Tuesday, November 18, 2008

Tuesday, November 18, 2008

Thank you Julie R. for today's message of the day!

"It is not because things are difficult that we do not dare; it is because we do not dare that they are difficult." —Segoyewatha, [Red Jacket]

It was decided today that Mattie's continuous drip of Fentanol (a narcotic) was going to be shut off. Of course, losing this general pain management system, is always a concern, because I wasn't sure how Mattie would respond and what kind of pain he would be in. Before I tell you more about Mattie's day, I wanted to share a dialogue I had with my parents and Amany on sunday. I told them that I feel at times I write the rated G version of things on the blog. I am not sure why, maybe because some details are not worth discussing, remembering, or better yet are not easy to live through much less write about. Apparently this comment stuck with my dad for the past few days. My dad reflected on the importance of letting readers know just what Mattie is contending with in terms of the equipment and connections that are made to his body post surgery, which makes tranfers from the bed much more challenging. It also gives you a greater appreciation for just how amazing Mattie is. He handles all of this in his stride, with great courage and dignity. So below you will see my recap of everything Mattie has connected to his body this week! It is overwhelming to see, and I wonder if my listing will really capture the essence of what Mattie has been dealing with, but I figure it is worth a try. I also think reflecting on this list should give one great pause, because Mattie has and continues to survive such incredibly debilitating procedures. So here you go, these are all the items Mattie had connected to him this week. In a way it is like the bad or nightmarish version of the song, "12 Days of Christmas." On the first day of surgery, my true love gave to me, one perineural filled with Ropivacaine. You get my drift, and you can tell I am getting punchy today.

1) left arm has a perineural in it delivering Ropivacaine,

2) right leg has a sciatic nerve catheter which was never turned on, but is there for pain in case Mattie's epidural popped out,

3) epidural in Mattie's back for pain management of the leg,

4) Foley cathether for urine,

5) heart montoring device which consists of wires connected with suction cups to Mattie's chest,

6) pulse ox - to assess saturation of oxygen in the blood system,

7) a blood pressure cuff on his leg,

8) a drainage tube for left arm,

9) a drainage tube for left wrist,

10) a drainage tube for right leg,

11) an IV for saline solution, and

12) an IV for a fentanol continuous drip.

In addition to these 12 items connected to Mattie, Mattie is also dealing with a) a bandaged and immobilized right leg, b)a splint on his left wrist, and c) a bandaged and slinged left arm. Thanks Daddy for encouraging me to reflect upon all these connections. Now I get why I am thoroughly tired and overwhelmed with each transfer from a bed to a chair.

Even though it was Jane's day off from the PICU, she was here at Georgetown training nurses. She had a nursing student come and visit with Mattie. Mattie got to explain to Kristen, the student, why he was in the hospital and what kind of surgery he had. He did a great job! As Mattie was reflecting on his surgery, he started asking me questions about Bob. Mattie wanted to know how one learns to become a surgeon, and how Bob developed his skills. Mattie wanted to know if Bob practiced on a dummy or robot. It was a fascinating dialogue.

Anna came to visit Mattie today as well, and helped us transition Mattie to the lounge chair. It was easier transitioning him today, and we did it without giving him anti-anxiety medication. Mattie spent time in the chair for several hours. He had moments of tiredness today, but he did not rest much. Junko came to visit us today and brought Mattie and I a wonderful and delicious lunch. Junko wanted to play with Mattie while I had lunch outside of the room. But Mattie would not allow me to leave. Mattie seems to find comfort in having me around. It was around this time that Linda visited Mattie and I was able to get out of the room. I had a wonderful lunch, a lovely conversation with Junko (I learned this was the first time in Junko's life that she actually assembled 1000 cranes, and I learned how she selected the origami papers and the colors. It was a true labor of love, prayer, and wishes for longevity), and even got a fabulous massage out of this. I told Junko if she ever decides to leave the legal profession, she could make a killing as a massage therapist. After 30 minutes with Junko, I began to actually feel my neck and shoulders. What a special gift today, and there was something very touching about someone taking care of me.

As the day progressed Mattie continued to have more pain. At times intense. Mattie is back on fentanol boluses and morphine by late afternoon. Tranferring Mattie back into bed was an absolute killer, and Mattie is now developing redness on his back that needs to be watched so it doesn't turn into a bed sore. Denise, our social worker, came to talk with me today and she wanted to know how I am feeling about potentially taking Mattie home soon. She said that she is concerned about me and isn't sure how I will manage Mattie's transfers alone. I would have to say I agree 100% with Denise, and it is nice to know I am not the only one worrying about these issues.

Mattie also had a chance to play with Jenny and Jessie today. As usual they brought their creativity into Mattie's room. They created a "Mattie Ocean" bin, filled with foam fish with magnets on each fish. They made Mattie a fishing pole, and he used the pole with his left foot and right hand. It was simply wonderful to see Mattie having such a great time. See the picture below with Mattie and his angels (Linda, Jessie, and Jenny)!

This afternoon, I had the pleasure of reconnecting with Sara. Sara is a former student of mine, and now colleague.

When Mattie was diagnosed with cancer, I contacted Sara in August and asked her to take over my Undergraduate fall class at GW. Mind you this gave her only a few weeks to prepare to teach this class, but she accepted it willingly. Sara brought us an amazing homemade English Vegetable soup. It was wonderful and just makes you feel good. Mattie also loved his happy meal and advent calendar. Thank you for thinking of him. While I was visiting with Sara, we also had a lovely visit from Susan DeLaurentis, SSSAS' Director of Counselor. Susan was the bearer of many gifts for Mattie. A delicious Thomas Sweets shake, a superheros game, and wonderful turkeys from Mrs. Fiske's first grade class. The turkeys are up and gobbling on Mattie's door. The Happy Thanksgiving recorded card with Mattie's friends on it was also super special! Thanks Susan for these wonderful gifts and for your constant support

This evening we had a visit from Bob. Mattie had two questions for Bob: 1) how did Bob learn to do surgery, did he practice on dummies and robots? and 2) if you put a magnet near Mattie's new bones will a magnet stick to his arms and leg? Bob answered both questions and told Mattie they were good ones. We spoke to Bob about various things and also discussed Mattie's increased pain. The trajectory is that Mattie's perineural pain system will be cut in half tomorrow to assess how his arm will handle this. If he tolerates this, then the perineural will be shut off on thursday, with the potential of being discharged on friday. This is met with both excitement and some serious hesitation.

Liza, one of our favorite volunteers, came by tonight to read to Mattie. However, Mattie started developing an intense stomachache, and only wanted to watch the animal planet TV station. So Liza sat with him, until the pain got too intense. The resident came in to assess his pain, and immediately wanted to order Mattie a stomach x-ray. I tried to tell the resident that the stomachache was inevitable because Mattie hasn't been eating much since surgery, and now that he actually ate dinner tonight, he probably had intense gas and his stomach wasn't ready to handle food. Needless to say, we pulled in our HEM/ONC nurses who helped us with the situation, and fortunately after two hours of howling, Mattie is now calm and relaxed. As of tonight we said good-bye to the PICU team and transitioned back to our HEM/ONC folks.

I end tonight's blog with a new term that Dr. Shad told me about, and that is intensivitis. Apparently this is a condition a child and his/her family can develop after spending a significant amount of time in an ICU. Basically the symptoms are a skewed sleep wake cycle, sensitivity to noise, etc. It helps explain Mattie's change in sleeping habits and a host of other issues. Not that having a name for this makes me feel better, but it is nice to know that others have experienced what we are living through.