I rarely give up sleep to blog, which is why I am always behind, but tonight I cannot go to bed until I about the important anniversary today is. One year ago was one of the hardest days of my life on earth. My son looked like this:
I wrote in my journal the following:
I awoke early again Friday, July 15 and prayed that I would accept whatever God’s will was for our family, that day especially. I walked into William’s small room to find a plethora of doctors and nurses. It appeared that his dialysis fluid had stool in it. They had already done xrays and were waiting for confirmation of a bowel perforation. The surgical team came in to consent for surgery. Dr. Ford was the surgeon on call that day. Every person in the room said, “you have ‘the Man’ doing the surgery today.” We met him preop, he was kind and humble with a soft spoken French accent. Danny came in to me signing the consent and was livid that it had gone all night undiagnosed. I felt grateful it was Dr. Ford on call and wasn’t upset with his care. William went off to surgery and we headed to the chapel to pray, study and cry some more. We had planned for Hayley to have breakfast with my mom and bring the kids back, we were so grateful they weren’t there yet. We spent the morning reading, taking care of business from home and continually praying. At about 11 am we wondered why he wasn’t out yet and were then informed that they had completed the surgery and were putting in a dialysis catheter. The kids and Hayley arrived. Thank goodness she could stay. We met with Dr. Ford. He explained that approximately half of William’s lower intestine (the right and transverse colon) were extremely necrotic and because of that the PC cath tip had poked a 2 mm hole in the colon. The placed a temporary ileostomy with a mucous fistula because the rest of his colon was still ischemic and they were unsure of its viability in time. He told us the ostomy would have to stay 2-3 months and then we would be “put back together.” When asked about his future with half a colon Dr. Ford responded “I expect him to be President of the United States; actually, I expect more from him than that.” He drew a picture of colon to show us exactly what happened and also told us people live their whole lives with no colon so even if he lost it all, he could still have a happy, fulfilled life. So many emotions went through us. It was the first day I really lost it. I have never enjoyed ostomies and now my son had one?! Also, William’s anatomy was forever altered and the future was so uncertain. I went up to ICU to see him. His dialysis changed to CVVH, a gentle continuous dialysis. His belly was so swollen and he had a large incision down his stomach. He was also sedated and on a respirator. It was too much for me. I left to take the kids out and let Danny and his family spend time with William. That day was particularly difficult to manage our emotions. Our family was there and didn’t understand everything, were suffering themselves and at times were not as sensitive as they could have been. It taught us we needed to be patient with others no matter how we were feeling and that we should never focus on ourselves. That really helped. The kids, Hayley, Wes and April walked to an art park nearby and walked around. Carter fell going up the steps and for forty-five minutes proceeded to say that he could not walk because of a broken leg. I tried everything and Wes did as well. Eventually, I got him to admit that he could walk, he was just sad everyone was focused on and talked about William. I felt like it was a normal reaction from a child and had more patience with him after that.
It was a difficult day a year ago. Today, however, my son looks like this:
and we learned and grew so much through our experiences last summer.
While staying at the Ronald McDonald house, various groups brought in "Happy Meals" to the residents (and often our guests too). One group was a family who had stayed their previously and we realized that it would be great to be able to go back and do the same thing. They had raffles and made it feel like a party so we tried to do the same thing. I have never fed 90 people myself and felt a little overwhelmed at the task but, fortunately, we have great families who helped! We are also very grateful to Fresh and Easy, who donated a ton of chicken and discounted the rest, and to Juan Pollo, who discounted beans and rice for us!
Now, on to the cute pictures. :)
|Grillmaster Papa with a whole lotta chicken!|
|Wes and Danny at the grill|
|The final handsome grill master, Eric :)|
|Claire, Peyton, Will, Ella and Carter all enjoying Ronald|
|The serving area before the food was placed. Sweet Sydnee who is due with our niece in one week can be seen at the back of the photo:)|
|Raffle prizes we all brought|
|Playing at RMDH--he's the only kid who hadn't been there before|
|Looking up at a CHLA hopsital, the same kind he was transported in|
|The dining room full of guests|
The highlight of the night was definitely meeting the families who are staying there. We aren't sure why this little boys are casted but he sure is sweet.
We also met the family of a 17 year old boy named Brian who is battling leukemia at CHLA right now. They were so kind and skyped him in his room. William said "hi" and "get better soon" to him. Brian's 13 year old sister was his bone marrow donor! It is inspiring to see the hope, courage and optimism of many families.
|Us skyping with Brian|
|A smiling, happy courageous young man!|
|One of the dining room decorations|
|Our little family after the dinner|
|All of our family who came and helped! Thank you again!|
|We drove by and waved to CHLA. It is such a wonderful hospital!|
|One final picture of cute blondie cousins!|
William is a handful but we are so grateful to have him as part of our family. As I reread what Dr. Ford said of his potential for greatness in his life, I feel assured that he is growing and learning and will eventually stop screaming so much. What a difference a year makes!