Friday, February 27, 2009Quote of the day:
"Think "impossible" and dreams get discarded, projects get abandoned , and hope for wellness is torpedoed. But let someone yell the words "It's possible," and resources we hadn't been aware of come rushing in to assist us in our quest. I believe we are all potentially brilliant and creative--but only if we believe it, only if we have an attitude of positive expectancy toward our ideas, and only if we act on them." ~ Greg Anderson
Today was the kind of day that you just have to sit back and say, ARE YOU KIDDING ME?!!!!! Thursday night was a late night. Mattie felt sick to his stomach with Methotrexate, so we had to resort to giving him ativan. Kytril, his typical anti-emetic wasn't cutting it. For most people ativan is very calming, after all it is used for anxiety as well. But not for Mattie. Many drugs have paradoxical reactions for him. So last night, after taking ativan, he wasn't nauseous anymore, but he had an inordinate amount of hyper energy. I couldn't get him to sleep until around 1:15am. Even that was a feat. I basically had to hold him down and rub his head. He was just wired.
This morning, Mattie had a hard time waking up. In fact, it did not happen until around 11am. Being a workday for Peter, I was up before 7am, so I could shower before people started popping in and out of Mattie's room. So he was sleeping but I was very much up. Kathleen was Mattie's nurse today, but Tricia also came in to visit. She brought me hot tea, which was very much appreciated!
When Mattie woke up, he was excited about the prospect of going to the playroom today. He had no scheduled chemo or procedures today, just massive hydration to flush out the methotrexate. So we were looking forward to getting out of the room, and meeting up with his little buddy, Brian. I called Kathleen in to take Mattie's vitals and to let her know Mattie was leaving for the playroom there after. At which point Kathleen told me she had some bad news for me. I figured she was kidding, but she really wasn't. She told me that someone from the infectious disease department came up to the PICU to let them know that Mattie had to be isolated. That his stool sample from last week tested positive. When Kathleen told me this story, I was a bit confused. Because we found out the results of the cultures last week, and we knew they were negative. You may recall that Mattie spent 48 hours last week in contact isolation as we awaited results. In any case, I was perplexed how could the results be negative last week, but positive this week. So already I was edgy. I asked to speak with the attending HEM/ONC doctor. Dr. Abu-Ghosh was rounding so she couldn't come in right away. I wasn't happy with this time delay. As I was waiting, and waiting, and waiting in the room, I started to get more and more irate. Mind you I am tired, I have a migraine headache, and not much else to give. So this was truly the straw that broke the camel's back. Or my snapping point. At which point, I called Linda. I asked Linda to come to Mattie's room and play with him so I could get to the bottom of the problem.
After Linda arrived, I explained the issue to her and she tried to get more clarification for me. While this was happening, Mattie was visited by Lana (one of his preschool teachers from RCC) and Lana's daughter, Erin. Actually their visit came at a great time, because they were able to divert Mattie's attention so I could sneak out and start asking questions.
I went to find Dr. Abu-Ghosh, who told me that she was in the middle of rounds and needed more time. I could appreciate that, but that did not help my situation. I told her she could take her time, but that I was going to call my patient advocates. So out came my phone and I started paging my two advocates, Gail Chisholm and Julie Andrews. Both of these women know how to get things accomplished and addressed. They both immediately called me back. Gail came up to meet with me to get the full perspective of the problem. While I was waiting for Gail, to arrive, Dr. Abu-Ghosh found me in the hallway. She explained to me that sometimes it take 7-10 days for cultures to show positive results. So she assumed this is what happened in Mattie's case. I told her this wasn't acceptable, that no one told me that this was even remotely possible. But she said it was a culture, and cultures can take this long. I then felt the need to correct her. I am not a medical doctor or an epidemiologist, so how am I supposed to know that cultures can come out negative and then 10 days later they can indicate positive growth? So I told her that it was inexcusable that the medical staff did not prepare me for this. For all I knew the issue was put to rest and I did not see contact isolation in our near future. But the story only got better.
Gail came up to talk with me, and while I was talking with her and telling her about the whole issue regarding contact isolation from last week, and today's culture issue, a person from infectious disease came to talk with me. Now here is where I LOST it. Apparently Mattie's stool culture tested positive for VRE (which I will describe in a minute) on February 18. That is last wednesday. I am only finding out about this positive culture TODAY! It turns out that the PICU and Mattie's doctors were never contacted and alerted to the positive results. Only negative results showed up on the computer. So literally Mattie has been in contact with kids on the floor and in the HEM/ONC clinic for over a week now. I was livid. I told the infectious disease person that her lab runs a very unprofessional and unethical practice. She started lecturing me about the importance of contact isolation for Mattie, at which point I laughed. I told her she has got to be kidding lecturing me about this. She and her colleagues allowed a child with VRE to be running around the hospital for over a week, potentially infecting other immunocompromised children. I told her maybe she should get her facts straight and do her job so that such an enormous oversight did not happen again. I asked her how many other kids like Mattie are running around the hospital with the delusion of negative results, when in reality they have tested positive for a bacterial infection? She couldn't answer me, but she also couldn't tell me this was an anomaly. Great! But the conversation only got more frustrating because she said she couldn't explain why the PICU wasn't notified last week when Mattie was in the hospital. She had no explanation and she said her boss wouldn't either. At which point, I told her that she and her boss were of no helpt to me, and I was going to stop wasting my breath and energy talking to her. I need to find someone who makes decisions, and I need someone to hold this infectious disease lab/department accountable. Right now there is no oversight. The irony is, Gail, my patient advocate, heard this whole story and she couldn't believe what she was hearing. The hospital in my perspective was negligent.
Gail promised to find out what channels within the hospital we have to talk with. But I told her I want a formal response from the hospital about this, and I want to know that this won't happen again. What continues to frustrate me though is that I have to constantly explain to medical doctors why I am upset. To me such an egregious oversight about reporting results would be understandable. I would also hope that doctors could understand how isolating Mattie impacts him. I have to tell you, I feel like I am hitting my head against the wall sometimes when I talk with the medical community. I wonder what really happens in medical school? Does their training suck the emotional, human, and empathetic side out of them?! One thing is for certain, doctors need sensitivity training, and all medical doctors should be versed in basic counseling skills. Just when I think I have gotten my point across to them, I find that I am right back at square one explaining my feelings all over again. In a way that is insanity defined to a T. Doing the same thing over and over again, but expecting different results. So now I need to apply a different technique in hopes of getting my message across!
So as of February 18, Mattie tested positive for VRE. VRE is the acronym for Vancomycin-Resistant Enterococcus. Enterococcus are bacteria that live in the digestive and genital tracts. Enterococci bacteria grabbed the attention of public health officials in the 1980s because of its ability to survive in humans and animals, and its knack for sharing those survival tricks with other bacteria. While enterococci are not as familiar as staphylococcus (staph) or Escherichia coli (E. coli) bacteria, enterococci infections are among the most common type acquired by hospitalized patients. Enterococci, in general, are much less capable of causing disease than staph or E. coli but still can complicate and prolong hospital stays. Virtually the only people who develop illness from Enterococcus are those who are already ill, such as individuals in a hospital intensive-care unit or those who are elderly, have diabetes, have chronic kidney failure, cancer, and so forth. So, unlike other forms of resistant bacteria, there is little chance or concern among physicians of Enterococcus becoming epidemic in healthy populations. But enterococci are of great interest because, as with many of its bacterial counterparts, it can resist and evade several forms of antibiotic therapy, including vancomycin, the antibiotic of last resort for resistant infections (you may recall that while Mattie was in the hospital for 11 days with neutropenia, he was on vancomycin). Vancomycin-Resistant Enterococcus is a mutant strain of Enterococcus that originally developed in individuals who were exposed to the antibiotic. Enterococcal infections that result in human disease can be fatal, particularly those caused by strains of vancomycin-resistant enterococci (VRE). During 2004, VRE caused about one of every three infections in hospital intensive-care units, according to the Centers for Disease Control and Prevention (CDC). Most often, VRE is spread from the hands of a health professional to a patient in a hospital or other health care setting.
Mattie can leave the hospital once he clears methotrexate within a few days, but whenever he enters the hospital or clinic over the next three weeks, he will be isolated. I tried to explain this today to Mattie, and he wasn't happy about this at all. You have to understand our level of isolation over the past seven months is huge, and this only compounds the feelings. In order to come off of isolation, Mattie will need to have three negative stool cultures. However, it is one culture per week, over the course of three weeks. So we have a long road ahead of us. Frankly I wonder how accurate these positive results are, but at this point it doesn't matter. The hospital views Mattie as having VRE, and now it is a matter of clearing it out of his system.
I do want to thank Lana and Erin today for playing with Mattie while I was resolving this issue. Thank you for a wonderful lunch, Mattie ate two pieces of pizza and of course cupcakes. I also can't wait to read Mrs. Piggle-Wiggle's adventures with Mattie. He loved his gifts! I also can't thank Linda enough for dropping everything and coming down to help me with Mattie. I think Linda could see that I was at my wit's end.
Mattie and I played a ton of things in his room today. He also had several visitors later in the day. Chris and Thomas from the chemistry club came to visit and helped Mattie make slime. Mattie loved it, and who knew combining glue, water, and borax together made such a fascinating substance to play with. Chris is a lovely senior at Georgetown and Mattie really loves the experiments he brings in each friday.
Last night, Brandon text messaged me. He still isn't feeling well, so today he came in to be examined. Toni and Jim, Brandon's parents came by to visit us. They gave Mattie a great gift. A remote controlled roach. In fact, Mattie put the roach on his foot, while working in his room on a craft project. I couldn't get over this pose, so I snapped a picture of it. Glue gun in one hand, roach on the foot, and the other hand is grabbing a cupcake! Thank you Toni and Jim for this great gift!
This afternoon, Jenny came up from the clinic to give me a break. I couldn't make it in the hospital without Linda, Jenny, and Jessie. The rest of the hospital could fall down, but without their social support, our world would stop. Jenny and Mattie played for about 90 minutes today. They did a lot of water play, which is right up Mattie's alley. Today the scenario was a car that was drowning in water. I did not stick around for the dialogue, but I know Jenny, Jessie, and I are on the same wavelength about the issues that Mattie is expressing and processing. I am happy Mattie had this time with Jenny. While Jenny was working with Mattie, I was sitting in the hallway catching my breath. In the hallway, I bumped into Denise, our social worker. I filled her in on today's saga, and I told her about my communication and psychosocial concerns I am having with the medical staff. Before I headed back to relieve Jenny, I bumped into Jessie. We also had a lovely chat. I really value my interactions with Jenny and Jessie. They are professional, but also very real. They understand the magnitude of all of this on Mattie, Peter, and I.
This evening, Mattie and I started building things out of popsicle sticks and cups. At which point Peter arrived from work. Peter and I strategized that I would go home tonight and Peter would go home on saturday night. I knew I had to get out of the PICU. I am tired, edgy, and fragile. My head hurts and all this stress is causing my heart to palpitate. Mattie did not want me to leave the hospital tonight, and he put up a fuss. But Peter told him that I had to go, because if he doesn't take care of me, then I won't be well enough to take care of him. He did not like the answer, but accepted it. So I can only imagine the night Peter has in store for him with Mattie. Even Jenny commented to me today that Mattie has a ton of energy. The old Mattie is slowly coming back, the only problem is he can't physically expend the energy, and so therefore, it gets channeled in talking and other activity.
Mattie's methotrexate infusion was completed last night, and now he will start to receive leucovorin. Leucovorin is a folic acid derivative and is administered at the appropriate time following methotrexate as part of a total chemotherapeutic plan, where it may "rescue" bone marrow and gastrointestinal mucosa cells from methotrexate. Now we wait until Mattie's body clears methotrexate to an appropriate blood level so we can leave the hospital. As I end tonight's blog I want to thank Karen, Lorraine, Susan, and Charlie for e-mailing me back and forth today as I was dealing with the culture results. You all kept me grounded. I also want to thank Lana and Katie P. for your willingness to donate a Wii Fit to the childlife room at the hospital. Your generosity is SO appreciated. Thank you Lana for a lovely dinner. We all loved the shrimp! Thanks for all your support.
I end tonight's posting with a mesage I received today from my friend, Charlie. Charlie wrote, "I am always impressed by your strength and your willingness to keep going but sometimes you leave me speechless. I have had one migraine in my life and I had to stop working and hide in a dark room for a couple of hours. How you managed to keep going with that is simply beyond my comprehension. You have so many really good ideas for how the hospital can help patients and family cope with cancer and other major illnesses that I really hope they can put at least some of them into practice. You certainly have raised awareness of many issues that were previously ignored or overlooked by the administration. As for discipline and boundaries versus support for Mattie; I think you've done a yeoman's job with respect to helping Mattie cope with all of this. His general attitude and willingness to participate in social functions and therapy is clearly due to the efforts of his parents. When I look at how far he's come since last fall I wonder how anyone can be critical about your efforts. I suggest that while you hear these specialists out, you also screen the comments for usefulness. Many of these people speak from the point of view of a textbook and not real life events. Definition of Yeoman's job: In modern usage the term yeoman can also be used as an adjective meaning "performed or rendered in a loyal, valiant, useful, or workmanlike manner," especially in situations that involve a great deal of effort or labor as in: "He did a yeoman job on the problem."
Left: Mattie examining the music stick and seeing how it worked.
