Thursday, August 14th, 2008

Thursday, August 14th, 2008 - Good news: Mattie is home! We arrived home today around 3:00pm and just happened to be greeted by JJ the Jack Russell Terrier. First, let me back up a bit. Last night was going well with Mattie eating a yogurt tube, chicken nuggets, ice cream, etc., until around 11:30pm he started vomiting. This was disconcerting since Mattie had been doing better than ever and we were all hoping that he would stabilize and be ready to go home on Thursday. Mattie threw up a few more times before we could get the Zofran in him, which calmed his now empty stomach. It's simply amazing that between last Thursday night and today, that this kid went through two sets of chemo drugs, recovered, countless blood drawings, a three hours long MRI under sedation and then a CT guided biopsy (think a really long needle penetrating your bone) also under sedation, and still has the energy and spirit to smile. Amazing.
So Mattie slept as soundly as one can sleep when in an intensive care unit and after the vomiting at 11:30pm, we only were woken for vitals at midnight, bathroom run at 1:30am, vitals at 4:00am and blood drawing at 5:00am. But, the vomiting stopped and Mattie was not put back on the IV, which I think was a real relief for him and an even bigger relief for Vicki and me.

We also had to change his bandage today (his central line dressing needs to be changed weekly, and today was the day), which was not a good experience. Although we got through it and Vicki did an excellent dressing change, we had to spend over an hour and a half arguing, cajoling, threatening, reasoning and pulling out every tactic in the book to get Mattie to cooperate with us. We finally succeeded in getting Mattie to go along with us and it was successful, but the emotional anguish was almost too much to bear. Mattie was just afraid and kept asking to be "knocked out" for this. It was hard to watch the fear and mistrust in his eyes and the hysterical state that he worked himself into in a short period of time. Fortunately for us, Linda was on the scene and was instrumental in facilitating the process. Many thanks Linda once again! For those of you who haven't met Linda yet, she is pictured here with Mattie.

So, we got the dressing changed, our discharge papers, we packed up the truck and we headed on home. But before we left, we hugged all our nurses. Mattie did the same! I can see these ladies are becoming like family. They see us during the best and worst of times. Mattie was happy to be home and a little more relaxed, but the old Mattie, full of life and spunk, still has not appeared yet. We have been prepared that his counts will likely drop next week and that he will get lethargic.

Meanwhile, at home, was waiting a mountain of cards and gifts for Mattie. Mattie perked up quickly and once in the door was immediately looking for the packages. He insisted on opening every single one of them this afternoon, so what were we going to say. We were once again blessed with some many wonderful things for Mattie and even Vicki, that we cannot begin to say thank you for all of this. Mattie got a iPod from his kindergarten class (KW), which is really, really cool, including a specialized holder and headphones for it. I just have to figure out how to use it and load it up with content. The inscription on the iPod says, "KW loves Mattie!" That inscription says it all and speaks volumes about the type of community we have in SSSAS. In addition to the iPod, Mattie also received an enormous balloon-a-gram today from "everyone who loves you." Peter and I suspect this is from our SSSAS friends as well. Thank you! These balloons can't help but bring a smile to our faces. Bob Weiman, Mattie's lower head of school, also sent Mattie some more magic tricks by mail today. Mattie looks forward to learning them and surprising you all with them!

Alison was also a love once again and brought us dinner from Rio Grande. Thanks Alison! Also, the Let's Dish Meals arrived today and are frosting nicely in the freezer, so many thanks to John & Jeanine, Pat & Annie, Kelly, Charon, Wasfi, Chris and Suzanna, Tom & Casie and Joe & Steph, who are all fellow Arthur Andersen co-workers of Pete.

So, we are home now. It's still so surreal for me being at the hospital for 11 days, and living our "new" life completely within the walls of the Ped ICU, getting bad news, getting little sleep and being solely focused on Mattie and his health, and then heading home, to that which was our "old" life, and one that has irrevocably been changed. The walls here are the same, the plants have grown and floor is littered with bags of things we brought home from the hospital, and although this is home, I think a little piece of us is still back at the hospital. I guess it's a feeling that we will adjust to over time, but it is one I cannot explain.

So tomorrow, Mattie and I are going for haircuts that this time will be a lot shorter. Mattie's hair should start falling out within the next two weeks so to minimize the quantity of lost hair we are going short in length. Also, Deb Pollak, Mattie's Art Teacher from SSSAS is scheduled to come over in the afternoon and do art with Mattie. Mattie was scheduled to do a summer camp with Ms. Pollak, but was diagnosed with cancer before the camp started. Deb has been following Mattie's story now for weeks, and knows how art brings a smile to Mattie's face. Also, between 4 and5 pm a nurse from OptionCare, a medical supply and nursing outfit, will be here to walk us through the box of medical supplies that arrived today as well as the procedures for keeping Mattie's "Sparky" clean.