Quote of the day: "Life is not tied with a bow, but it is still a gift."
I received the above quote of the day from my friend Charlie. I told Charlie, that it is hard to see life as a gift at the moment. Her response was, "As long as we are here, there is hope. Mattie and his spirit are a gift and an example for all of us, as you are." Thanks Charlie!
Mattie had a decent night of sleep on tuesday. Other than the usual awakenings to check his blood pressure, temperature, and bathroom runs. He woke up early this morning because he could hear Peter and I walking around the room, and trying to get ready. It is virtually impossible to tip toe around a 2x4 room. Mattie was hungry this morning, but refused his hospital breakfast. I think I should get a discount from Georgetown, since basically we really can't use their food service. Thankfully, Mattie had homemade pumpkin muffins (thanks Debbie) and banana bread (thanks Ann) to choose from. Mattie and I did some computer time together, learning to spell words, and while playing I was preparing him for the fact that I would be attending a hospital team meeting today, and he would be spending some time with Lesley.
The team meeting today was very helpful. If you thought there were a lot of people at the first team meeting, well then you would have loved today. It was standing room only at one point. There were people there that I did not even know. But of those I recognized in attendance were: Dr. Bob Henshaw (Mattie's surgeon), Bob's fellow from Washington Hospital Center, Dr. Kristin Synder (one of Mattie's oncologists), Dr. Houser (chief of the PICU), Dr. Ved (Pediatric chief of anesthesiology), Jeff Turner (nurse manager of the HEM/ONC team), Dr. Matt Biel (child psychiatrist), Denise Garner (Mattie's social worker), Kathy Myint-Hpu (Nurse Practitioner), Jenny Padden (Art Therapist), Jessie Masterson (Art Therapist), Anna Fragomeni (Physical Therapist), Nicole Droog (Pain Management), and of course Linda Kim (Child Life Specialist) and myself. The meeting accomplished two major objectives in my perspective, first of which was Mattie's coordination of care, and second, a discussion of Mattie's pain management after the next surgery. After a discussion, Mattie will have four different pain control options placed in his body: 1) an epidural (regional anesthesia placed in the spine), 2) a perineural (like he had with the surgery of the right arm), 3) sciactic nerve catheter, and 4) a PCA, which will pump a narcotic into his body on demand. I felt reassured to see all the team members talking with each other about Mattie's case, because the November 12 surgery will be an eight hour long ordeal.
After the meeting, Bob came back to Mattie's room to remove Mattie's splint and bandages. Mattie handled it well but was in some pain. However, Mattie's incision looked good and the blister by the incision had burst and healed (a natural by-product when using dissolvable stitches). Mattie was in some discomfort so he received some pain medication. Mattie refused oral pain meds for about 30 minutes (of which he was crying and uncomfortable), and thanks to Dr. Synder, she rescued us from a very unpleasant situation, by ordering for the pain meds to be administered through the central line. Thank God for small favors! This helped him fall asleep for a little while, and Linda, Dr. Biel, and I discussed Mattie's sleeplessness and how to prepare him for next week.
When Mattie woke up from his nap, he had a visit from Ellen. Ellen brought him a happy meal, and of course Mattie was thrilled by this, and loved the toy. Afterall it has a lot to do with the McDonald's toy, doesn't it?! Ellen also gave Mattie a Webkinz Gorilla, who Mattie named "Cutie." Now Mattie and Charlotte can play with their webkinz together on line. Thank you Ellen for your thoughtfulness and for playing with Mattie today while I got a chance to eat. I thoroughly enjoyed lunch and hearing you and Mattie playing 20 questions.
After Ellen's visit, Anna (Mattie's physical therapist) came for a visit and she was armed with animal shaped water guns. Mattie had a great time playing with Anna and also learning how to move his arm. In fact, I think all the activity today wore Mattie out. He fell asleep at 8pm and is still sleeping. It is a miracle! Below you will see a picture of Mattie squirting (or drenching) Anna with water. Anna was a good sport, and Mattie seemed motivated to learn how to move his arm using the technique Anna showed him.
Next Mattie headed down with myself, Linda, Whitney, and Lesley to the X-ray department to get some pre-op X-rays. He was with his ladies! How many other six year olds travel with four woman at one time? Fortunately we are becoming quite familiar with Theresa, the X-ray tech. She is very patient with Mattie, who was very protective of his unbandaged arm today, and was moving gingerly. You had to see all four of us helping Mattie onto the X-ray table. It was an absolute riot! While getting his X-rays, Mattie was visited by his "big brother," Jey. Jey also stopped by yesterday and gave Mattie a lovely American Flag for Election day. Jey is always looking out for Mattie, and stayed with us until the X-rays were completed. There are times I feel like I am living in a very surreal environment. An environment where people care about you, where you get a lot of attention, and where others seem to take the time to talk with you. After the X-rays were complete, Theresa printed out copies of the X-rays for Mattie on paper. He was fascinated to see his bones and where his tumors are. I of course don't know how to read films, but I have learned enough now (unfortunately) to spot where these tumors are. Theresa also gave Mattie a lovely dinosaur ring and lollypops for being such a great patient today.
As we head back upstairs to the PICU, Mattie decided he wanted to go to the playroom with Linda, Whitney, and Lesley. Linda gave me the time to go back to the room, and catch my breath. Which was VERY appreciated. While I was gone, Mattie told Linda he wanted to make me something. He said I am always with him, so he never has the opportunity to surprise me and make me something. I thought that was very special. When he came back from the childlife playroom, he surprised me with a beautiful painted lamp. See the picture below of Linda, Mattie, and Lesley and then a close up of the lamp!
Dr. Bob Henshaw spent the entire day working at Georgetown Hospital today, but before returning home, he paid a visit to check on Mattie. I updated him about Mattie's arm movement, and the fact that he had a busy and productive day. I know Bob realizes I am very apprehensive about surgery in general, but his calming demeanor is very contagious. He has a way of making me understand that this must be done, and done soon, so that Mattie can begin chemo and the recovery process. I truly believe Bob performed a miracle on Mattie three weeks ago, and though I have my own issues with surgery, I can't think of a more trusted person that I am turning my son over to for eight hours next week. What on earth are the chances that I would know the Henshaw's? You need to understand that Bob's skills are so unique that there may be only a handful of people in the world that can do what he does. Makes you believe in divine intervention!
Toward the end of the evening, Mattie had a visit from Jenny. Jenny showed Mattie how to make tissue paper flowers. Mattie wanted a flower on his IV pole, just like Brandon's (his big buddy). They had a good time with the tissue paper and talking with each other. Mattie even claimed one of Jenny's bracelets for his own since he liked them so much. Thank you Jenny! Below you will see a beautiful flower Mattie and Jenny created together. It is glorious and huge!
We want to thank the Katcher Family for a wonderful dinner tonight. We loved your shrimp, homemade applesauce (one of my favorites!), and of course your special applesauce cake! We appreciate your support.
On the electronic front, we want to thank Brian Boru and Karen for your lovely e-cards and constant support! I end tonight letting you know that Carrie and I have finalized Mattie's wristbands. Carrie let me know that the GW counseling honor society (CSI) plans on purchasing 500 wristbands to start the distribution process. I want to thank Carrie for all the work she is doing on make this wristband project a reality. I always felt Carrie was a talented doctoral student and TA, but now I am getting to know her as a person, and her depth, sensitivity, and compassion overwhelm me. Thank you Carrie and CSI!
No comments:
Post a Comment