Plus 21

Here I sit once more on the parent bed in our unit room, looking at those all to familiar COP lights, wondering if this will be one of my last nights here on the unit. One of my last posts from a dark hospital room. Christian is doing so well and we are just ‘chomping on the bit’ to get out of here. He is completely off all of his sedatives and narcotics and his NG feeds are increasing in volume. We are extra cautious with his weight since we have been in the ‘starving’ mode too often this past year. I am very anxious to get him to a good solid weight where he can have some meat on his bones, fat on his bum and energy to spare. The massive doses of chemotherapy, multiple surgeries, bowel obstruction and general malaise have left his taste buds on vacation. He says he is hungry and constantly asks for food, but the minute he smells it or tastes it he makes this funny face and immediately spits it out. So the eating will be slow but we are very thankful for his feeding tube. He was not so happy yesterday when we had to have it replaced because the old one blocked up and was no longer any good. Of all the things he has had to endure over these past months the NG tube insertion is by far one of the worst. Most of the other horrible things seem to have a lot of sedatives and pain medications associated with them so he does not remember much, but those darn NG tubes will probably give him nightmares until he is 20! I can only imagine what it would feel like to have a large piece of plastic shoved up my nostril, down my nose, down the back of my throat finally ending in my stomach – wretched.

How Christian feels about having and NG inserted

Trying to unclog his NG tube with Pepsi!!!! I told Christian his grampa would be soooo proud!

I am very grateful that he doesn’t seem to have any memory of these past few weeks. I ask if he remembers the days that he was throwing up blood or when his throat was so sore all he could do was spit. But he looks at me and thinks briefly and says, “no – not really”. So they will be horrible memories that will bother me for a long time but they will not haunt him – gracefully. Our only other setback these days are his intense episodes of bone pain. Whether they stem from all the drugs he has been on, growing pains, his bones creating more blood products or from too much movement – they hurt badly and don’t seem to respond to any pain medications. This being said, as I write this I think of our good friends the Phaneuf’s whose son, Jayden, has recently completed his chemotherapy treatments (and I am happy to say is in remission!) but has lost the movement and use of his legs. So while I feel bad for Christian and the pain he experiences – it is a joy that he is able to experience pain. Because I know that Jayden’s parents would want the chance to calm Jayden’s tears and try to ease his pains.

Hanging with Evelyn at the hospital

Grateful, thankful and joyful are emotions I want to find each day. Chris and I were talking on the phone the other day – I had been at the hospital and had spent a horrible sleepless night – I was angry and Chris asked me why I was being so negative about everything and I realized that I had allowed myself to slip into a tight sock of negative emotions. When something happened I immediately put on my black colored glasses. Glasses that complain about treatments, lack of sleep, hospitals and everything else that was making me grumpy. Of all the words I hear in a day I can still here him saying to me, “why are you so negative?” And I don’t know. After all we have been through you would think I would wake up in the morning and kiss the ground. But I don’t. I am going to try and remember tomorrow morning to put on my rose colored glasses and see if things look any better J

Nurse Meghan and Stacey sword fighting with 'General Grevious"

The doctors say that we may get to leave the hospital this weekend. As soon as they feel that he is medically stable then he can go. I know he will thrive once we are at home and he is with his toys and his family and his house – he will be so much better. Our family will be so much better. We can finally have some peace and relaxation in our days and not wonder who is going to stay at the hospital at tonight. We no longer have to ponder what treatments are coming up and what days we need help on. We can, however, begin to wonder about what fun things we will do in the coming days. Where will go on a warm trip? When can we go to the zoo and see the penguins? When can we head back to the pool and sit in the hot tub? His central line will have to stay in a just a little while longer until we know he won’t need any more blood products. They will surgically remove the line when we are coming to the hospital only one a week for blood tests and check ups. Then we can really hit the water and the beach. So here’s hoping this weekend involves a family get together complete with good food, lots of laughs, lots of cuddles, lots of family and most of all thanks to our God.

Christian's "Life Saving" surgeon  Dr. Mary Brindle - how do you thank someone for saving your son's life?

Today I am thankful for:

1.     Chocolate chip cookies

2.      Triathlon – might help me get in shape again

3.     Christian’s body hugging jammies – so cute when you’re skinny!

Christian giving Evan one of his irresistable "i love you" kisses!