Slow and Steady Wins the Race

The nurse taking care of AaronMatthew told me today, "Like a turtle, slow and steady wins the race."

I have noticed since the surgery, AaronMatthew has a decreased lung capacity. When he cries, there is not much sound and it takes a lot out of him. He will turn purple quick. Patting him on the back or butt and gently bouncing him upright helps to calm him. 

The doctors almost had to put him back on a respirator this last week. He hasn't looked like he's felt well either.

I talked to the doctor about getting a lung doctor to check on him because of the decreased lung capacity and the oxygen saturations. I also asked if he was better off before the surgery because even though he had breathing issues before the surgery, it seemed as if they became worse? He is now on hi-flow oxygen 6 liters at 50% and increasing as time goes on. Every time they try to wean him, they end up increasing it to due to respiratory distress. 

She explained to me that some kiddo's after surgery stay on respirators for awhile. She said she believes AaronMatthew is progressing better than she thought he would. She said that he had major surgery and needed to have it to repair a hole in his heart and that the heart pumping the blood has changed pressures in his body and he's just going to take some time to adjust along with the valves that will not ever function normally because they are reconstructed. 

I asked her if we would be able to go home soon if we had around-the-clock care, like a PCA. She said he's not in any position to consider going home right now. My eyes began to fill with tears. I just want my baby to be well enough to come home! (We've been tenants at Children's now for over 2 months!)

Honestly, I was ignorant to think that it would be all okay after the surgery and there wouldn't be any breathing problems. I wasn't expecting respiratory distress. I was expecting that to be fixed. With that, I have become discouraged.

I was assured that even though AaronMatthew has respiratory distress at times, we are progressing forward and not to be discouraged because he is further ahead than the doctors ever thought he would be.

For that I praise the LORD.

Thank You Jesus!!

And even though they had to go up on his oxygen, today was a good day for AaronMatthew. He still looked sick around his eyes, but not as much as he had been looking sick this last week. Finally he has been fever free for over 48 hours and his heart rate and respirations are lower. He also was not head-bobbing. He would cry when I put him down because he was comfortable in my arms and wanted to be held. I hate to leave my baby at the hospital.

He is progressing slow and steady. 

Psalm 27:13

I would have lost heart, unless I had believed

That I would see the goodness of the Lord

In the land of the living.

Psalm 27:14

Wait on the Lord;

Be of good courage,

And He shall strengthen your heart;

Wait, I say, on the Lord!