A CLASSIC MATTIE MOMENT TODAY: While Miki (Mattie's HEM/ONC nurse) was giving Mattie his Demerol, she told Mattie that she was sorry he wasn't feeling well. Mattie looked at Miki and sincerely told her that she had nothing to feel sorry for. He said that she wasn't the reason he wasn't feeling well, it was because of the MTP. That level of empathy caught Miki and I off guard. Miki then told Mattie that it was so nice of him to think of her feelings, and his response was, "well I am smart, you know?!" Got to love his modesty. Miki and I both laughed over this one.
Quote of the day: "Remember not only to say the right thing in the right place, but far more difficult still, to leave unsaid the wrong thing at the tempting moment." ~ Benjamin Franklin
Before I tell you about Mattie's day, I wanted to refer you to the picture on the left. Clearly it is a picture of a refrigerator! But you will notice there is a lovely apple tree creation on this refrigerator. Well this tree was drawn by Mattie for Erin, his nurse. Erin sent me this photo today, because she wanted to let Mattie know that his creation is very meaningful to her, so much so she posted it on her refrigerator. What can a mother say? Other than I continue to be greatly touched by these remarkable nurses, who despite our horrific days, find a way to get me to smile or to offer to help in some way.Mattie went to bed at around 2am. He had a great deal of trouble falling asleep, and needed Morphine before closing his eyes. He continues to be in a great deal of pain. He reports that his whole body aches. I have learned today that in addition to having a calcium deficiency, Mattie also has a vitamin D deficiency. I suppose these go hand in hand, but Mattie will now have to take a 50,000 unit supplement of vitamin D each week. I feel that these deficiencies may help explain some of his aches and pains. Mattie requested a warm cup of milk last night too. So Erin (one of Mattie's HEM/ONC nurses) has started a great trend! The more milk Mattie consumes the better.
However, Mattie had a great deal of trouble waking up today! At 1:15pm, he finally stirred. Prior to him waking up, Margaret (a good friend and Mattie's first preschool teacher) came to visit. I sat with Margaret right outside Mattie's room and had lunch. The PICU is SO deserted, that it is easy to claim hallway space because there are only five patients present in the 16 bed unit. A real ghost town! It has been this way since Saturday. Margaret brought me a wonderful lunch and special desserts that I almost felt like I went to a french cafe today! Thank you! Margaret and I had a nice time chatting, catching up, and my parents even had an opportunity to talk with Margaret. After lunch, Mattie woke up and Margaret played with Mattie. He was receptive to the interaction, and Mattie was getting very frisky by trying to pull Margaret's belt off with "George," the name of Mattie's left foot. As the afternoon wore on, Mattie wanted time with just me, and we said our good-byes to Margaret! But Margaret and Mattie made plans for their next playdate together.
For the next hour, I played with the sand box Mattie created yesterday with Linda. I played about four different characters in this play scenario and we were having a great time in our interaction. However, nothing can be peaceful for us? I noticed that Mattie had the goose bumps on his skin. I felt him, and he felt very cold to the touch, which is unusual for Mattie. Within minutes, Mattie was very cold, shivering, teeth were chattering, and needed to be covered under three blankets. I went to find Miki, Mattie's wonderful HEM/ONC nurse, and Miki mobilized forces and went to get Demerol. I have seen this happen one other time when Mattie was inpatient. This was a delayed reaction to his MTP-PE infusion that he received on Tuesday. You will recall that Mattie needed Demerol on Tuesday evening, 90 minutes after his MTP infusion. Well today at 4pm, he was having the same sort of MTP reaction, and within five minutes after receiving Demerol, Mattie was fine. The Demerol however made Mattie fall into a deep sleep for two more hours. So in total Mattie has been conscious for about three hours today, so naturally I am VERY afraid for what the night holds for me. He may be rested, but I sure am not.
While Miki was giving Mattie his Demerol, she told Mattie that she was sorry he wasn't feeling well. Mattie looked at Miki and sincerely told her that she had nothing to feel sorry for. He said that she wasn't the reason he wasn't feeling well, it was because of the MTP. That level of empathy caught Miki and I off guard. Miki then told Mattie that it was so nice of him to think of her feelings, and his response was, "well I am smart, you know?!" Got to love his modesty. Miki and I both laughed over this one.
What I naturally worry about though is what if we were home today rather than in the hospital. How would I have dealt with this delayed MTP reaction? I have to pursue this with Mattie's doctor tomorrow.
Linda watched Mattie for an hour today so I could go outside and get some fresh air. Linda was in all day meetings, but seeing her is like seeing the American Red Cross truck come to a devastated area. She provides the same feeling of relief. I have been feeling sick to my stomach since I woke up this morning, so getting some fresh air really helped. I think the hospital room and air is getting to me!
My parents spent some time with Mattie and I this afternoon as well, and when Peter arrived from work, he took over. I then went outside again, brought my wonderful dinner with me that the Dunn family provided us, and chatted with my parents. We want to thank the Dunn family for their support, and of course for getting me my favorite salad. It was nice to sit down peacefully and eat, and for a moment, I felt more normal. I was able to have a real conversation with my parents and we had a few good chuckles too!
We are now on day NINE of this hospital admission. Peter tells me we have been inpatient 18 days during the month of May alone. Mattie's absolute neutrophil count was STILL zero today. As a reminder, here is what the Absolute neutrophil count (ANC) means. It is a measure of the number of neutrophils present in the blood. Neutrophils are a type of white blood cell that fights against infection. The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called "segs," or segmented cells) and bands, which are immature neutrophils. I was told today that Mattie's platelet count is falling along with his red blood cell count. So most likely Mattie will need a third platelet transfusion and a second red blood cell transfusion in the next day or so.
I want to thank those of you who wrote to me today and shared your perspective about the session we had with the clinical psychologist on Tuesday. I appreciated your words of support and for empowering me to have confidence in my decisions regarding Mattie. It means a lot!
I am headed to relieve Peter in a few minutes so he can go home, and perhaps be able to function at work tomorrow. However, nine straight nights in the hospital is no easy picnic, and the problem with all of this is there is no end in sight to any of the issues we are faced with. Any one can handle a limited amount of stress, but long term, it becomes quite a different story. I don't think our bodies are well programmed for this chronic type of stress. Think sleep tonight for us, I fear being up the whole night, and that is anxiety provoking in a way when you have so little to give.
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Sometimes I wish people would consider this statement a little more closely. It is unrealistic to expect you to be open to having a discussion about the long term "odds" of Mattie's survival when you have to be involved in making decisions about his upcoming surgery. Sometimes medical folks forget that the "odds" or percentages are just that; they don't reflect individual patients, just a conglomerate of medical cases. Applying the odds to an individual is often not very useful just as predicting a lifespan isn't always helpful either. One has to deal with things on a day to day level first before you can look out into the future. I am not sure that sharing the "odds" of survival/recovery/remission with Mattie is useful; what exactly is he supposed to do with that information? As you said, how many of us adults know what we want to accomplish with our lives (big picture), so how meaningful could that question be to a seven year old child? If and when the time comes to make a decision to stop treatment, I think you will know in your heart and Mattie will know as well. If you, Peter and Mattie are united in a desire to fight this, then it is the right thing to do. Odds have been beaten, someone has to be in the 10%-and it can only be someone who has chosen to be treated, not just give up."
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