Mattie had a decent night of sleep on friday. Because Mattie is on all sorts of fluids, Peter and I were up and down all night helping Mattie go to the bathroom. Peter and I are having a competition with each other to see whose eyes could look redder from being so tired. I think Peter wins, but my secret is Visine. Mattie woke up in a very grumpy mood. He was edgy and teary. Thankfully Tricia was our nurse and she knows how to handle Mattie beautifully. Tricia and I discussed the fact that Mattie has been off his depression medication for three days because he has for the most part refused to take things orally. Though he takes this medicine at night, we felt it was important to get it back in his system, therefore Peter administered it to him this morning. Prior to this I had been wondering whether Mattie still needed to take Celexa. However, being off this medication for three days, I have seen the consequences. Without it, he gets edgy, teary, very scared and jumpy.
This morning Peter had some chores to run, and I played with Mattie for several hours. Mattie was in a mood today and at first he did not know what he wanted to do. He wanted to go to the playroom, but I told him it was closed over the weekend. We finally decided to paint his wonderful cardboard plane. We painted it together, and we had fun doing this. Soon after it was painted, Dr. Gonzales came in to examine Mattie. Dr. Gonzales knows how to relate to Mattie and always asks and admires his projects. That grabs his attention. So she looked at the plane and the cockroach beach front property. It appears that Mattie's mucositis issue is doing better. In fact, he did not need morphine all day today. Thank God! Hearing him scream in pain was a total killer. Dr. Gonzales feels that Mattie has a mild case, based on yesterday's screaming, I would love to see what a bad case looks like! Dr. Gonzales let me know that Mattie's Absolute Neutrophil Count is still zero and most likely will need more blood transfusions tomorrow. So we shall be in the hospital several more days.
We had the wonderful opportunity to be visited by Coach Dave today. Coach Dave is the head football coach at Mattie's school, and he is a major Mattie supporter. Dave brought Mattie a Valentine's day gift. I thought that was so generous and thoughtful. It made Mattie feel good that he was thought about today. Mattie loves the bird book and the gigantic growing lizard is already soaking in water and is expanding on the floor in our room! The nurses get a kick out of Mattie, because there is always something growing or going on in Mattie's room. Thank you Dave for visiting today and for all the support.
Our surprise this morning was that Brandon (Mattie's big buddy) was transferred next door to us last night. It is lovely to have Brandon next to us, and unfortunately Brandon is still in a lot of pain from his appendectomy. Brandon and his dad visited with Mattie this afternoon! Brandon is such a lovely teenager, and we miss seeing him regularly now.
When Peter got back to the hospital this afternoon, I left for a few hours and came home to rest. When I got home I called my mom. Isn't it funny now matter how old we are, if something is bothering you, you call your mom? Which is what I did. I was ranting and raving to her about a whole bunch of things. She always helps to put things into perspective no matter the geographical distance. I felt better afterwards, and then took a nap. I headed back to the hospital at 5:30pm and got to see the lego creation Peter and Mattie created. Peter gave Mattie a special Valentine's day present today. Mattie has wanted a lego pirate ships for months now. He finally got it today. I took a picture of the finished product and Mattie basically gave me a tour of the whole ship and its parts!
At 6pm today, Kathie (Mattie's occupational therapist) came to visit Mattie. Kathie offered to watch Mattie while Peter and I went out for dinner for Valentine's day. Everyone should be lucky enough to have an occupational therapist like Kathie in their lives. Because of Mattie's delicate state, Peter and I ate on Georgetown's campus. As Peter and I finished eating, Kathie called me. Mattie was crying hysterically and was calling out for me. So Peter and I came back quickly. As soon as I sat next to Mattie and hugged him, he quieted down. I realized eariler this week, that I can't stray far from Mattie, and I am happy Peter and I did not venture off campus for dinner. Thank you Kathie for bringing Mattie a wonderful cupcake (which he ate!!!) and for bringing us those wonderful chocolate heartshaped cakes! Very special! My valentine's day gift was a night at home. Peter couldn't have given me a better gift. Frankly you can keep the expensive gifts, flowers, and chocolate (okay maybe not the chocolate), because a gift from the heart goes a long way with me. I know how tired Peter is, but despite that he always thinks about me. My friend, Denise, sent me this quote today, and I think it says it all: "Where there is great love, there are always miracles." ~ Willa Cather
I received an e-mail from Charlie today. She wrote: "What a day you and Pete had on Friday! And poor Mattie after such a promising start to have this day turn out so badly. Thank goodness for your alertness and the foresight of your nurse. A testament to your position that Mattie needs nurses who are familiar with his situation rather than just anyone who happens to be assigned to the ward. I chose the quote because I am as always impressed by your ability to filter out the unimportant and deal with the critical and still remember to thank the people who respond when needed. As the doctor said, "I am impressed," I think we all are awed by what both you and Pete do on a daily basis. May today be an easier climb."
As I sign off for the day, I am staring at Mattie's beautiful "Mr. Sun" painting. It is simply glorious. It lights up our dining room! This painting speaks HOPE to me, and literally it gives off an incredible feeling. It is a piece of Mattie that I will alway cherish. Mattie's art teacher, Debbie, inspired something within him and she helped him express something that we all need more than anything now, undying hope! I hope you all had a wonderful Valentine's day! Your love and friendship toward our family is cherished!
1 comment:
My heart goes out to you all. It sounds like this was a better day for your family. I am so glad!
As always, your words are so touching, they bring me to tears. Not tears of saddness, but more like tears of complete awe of your actions. You are nothing short of a hero.
I found one thing you mentioned particularly amazing. Yur first instinct when you needed someone, you called your mom. Mattie does the same thing ...his first instinct is to call out to you!
How amazing it must feel for you to know that you can comfort and calm Mattie by just being in his presence. Now you know how your mom feels. Vicki, realize that no matter how small your actions with Mattie...he feels comfort, calm and a deep sense of love. You are doing an amazing job.
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