Monday, June 6, 2016

Monday, June 6, 2016

Tonight's picture was taken on September 1, 2009. Which was 7 days before Mattie died. When I try to explain Mattie's pain to attendees at conferences, I always show this photo. To me this photo speaks 1,000 words. Mattie was hooked up to a portable pain pump. Yet despite that, he was still miserable and in pain. That day in clinic, Mattie's art therapists tried to engage him and divert his attention. They gave him this remote controlled dinosaur, which you can see intrigued Mattie for a short while. 

Quote of the day: Some old wounds never truly heal, and bleed again at the slightest word. ~ George R.R. Martin

I posted an article on Facebook today entitled, "Bright lights, big hassle for children in the hospital." For some this article maybe surprising, but for those of us who have lived in a hospital for days, weeks, and months on end.... WE GET IT!!! SLEEP doesn't come naturally in a hospital, mainly because it is impossible to distinguish day from night (thanks to noise, monitors, machines beeping, blood pressure and vital checks every four hours, or how about the radiology tech who thinks it is okay to take an x-ray of a child at 3pm, etc...)!

If children get any sleep it is because parents are advocating for this and the angels helping us carry out this request (of fewer night disturbances) are our nurses!!!

In addition to the article below, you will also find a copy of my September 4, 2009 posting. The reason why I copied it below is it speaks to one of MANY of the crises we faced at night in the hospital. As I re-read my words now, I also see how CLUELESS I was about the fact that Mattie was dying within days. No one really prepared me for Mattie's rapid decline and death until one day two of Mattie's nurses got a hold of me and told me what the filling up of fluid in the abdomen meant for Mattie. Mattie was dying and yet NONE of his doctors could tell me. What I land up reflecting upon even today is that throughout Mattie's battle, we were always being pro-active and doing something to make Mattie get better. When we learned there was NOTHING else that could be done medically, this was a real shift and we initially felt disempowered. Yet what we learned was we still had a lot of DO.... we were no longer performing tasks in hopes for a cure but we fought hard for comfort care throughout the end of Mattie's life. 

Bright Lights, Big Hassles For Children In The Hospital

http://www.npr.org/sections/health-shots/2016/06/02/480432053/bright-lights-big-hassles-for-children-in-the-hospital

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Blog Posting from September 4, 2009 (four days before Mattie died)

As our readers know, Mattie was in intense pain on Thursday during the day, which is one of the reasons he was readmitted to the PICU. However, by Thursday night, Mattie's abdomen was becoming VERY distended. So much so that it looked like he was going to burst open. By around 2am, Mattie looked about nine months pregnant. The whole situation was down right frightening, Mattie was in excruciating pain, and the worst part about this is we weren't getting sufficient answers to our questions. At one point last night, we were dealing with over four different medical residents in our room, all from different specialities. Each professional had their own opinion about what was happening, but guess what?! No two opinions were the same. We landed up becoming highly anxious over all of this, and we were very uncertain how to help Mattie. The surgical resident felt that Mattie needed follow up xrays last night. So literally at 2am, a portable xray came up to take the first xray, and then about an hour later came back for an additional xray. However, I had a major problem with this x-ray tech. This tech had neither expertise working with children nor compassion to help a child in pain. The tech wanted to place Mattie's body in a very uncomfortable position just to take the x-ray. Mattie was hysterical, anxious, and in so much pain that he barely could move his body. Yet the tech kept insisting and becoming impatient with Mattie that he wasn't complying with his directions. Peter was helping the tech, and I went into the room next door, because I needed a break from the screaming and crying. However, when Mattie yelled out, "Mommy," I ran back in the room, and chewed out the tech. I told him he had to learn to think outside the box. If he is working with a patient who is unable to move his/her body to a certain position, then it was his job to find another way to get the job done. So I showed him how it could be done differently. I was so angry, I wanted to throttle this man.

The situation only got worse. There were two groups of thinking for why Mattie's abdomen was dramatically increasing in size. One theory was that Mattie's pleural cavity was filled with air, and the other theory was the cavity was filled with fluid. Naturally air and fluid are two different things, and should be treated accordingly, not the same way. Our nurses and advocates were concerned about Mattie's distention too, and a few of them recommended the placement of an NG feeding tube last night to help tap and pull out the air from Mattie's abdomen. The problem with this is two fold. Mattie would have to sit still for the placement of this tube without sedation. This may work for a typical child, though I imagine no one likes the gagging feeling this tube produces while it is being inserted, but for Mattie having such a tube placement would only heighten his anxiety. In addition, as Peter astutely said, we are NOT sure that Mattie's cavity is filled with air, and if it wasn't, then we would be subjecting Mattie to an unnecessary painful procedure. So Peter did not consent to an NG tube placement. I was actually on the fence about this, I just wanted the stomach region to return to its normal size. But Peter did a great job, and he actually made the right choice in the end.

So basically after several theoretical arguments with residents, watching them manipulate and touch Mattie's abdomen (which caused INTENSE pain and anxiety), and two unpleasant xrays, we were all wiped out, with no real answers or a plan of attack for this growing problem. By 7am today, I literally couldn't take it anymore. Peter was up most of the night with Mattie, helping him manage Mattie's pain. I was listening to Mattie's pain all night, but physically couldn't move to help him. I was too wiped out from my previous all nighter the night before. Peter and Mattie's wonderful HEM/ONC nurse, Janelle, just couldn't give Mattie enough pain medication early this morning to balance and mitigate the pain. Mattie just kept on screaming and crying. It was completely INHUMANE! I had observed enough to know that something had to be resolved ASAP and we needed answers. Until we were able to get answers the doctors raised the concentration of Mattie's Dilaudid pain dosage, which we hoped would help with the pain, but Peter and I were both concerned that the cause of the pain wasn't being identified. We were only throwing medications at the problem to cover up the pain. So I wasn't happy and grew more and more concerned. 

The irony is, I wonder if the doctors were as concerned as we were. They certainly did not act like it, but Peter and I just kept pressing the issue! I told Janelle, that the on call attending doctor, Dr. Abu-Ghosh had 30 minutes to get herself here to answer our questions, otherwise I was going around her. I needed an attending physician to help us, and had more than my fill of residents by 7am. Janelle worked hard to pass along our messages, and in the mean time, I called Dr. Snyder, Mattie's oncologist. I basically started off the conversation with the line, "I need your help." She could hear Mattie writhing in pain in the background and within 30 minutes, ordered a CT scan and ultrasound for Mattie with sedation. I also paged Debbi, our sedation nurse angel, because I felt we needed a powerful advocate. Debbi responded to my page within minutes and came to visit and assured me that in an hour Mattie would be sedated and scanned. Thank God! I had asked for a CT scan on Thursday, but the doctors felt that Mattie did not need one. Here is the irony of all of this, so far when Peter and I have said that something is wrong with Mattie and he needs further assessment, we are usually 100% correct.

Debbi helped us obtain Versed for Mattie today. Mattie was SO anxious this morning, we could bearly touch or talk with him. Versed helped tremendously and we were able to take Mattie down to the CT scanner. Jey, our favorite CT tech, and Mattie's "big brother" met us in the CT room. He spoke with Mattie and told Mattie that he did not have to get off the stretcher mattress, instead Jey transferred Mattie onto the CT scanner, mattress and all. This was actually a very thoughtful and compassionate gesture, because any additional movements for Mattie were painful.

The CT scan identified the problem immediately. Mattie's pleural cavity was completely filled with fluid, NOT air! Thank goodness we did not do the NG feeding tube last night, because that would NOT have addressed the problem. We met with a radiologist today, who highly recommended a Paracentesis, which is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites. Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis. I liked this radiologist's style, because she performed this procedure immediately under the guidance of an ultrasound. The radiologist pulled out 1.5 liters of fluid from Mattie's abdomen. That is a HUGE amount of fluid, and it is no wonder he was in severe pain. The radiologist told me that when the pleural cavity is under pressure and that level of expansion, that this can cause off the charts pain.

I was relieved that there was an explanation for the pain, because I was also being prepared for the option that this issue wasn't correctable and this was perhaps just disease progression, making it virtually impossible to alleviate Mattie's pain. Hearing this news was devastating alone, and when I heard that the CT scan showed fluid build up, I felt as if I won the lottery because in my mind this was correctable. I also had the pollyanna attitude that once the fluid was drained, Mattie would feel better for a while, and we would be able to be discharged within a day or so. All very wishful thinking.