Wednesday, December 10, 2008

Wednesday, December 10, 2008

Mattie developed a bad headache last night, he looked white as a ghost, and by midnight, as I was tranferring him into bed, I noticed he felt hot to my touch. By midnight, I was thoroughly wiped out from a long day (or maybe from a long five month ordeal), and there was a part of me that did not even want to take Mattie's temperature. But I knew that would not be a good or safe idea. So out came the thermometers. Mattie had about a 99 degree fever, and I alerted Peter. Peter was sleeping in the living room with Mattie last night, and set his alarm clock periodically throughout the night so that he could wake up and take Mattie's temperature. Under normal circumstances, none of us caring for a child would even think twice about a 99 degree fever. In fact, if you called your pediatrician, he/she would probably laugh at you for calling (been there, and experienced that!). However, with a child who has cancer, a fever can be deadly, and can lead to sepsis, because one's immunity is completely compromised. Which is why we fanatically take temperatures when we suspect a fever. A fever of 100 degrees or more is of concern, and this is what we were monitoring for. I have also been told that as soon as such a fever is identified and the quicker Mattie can get on antibiotics, the better. So I went to bed last night, but certainly did not sleep peacefully in fear we would have to rush off to the hospital.

This morning, Peter let me know that Mattie ran a 99 degree fever all night long. At 8:30am, I took his temperature and it was over 100 degrees. By 11am, it was over 101 degrees. I called Dr. Toretsky at 8:30am and alerted him and he told me to call him back at 11am. At 11 am, we both agreed that Mattie had to come in. When we got to the hospital, we headed up to the PICU. But they couldn't admit us here since Mattie's room wasn't cleaned and there was no hem/onc nurse to care for Mattie. So I had to wheel Mattie to the Lombardi Clinic to start the process of blood cultures, and to get him hydrated and on antibiotics. Mattie refused to get out of his wheelchair and sit in a bed for treatment. I don't even argue over this anymore, if he is more comfortable in the chair then so be it. While I was waiting with Mattie, Ellen came to visit. She brought me a wonderful lunch from the Carlye Grand (a mango chicken salad) which is one of my favorites. Ellen also brought Mattie a vanilla shake, a happy meal, and some wonderful Scooby Doo books and a cute snowman flashlight. Unfortunately Mattie did not give Ellen a warm reception, but he did not throw her out of the room, so that was a step forward in terms of how he reacts to visitors. While I was with Ellen, Dr. Synder came in to observe Mattie and to examine him. Somehow he puts up with Dr. Synder. She tells me she has a strong willed personality, so maybe it is the meeting of the minds here, I don't know. As Dr. Synder was leaving the room, I joked with her and I told her we have to stop meeting like this. Her response was very cute, she said that she is willing to start drinking tea now so that we could meet up together.

Mattie was very tired and wiped out. He spent a good chunk of his time in clinic today nodding off, but not soundly, because he also had one eye out for me. Linda came by and asked Mattie if he wanted to meet Santa. If you recall, today was a Santa party and I was debating yesterday whether I was going to take Mattie to it. The fever made that decision for me today. In any case, Linda, Jenny, and Jessie, escorted Santa and Mrs. Claus to Mattie's clinic room. When Santa first entered the room Mattie could bearly open his eyes and lift his head. You will see that picture below. Then as Santa delivered a large bag full of presents to Mattie, he became more animated and was even willing to take a picture. I love this before and after shot of Mattie. Despite how tired and wiped out Mattie was, I found it fascinating to see the magical power and draw of Santa Claus. For just a quick and fleeting moment, Mattie was energized and happy.

After Mattie received his antibiotics, we were able to take Mattie up to the PICU. Ellen helped me transport Mattie along with a nurse from the clinic. There were just too many Santa packages to take up and I couldn't manage everthing.

When I got to the PICU, I quickly realized I wasn't assigned a HEM/ONC nurse. Though the nurse who worked with us was nice, she did not know us, Mattie, or our situation. A big problem when you work with a child who has anxiety! Mattie was hysterical. The nurse then handed me a bunch of admission forms to fill out. Needless to say I was insensed, since how long have I been coming to this hospital? Please don't tell me you are going to ask me to repeat information that has been WELL documented countless times before. To add insult to injury I had a resident come in and start asking me history information on Mattie. Information that again, the hospital has in triplicate. Now mind you I was absolutely punchy today, and when the resident asked me my age, I basically said I did not see how my age was relevant to Mattie's condition or admission. I eventually gave it to her but not without a lecture.

Thank God Tricia came in. Tricia is one of our favorite HEM/ONC nurses. She was the charge nurse today, and when she saw what I was being put through with forms and questions, she corrected that right away. She took the forms from me, and she lectured people outside our room. She said that they could easily get this information from the clinic and not bother me with this. This is not the first time Tricia has helped me, which is why she has a special place in my heart. She has advocated for us and Mattie numerous times, and also did so last week at a meeting we were having with the doctors and residents.

It is 9pm, and Mattie is still running an 101 fever. He has a headache, and the chills. Fortunately he is being hydrated, given tylenol (his absolute favorite thing to take.... NOT!), and antibiotics. We did learn today that Mattie reached his nadir, or his low point in terms of his white blood cell count. The concern during the nadir is that the body's first line of defense against infection (white blood cells and the platelets, which help to clot the blood) are low leaving a person more susceptible to infection and bleeding. Mattie's Absolute Neutrophil Count is 0, so he is severely neutropenic (which means a low number of neutrophils in the blood, and neutrophils are the primary line of defense against infection) but has 10 white blood cells in his urine. These cells in the urine indicate a possible infection. So we shall see what if anything the cultures reveal tomorrow.

We want to thank the Katcher family for a lovely dinner. We all enjoyed your gingerbread cookies too, and the nurses appreciated you bringing them some too. But the hit for the evening was the noise putty that Eva Katcher brought Mattie. That putty makes all sort of sounds, mainly all the gross sounds that a six year old boy would find hysterical. He had me making these sounds for all the nurses who came in the room, as well as for my parents. As I sign off for the evening, Mattie is in bed and watching the movie, Cars, with Peter. I am not sure what our night holds for us, but one thing I have learned is always expect the unexpected, and you won't be disappointed.