Wednesday, February 18, 2009

Wednesday, February 18, 2009

Quote of the day:

"The life I touch for good or ill will touch another life, and that in turn another, until who knows where the trembling stops or in what far place my touch will be felt." ~ Frederick Buechner

Mattie woke up in a good mood today and was looking forward to going into the playroom. It seemed like this could happen easily because Mattie had no MTP-PE administrations or blood transfusions scheduled for the day. I was looking forward to having a freer day. I don't know why I set myself up like this. I should know that things can't go smoothly for us. It is just not meant to be. Dr. Synder and two residents came in this morning and examined Mattie. Mattie rolled himself up into a ball and wouldn't cooperate with the examination, but Dr. Synder knows how to relate to Mattie. She got done what she needed to do. While she was examining Mattie the residents asked me if Mattie had any more diarrhea today. In fact, Mattie did have an episode about 30 minutes prior to their arrival. But I did not think much of this and of course cleaned up Mattie and did not save a specimen. Apparently this was Dr. Synder's first time hearing about Mattie's bout with diarrhea. The next thing I knew they told me that Mattie would have to be in contact isolation today because he could potentially have a contagious infection. It was almost too surreal. This means that Mattie is quarentined to his room and if hospital personnel come in the room they have to wear a gown and gloves. The residents and Mattie's nurse reassured me that this was not a "big deal." However, this did not sit well with me. So I processed this for a bit, and then asked to see Dr. Synder again. I wasn't even really thinking about myself. The fact that I was exposed to his diarrhea multiple times and cleaned it off of him and the floor. But I won't go there.

Dr. Synder is a very warm and empathetic doctor, so in no way did I want to chew her out, but I did want her to know that this quarentining decision had psychological and emotional ramifications (mind you the residents expressed NO concern about the diarrhea yesterday, so I felt ill prepared today with this pronouncement!). I also felt the need to let her know that the residents should be careful with the terminology, no "big deal." Dr. Synder explained that the doctors meant that this infection was not a big deal from a medical standpoint, because it could be treated. Wonderful! I am happy about this, don't get me wrong. But isn't it funny, that medical doctors do not necessarily see the bigger and more important issue in some cases...... the holistic and mental health ramifications for their decisions. Picture a six year old in the hospital for a week sick, after coming off of a prior week in the hospital undergoing chemo. Mattie thoroughly looks forward to leaving the room, after all our two by four of a room gets very confining quickly. So to tell a six year old who was looking forward to having somewhat of a "normal" day, that he is now quarentined and can't go out and play in the playroom, this is ANYTHING BUT NO BIG DEAL! I felt the need to clarify this terminology and to also let Dr. Sydner know that I was upset and unhappy. In Dr. Synder's usual fashion, she listened and understood. I get the feeling that she really appreciates the struggle we are living with Mattie. Not that any form of cancer treatment is easy, but Mattie's is particularly daunting! Dr. Synder did impress upon me the seriousness of Mattie's situation and that she wouldn't call for the isolation if it weren't needed. But she could understand my disappointment, and that is all I needed to hear.

Linda came to visit this morning and worked with Mattie in our room for several hours. Linda, Jenny, and Jessie rotated again today, and frankly I couldn't survive now with these long days without these fine women. Linda worked with Mattie on silk screen hoops (that are now hanging from our room ceiling), and then they created a large popsicle stick house. While Linda was with Mattie, I bumped into Dr. Cantor. Dr. Cantor, you may recall came back to work this week after being away on maternity leave. Yesterday was her first full day back, she was at the hospital for 24 hours. So this morning she was headed home to see her baby. However, she still made the time to stop, sit, and chat with me about Mattie. I asked her questions about Mattie's bacterial infection situation and she gave me enough information to know that I had to do more research on the internet about this. I am so impressed with Dr. Cantor as a resident, and her competency and the relationships she establishes with the families she works with.

Okay, so you are probably asking, why on earth is Mattie being isolated? Well Dr. Synder wants to assess if Mattie has a bacterial infection called Clostridium Difficile (aka, c diff). In a nutshell you can get this infection from being on high dose antibiotics (which Mattie is!), and the telltale sign is diarrhea. This bacterial infection is highly contagious to others, which explains the isolation. Here is the information I found through a google search: Clostridium difficile, the spore-forming, anaerobic bacillus that causes most cases of antibiotic-associated diarrhea. The organism is indeed infectious; it can easily be spread from patient to patient, and is now on the growing list of antibiotic-resistant organisms. C. difficile's toxins damage the gut wall, causing problems ranging from mild diarrhea to severe pseudomembranous colitis, toxic megacolon, and bowel perforation. Immunocompromised patients are among those at highest risk for severe infection. The organism known as C. difficile inhabits the gut of up to 70% of healthy newborns and 3% of healthy adults, so it hasn't always been considered a pathogen. (This may be why some practitioners don't consider it infectious.) The microbe's destructive nature emerged only after the use of broad-spectrum antibiotics came into vogue. During normal human growth and development, bacterial competitors crowd this slow-growing anaerobe out of the gut of the majority of people. Whatever C. difficile remains is held in check by the gut's normal flora. However, if the bacterial competition is killed off—which is what happens when patients are given broad-spectrum antibiotics—C. difficile can grow out of control and C. difficile-associated disease (CDAD) develops. Symptoms include loose, watery, and foul-smelling stools that smell like horse manure; crampy abdominal pain; and in most cases, fever. For antibiotics to "cause" CDAD, a person must be exposed to the C. difficile organism or already have the bacteria in his colon. Most people who come into contact with C. difficile do so during a hospital stay. Studies show that more than 30% of all hospitalized patients in the United States become infected with C. difficile. Of those infected, 60% are diagnosed after admission. However, we do know that narrow-spectrum antibiotics, such as metronidazole (Flagyl) and vancomycin HCl (Vancocin, Vancoled), rarely cause diarrhea; therefore, these two antibiotics are the drugs of choice for treating CDAD.

In all reality hospitals are scary places to be, because it is easy to pick up all sorts of infections here, and for a patient like Mattie who has a compromised immune system, this environment can be toxic. I encouraged Mattie the whole day to go to the bathroom again, because we needed a sample. I was worried he wouldn't go but he was very helpful. Needless to say, they tell me it will take 24 hours for this culture to reveal information from the stool sample. Lovely!

We want to thank the Bentsen family for a wonderful lunch today. The quiche was delightful as well as all the other goodies. We really appreciate the Bentsen's support and their willingness to help us today. At around 2pm, Anna, Mattie's physical therapist, came into Mattie's room. They had a great session. Mattie now freely accepts Anna, and Anna worked on stretching out Mattie's right leg, since in a way he has frozen his knee in a bent position. Mattie doesn't even realize his leg is being stretched, because Anna was blowing up balloons and Mattie was sticking clothes pins on the balloons to prevent the air from leaking out of them. Matie was engrossed. They blew up about 8 balloons, and Mattie used both hands to reach, grasp clothes pins, and attached them onto the balloons. Anna then put the balloons on the floor around the room, and Mattie had to walk to each balloon. Every time he got to a balloon he could unclip one clothespin off the balloon. The competition was to see which colored balloon stayed inflated the longest. Anna guessed a blue balloon, I guessed a pink balloon, and Mattie guessed a white balloon. Mattie did win!, But he was moving around the room, and Mattie agreed that in the future he would walk to the playroom at the hospital using his walker and not his wheelchair. Anna and I are trying to move away from the wheelchair and build up Mattie's stamina. The session continued, when Jenny walked in. Jenny, Anna, and I pretended we were in quicksand, and Mattie had to walk over to us and save us by pushing us with his legs out of the sand! Needless to say, I am very pleased with Anna's progress with Mattie and this only confirmed to me, the importance of a therapeutic alliance. Anna has built it up, and now Mattie is more willing to try what she presents him. Excellent!

Jenny worked with Mattie on the popsicle house. They had a good conversation with each other, and Mattie told Jenny about the significance of his name (Matthew, gift from God!). Jenny and Jessie tag teamed. When Jenny left, Jessie entered. Jessie worked with Mattie on another ceiling tile for the clinic. Mattie did a Scooby Doo tile with Peter and I before, but today, he chose his most favorite creature to work on. Can you guess it? Yes the cockroach. Let me tell you, right now in our room I have a four foot long cockroach. It is thoroughly disgusting. I took a picture of this thing, but the roach caught a lot of peoples' attention today. I mean, how many people paint a four foot long cockroach?! In the picture, you will see his small model magic cockroach in the lower right hand corner, to give the large guy scale. In the upper right hand corner of the painting, it is a picture of me, SCREAMING at the sight of the cockroach!

I am not sure who I feel more sorry for, the fact that this painting is temporarily in my room, or that this roach will actually be hanging on the ceiling in the clinic for sick children to stare up at!?

This evening, Elizabeth (a wonderful mom we met from Mattie's soccer team) came to visit me to drop off a delicious dinner to us. We want to thank the Murphy family for a tasty dinner, I fell in love with the chicken puttanesca and Mattie really loved the Magic Treehouse book series, valentine's treats, and the special knight and castle puzzle book. In fact, Mattie did each puzzle tonight with Elena, our HEM/ONC resident. They connected over that. Thank you Elizabeth for the support and your generosity.

Katie, was Mattie's nurse today. Toward the end of the day, she started massaging Mattie. It was such a cute and sensitive sight, that I snapped a picture of them together. Katie instantly calmed Mattie down! Katie is another sweetheart. She is a wonderful HEM/ONC nurse and is another nurse who knows how to deal with Mattie's up and down moods. We also had a visit today from Sarah Marshall. Sarah Marshall is a fabulous HEM/ONC nurse, and I so admire her as a cancer survivor. I was in such a state today over Mattie's potential bacterial infection that I mistook Sarah Marshall for Katie and started to ask her questions about Mattie's treatment when she came to visit us. It was embarassing, but I swear there are times I am so tired, that I have to snap myself into consciousness.

Tonight, Jerry and Nancy (the dynamic duo volunteer music team) came by to entertain us. We just love both of them, and Jerry is the fellow who generously gave Mattie a keyboard in the fall. Jerry and Nancy played 'Name that Tune' with Mattie. They wanted to "stump" him. Literally Mattie got all 38 songs correctly. Jerry hammed it up, and Mattie was loving the fact that he stumped Jerry. Dr. Toretsky came by tonight to visit with us, and I think he got more than he bargained for. Mattie was TOTALLY on and animated. Not a Mattie you always see now. But music and art are our modes of therapy. They work and he would be lost without them. Mattie was singing tonight and also popping cupcakes in his mouth. I took a picture of him putting an entire minicupcake in his mouth at one time!

NEWS FLASH!!!! Look at the left arm! It is NORMAL! Mattie slept in another contorted position last night, and rotated the arm back into place. I was SO THRILLED TODAY. I am sure Dr. Bob would share in this victory. I am sure it could rotate again, but the fact that Mattie could get it back into place was a magical sight for his mother's sore eyes. I needed something positive today!

Jerry and Nancy perked Mattie up so. In fact, Mattie wanted Jerry and Nancy to tell the nurses, doctors, and Brandon about the fact that Mattie was able to stump him. It was big news on the floor tonight. In fact, I told Jerry that once he delivered this exciting news to Brandon, that Brandon's mom, Toni should knock three times on the wall so we know she heard the news. I am happy to report we heard three knocks. I of course am saddened that Brandon is still in the hospital, but I can't tell you how wonderful it is to have another family that I can relate to and turn to.

In the midst of all this today, I also had a delightful conversation with a student I met at the hospital. She is interested in becoming a therapist, and we chatted about her educational options. She pointed out to me, that she has observed me through her semester and she admires what I do for other people. I must say I was stunned to hear this. Mainly because I am very focused on Mattie and to me this has become all consuming. Yes professionally I may be a mental health counselor and educator, but in the hospital, all these roles fall by the wayside. In the hospital, I am 'mom!' In any case, I felt truly flattered and it is funny how a nice comment when you are feeling down can turn your outlook around.

Peter came in from work tonight and found a full house in Mattie's room. Peter had a good time singing with Mattie. Peter has a beautiful voice, you should get him singing one day. That is how we met in college we were both in choir. I am so happy that we have passed our love for music along to Mattie. Peter also surprised Mattie with a gift a colleague of his brought back from Africa for Mattie. It is a beautiful gorilla set! Mattie loves it. I then left the room, because I had a professional conference call to make tonight. In a way, the call was a blessing, it got me out of the room and to have a minute to myself. Thankfully Linda helped secure me a quiet place, because it is like grand central station if you work in the hospital hallways.

So what does thursday hold for Mattie? I am not sure. But I do know that Mattie's absolute neutrophil count is still ZERO and he will be getting another MTP-PE infusion tomorrow, along with PT. Please keep your fingers crossed that we are not also contending with the c. diff bacterial infection. I sign off for the evening with the e-mail I received from Charlie today. Charlie wrote, "I have a lot of thoughts about yesterday's blog. First, about Mattie's unwillingness to have people from his outside life spend time inside the hospital. Children do a lot of compartmentalizing especially when things are not going as they wish. I wonder if Mattie feels that allowing people from outside to work and visit with him in the hospital means that he won't get to work with them outside, that they will become part of the hospital people for him (i.e. rather than Mattie getting to go out to school, he will have to go to school in the hospital) especially since this admission seems so long. I also wonder if there isn't some resentment of those people's ability to leave the hospital when they wish, unlike all of you who have to stay there. If Mattie tells them to go, he is in control of the situation; this makes those people more like him. Other people (doctors, nurses, etc) tell him to be where he doesn't want to be, so he gets to tell someone else the same thing. People who tell you Mattie is "mean" just don't get it. They obviously missed the class where medical personnel have to play the patient and are told what to do, have their preferences ignored, are discussed as if they were not in the room, have to walk around clothed in something that is clearly for the convenience of the caretakers and not even get to choose what or when to eat. That of course does not include taking medications, being in pain and having to try to sleep in an environment where a good night's sleep is impossible. A day or two of that is both eye opening and humbling for most health care personnel. You and Mattie have done a lot to educate folks but you can only reach so many and they have to be open to listening. Just like some mental health clients, not everyone is willing to hear and change."