The morning started with Jenson actually sitting up in his bed. He was playing with 2 cups and 2 syringes (from his last dose of Tylenol) and having a great time with them. He then wanted to play with a bucket of toys taking them all out and then putting them all back in. Playing is good, as he hasn't had interest in playing until today so is a good sign he's feeling a little better.
I'm thinking this is going to be a pretty good day given the way the morning started out. The doctors want to clamp the tube going from his nose to his stomach to see if he can tolerate it without vomitting which would mean he can get that tube out, so they clamp it around 11:30am and he's tolerating it well.
Doug took a much needed afternoon away from the hospital, and my best friend was coming to visit and bring me lunch. Jenson had fallen asleep for his nap, and I'm thinking it's perfect timing. It was until about 3pm.
At around 3pm, Jenson starts yelling out "No. Mommy, no." We're looking over at him like he's dreaming and then he starts wailing. Crying uncontrollably and completely inconsolable. This is an awful feeling as a mother because all you want is to make your child feel more comfortable and nothing was working. Nothing. He won't stop crying and moaning. He says he wants me laying next to him in his bed, but then pushes me away. All he wants is to feel better. I immediately think, it must be he's feeling sick from the line being clamped so find the nurse and she promptly unclamps it. This doesn't help at first so the crying and moaning continues. We're feeling helpless at this stage. I lay down next to him on his bed. He finally starts calming down a little with only minor moaning and in walk the GI doctors and announce they have the biopsy results.
The biopsy results. My heart goes still. Could this be the time we get the news of a miracle of healing in his GI tract? Maybe this is it given it looks better visually and the doctor didn't visually see any abnormal tissue. I have tried not to let my mind go there because it's so devasting when it turns out differently.
They proceed to say "There is still presence of histio (LCH) cells in his GI tract both in his duodendum and his colon". Now my heart drops. I ask the basic questions any parent would ask, "Is it better or worse than last time? Are there certain areas of his GI tract which are better".
"We didn't ask pathology that", the doctors respond, "we'll give them a call".
I'm thinking...Really? Really??? You didn't think to ask the question you're certain to get asked by the parents of a child who is hoping their child is getting better and is hospitalized because of an issue with a colonoscopy procedure that you all caused? I realize my irritation is also because I'm angry with the news I just got. The news I was hoping not to get but secretly deep down suspected would be the result.
Lots of emotions are swirling through me. Anger, frustration, disappointment, hurt, pain, uncertainty, and sadness for my little boy. He's had so much pain in his short little life and it's not fair. When will he be healed? Why hasn't he been healed yet? This means at some point he's going to have another colonscopy procedure which is what lead us to this surgery and long hospital stay again. I can't believe this. He doesn't deserve this. I start crying. He's looking at me, so I try to contain the tears and be strong for him. My friend comes and holds my hand to give me strength and support. I'm thankful I wasn't alone when this news came. This is the definite low of the day.
Some time passes and Jenson's coloring starts to look better, and he wants to do puzzles on my iphone. He's always needed my help with these and does at first, but then he figures out how to do it on his own. Yay Jenson! He gives me 5.
He needs to walk again soon (something that has been traumatic each time). I decide to wait until Grandma and Grandpa Ferris (Doug's family) get to the hospital for a visit because you're also wheeling the unit with the medical devices and all the tubes, so it's definitely not a 1 person job. We put on his socks and shoes. He stands up and his legs are a little unstable. I reach my hand out for him to help with his balance and hold it as we walk out of the room (the most he's walked so far!). He then decides to walk all the way down the long corridor and all the way back to the room before his little legs start wobbling and he starts crying from the pain. "We're so proud of you little buddy! Great job!!!" we say. I am proud. Once again he's teaching us all about overcoming obstacles. About hope for the future. God has a way of using Jenson often to teach me and others. My little inspiration.
I ask him if he wants to go see the trains in the hospital lobby, and he says "yes". So we have the nurses bring a little red wagon, set him inside, and wheel him downstairs to see the trains. He is thrilled... he's out of the room and gets to see something fun that he enjoys.
Later in the evening, they again try clamping his line to his stomach. Less than an hour into it, the same thing happens with him freaking out and crying and feeling horrible. They remove it again. Maybe tomorrow will be the day.
I'm thankful for Jenson's perseverance. We need to find some more of that for us, as the journey is far from over.
Kristin
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