Saturday, August 30, 2008

Saturday, August 30, 2008 - Today was a good day for Mattie. Last night was largely uneventful as Mattie's nausea and vomiting did not return. Other than urinating every 2-3 hours, coordinating the capture of urine every 4 hours, Zofran doses every 8 hours, Leucovoran doses every 6 hours, and blood draws regularly, we had an uneventful evening (funny right, after hearing everything we needed to manage). The Methotrexate is exiting Mattie's body but not quite with the regular speed that it should. Last night around 1:30am (I think it was), The Team made three adjustments: they increased Mattie's hydration rate to 165 mL/hr., reduced the interval between Leucovoran doses to once every 3 hours, and added Sodium Bicarbonate to his fluids. This was done since Mattie's Methotrexate level after 24 hours was 7.2 (it should have been lower), the Creatinine level in his urine had risen to 0.5, and the pH of his urine had dropped to 6.0 (slightly acidic, when it should be on the alkaline side). There was no noticeable impact on Mattie for these adjustments, but Peter spent the better part of two hours at 2am this morning understanding and learning about these adjustments.

So Mattie's energy level came bouncing back this morning, which on the one hand is great and on the other hand is tough. It is wonderful to see Mattie acting a little more like his old self, but on the other hand, Vicki and I are left to entertain him all by ourselves, which of course we wouldn't mind if we were not wiped out ourselves. Peter has two analogies that he uses in describing Mattie when he is in this state: 1) it's like watching a lion in the zoo that just paces back and forth, and 2) like an armed torpedo searching for a target by pinging everything. One of Mattie's first projects for the morning was designing a mosaic tissue box holder. We had a good time doing this, and the end product is quite lovely. Thanks Linda for this great weekend idea! You can see Mattie busy at work in these pictures, with a beautiful smile on his face.

Fortunately, we had some visitors today to offset and absorb Mattie's voracious appetite for engaging activities. Mattie's Aunt Lisa, Uncle Chris, and cousins (Nat, Sydney, and Will) from Boston came to visit us at the hospital. They spent several hours with us, brought us lunch, and some gifts (a special thank you to Lisa's friend, Leslie, who gave Mattie a wonderful matching game that will keep all of us busy). Mattie's cousins were just the right medicine for all of us today. Mattie woke up this morning and seemed in a bit of funk, wondering what he was going to do today, especially since his buddy, Linda wasn't here. Then I told Mattie that his cousins were coming to visit, he practically did a dance in his bed with excitement. Nat, Sydney, and Will were all great with Mattie. They played with him, and treated him no differently than they normally would. Again, it is in moments like these in which all seems almost normal once again. Nat, Sydney, and Will are very special kids (and this is not just a biased Aunt talking). Nat told Mattie that he, Sydney, and Will would travel whatever distance today to see Mattie. I thought this was a very sensitive and genuine statement.

Below you will find some pictures of our family day together.

This is a picture of Peter, Mattie, Aunt Lisa, Will, Sydney, and Nat in the hallway of Mattie's unit. For those of you who don't believe that the walls of the unit are VERY blue, notice the picture! It gives a whole new meaning to blue.

I like to entitle this picture... "Georgetown nurses hard at work!" Today Mattie had a picnic outside the hospital with his cousins. We felt it was important for Mattie to get some fresh air and Dr. Synder (our attending physician) and Mattie's nurses all agreed. However, during the picnic Mattie was due to receive Zofran (an anti-emetic). Instead of Mattie having to come back inside, Miki (another one of Mattie's wonderful nurses), came all the way out of the hospital to find us. You can see Miki above bending down to administer Mattie his medicine. Though this sent her out of her way geographically, she did not want Mattie to stop having fun outside. So she willingly and happily accommodated Mattie. Miki is the another fine example of the outstanding nursing care we are receiving. Thanks Miki!

Nat, Mattie, Sydney, and Will in a rose garden near the hospital!

Vicki and Aunt Lisa

Vicki, stopping to smell the roses. Denise, thank you for telling me about the garden! What a nice find.

Uncle Chris pushing Mattie's IV, with Nat and Sydney, and Will in toe. By the way, Mattie can move quite quickly even though he is hooked up to an IV. When you are pushing his IV it is almost hard to keep up with him. I wouldn't want to IV race with him!

Mattie and Will inside a fort they built on Mattie's hospital bed!

Later on today, our family friend, Lorraine, came to visit and brought us a lovely dinner. Mattie loved the pasta, and we loved the wraps, pasta, and watermelon. Thanks for the shakes too and as always your wonderful company. It meant a lot to us! Below you will see a picture of Mattie and Lorraine working on a wooden model of a bulldozer. Mattie assembled it and then painted it later on in the evening. Thanks Lorraine for the dinosaur drawing book too.

On Mattie's electronic front, we want to thank Kim (RCC's director) for her wonderful e-card. Kim sends a card to Mattie each day, and he looks forward to seeing it each time. We continue to be amazed with how Kim seems to find just the right card to perk up our day! Thanks Kim for always thinking of Mattie. Mattie also received a very touching message from Coach Dave (SSSAS' football coach). The Coach updated Mattie about their recent game and he also let Mattie know that he is drinking vanilla shakes now in Mattie's honor. It was a very meaningful e-mail, and I think Mattie likes the fact that he can say he is the youngest member of the Saints Varsity Football Team! Thank you Charlotte for your e-mail, I love hearing what you are up to. Mattie also received an e-mail today from JJ (yes JJ the Jack Russell Terrier). JJ tells us that he misses Mattie and wants him to come home! We are definitely working on this JJ!

I want to thank all of you for e-mailing us as well. Your support and friendship means a great deal to us. Thanks Ann for checking in with us today by e-mail and phone. I also want to thank Denise, our social worker. We told her that we were unhappy with the level of cleanliness in Mattie's unit. Denise knew exactly who to contact to resolve this issue, because today Peter and I witnessed a cleaning of the unit (about 8 hours in duration) like we hadn't seen before. Lastly, we want to thank Chris and Lisa for watching Mattie today for two hours while Peter and I got to walk around outside and get some fresh air. Peter walked me through the Georgetown campus and we reminisced about his days in the McDonough MBA program. I commented to Peter that I never knew our lives would bring us back to Georgetown's campus, not for a paid education (though we are certainly getting an unsolicited education), but for some thing even more important, a means to save Mattie's life. Good night and God Bless all of you and our Mattie.