Monday, August 11th, 2008

Monday, August 11th, 2008 - Well, it is with a better feeling that I start writing the post tonight knowing that Mattie had a good day. Mattie had a decent night last night as he managed to eat some more mac-n-cheese late last night, and slept fairly soundly (as soundly as one can sleep in a hospital) through the night. Although he awoke early this morning with no appetite and not eating or drinking and some sporadic wretching, we worked with him this morning to get small sips of milk down his throat. After several hours of verbal and physical abuse (of Pete and Vicki), we had succeeded in getting an ounce of milk in Mattie's belly.

However, things started taking a turn for the better when Linda, the ChildLife Specialist showed up this morning to say hi and to ask if Mattie wanted to play. Mattie first refused the invitation to come out to the hallway to play, but soon thereafter made up his mind that "I want to walk," and headed out the door, IV pole in tow, in search of Linda. Mattie spent an hour or so with Linda, playing all sorts of games while Pete and Vicki met with the Clinical Psychiatrist, Dr. Matthew Biel about Mattie's situation. We had a very good session with Dr. Biel and we laid down some preliminary plans/strategies for helping Mattie (and us) during this time in his life. Mattie then returned to the room tired, but a little hungry. So, we got some mac-n-cheese down his throat and few more ounces of milk while Mattie sprawled out on the bed.

Linda had coordinated with Jenny and Jessie, the two art therapists downstairs at the clinic, for Mattie to head downstairs and spend some time playing. So we trudged down to the clinic and Mattie got into things immeidately and quickly forgot about his situation.

He met up with a SSSAS buddy, Lily Phillips, who had shown up with her mom Cecile Phillips, and the two had a ball playing and being six year-olds.


I think the smaller group play with his buddies is really beneficial as it is a less intiminating experience for Mattie.

Mattie was also visited by John Putnam (an RCC buddy) and his mom Grace Putnam, and the two had a great time again, being silly six year-olds and forgetting about the tubes and things for a while. Julie Frye also stopped by and spent time playing with Mattie and building a ferris wheel, as did Kathie Stoltzfus, Mattie's former Occupational Therapist (OT) (Thanks Kathie for the delicious cookies and the tea!). Katie Parker also stopped by to say hi as well. Katie is a former RCC mom who also happens to be a Pediatric PT, who offerred her support and connections at Children's when the time comes for Mattie to undergo his surgeries (Thanks Katie for gifts, the glow in the dark bracelets are a hit tonight!).

Alison McSlarrow was an angel yet again today and came over with supplies, some gifts for Mattie and lunch from Rio Grande, which I quickly devoured. Nothing like cheese, bread, sour cream, chips, fajitas and salsa to comfort the head and stomach. Also, many thanks to Liz Morris, Lois Brown, Katey Henig, Julie and Alex Frye (Thanks for dinner and treats!!!), the Grace and John Putnam, Kathie Stoltzfus, and Senora Johnson (Mattie's spanish teacher from SSSAS) for their kind gifts today!

We also got to meet Julie Andrews. No, not the stage/screen actress, but just an equally lovely lady. Julie is the Assistant Vice President of Patient and Physician Advocacy and International Services, which means she makes sure that each patient has as good an experience as possible while at Georgetown University Hospital. Julie was very charming and reassuring and offerred her help. We can thank Alison for making this connection for us!

Tomorrow Mattie has a MRI (with sedation) some time in the morning. The team here is doing their best to juggle schedules so that Mattie can have the MRI as early as possible during the day (maybe as early as 1:00pm). Mattie will be in the MRI for over two hours and will be sedated (i.e. knocked out) for the entire time. He'll be given Versed before he wakes up since this seems to lessen the negative side-effects as he comes out of the Propofol. We'll spend the night at the hospital again (night #9) as he will have an early morning biopsy on Wednesday morning.

So, today was a good day. It's strange to stop and think about that simple line: today was a good day, but this simple, five word statement epitomizes our life at this point: one day at a time. Although we have heard stories of people who in the face of great challenges, talk about living their life one day at a time, I am now overwhelmed by the magnitude and depth of what that actually means. So, here is to tomorrow and the prospects of it being another good day.