I wrote a blog, last night, that was very emotionally charged. I feel very strongly about every word I said in the blog, and I stand by my position, but was worried this morning that it might be counter-productive if it brused the egos of those whom I need to cooperate with what Katy needs. I have decided to repost the blog further down on today’s post. How the people within the Parkland community handle what I say will be truly indicative of their character. I have read that the truth can withstand scrutiny, and, in fact, invites it. The only way to know that it is the truth is to allow others to question it. That is how I feel about this situation. Anyone treating Katy who does not like my scrutiny, is probably not overly secure in their abilities, or may, in fact, be aware that they are putting their egos in front of the good of the patient. I am sure that, in many cases, medicine is a thankless field, but that begs the question, are “thanks” why you decided to be in medicine? When I was a manufacturer’s rep, my sales manager told me that no one will ever tell you how great you are, and if they do beware. You will know if you are doing a good job by the amount of money you make. I would offer that the doctors will know how good they are doing by the number of people who leave the hospital with a quality of life BETTER than the “standard of care” usually allows for. Once again, I am offering the challenge for the good doctors to become great ones.
Today was a good day. I was informed that the kids would be allowed to see Katy this weekend! Jake will continue his counseling to help him process this, and he will return to counseling immediately after returning to Kingwood. I know that Katy will benefit greatly from seeing Jake and Arielle, and that this weekend will light the fire under her to get out of the hospital. It is Katy’s (and my) belief that medicine can only do what your body and mind allow it to. Once we get Katy fully aware, and active, in her treatment, then there will be no stopping her. She was very lucid, today, and expressed very well her desires, pains, etc. Dr. Das also said that they would be switching her from 4 small doses of the beta blockers, to the once daily larger dose. Her heart appears to be strong enough for this, and that is how the medicine was intended to work. Her temp did creep up a little around noon, but reduced immediately after her bath. It was creeping up again this afternoon, but I think she is too warm due to being over-dressed. To clarify, a few of the nurses tuck her arms into the gown, tuck the gown under sides and legs, tuck pillows and towels under sides, cover her to her throat, etc. Every time I come in, Katy is asking me to get that stuff looser. When the nurses do all that, Katy can’t move her arms. She gets pinned down, and gets very warm under the gown that is not made of very breathable material. In the absence of her ability to move her own covers, the nurses will just have to be more diligent in checking to see if she is hot or cold. Overall, though, Katy is doing very well, and really wants to come home.
I am going to post last night’s blog below, please remember that some of what is written expresses frustration from 24 hours ago. That being said, it does not make the anything written less valid. The overall concerns I address are still very real. My distrust of the system is real, and the system has done very little to prove my distrust misguided. Rather, I feel, that only through a series of logical challenges has pregress been made. There are those golden few who, unfortunately, have to overcome the burdens of every bad experience that Katy and I have had prior to this experience, but those people have risen up, nobly, and will always have my gratitude and admiration. The others will only temper my resolve to campaign for real change in a system that is very definately broken.
One last point. I have received various people communicating that they don’t comment because they don’t want to bother or overwhelm me. Please comment all that you would like. No comment, unless inapropriate, will be considered a bother or waste of time. This blog is all of our way to communicate with one another. I have left up posts from people that didn’t agree with me, and will continue to do so, so long as they are not causing harm or telling falsehoods. This is a wonderful think tank, and the ideas posted here, often, offer questions for me to ask during my days at the hospital. Thank you for taking the time to care enough to post.
Last night’s blog……………………….
I will start out by saying that today was a wonderul day for Katy! While getting the trach put in this morning doesn’t seem like a lot of fun, she was able to be so much more expressive this afternoon, and said that she was “ready to go home.” I should say that she “mouthed” that. She doesn’t have a talking trach in yet, but they will be reducing that guage of the tubing until she gets into a talking trach, and this will help her ween off of the ventilator. I visited with her at 8am, and then they came in to do the procedure. That was foillowed by daily routines such as bathing and dressing changes. So I saw her again at 2pm. She was semi awake, but smiled a bit, and loved the massage I gave her. 5pm came and she was WIDE awake. She told me exactly where she felt pain, how she misses the kids, how she wants to say “I love you,” and “thanks” to all of her friends for doing so much for us. She wants a smoothie! It was great to see her so much more animated and expressive.
While I was in the room, a doctor came by to visit and let me know about the procedure going well. She explained how they would reduce the size of the trach, how the talking trach would be put in, and how it would heal when it was taken out. Then she said, that after talking with Dr. Martin (psych), that Katy was a little depressed by not being able to see her kids, and would it be alright to give her some SSRI drugs (anti-depressants)? I said that instead of giving her drugs, they should let her see her kids. I said I didn’t think Katy would want this, but asked her. The doctor asked Katy, too, and Katy said “no” to the drugs. I would like to back things up a bit. Amber and Jake are seeing a couselor to help them with this. As per my conversation with child-life, Jake is going twice this week, and again on Monday after his visit to Dallas. All of this was arranged so that Jake could see Katy this weekend. Unfortunately, Katy’s illness and Jake’s school schedule conflict with what days child-life works. I have asked for an alternative since we cannot get the kids there during the week. I have asked for another child -life specialist. I have offered to pay for the overtime. I have offered to bring in my own, private, child psychiatrist. As of now, they seem unable to commit to anything other than “we understand,” and “we don’t really have any options to offer you.” Sorry for I am about to say, but that is BULL$H!T. They know it, and I know it. I feel more than confident that I can find an equally experienced and qualified, if not more, on my own. If Jake’s well-being is truly their concern, then me offereing to pay money for a highly qualified professional should ease any concerns. Unfortunately, this appears to be a case of “scratch my back, and I’ll scratch yours.” The BICU doesn’t allow children under 12 in unless this PARTICULAR child-life specialist goes with them, and she doesn;t want to work on weekends. I have asked for others to investigate if another child-life specialist on campus could act as a surrogate for this weekend, but, honestly, I don’t really feel like much effort is being made. In fact, very often, I don;t get the feeling that any of these obstacles are truly about what’s in the best interest for Katy. It feels, at least to me, like a reactionary defense against a bruised ego because I chose to question the child-life specialist’s commitment to solving that actual problem. When confronted with my frustration, her response was to imply that if I wanted her help, then I would have to be nice. Nice is fine, as long as progress is being made, but in these situations, that are, at best, inconvenient for all involved, we cannot limit the well being of a critically ill patient by the chosen work schedule of a “counselor” with banker’s hours. If the well being of children was truly the concern of the policy makers, then the weekend would be the busiest time for the child-life specialist. That is when most families are able to visit with the kids in tow. I doubt that I will be able to change the policy, but I will push as hard as possible for Katy and Jake to see each other. As I wrote in the title, they just don’t get it. Offer us drugs instead of seeing the kids. Tell us what we need to do to prep Jake, but can’t be there on weekends. Don’t they teach a class in common sense? It is intersting to me how sensitive and thin skinned people who work in a burn ICU can be. A doctor once told me that the hardest thing for him to get used to in the BICU was “more.” Everything was “more.” More blood, higher temps, more medicines, more doses, more frequently, everything was “more.” That being said, you would think that the people working on the floor would be used to a little “more” emotion. Wish me luck.
The cardiologist called me today. Katy’s number are where they would like to see them, considering her condition. She seems to be responding to her meds well, her temp is not rising, heart rate is good, blood pressure is in the zone, her urine output is good, and (very important) she is mentally alert. There is not much news on the cardiology front. Time will be the key to seeing how she responds to everything. I would like to say how much I appreciate Dr. Das doing what he said he would. A simple 1 minute phone call eased my mind. In that small amount of time he was able to tell me what I needed to know to feel better about Katy for the next 24 hours. Though it was a relatively small action, the resulting level of confidence in the treatment Katy is receiving is increased due to me being directly in the path of information. Dr. Martin asked me what I was worried about, and why I wanted to know so much? I asked her if she would invest her money in a bank or business with a 97% failure rate? She said she wasn’t prepared for me to ask that question. I said to her that if she wouldn’t put her faith in a bank with a 97% failure rate, then why should I put my faith in a medical system that, statistically, has a 97% mortality rate with strep A infections caught after 48 hours of infection (Katy was 96 hours in when she was admitted to the hospital)? I think that we too often take a passive seat to medicine and doctors. It would be different of it were a broken arm. An X-ray would show all of what is wrongs, and they can fix it. But what about when they “don’t know?” For weeks there has been speculation about the cause of the fevers, but the cultures were negative. It turns out to be an infection (we think…still not 100%) in her lungs that DID NOT show on the cultures, but were revealed during an x-ray or scan. So why were they so willing to not do the very simple, and non invasive, test for a virus simply because she was not “indicating?” It seems to me that if the medical community does not start learning from its own history, then it…rather it’s patients, will be doomed to suffer the consequences of of repeating the past’s mistakes. I feel that change isn’t coming quicker because it is not the doctors who feel the consequences of their inability to adapt more quickly, it is the patients, and the patients’ families, who suffer while they quote “standards of care” in cases where they have a close to 100% mortality rate. Kind of like doing the same thing over, and over again and expecting the same results.
Though I could go on with what I feel is wrong with the doctors, and the medical community, I would rather end on a positive. The majority of the nurses have been great, and a few of the doctors have been more willing to be flexible in their understanding that this, unfortunately, can’t be rectified with “we’re doing everything we can,” and “we’re giving her medicine for that.” I also have been overwhelmed, in the good way, by the love, support, and prayers of all of my students. My music students are the greatest! I get texts, e-mails, facebook messages, and posts from most of my kids, and it means the world to me. I am so honored to have been allowed to be part of their education, and I can’t wait until the situation stabilizes enough so that I can be back there standing on top of the amps, yelling at the kids again. To them I say, I can;t wait to jam with you all. I love you.
Love to all,