Monday, March 2, 2009

Monday, March 2, 2009

Quote of the day: "Anybody can become angry, that is easy; but to be angry with the right person, and to the right degree, and at the right time, and for the right purpose, and in the right way, that is not within everybody's power, that is not easy." ~ Aristotle

I am writing this blog from home tonight. Mattie was discharged from the hospital after 5pm today. He cleared methotrexate at around 4am with a .07 level! In fact, Mattie's nurse, Erin, delivered this good news to us in a very cute way! She taped Mattie's lab report on the inside of his door before 4am, and it had star stickers all over it, and it said Mattie was a winner. It was adorable, and added a lot of humor to my morning, as I was walking around in the dark collecting urine. Mattie has a good rapport with Erin, and last night they made a deal with each other. He gives her hugs for empty syringe tubes which he uses to shoot water at things. It was priceless to hear him cutting this deal.

With the winter storm today, Peter did not have to go to work. This was actually a God sent, because I needed his help managing all the people we had to speak to about VRE. It took both of us! Of course having Peter around to help with Mattie and to help move out of the hospital was super helpful!

Mattie slept in again this morning, and while he was sleeping there was a knock on the door. It was Dr. Morel, you may recall she is the chief of infectious disease at Georgetown. I am thrilled that I was introduced to Dr. Morel. She is an outstanding doctor, empathetic, and knows how to get the job done. Dr. Morel followed up with me this morning. She told me she had good news for me. I had no idea what that meant, so I just listened. She explained to me that Georgetown uses technology to process stool cultures. So literally a machine was doing the analysis last week (the analysis that said the culture was positive - remember I had great doubt in this positive result, but I figured I couldn't fight the system, but it pays off to keep asking questions and of course to find the right person to talk to). Typically the machines do an excellent and accurage job (or so I am told), but not in Mattie's case. Dr. Morel had the clinical microbiology lab pull out Mattie's stool sample from February 18 on Sunday and analyze it by a trained human eye/hand, rather than a machine. Upon inspection the only thing that turned up positive on the culture was lactobacillus, and NOT VRE. Dr. Morel explained to me that the machine that originally processed the culture identified lactobacillus as VRE, because the structure of the bacteria can look similar. I suppose they can look similar to a machine, but not to a trained person! So Dr. Morel apologized and told me Mattie never had VRE. In addition, she told me that the second stool culture taken from this past friday (the Feb 27) was also negative for VRE.

I just could not get over what I was hearing. We went from not having VRE, to having VRE, back to not having VRE over a 10 day time span. Talk about an emotional rollercoaster. Mind you, all through this time, Mattie went from being isolated, to no isolation, to being isolated again. It was very confusing to him. Dr. Morel told me that Peter and I would have a chance to talk with Dr. Stephen Peters, who heads up the clinical microbiology lab at Georgetown, in order to have a better understanding for what transpired. I was so happy Mattie did not have VRE, and that he wouldn't have to deal with the consequences associated with having such a contagious infection. I spoke to Dr. Morel about probiotics, or supplements such as acidophilus that can be taken while Mattie is neutropenic and on antibiotics, so that we could avoid the development of "bad bacteria" in the future. However, several doctors have cautioned me about their use in children with cancer. In fact, when I spoke to Dr. Peters' today, he said that even on probiotics, Mattie could still easily get VRE, because he is immunocompromised and living in a hospital setting.

Dr. Peters came to visit Peter and I today. We had to give him a synposis of what transpired with Mattie's culture. Dr. Peters said he is trying to track down the technician overseeing Mattie's case, so he did not have specific answers for us yet, but he knew how upset we were, that he wanted to come and talk with us about the error that took place. To make a long story short, Georgetown processes many cultures per day, and there just aren't enough human resources available to perform confirmation checks of cultures that are flagged as positive by the machine. So if the machine claims they are positive, they are considered positive. So clearly, Peter and I could see that we weren't going to have much of a chance at changing this system, a system that Georgetown invested heavily into. I was frustrated by this because I feel if Mattie got a false positive, who knows what else this machine is missing. Dr. Peters told us that the machine is right 9 out of 10 times. Our luck! I said it is unfortunate that there is no real human accountability for these machines, but I told him, if this happens to Mattie again, that I am calling Dr. Morel and him directly. He gave Peter and I his office and pager numbers. I tell you, I am getting quite an education at Georgetown. I am learning what questions to ask, and who to turn to in order to get the appropriate answers to our questions. Dr. Morel told me that I am getting an honorary medical degree. I agree!

Here is some specific information about lactobacillus. Lactobacillus acidophilus is one species in the genus Lactobacillus. It is sometimes used commercially together with Streptococcus salivarius and Lactobacillus delbrueckii ssp. bulgaricus in the production of acidophilus-type yogurt. Lactobacillus acidophilus gets its name from lacto- meaning milk, -bacillus meaning rod-like in shape, and acidophilus meaning acid-loving. This bacterium thrives in more acidic environments than most related microorganisms (pH 4-5 or lower) and grows best at 30 degrees Celsius. L. acidophilus occurs naturally in the human and animal gastrointestinal tract amd mouth. acidophilus ferments lactosei nto lactic acid, like many (but not all) lactic acid bacteria. Certain related species (known as heterofermentive) also produce ethanol, carbon dioxide, and acetic acid this way. L. acidophilus itself (a homofermentative microorganism) produces only lactic acid. Like many bacteria, L. acidophilus can be killed by excess heat, moisture, or direct sunlight. Some strains of L. acidophilus may be considered a probiotic or "friendly" bacteria. Probiotic bacteria literally means "for life," meaning a probiotic bacteria aids human life. These types of healthy bacteria inhabit the intestines and protect against some unhealthy organisms. The breakdown of nutrients by L. acidophilus produces lactic acid, hydrogen peroxide, and other byproducts that make the environment hostile for undesired organisms. L. acidophilus also tends to consume the nutrients many other microorganisms depend on, thus outcompeting possibly harmful bacteria in the digestive tract. During digestion, L. acidophilus also assists in the production of niacin, folic acid, and pyridoxine. L. acidophilus can assist in bile deconjugation, separating amino acids from bile acids, which can then be recycled by the body.

In addition, to the meetings with Dr. Morel and Dr. Peters, I also met with Jeff Turner, our HEM/ONC nurse manager, and Alice Pengra, his boss. Peter and I continue to be frustrated with the fact that the oncology unit is temporarily housed within the PICU. The hospital is under construction and because of renovations, units had to be consolidated together. At the moment, what once was just the PICU, houses the PICU, the oncology unit, and general pediatrics. That sounds okay in theory, but it isn't in all reality. PICU and oncology needs are VERY different. In fact, the personalities and styles of PICU and HEM/ONC nurses are very different. They are all very competent and capable, but the population they serve are like night and day. PICU serves children in crisis and with short term issues, and well HEM/ONC nurses work with children and their families on a very long term basis. For Mattie and us, the hospital has become our new home. However, in a PICU, there is activity 24 hours a day, all sorts of noises, machines beeping at all hours, and cries of pain, and so forth. It is a very unsettling environment to live in long term. It is hard on the patients as well as the nurses. It forces two groups who perform very different tasks to have to work together, and of course there becomes turfdom issues. We truly believe that the hospital did not think it through when they lumped all these units together. It may have been cost effective, but I can assure you this was not a wise decision from the perspectives of staff morale and patient care. I believe that with the co-mingling of care issues, HEM/ONC children are being exposed to illnesses and infections that they wouldn't normally have to contend with if they had their own unit. To me this puts the oncology children at risk, and the psychological consequences of getting treated within a critical care unit as a PICU can be challenging and depressing. Mattie sees children intubated every day. These children are pretty much not moving, not talking, and so forth. It can be scary, and why subject Mattie and other oncology children to this, they have enough to contend with. So I spoke with Alice about my concerns today, because Georgetown has promised for months now to reopen the HEM/ONC unit, but it just fails to happen, because I don't think the hospital administration views this as a priority. Alice heard my concerns, but as an admnistrator, I realize she has to sing the party lines. I got my point across, and we both agreed to disagree about certain aspects of things. But I don't take no easily, so Peter and I will continue to escalate the issue up higher. We have the support of our HEM/ONC doctors and nurses, and I think it is about time that the hospital hear from its consumers. As Peter reminds me, Georgetown is doing well financially from Mattie's insurance claims alone. So what I am trying to tell you is that it was a FULL day of advocating and standing up for doing the right thing. It isn't easy when you are exhausted, and I would imagine most of you could be saying, why are they doing this? Why? I guess I do this because advocating for something I believe in makes me feel alive in a time when things seem to be coming down all around me. I also advocate for things I truly believe in, and I think Mattie, other oncology kids, and the HEM/ONC nurses and practice at Georgetown are worth investing time in.

In the midst of all of this, Peter and I also had a misunderstanding with one of the charge nurses on the floor that we have gotten to know well. Peter and I were both quite upset, and I was so upset that I wasn't leaving the hospital today without confronting the nurse. I will not get into the issue on this blog, but I felt the need to work this out. I felt that her actions were deeply insulting to Peter and I, and after I spoke with her, I felt that we both had a better understanding about where each of us was coming from. In addition, this nurse told me that she trusts me completely, "with her life" was the terminology. This kind of took me back a bit, but one thing is clear the nurses observe me and the kind of advocacy I do. I don't even realize what I am doing, I just do it. I have a feeling any of you would do the same too if Mattie were your child. It is the only thing you have control over, and to some extent we all feel the need to control aspects of our lives. Otherwise there is just chaos. These eight months have been total chaos for Peter and I.

So you may be asking yourself, what on earth was Mattie doing while we are contending with these issues. Well fortunately for us, we had Jessie and Liza (one of our favorite volunteers) helping us today. Mattie got his MTP-PE administration, and did beautifully. But it made him very tired and he fell asleep for several hours. Thank you Jessie for playing with Mattie while I went to a meeting, and thank you Liza for waiting with us today, chatting, and watching Mattie. Also for helping us to the car. We are so fortunate to have these ladies in our life. We left the hospital at around 5pm and by the time I got Mattie out of the car and inside our home, it was a quarter to 6 in the evening.

We want to thank the Bentsen family for checking in with us and being our mid-day helper today! We also want to thank the Cruz family for a wonderful dinner. Jackie your special pasta sauce is lovely, and thank you for sharing it with us. Mattie devoured your organic pizza tonight and the homemade pumpkin bread. The bread was a hit! Mattie also loved Caroline's note and treat! Thank you for supporting us on our first night home. Tuesday and Wednesday will be quiet days for Mattie and I. We return to the hospital on thursday for more chemo. But I am looking forward to hearing no noises while I sleep, and of course not see isolation gowns and gloves! Outstanding.

I end tonight's blog with two e-mails I received today. The first e-mail is from Susan. Susan was a former student of mine, and now a friend. Susan wrote, "You know Vic I was reading Sunday's blog, and looking at Mattie's pictures and for some reason his pictures really struck me. I look at his his little face and am so incredibly impressed by the genuine joy in his smile as well as as the look of self satisfaction. If he had his hair you wouldn't even know he was sick. His countenance shows this glow that seems to come from deep within. I think it is a glow of joy for whatever reason. It is like Mattie is a light to which many people are attracted. At only age 6 he has already had touched so many people..and make us reflect on ourselves, our view of life. It's an enormous impact and he doesn't even know it."


The second e-mail is from my friend, Charlie. Charlie wrote, "I have to tell you how much I admire you and Pete for following through in a productive way in such a difficult situation. Some people get angry, rant and then do nothing; others mutter and turn away. The key is to use the anger at an unjust/improper situation to fuel a drive to make change happen. Once again, you've started that process, this time with the infectious disease personnel. I can only imagine how many lives will be impacted by the results of a change in process that will protect patients from this situation in future. I hope Mattie makes a swift recovery from this infection and that what you have to deal with now is as significant as it gets. I too, wonder how many are walking around with infections that have no discernable symptoms, which should just remind everyone how critical it is that we continue to clean and monitor even when all seems well. Our bodies, like our lives are a balancing act, sometimes there is a little more "play" in the system and sometimes the balance is on a very sensitive scale...I hope you reach a point soon where every decision, every situation does not have to weighed and measured for its possible life sustaining or life threatening impact but just its intrinsic worth or how much fun it might be."