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What a day!
Our day started bright and early at 5:15. We did the usual pre-op stuff. During pre-op she dropped her oxygen saturations into the 20’s and it took her quite awhile to bring her sats back up. Scary for all of us. As I said before, we knew for certain that we had to get this surgery done. Dan said he wouldn’t be comfortable taking her home knowing she could have a pulmonary hypertensive incident at home and if she did that, there was a very big possibility that she would die. At that point, if it was scaring my husband, I knew it was bad. He is usually Mr. Calm in these situations.
She flew through surgery. They completed it without putting her on bypass. She had minimal bleeding. She came back extubated. Everyone was so excited about her O2 sats. 84…..I tell you……84. Her little fingers even looked pink. We were all celebrating. Her surgeon felt everything went remarkably well and we waited for her to come back up to the PICU.
She had a hard time with pain control. They just couldn’t get her pain completely under control. There isn’t much worse in this world than listening to your little one cry out “Mama, ow!” and not being able to do something.
We were just sitting there and her nurse changed her O2 sensor to the other toe and all of a sudden it read 44. It was just that fast. They tried to echo her and couldn’t see blood flow through her shunt. I knew then it meant cath lab time. It wasn’t until they called for ECMO on backup that I truly cried. Many of you might not even know what ECMO is but If you are a heart mom, you know exactly what I was feeling. ECMO is not a word you want to hear.
The complicated part for Evie is that her crit is so high. They have been doing exchange transfusions trying to get it down. It is a hard balance to find. Her body has worked so long at trying to move oxygen. The only way to do this was too produce more red cells but more red cells equal thicker blood and thicker blood equals clots. This whole surgery has put her little body in shock, just like the cath did. The other issue she is having is her body has gone crazy producing platelets. She was 80 when we came in, which is low, and we have steadily climbed into the higher 200’s over the course of the day. Add to that the fact that you need heparin to stop clots but not too much because you are still bleeding from the surgery and it becomes a very delicate walk on a tight rope.
They ballooned her shunt and removed the clot in the cath lab. Her sats instantly came back up to the low 80’s. Her shunt was still in great shape which meant no stent. She will spend the next 24-48 hours completely snowed and on the vent. We will then see what happens. We can’t have this happening all the time. They have the issue of collaterals too. These collaterals, along with her PDA that never closed, are what have allowed her to survive this long. But now the collaterals are competing with her shunt. They have been debating back and forth about when to put coils in some of the larger collateral vessels to block them. If they coil them now and she clots her shunt, they will in effect take away her safety net. If she has no collaterals and clots her shunt, she has NO blood flow to her lungs and she will die.
Although overwhelmed and sad that there were complications, Dan and I are continuing to count our blessings. First, it happened while all the doctors were still here and not in the middle of the night. Second, that we didn’t just proceed with the Glenn. We have been told by numerous people she wouldn’t have survived it. Third, we didn’t proceed last Wednesday. This is what we were afraid of, complications without a surgeon around. We were thankful we didn’t need him last night though it was comforting to know he was here just in case.
In the midst of all the chaos, we received pictures that sweet Rachel had taken of our babies. We sat in the cath lab waiting room, looking at all our blessings. I will try and post some of those pictures later. In times of trials, it’s always good to keep your eyes on all that you have been blessed with.
The outpouring of love and support has been overwhelming. Thank you for covering sweet Evie in prayer. When I could do nothing else, I looked at Facebook and read about everyone who was covering her in prayer. I can’t thank you enough.
Here is what her fingers looked like before and after. Pink is our new favorite color!
