Friday, September 26, 2008

Friday, September 26, 2008

Mattie slept better last night. Was up and down a couple of times, but in comparison to previous nights, last night was a blessing. Well until 7am that is! At 7am, Peter was about to walk out the door to work, and Mattie started stirring and complained he was hot. So before Peter left for work, I asked him to take Mattie's temperature. Sure enough, Mattie was running an 101.8 fever. Mattie is becoming quite good at ascertaining how he is feeling and assessing his situation. Peter immediatedly called the on call hem/onc doctor and Dr. Myers let Peter know that we should bring Mattie right in and that there would be a room awaiting him in the PICU. So Peter and I mobilized into action. I must commend Peter because his mobile packing units he created for the hospital, are working beautifully for us. Needless to say, I never unpack our overnight bag that comes with us to the hospital. It is always ready and waiting for us at home, for moments just like this. Mattie was not happy about the prospect of going back to the hospital today. But a part of him understood that it wasn't a choice.

We got to the hospital today and Mattie and I checked into the PICU. There was only one hem/onc nurse, Tricia, in the unit, and she was unable to be assigned to Mattie, since she had other kids who were undergoing chemo and needed her attention. So Mattie was assigned instead to a PICU nurse. Though these nurses are wonderful in their own right, I could clearly see that Mattie would be better off with a hem/onc nurse. Well you know me, I am not shy or quiet, at least when it comes to Mattie. So I aired my dissatisfaction with this. Later on in the morning, one of the nursing supervisors came in to apologize to me, and told me he pulled a hem/onc nurse from another unit to come work with Mattie. Certainly he did not need to do this, but this speaks to the responsiveness of the nursing care at Georgetown. They truly listen to our needs, I felt better to see that Kathleen, a wonderful hem/onc nurse, was on the scene and working with Mattie.

At around 11:30am, Linda arrived to play with Mattie. But Mattie was sleeping. However, Linda gave me a lovely gift. She watched Mattie for two hours, while I went out of the room with Ann to have tea and some of Ann's delicious banana bread. I should let you know, that today was going to be "my day." A day I was looking forward to. To get out of the house and my routine, and meet a special friend for lunch and conversation. While I was going to be out, Mattie was going to play with his buddy, Ann, have an art lesson from Ms. Pollak (Mattie's art teacher and major Mattie supporter), and finally his buddy, Charlotte was coming over after school. So it seemed like all the stars and planets had aligned today so I could get out of the house. To say I was disappointed that Mattie was sent back to the hospital today is an understandment, and I while riding in the car to the hospital this morning I was about to comment on my feelings, but then I thought about what I was going to say and realized it would probably be hurtful to Mattie. So I kept my thoughts to myself. After all, he did not want to be in the hospital either or sick for that matter.

Having tea with Ann today was very special. Ann and I are what I would call busy moms. We always get involved in as much as possible, and in the process are running 100MPH. But with Mattie's illness, I am forced to slow down, and I am learning by slowing down I am getting the opportunity to cultivate some wonderful friendships. Ann is one of these relationships that I am referring to. As busy moms, Ann and I really never had the chance to connect like we do now. I try to thank Ann frequently for all that she is doing for us as Team Mattie Coordinator. But if you know Ann, then you know her response to me, is, "no thank you is necessary." I told Ann that I continue to be amazed by her passion and commitment to help Mattie and my family. I certainly can understand a family member stepping up to do this, but what explains a friend devoting her time, love, and energy to help us? Ann has her own family, she is the caregiver to her parents, and she just lost her brother to cancer. Yet, despite all the things she manages, she finds the incredible energy to help us and to motivate those around us to be a part of Team Mattie over the long haul. What Ann is doing is such a selfless act, and when I asked her what keeps her motivated to help us, her response is that it is "the right thing to do." Ann told me I would probably do the same thing if the issue came up. I had to think about that, but one thing is certain when I have my down days, Ann is always there e-mailing or calling and checking in with us. I just couldn't let this opportunity pass without saying thank you Ann!. Ann also helped me today examine Mattie's surgery from a different viewpoint. In her perspective, surgery is a great thing, in the sense that it carves out the cancer. The sooner it is removed from Mattie's body the better. Ann said the worst thing would be for a cancer to be inoperable. But with surgery, there is always hope that all of it will be caught and removed. I must admit I have been too absorbed on the physical consequences to Mattie, that I did not really focus on the bigger picture. The big picture of course is survival, and this positive reframing today, made a big impression on me.

Thank you Ann for the dissolvable egg that turns into a toy snake. All the nurses are awaiting Mattie's snake arrival. Mattie was intrigued by the donuts, but still wouldn't eat anything for us today. Dr. Toretsky told me that Mattie was quite dehydrated when he entered the hospital today. Again, that doesn't surprise me since Mattie is basically not eating or drinking.

Ann dropped off a surprise package today for Mattie at the hospital. She told me that the gift giver wanted to remain anonymous. But I worked hard to get the name out of Ann. Thank you A.M. for all the wonderful gifts you sent along to Mattie. It really cheered him up today. We spent a great deal of time opening up and playing with each gift! The blue angel model was a major hit along with the wind up plane. Thanks for your generosity!

Thank you Denise for a wonderful dinner too. Everything was delicious, and Mattie's eyes lit up when he saw all those wonderful treats. The knex car was fantastic and kept him VERY busy tonight. Thanks for thinking of me too with the aroma therapy!

On the electronic front, thank you JJ for your e-mail and Kim, Lorraine, Karen (Happy Biscuit month), and Susan for your wonderful e-cards. Mattie received an e-mail today from a complete stranger. Thank you Jueon from Holy Fire EM church in Alexandria for your lovely e-mail. I am sharing a portion of the e-mail, because I am moved to hear how Mattie's story is impacting an individual we do not even know. "I will say Mattie is born with a special purpose. He is born to be a light and salt to this dark world. A life that is bright and impactful that can challenge and break many other lives, including mine. Only God knows how long this light may shine and how long this salt may be influential... It maybe be for a very long time, or for short time, I can't tell. But I must admit, my 22 years of life is not as bright as or as salty as Mattie's. I pray that this light may continue to shine and impact many more lives and I will also try to be someone who is worthy of seeing such a light. Christ has a way of bringing us all together in His brightness and I see a glimpse of His light through this precious young fine boy. I must say I am humbled and thankful that you guys are continuing to struggle and not giving up. Thank you so much. My church members and I will continue to pray for Mattie and you guys."

I am writing this blog from home tonight. Peter is staying with Mattie at the hospital. He sent me home in order to fulfill Dr. Toretsky's first prescription. This is my first night away from Mattie while he is at the hospital. At first I did not want to go, but I realize I am very tired and run down, and need this break. I am looking forward to a full night of sleep! I end tonight with a fun article I found called Six-Figure Moms. If you are a mom and reading this, then I have no doubt there are times when you wonder....gee, how much would the services I provide at home be worth outside in the market place? Well the answer is you are entitled to a six figure salary! After all, think about this....in a given day, you serve as your child's teacher, advocate, healthcare provider, ombudsman, psychologist, housekeeper, valet, cook, coach, chauffer, etc. We live in a society where being a full time mom isn't valued and actually at times questionned. I have worked with many women over the years who are embarrassed to say they are moms (and do not work outside the home), but in all reality raising a child may be one of the toughest yet most commendable jobs out there. To make a difference in the life of a child is powerful, and has long lasting ramifications for the child and our society's future. I know the fact that I was a full time mom, who worked part-time, has enabled me to step into the role of Mattie's nurse and advocate very easily. Mattie and I knew each other very well, and we are used to spending long hours together. If you are a mom and reading this blog, then I hope you will acknowlegde what a profound job you are undertaking. It doesn't produce a monetary reward, but it has the opportunity to produce something even more meaningful. A happy, loved, appreciated, and a productive member of our society. You make a difference!

http://www.salary.com/personal/layoutscripts/psnl_articles.asp?tab=psn&cat=cat011&ser=ser032&part=par901