Tonight's picture was taken on May 23 of 2009. That weekend Mattie got it in his head that he wanted to design an alligator out of Legos. Except we did not have enough GREEN Lego bricks. So literally Peter jumped into the car and drove out to the Lego store and came back with enough to design the beautiful creature you see here!!! Of course nothing about just jumping out from the hospital to the Lego store was normal! Living in such chaos was anything but NORMAL. We were living on very little sleep, under great duress, for such a prolonged period of time! Yet Peter and I were determined to function to make Mattie's life as bearable and comfortable as possible, which was not easy given the circumstances and at times some of the toxic people we had the misfortune of dealing with.
Quote of the day: No matter how much suffering you went through, you never wanted to let go of those memories. ~ Haruki Murakami
As the fifth anniversary of Mattie's death approaches on Monday, I think it is important to take a look back in time. The posting below is what I wrote on September 4 of 2009. I think it is important to reflect back in time to read what was going on in Mattie's life and in ours. As you read my words, I realize they may be just that.... words that depict a story, but for me, they are snapshots of the reality that lives within me. It helps to explain what motivates Peter and I and why we can never forget.
One thing you should note when reading this posting is that on August 5th, we did learn through scanning that Mattie's condition was terminal. However, we did not know exactly what that meant. We did not know how much time Mattie actually had with us! In fact, as you read this posting below, you will see that I did not know that I only had DAYS left with Mattie. Mainly because the doctors did not tell me Mattie was dying. I only got a clue when two of Mattie's nurses confronted me and told me!
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The blog from September 4, 2009:
I have so MUCH to report today and yet so many emotions going around in my head that it is hard to know where to start. I will begin by sharing our harrowing Thursday night. This was a night that Peter and I will always remember!
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 specialties 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 bearly 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 (a lovely individual who was Cody's doctor, many of you may recall the story of Cody, a young boy Mattie's age who died from his four year battle with cancer this year) 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.
While waiting for the CT to be completed, I spoke with Jey in the hallway. He told me a very touching story about how challenging a time it was when he lost his father to cancer. He said he too thought he couldn't go on, and yet if he did not go on, he wouldn't of had the wonderful opportunity to meet and help people like Mattie and my family. I was in a state this morning, and yet Jey's comment remained with me throughout the day. My parents came to visit Mattie this morning and then they went out to lunch with Mattie's director of school counseling, Susan. I appreciate all of you who are supporting my parents as well! Mattie really doesn't like anybody in his room other than Peter and myself, so my parents only come for very, very short visits.
I had the opportunity to see Ann. Ann and Alison worked very hard to make sure we were supported today, and Alison ordered us lunch and Ann delivered it to us. Alison also watched Ann's children, so Ann could come and spend some time with me. I am not the best of company, but Ann got me out of the room, into the fresh air, and eating. I appreciate Ann and Alison's efforts, because as the day wore on, it became even more depressing. Ann was up with me last night too as Peter and I were fighting with numerous residents and trying to get down to the bottom of Mattie's issue. I feel blessed to have her support, during a time when I really can't open up and allow others into my life. Ann brought Mattie some gifts today, and one of his favorite ones was an alligator tooth from Florida.
After Ann's visit, Dr. Abu-Ghosh came by to talk with us. She let me know that Mattie's albumin levels were still low and that he would still need to receive lasix to flush out excess fluids from Mattie's body. Dr. Abu-Ghosh explained that we wouldn't be discharged from the hospital until these levels stabilized, but she also prepared me for the fact that they may never stabilize. I am tired, but I put two and two together VERY quickly. What this adds up to is a very sick child before me, one who I may not have around for very long. In addition, it also means that we will be spending more time in the hospital than at home. The first thing that crossed my mind was that Mattie may never see home again. He seems okay with this, since he tells me he doesn't want to leave the hospital. Most likely because he is in pain and feels the hospital can manage it better than we can at home with our limited supply of prescribed narcotics. None the less, this whole revelation for me was extremely upsetting. When I shared this news with Alison, she said that she and the Team would do whatever we needed to recreate Mattie's home within his PICU room. But here is the issue with this, Mattie doesn't seem to mind the fact that he isn't surrounded by his things, this appears to only be weighing me down. The only two things Mattie really wants around him is his cat and a fish. Neither of which will the PICU welcome!
For the first time in weeks, I was able to sit by Mattie's side, and hold his hand and massage his legs. He has been in SUCH intense pain the last two weeks, that he did not want to be touched. So we had several hours of cuddling time today, and within those times, I noticed he became relaxed and peaceful.
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