Today was rough. Probably one of the most emotionally draining days I have been through…ever. Today was Parkers Cardiac MRI at Childrens Hospital LA. The day I have been dreading because we had to put him under anesthesia, which I have been terrified about, being that kids with WS can have a reaction to Anesthesia. I have been playing this day in my mind for a while now. Trying to stay positive but also scared. Scared of having to walk away from Parker and give him to the doctors and say good-bye and wait until he wakes up. That fear of walking away; the fear of him not waking up. I had the story of the little boy Rowan who went in for a routine procedure, they dropped his big sister at school and then took him in for his MRI and heart Cath and he never woke up. His sister asking.. “Where is Rowan?” That poor family who had to leave the hospital without their baby. That fear of loss and not having control was so overwhelming, while I was trying to think positive and put a smile on my face. It’s hard to stay positive on the inside when the risk is so high. It’s easier said then done.
Needless to say it was a stressful day yesterday leading up to this. I set my alarm for 1:00am so I could feed Parker his last bottle allowed before he went in for his procedure. Then we woke up at 3:45am and got in the car to drive 2.5 hours to LA for our 6:30am check in. They are amazing there and tried to make us all feel comfortable. They took his vitals and then we went into the room where we changed him into a hospital gown and they put his IV in. We had to hold him down while he screamed and cried. I basically held him down by hugging him and holding his arms down. They then tried to distract him with bubbles and and iPad which worked well. Once we got the IV in the Anesthesiologist came to talk to us about how Anesthesia is typically not very risky but because of Parkers Williams Syndrome he is a higher risk. There is a chance of cardiac arrest.. He said he would take care of our baby and that he has a 2 month old a 3 year old at home. “He’s in good hands” . I couldn’t look at Tucker but I knew he was crying. We were both so scared. Only one of us was allowed back so Tucker gave him a kiss and I walked him into the MRI room. I held him in my arms and while they put the anesthesia in his IV he cried because it was stinging him. 3 seconds later he passed out. Dead weight with his mouth open. I was startled because it happened so quickly and so abruptly. I started crying harder, I had to lay him on the table and kiss him goodbye and walk out…
I cry just writing this.. It was an awful feeling. It was the longest 2 hours of my life. I have never felt so scared and helpless in my life. I thought about his WS and my fears for our future and none of that mattered anymore. I just wanted him to pull through and I just wanted to see his little smile again.
Two hours went by and they called us when he was in the recovery room. We went in there and waited for him to wake up. Then we drove home.. the 3 of us. 😉 He smiled and clapped the whole way home. I have never loved anyone more then I did today. It made me appreciate life and how fragile it is and how fortunate I am. My boys are such a blessing. My husband is my rock. My family is everything to me. We should get the results in the next couple days.. Until then I think I’ll take a deep breath and not worry about anything.