte and then we will see how he does on the formula. I may have to talk to nutrition tomorrow about alternate options.

Dr. Szwast said we have to watch the pulmonary vein for a few months to make sure that the hole did not go through to that. She said they can see it on echo's or chest xrays. If it is going to cause a problem it may not show up right away. This will not prolong our stay here however once home we may need to have a echo or xray once in a while to check on it. I so wish that we did not have that to worry about however in the grand scheme of things this is a minor issue. Most likely it is fine, Dr. Spray stopped the bleeding and stitched it up. Hopefully that will be the end of it.

Aidan came in to see his brother and sang him a song "You are my sunshine". He told Jake that he would be just fine and to feel better. It was so sweet. We covered most of Jake's lines so all Aidan could see was the dressing over his incision but he did not notice it. He is such a good big brother!

Tomorrow will be a very tough day for Jake. During this surgery they re-route the blood so it no longer goes through the heart. It goes directly to the lungs. The lungs in turn have to deal with added pressure. While adjusting the pressure goes to the head and causes some swelling and very bad headaches. The kids tend to be unconsolable and cry a lot. Please pray we can manage this for Jake. Luckily it should only last a day or two.

NOW FOR THE GREAT NEWS...

I may be jumping the gun here but so far Jake's breathing looks so much better. He is breathing 20 or 30 breaths a minute. Jake used to breath 70bpm and always had that loud strider. Even when he was awake today and upset he had no strider. Now he is still under sedation so not sure if it is better or not but he is no longer tugging under his rib cage. His breathing actually looks like a wave pattern but he is using more of his lower belly and chest. The thought is that the shunt may have been causing some of his breathing issues. Only time will tell for sure but I hope he keeps this up. The only reason we restricted his bottle feeding was his fast breathing. If he continues to breath normally then we can start pushing that and maybe not have to use the tube as much or at all.

He actually takes even pauses between breaths... so great to see!

Ok well it has been a long day so please continue to pray that Jake has a quiet night and has a smooth recovery. Also please pray that this hole does not cause any other issues. Thank you all for the continued support and prayers.

Love,
The Bakers

Waiting before Jake's bi-directional Glenn

Post-Glenn

Hope nudges me forward...
When things don't seem clear...
It reaches for my hand...
And says, "Have no fear"...
It points to the mountain...
And says..."Are you ready"?
It's time to begin...
Just keep yourself steady...
And when my steps falter...
I cry..."I can't do this"...
Hope pulls me up...
And says,"We will get through this"...
Together we walk...
Toward the ominous hill...
Then I ask hope again...
Are you sure it's His will?
It's so very dark...
Toward the long road ahead...
I wonder...if I should just stay here instead...
Hope squeezes my hand...
I squeeze back real tight...
Hope says we must go...
And... I know he is right.
As we trudge up the mountain...
Into the unknown...
Hope soon reminds me...
I'm never alone...
Then we reach the summit...
We have come so far...
At the top of this mountain...
I see every star...
Did you think we would make it?
Hope asks, with a smile...
Did you think you'd keep going...
In the midst of your trial?
God surely led you...
Yes...every...day...
He marked out your path...
And then...He paved the way.
And now we'll part ways...
For just a short while...
As you have surpassed...
The worst of your trial...
The path from this place...
Is only downhill...
It's much easier...
And it takes little skill.
I thanked my companion...
For leading the way...
And helping me get...
Where I'm standing today.
God paved the way...
When I thought..."I can't cope"...
He taught me to climb...
And then, He sent ..."Hope".

~Stephanie Husted