Well, what we have there is what Noah ate at every meal while he was in the hospital. A Strawberry Shake
"Why is everything so grim, once the Strawberry Shake is gone?"
-Noah Griffith
When they finally lifted his surgery orders, and let him order room service after not eating in over a day, he was STARVING! The one thing that stuck out from that first meal, was the shake. I told him I didn't care if he ate 100 shakes, as long as he got better. He proceeded to order one with every meal, including breakfast, and I kept my word and let him, as he kept his word and continued to get better.
It has been well over two months since Noah was hospitalized, and to be honest, it has taken me this long to feel good enough to write it all down, and reflect on it. It takes a lot out of a parent emotionally, and even still, we have unanswered questions, but he seems to have recovered, and we will continue to hope for the best possible outcome from here on out.
The long waited diagnosis.....
Noah was very sick with everything ranging from a cold to the stomach flu for a week. He missed his schools Archaeological Dig and camp out that he had so been looking forward to. Sunday night, when we put him to bed, we had a well recovered kid on our hands who was looking forward to returning to school the next day. That was, until 4:00 in the morning.Gabe woke me up saying Noah is in a lot of pain and I think we need to take him to Primary Children's Hospital. I was confused since he was getting better, and even more scared, because Gabe is the calm one who is always there to tell me things are fine, lets just give it time. Yet, there he was, panicking and saying we need to go....NOW.
Noah was holding his right lower side and crying out in pain. I sat in the back seat with him on the way to the hospital frantically doing a Google search for the symptoms of an appendicitis. That had to be what was happening, the description was dead on. I knew he would have to have surgery, but I kept telling myself it was okay, it is quick, and we would be home in a few hours. I was wrong, so so wrong.
His poor body went through so much that day, with the tests and procedures that gave us NO answers other than the following two things.
What does this mean? Well, to my surprise, his enlarged liver is directly related to his heart condition. This has been happening since he was 3 1/2 years old after his last open heart surgery. But they said that it is very unlikely that it was at all related to what was happening with him.
Here is a picture later that night after he was finally allowed to rest in his hospital room and get ready for the next day of more tests and possibly surgery, but who knows what for. He was drugged....can you tell?
I can not tell you the amount of confusion I felt. We ranged from "Noah is in Heart Failure, and there is nothing we can do", to, "Well...we will wait and see." He went in for a minor surgery where they drained the fluids that kept building up around his liver, and tested it to see what it was. Later that night was when we received the SBP diagnosis.
He did not handle coming out of anesthesia well at all, which has always been the case since he was an infant. Morphine and Noah are not the best of friends. He was kept sedated to the point where he was not feeling too much pain, but felt like having visitors.
His best friend Nick brought him a gummy hand.....leave it to Nick to make my kid laugh at the hospital. He also received a huge box of letters and cards from his school. My friend Leanne brought them up and we taped them up all over his room.
Another crazy visitor......
The Wilson's made him a Candy Gram, which everyone wanted, but I informed them that it was all for Noah. Sorry guys.
A gift from friends at work.
The next day he wanted some air, and we were able to get him outside. It was cold, and began to rain, but it felt like heaven. Any place without beeping machines and four walls was paradise to me.
After 5 days in the hospital, the Dr's asked me what I wanted to do. I said I wanted to be home, because I felt like he was feeling better. I layed in his bed every night at the hospital, and every night Noah layed there moaning in pain, and held on to me tight. The night before, he was calm, and he slept well, and even moved around to the point I could no longer hang out in the twin size bed with an 11 year old. They agreed, so we went home, with more appointments scheduled, and hopefully some more answers to come.
But not until his final meal......which although not pictured, included a Strawberry Shake.
(I began writing this last November, then December....and now it is May.)
I know it is out of order, a lot of it doesn't make sense and is incomplete. I am still up in the air as to what it all means, but we do know we have new worries, but pray that he continues to progress and do well.
