Thursday, November 13, 2008

Thurday, November 13, 2008

Quote of the day (Thanks Liza!): Where there is faith, there is hope and where there is hope, there is everything.

Before I begin today's posting, and I will try to make it a continuous posting like yesterday, I want to wish Peter a very Happy Birthday! Unfortunately we are in the hospital, and Peter also has to work today, but we are celebrating his special and milestone day! Bob gave us a wonderful gift (being disease free at the moment!) for Peter's birthday. With this disease, we are learning to appreciate whatever gifts come our way, and take things one day at a time. HAPPY BIRTHDAY PETER!

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8:30am: Last night Mattie experienced some pain and Dr. Natarajan (the PICU intensivist) was on top of things. She changed the pain orders a bit, and had Mattie go on a continuous drip of Fentanol. Mattie is very sleepy today, but is without pain. I understand the importance of the first 48 hours post surgery, and I attended the PICU rounds this morning and heard how Mattie's case would be managed today. Mattie right now looks very puffy, and he is retaining more fluid than he is putting out. So they are giving him a diuretic to manage this issue. In addition, they are monitoring his lungs and it is their hope that decreasing the level of fentanol (a narcotic), will help with his breathing. He is also experiencing a fever and high blood pressure, but I feel that Mattie is being monitored very well, and is comfortable.

I was remiss last night, because I want to thank the Phillips family for a lovely dinner. After Mattie was finally settled for the night, we realized that we needed to eat something. Thank you so much for the great food and for supporting us last night!

I received so many wonderful e-mails yesterday! I agree with many of you, Mattie and Bob make a good team! I wanted to share an e-mail with you from my friend, Grace, an RCC mom. I am so happy to hear from many of you that you enjoy reading what others write to me. I find the e-mails all of you send to me so comforting and I am happy that you feel these e-mails connect you to others in our caring community.

Grace wrote, "Vicki and Peter -I am thinking of you so much this morning; Mattie will be in my constant prayers today. I know those will be the longest eight hours of your life, but here are some positive things to think of during that time. Vicki, you mentioned that Mattie said that he was bored of you and wanted someone else to be his mommy. Believe it or not, this is a compliment. Most children in Mattie's shoes would be so consumed by their illness that their every thought would be about their illness and what was in store for them as a result of the surgeries, etc. But you have done such an amazing job with Mattie by distracting him from and informing him about the medical issues he faces, that his biggest complaint to you is about being bored. Most kids in Mattie's position would be so angry at their parents for hooking them up to machines and giving them medicines that make them feel bad and submitting them to surgery that disables them. But instead, Mattie isn't sad or angry at you, he's just bored like any other kid. And believe me, on any given day, my kids would gladly trade me in for our wonderful babysitter. Babysitters and art therapists have the luxury of doing fun things with your child with no responsibility to do the hard stuff that parents must implement and enforce. Who wouldn't want to be with the person that only does fun things with them? Mattie's a smart guy and wants to capitalize on the fun he's having--bring on more art therapists with all their goodies and fun projects! Again, this is a wonderful tribute to you and is another example of you being so effective in distracting Mattie. He's not spending his time worrying about what's happening to him. He just wants to have more fun! He's having fun! That's incredible.I imagine you're worried about how the lack of mobility will affect Mattie's mood, outlook and recovery. But just look at how well he's adjusted to being confined to hospital already; again, he's having fun! Kids are very resilient and malleable, and Mattie mirrors your positive, calm attitude which is so important in the recovery process. And remember, you have had a huge network of friends and family helping you out, and you know what? We're not going anywhere. We're here for the duration; we're going to overstay our welcome, and you'll have to push us out before we leave, and then we'll do so kicking and screaming. We are a force so united and dedicated to helping you and Mattie through this. We'll collectively figure out ways to keep him entertained with his new physical challenges. You and Team Mattie are yin and yang; we compliment each other and thrive on each other's energy. Your strength and determination feed us such a positive energy that has caused us to literally refocus our lives and stop and reevaluate what's important and cherish our loved ones. We hug our children a little closer, a little longer and don't get quite so mad when the silly hurdles of life get in our way. And we in turn, hopefully succeed in returning the energy you give to us by helping you and Mattie stay entertained, well and upbeat. Try to focus on how happy Mattie is now and know that he'll stay that way because the things that are making him happy aren't going to change. Despite his new physical challenges, he'll still have the most fabulous parents on the planet and family, friends, and wonderful hospital staff who will dedicate themselves to keeping Mattie happy and strong. Lastly, God works in mysterious ways. I firmly believe She :-) is out there watching over your family. When I saw that stunningly beautiful sun painting that Mattie had created, I thought..it's the Resurrection Sun! That sun symbolizes so much-- not only your "son" as you mentioned, but the Resurrection sun, the symbol of where you found a good place for Mattie to go to school and established life-long friendships. Everything is coming together; Barack Obama could take a page from your book to see how people from different nations can come together as one and unite for a great cause. And Mattie is one great and wonderful cause, and we will never stop fighting for him.

11:00am: Dr. Synder came to visit Mattie today, and she suggested that Mattie get repositioned since he was hunched over and his hips looked very uncomfortable. She called Anna (Mattie's PT) and within minutes, Anna, Kris (Mattie's PICU nurse), Linda, Dr. Synder, and I were helping get Mattie repositioned. After about 30 minutes, we finally found a comfortable position. While repositioning Mattie vomitted, probably because we are moving fluids around in his lungs, which is a good thing. Mattie is now resting comfortably. But as usual, though Dr. Synder is not on call this week on the PICU floor, she made a special visit to say hi and to see how she could help us. We are very fortunate to have an outstanding PICU nurse helping us, and Anna and I are now strategizing ways to help Mattie physically move after he has two days of bed rest.

4:00pm: Well my intention was to write throughout the day, but Mattie's left hand is bothering him and he wants me to continually massage it all day. I haven't been able to leave the room today because he wants me around. I guess there is nothing like having a mom around when you aren't feeling well! Alison came to visit, in the hopes of giving me a break from the room, but Mattie needed me around so I did not leave. Thanks Alison for the hot tea (which is helpful since I am keeping Mattie's room at a frigid 65 degrees because of his fever), and for our good chat. At around 12:30pm today, Bob requested that Mattie's perineural pain management system be shut off in his arm. Mattie is unable to feel his left arm or have feeling or movement in his left hand. I assumed it was because Mattie had a bone graft in the left wrist, so I wasn't too concerned about this, until others around me showed concern. However, after the perineural was shut off for an hour, Mattie began to experience pain in his left arm, and slightly moved a finger on his left side. Bob is coming to visit Mattie later today, so I we will get his assessment of the situation. In the mean time, the buzz of Peter's birthday is around the hospital. Jenny designed a beautiful Red Sox greeting card (see the picture) for Peter and everyone signed it. Linda brought Peter balloons and cupcakes from the Georgetown Cupcake store (see the picture). So despite not being at home, the hospital staff is trying to make this day special. It is our home away from home. Thanks Jenny and Linda!

5:15pm: We had a visit this evening from Bob. Bob examined Mattie's hand and explained why Mattie is unable to move his fingers or have sensation in his left hand (other than the obvious of which Mattie had major surgery on his left wrist). While performing surgery on Mattie's wrist, Bob had to move aside a particular nerve, a nerve that is involved with hand movement. Bob explained that in order to maximize pain management, he placed the perineural near this nerve in question. Which would explain the numbness and inability to use the fingers in the hand. Mattie continues to rest comfortably and we are now settling down for the evening and headed to enjoy a lovely turkey meal sent to us by the Smith family (a SSSAS family, who we don't know officially, but I am beginning to see we are all a part of this greater family). Thank you also for the special cupcakes. We are celebrating tonight! You can never have enough cupcakes.

8:20pm: Mattie is resting peacefully, and Peter and I are simply exhausted. So we plan on winding down now. Though we have come to understand that you really can't sleep in a hospital, well unless you are medicated. In any case, we wanted you to know that Mattie is comfortable, Peter and I are eating cupcakes, and planning for our visit with Dr. Shad, the chief of the oncology practice at Georgetown tomorrow. It has been a full day, but we couldn't sign off for the evening without thanking all of you for your e-mails and support. In Grace's e-mail above she says that Peter and I inspire Team Mattie and others, but this inspiration goes two ways. I can't tell you how blessed we feel to know that we have all of you behind us and are walking this journey with us each day. The fact that Mattie's story has touched your life in some way and you keep visiting the blog is a special gift during a very challenging time for us.