Tuesday, May 31, 2016

Central Shunt Surgery

Lyla is undergoing her first open heart surgery. They are going to place a central shunt in order to help her pulmonary arteries grow.

We stayed in the Akron Ronald McDonald house. How grateful we are for the services that they provide. We were due at the hospital by 6am and it would have been super early to come from home.

Here is a picture of Lyla before we got to the hospital this morning. She was all smiles even though she was terribly hungry.

 Mark and I had a hard time handing her over to the nurses to undergo her surgery. I felt a little like Abraham when he was taking Isaac up the mount to sacrifice him. I never know what the outcome of a surgery will be, I know I have to have faith. I just struggle with it.

Our last moments before they take her away to surgery.
After about an hour our surgeons assistant came out to let us know that Lyla is doing well, she went to sleep easily and they were able to place the shunt without putting her on bypass. What a blessing.

After waiting in the waiting room for what seemed like forever they brought us back to the PICU to see Lyla. She was heavily sedated and still intubated with a large drainage port. When the nurse pulled back the blanket I nearly fainted. Seeing my child in such a state is indescribable. I wanted to take all the pain and hurt away, I didn't know what to do.

Here are pictures of Lyla after the surgery. She had to remain intubated for 3 days as she struggled with breathing after the surgery.

On day 3 they turned off all sedation and pain medicine. They gave her only Tylenol for the pain.

Lyla seems to not be doing well. She is crying non-stop and they don't know why. She had an echo today to see if something is wrong. It came back negative. I am concerned because she keeps throwing up and her eyes are crossing. It is almost like she is going through withdrawals.

One of the few moments of Lyla at peace. They brought her a swing and she slept 4 hours in it.

We asked the doctor if they could put her back on the pain medication. They are looking into other options as to what might be causing her to cry uncontrollably.

They finally gave her the pain medication 18 hours later and Lyla is perfectly happy. The doctors are now going to wean her from the medication.

Day 8 and we are finally able to take our little girl home! What a long week and a day!

The wagon ride out the door. Life is good!

Lyla and Mommy snuggling after sleeping in our own bed! This was day 9 after the surgery.

Smiles for days!