Saturday, September 6, 2008

Saturday, September 6, 2008 - Today started off bad, continued to be bad, but appears to be ending up better. Mattie spent most of the day feeling nauseous and vomiting (be that dry heaves or small amounts of digestive fluids). As of the writing of this blog post, Mattie has only eaten some mac 'n cheese and some small amounts of water over the last 2.5 days. Mattie is having a different experience with the Methotrexate recovery than he did last week, which everyone tells us is not unusual (i.e. kids recover differently on a dose by dose basis for each drug). While on the one hand it is comforting to know that lots of kids experience this, from my perspective (and Vicki's) it is unnerving and only adds additional angst, fear, and stress to an already awful situation.

When Mattie gets the Methotrexate, we have a combination of drugs to help fight the nausea and vomiting (emesis). Fortunately, Mattie is continuously being pumped full of fluids so we remove the threat of dehydration, but the vomiting becomes a wicked cycle that will simply continue until we break the cycle using the drugs. So, between Zofran and Ativan, we finally found the right balance this afternoon, which succeeded in making Mattie extremely relaxed (i.e. knocked out), but also calmed his system just enough to break the emesis cycle. After our experience with Benedryl yesterday we are focused even more on making correct and conservative decisions about how to best mitigate Mattie's symptoms. I feel this places us in yet another untenable situation where we as parents are forced to balance the desire to help Mattie recover with the least amount of pain, against make sure we are properly medicating him. The nurses and doctors have come to realize that both Vicki and I are getting smarter and smarter about the "tools" they have to treat someone like Mattie, but also that Vicki and I know Mattie the best and what his system and body are saying to us. For me, I welcome the chance to channel my apprehensions, fears, concerns and anger into performing analytical analyses of medications, pathways, CBC reports, UAs and a variety of other medical topics to help Mattie (it also distracts me from thinking about the emotion of all of it).

Today, Mattie had his buddy Charlotte visit along with her mom, Ellen (who by the way ventured out into a hurricane to see us... and if that's not devotion I don't know what is), who also brought lunch for us, some gifts for Mattie, and kept us company for a few hours. In spite of Mattie being in a foul mood and him periodically vomiting, we enjoyed seeing Ellen and Charlotte. Also, Mattie opened up a few gifts from Grant and Miranda Elliot this morning that I brought back from work on Friday. The Transformer was and continues to be the big hit of the day (I have to admit it is cool), so thanks Grant and Miranda for everything! Also, Mattie opened gifts that his SSSAS art teacher, Debbie Pollak sent along. Debbie, the angels are hanging over Mattie's bed and look great! It is nice to know there are angels looking after Mattie.

Mattie continues to be a member of the e-generation as he gets double digit emails and electronic cards each day. Mattie is even trading emails with JJ, who to the best of my knowledge is the only Jack Russell Terrier I know who is on email. Thanks Kim, Lorraine and Karen for the e-cards as they bring back Mattie's great smile when he sees them online. Thanks Alex for the beach and rainbows pictures! Also, thanks Rev. Rosemary (SSSAS) for your kind email and offer to come see Mattie as we will take you up on this offer.

Last, thanks to Christine and James Cooper for schlepping through a hurricane to bring us dinner. The pasta was devoured, the salad finished off and several of the "Mattie" cookies have disappeared! Also, the scrap book idea is brilliant and Mattie is also photo-documenting some of his creations from this admission as we speak.

So, tonight we continue on Zofran, Ativan as needed and hydration with the hope that Mattie both keeps his food down and that his Methotrexate level drops to 0.1 so we can go home.

Once again, many thanks to all those who think about us, pray for us, send us their messages of love, give Mattie gifts, worry about us, deliver us meals, hold bake sales and car washes, send e-cards at midnight, call daily and bring Dunkin Donuts coffee. It is heartwarming and truly overwhelming that so many people make so many efforts to support us and to take care of us! We are blessed.