Thursday, September 18, 2008

Thursday, September 18, 2008

This morning began with a visit from Jerrold. Jerrold works at the hospital and is a CT scan tech. Jerrold met Mattie five weeks ago when attempting to do a CT scan of Mattie, and has kept an eye on Mattie ever since. Jerrold is devoted to Mattie and when Mattie is in the hospital, he makes it his business to find a few minutes to come and play with Mattie. Today he brought Mattie a spiderman pen from his trip to Disneyworld. Jerrold is a special person, and I find he is a fine example of the wonderful people caring for Mattie.

After Jerrold left, Mattie and I were sitting on the floor playing with the trains Jenny gave him yesterday (thanks Jenny!). At one point, Mattie stopped, looked up at me and said, "Mommy I was born to die." How do you like that statement? How prepared are any of us to really answer such questions when our children ask? I must admit, I am getting better at handling these existential questions, but I can't say that this doesn't bother me or sadden me. Again, I tried to normalize what he was saying. I told him we were all going to die at some point in our lives, so that his statement was indeed accurate, but that he wasn't going to die now because we are getting all the right care to fight the bone bugs. I turned his statement into a joke and I told him I did not give him permission to die. He laughed and we continued playing.

Mattie had another rough day of vomiting. However, like I stood up to benedryl two weeks ago, Mattie stood up to Ativan today. Mattie told the residents today that he DID NOT want that medicine. So there was NO ativan administered today, despite having the vomiting we did not have the hyperactivity, agitation, and aggression. Mattie is learning, its seems, how to be an active participant in his healthcare. At around 3pm today, Mattie finally was exhausted and took a nap and rested peacefully until 5pm. At 5pm though, he woke up with nausea and is still vomiting as I type this blog. It is interesting though how Mattie seems to have paradoxical reactions to such drugs as Ativan and Benedryl (meaning that he reacts in the opposite way from what they are intended to do). On a side note, we just had a conversation with Meghan tonight (one of the residents). Meghan explained to us that sometimes Ativan is given to help patients who are addicted to alcohol during the recovery process. Ativan is a controlled substance administered by a healthcare provider and slowly helps patients who are withdrawing from alcohol. But Meghan explained that a person on Ativan can have similar behaviors and reactions as someone who is drunk. It did help make sense out of what we saw yesterday with Mattie.

Later in the day we had a visit from Joy and Catherine (two great RCC moms) who are tracking Mattie and supporting us through this process. They came today and delivered us some beautiful glazed donuts that Mattie got to frost himself! A treat for all of us. Thank you both for stopping by and of course for the chocolate! Joy and Catherine tried to convince me to get more rest and leave the hospital. However, for the first time I was able to verbalize one of the reasons why I couldn't do this. In all reality no amount of sleep or anything else for that matter, will help me feel better about what is happening to Mattie and our lives. I am not sure if that makes sense to you as a reader. I know I am not clinically depressed (and yes I feel I can assess this for myself quite accurately), yet I feel for the first time, I can relate to someone who has major depression. Nothing looks, sounds, or feels good anymore. It is almost like time is standing still and I am trapped in a world far removed from the rest of society. The world around me is functioning and thriving, and I am now just an observer of a small part of the world through Mattie's hospital window.

When Mattie woke up from his nap today, we had two other visitors. Danelle (a RCC mom) delivered us a tasty dinner and she had the special treat of seeing Mattie in the PJs she bought him. He loves his cowboy PJs! Then Tricia, one of Mattie's favorite nurses, came to visit him. Tricia was not on duty but came to the hospital to attend a meeting, and was nice enough to stop by, check on Mattie, and share her pictures of her new puppy, peanut with us. That was a special treat, and again representative of the loving hospital staff caring for Mattie.

On the electronic front, thank you Coach Frost (for some helpful advice about anti-emetics), Gail B., Kara Sandoval, and JJ (loved your puppy picture with your brothers and sisters) for your e-mails and Lorraine, Susan, Kim, and Karen for your great e-cards. Bob Weiman sent us a jibjab e-card today with Mattie's grandparents dancing. Georgetown's system is currently blocking my access to certain sites, so we look forward to seeing this e-card when we get home. I am sure Mattie's grandparents will love this! I received a lovely phone call today from a recent graduate of GW's counseling program, Emily W. I have gotten to know Emily quite well over the last couple of years and she is very fond of Mattie. She is brainstorming with Carrie, ideas for Mattie's walk this spring. Emily came up with a wonderful idea for the t-shirts at the walk. Since Mattie loves Dunkin Donuts, why not use this company's colors on the t-shirt. I was thinking of featuring a lovely vanilla frosted donut on the front as a picture frame around Mattie's cute face. You can see I spend a lot of time thinking about donuts these days! Thank you Emily for this idea!

I end this blog tonight with some glorious pictures. Ann sent these to me today! The pictures illustrate SSSAS first graders working hard in preparation for Mattie's carwash on saturday. Thank you first graders for these delightful pictures and for making the time in your day to support Mattie. What a special gift you gave us tonight!

SSSAS first graders (and Ms. Williams - Mattie's Kindergarten teacher) hard at work!