Thursday, February 19, 2009

Thursday, February 19, 2009


Quote of the day:

"We cannot live for ourselves alone. Our lives are connected by a thousand invisible threads, and along these sympathetic fibers, our actions run as causes and return to us as results." ~ Herman Melville


Mattie had a decent night of sleep on wednesday. He finally went to bed at midnight. He was very excited from his visit with Jerry and Nancy last night. Their visit was the last thing he spoke about and the first thing he talked about this morning. Tricia, his nurse, knew that Mattie beat Jerry at 'Name that Tune,' and so did Linda and Jenny. Mattie was thrilled to see how the word traveled around the hospital!

Of course my main issue today was finding out about the stool cultures and tests. Mattie spent another day in contact isolation! It felt like we waited an eternity today to find out the results. I think Linda came to find me in the parent lounge around 4pm to tell me the good news. Mattie does not have any bacterial infections. I of course was happy about this, but I did not realize just how happy I needed to be by this news. I received an education today about what would have happened to Mattie if his results came back positive for C. Diff. Let me tell you it would have been a VERY BIG DEAL! Basically in a nutshell, if Mattie had C. Diff, they could treat it with antibiotics. That part is easy, but the part I did not know is that Mattie would then be in contact isolation for THREE weeks after the diagnosis! Well I was stunned and livid, because no one prepared me for any of this. Once you have been diagnosed with C. Diff, you are then followed for three weeks, and have to provide a stool sample once a week for three weeks. We would do this until the stool culture came back negative three times (meaning that no C. Diff is present), So during this time Mattie would remain in contact isolation. Actually this could go on for weeks in my guesstimation, especially if the cultures do not come back consistently negative three times in a row. Mind you Mattie is able to leave the hospital and live at home with C. Diff, but when he would come to the clinic or the hospital (which is every week), he would be in isolation. Well learning this information in piece meal made me very unhappy today. I am not the kind of parent who deals well with these kinds of surprises. Also based on Mattie's history and current emotional sensitivities, it would seem to make sense that alerting me so I could adequately prepare him would be vital.

So today I started composing a formal e-mail to the director of the HEM/ONC practice, because to me two things need to be sorely addressed. Despite my best efforts yesterday, the doctor on call today also used the terminology, "no big deal" with me. I corrected this doctor today and told him why it was a big deal to me. However, I could tell my words and comments fell on deaf ears. He could care less what I was saying, and frankly I think if he could keep all the children locked up in their rooms he would. Rather shocking coming from a person who wants to devote his life to curing children with cancer. So the first issue I have is how news is communicated to parents and their children. I also think it is VERY judgmental to say something is "NO big deal" to a HEM/ONC family. You would be surprised what constitutes a big deal to me after I have had little to no sleep in 7 months, had little to no exercise, and I could go on. How dare someone tell me anything about this nightmare isn't a big deal. The second and more important issue is I feel misinformed about the treatment and follow up with the C. Diff infection. I was lead to believe the treatment of such an infection would be simple, just change the antibiotic cocktail. I had no idea that the isolation would continue for three weeks. I feel this was something I should have been made aware of right away. I realize I can't prepare for everything, but once you start testing Mattie for something, I need to be made aware of the entire process, so that I can better prepare myself and set expectations for Mattie. I think asking a child to be in isolation (though I understand why it needs to be done) is very hard, especially when he is used to certain freedoms in the hospital. So it seems to me educating parents about the process will mitigate a lot of the feelings I am having right now.


Despite being quarantined to his room, Mattie had a super active day. He played with Linda, a volunteer, and Jenny today. He has a visit from Sally the story lady, and heard a wonderful story, which we acted out about a prince, a princess, and a dragon. Mattie played the dragon. Sally is just so gifted at bringing a story to life! This afternoon, Mattie also had a visit from Anna, his physical therapist. We learned that it was Anna's birthday today. With this news, Mattie offered Anna one of his cupcakes (a major gift, since he doesn't like sharing cupcakes!), and sang Happy Birthday to her. I took a picture of this dynamic duo together.


Anna, Linda, and myself had a very active physical therapy session with Mattie today. He got up and was walking around with his walker, and played various games. At one point there was even a bubble rocket on the floor in our room, and Mattie was stomping on the rocket, sending it in the air and bubbles were flying everywhere. I tried to capture the moment. In the doorway of the picture, you can see Brandon looking on at Mattie's progress!





For all of you who are following Brandon's story, he left the hospital today. He was discharged but still is having pain, trouble walking, and so forth, but we are hoping time at home will make him feel better faster! We will miss Brandon and his family deeply, but we are happy they can leave the PICU behind.

After Mattie's session with Anna, Danelle (a friend and RCC mom) came by to drop off lunch. Danelle had an absolutely brilliant idea today. She got Mattie breakfast foods at IHOP. She brought fresh waffles, eggs, and bacon. Mattie ate like a champ. He ate a half of a big waffle and a lot of bacon. It was a great lunch, and we actually sat down and ate lunch together, because he was motivated to eat. This rarely happens anymore, so it was wonderful to sit and have a conversation together. Thank you Danelle for this great and creative idea! It worked.


Jenny came by this afternoon, and Mattie built some more popsicle structures, and also worked on a box project. They also talked about a lot of different things. Having Linda, Jenny, and Jessie around really breaks up the day, because I would have lost my mind in the room for two days straight. However, even with help, I don't stray far from Mattie's room, because Mattie will sometimes ask for me, and therefore, I don't feel the freedom to leave. I am always in constant hyperalert mode, waiting for the next shoe to drop, or the next issue to advocate about! But the main problem is there is NO where to go on the floor for peace and quiet. If you are in the hallway, you are target for noise and conversation. There are times you just want to be alone, and in peace. This is something missing about the floor. Linda is working on a lego project in March, with the idea that you can design your ideal hospital out of legos. I know my ideal hospital would have a serenity room, a place where you can escape to without being disturbed.

This evening, I was visited by the Burt family (an SSSAS family). Chandini delivered us a wonderful Indian food dinner, and I had the lovely opportunity to meet her daughter's Charlotte and Isabella. They brought Mattie homemade cds with meaningful music to their family, cards, and an adorable webkin chicky. We enjoyed your dinner tonight, and this brought me back to my college days, since one of my roommates introduced me to Indian food. Funny how tastes and smells can bring you back in time. Chandini and her daughters said a prayer for our family and Mattie while visiting which was lovely! We thank the Burt family for their thoughtfulness and support tonight.

When Peter arrived after work, Mattie was eager to build a lego structure with him. But I can tell that Peter and I are both super tired tonight. Peter puts in a full day at work, and then a full night at the hospital. It is really too much and beyond any normal human endurance! I had to make some phone calls tonight, so Peter has been entertaining Mattie for several hours this evening. As for Mattie, he had another infusion of MTP-PE today. He handled that very well. No reaction. Mattie's ANC climbed today to 12. It has been holding steady at zero for a week now. I hope it continues to trend upward. But the doctor is telling me it will take a few days! This doctor also told me that Mattie really shouldn't be going to the playroom with his counts so low. I tell you, I just don't know how to handle this mixed information. Some of the HEM/ONC doctors allow Mattie in the playroom with a mask on when his counts are low, and others don't. Seems to me you want to book your hospital stay when you have a reasonable doctor on call! So though we do not have contact isolation anymore, while this doctor is on call, we have a different form of imposed isolation. As we head into friday, Mattie has more physical therapy in the afternoon, and then I believe Chris, from the Georgetown Chemistry Club is coming in the afternoon to work with the kids. I am hoping Mattie will want to participate.

I end tonight with an e-mail I received from my friend, Charlie. Charlie wrote, "I was really concerned when you emailed me that Mattie was going to be in isolation. I felt, as you did that he was already isolated from friends and family by being in the hospital and to further restrict his movements could be really traumatic. I was therefore thrilled to hear how well it was handled and how everyone pitched in to make the day pleasant for Mattie. He got in a good "dose" of physical therapy even in his small room. Just goes to show what determination and creativity can accomplish. In spite of that I hope the isolation doesn't need to go on too long and that you are "free" to move about the ward again soon. One other comment, I don't think you or any of us, are ever fully aware of our impact on others. You were complimented on your response to others at the hospital and yet it surprised you because you were in "mom mode." Often when we communicate with others we are unaware of the impact of that communication and of the way that it is delivered. While in the hospital, you and your family have felt this in both good and bad ways; it speaks highly of you that even when you are not consciously working to make a positive connection with others, you do so."