Tuesday, December 2, 2008

Tuesday, December 2, 2008

Mattie held his own last night during chemo. He was still up when Peter and I went to sleep. He went to bed while watching a Scooby Doo video. He has trouble relaxing and shutting down, more so these days than ever before. Mattie was up several times during the night because he had to go to the bathroom, not unusual considering the quantity of fluid being pumped into him. As one point during the night, Mattie did not make it to the bathroom in time, and Peter and I were lifting him with the help of Melba (Mattie's nurse) and trying to place clean sheets under him. Between the bathroom runs and vital checks, it felt like a very busy night.

This morning Mattie was resting peacefully, but I had to wake him up since the hospital was changing all the mattresses in the PICU. I did not want the staff to move Mattie, so I woke him up and got him cleaned up and transferred into the wheelchair. Mattie did not take well to being woken up and this started a chain of other reactions. While in the wheelchair I tried to offer Mattie different activites to do together. I even asked him if he wanted to visit with Brandon or go to the childlife playroom. He refused all ideas. It was then that he asked where Peter was. When he found out that Peter left early for work, all hell broke lose. Mattie started to scream, "I want my Daddy. Daddy, Daddy, Daddy!" At first I understood Mattie's desire to be with Peter. But the more hysterical Mattie became, the more I was unable to reason and rationalize with him. I tried every thing possible. I listened, I empathetized, and then I explained that when Daddy can't be there for him, I am. I even called Peter at work three times during the day to let Mattie talk with him and they exchanged two e-mails. I thought we would break through this fixation on Peter by mid day, but no such luck. The issue became more pronounced as the day wore on. By noon, my parents came to visit and they couldn't get over what they were seeing. By 12:15pm, I couldn't take the screaming, crying, and the irrational behavior. Mattie was also not allowing medical staff into the room. So I went out to the nurses' desk and asked that Mattie be given versed, which is an anti-anxiety medication that works instantenously, but its effects only last for about 20-30 minutes. The medication calmed him down a bit, he was still upset, but not looking like he was going to jump out of his chair or hitting me with his leg.

Soon thereafter, Grace (my friend and RCC mom) came to visit me and brought us a wonderful lunch. Mattie loves the Scooby Doo pasta. It is his meal of choice these days. Also Mattie LOVES the snowman nightlight and wonderful books, not to mention the beautiful holiday cookies. Thanks Grace for visiting, and I wish we had an opportunity to chat today.

But by 2:15pm, Mattie was screaming again in full force. Again, I asked for the medication to calm him down. During the afternoon, I kept growing more and more concerned with the behavior I have been observing and experiencing with Mattie over the past 12 days. But today's behavior disturbed me because I could no longer console and comfort Mattie. In addition, I couldn't rationalize with him. So at which point, I went out to see when our psych consult was coming to visit us. The residents gave me some excuse that they couldn't get a hold of the psychiatrist. It was at that point, I started yelling. I told them this wasn't acceptable. That I had been waiting all day for this doctor, and if they can't get someone from the hospital to help me, I was going to find someone on the outside. That seemed to get results. After my tirade, I went back to the room, and in between holding Mattie and dealing with his fits, I logged onto the George Washington University's library database system. I have learned when all else fails, research the problem. So I started using all sorts of keywords, until I found something that intrigued me because it described Mattie's situation to a T. It is "medical PTSD." I have felt for a week now that Mattie has PTSD like symptoms, but I was unaware that one can develop PTSD from a medical procedure. It certainly makes sense, but I found reading the abstracts fascinating. In addition, parents of children with cancer can also get PTSD, you don't have to personally experience the traumatic event to be able to get PTSD. It can be your emotional reaction to observing the traumatic event. Not that this describes me, but I found it interesting what a profound impact cancer can have psychologically on a patient and his/her caregivers.

At around 3pm today, my friend Margaret (Mattie's first preschool teacher) came to visit me. She brought hot teas and some delicious cakes. Mattie later enjoyed the vanilla cake. It actually made his afternoon. Which wasn't easy to do! Margaret and I were having a nice conversation, but Mattie's doctor wanted to talk with me, so our visit was very short. Thank you for visiting and for listening.

I spoke with Dr. Toretsky several times today. I am sure by now the hospital staff thinks I am unstable. I think when you are caring for someone who is affected so deeply emotionally, it is almost impossible for it not to take its toll out on you. None the less, when I spoke with Dr. Toretsky today he did reveal to me that Mattie's emotional reaction is considered on the extreme end of the spectrum based on all the other osteosarcoma patients he has treated. Part of me explains this reaction to the fact that Mattie had four tumor sites, unlike the typical one tumor site most children deal with. Of course I realize each person is unique, and what can impact one person a certain way, produces a totally different reaction in another. Any case, Dr. Toretsky has been very supportive of our need to deal with Mattie's acute anxiety.

I also had the opportunity to talk with Mattie's social worker today. As I was talking to Denise I began to put two and two together. If Mattie is really dealing with trauma, then being around the people he trusts (myself and Peter) is not that unusual. Certainly he would cling to us dearly. As we kept on talking I then realized a technique used by one of Mattie's nurses was more harmful than beneficial. You may recall that I mentioned a nurse came in yesterday and basically told Mattie not to yell, to stop screaming, to calm down, to focus on his sound machine, and not to yell until she came back into the room. While doing this, I was removed into the hallway. At the time, I did it, but upon further reflection I realize how detrimental all of this was to Mattie. In fact, last night Mattie told me he was frightened when this nurse came in and gave him a talking to. I am no trauma expert in any sense of the matter, but it seems like trauma 101 that if you remove the safety objects or people for the trauma survivor, then this in a way could exacerbate the trauma.

I had the opportunity to meet with a psychiatrist today who got to see Mattie in full form. In order for me to talk with the doctor, I had to hold Mattie's ears closed and wrap his head in my shoulder. The psychiatrist understood and observed my concerns and agreed that prescribing Mattie anti-anxiety medication is a good way to proceed in the short term. However, like we both know that will not get to the heart of the issue. But I feel unless we stabilize his behavior, he won't be able to comply with treatment, he won't be able to participate in physical and occupational therapies, and certainly he will sink further into social isolation. I am very conservative when it comes to psychotropic medications, but in this instance, this is in Mattie's best interest. The psychiatrist told me that most parents under these circumstances would have cracked along time ago, and Dr. Toretsky told me yesterday that we was amazed with the way I handled Mattie during one of his tirades. So much so he thought I deserved a hug.

So tonight the issue is to convince Mattie to take this anti-anxiety medication, which is administered orally. He is not very compliant with taking oral medication. Toward the end of the evening Bob came to visit Mattie. Bob came to remove Mattie's dressing completely on his right leg, and partially on his left arm. We gave Mattie some medicine to manage this, but Bob and Mattie had their usual lively conversation, and Mattie did not treat Bob like I observed Mattie treating everyone else today. In fact, Mattie told Bob what Sparky's (Mattie's central line) middle name was today. A high honor. In return Bob told only Mattie his middle name. It was a very cute and tender dialogue.

I received a lovely e-mail today from Tad. Tad is Kazu's dad (Mattie's friend from SSSAS). Tad is incredibly supportive of me throughout this time, and today he wrote, "Do not listen to that doctor's indications on Mattie's fear cycle. Cancer/disease and the related physical and emotional "battles" are more than enough to create fear in Mattie. As you have observed so often, Mattie is far more sensitive to what is going on than many give him credit for, particularly those who are not with him 24 hours a day. Contrary to the doctor's hypothesis, you are the source of Mattie's security, and the target for whatever fears Mattie projects. As the source of comfort, with who else would he share his daily and innermost fears? As with all such things, it is a great burden, but also a mark of great love."

After the day I have had, I feel frazzled from my head to my toes. I am sure Peter isn't far behind, because I kept calling and e-mailing him today. Amazing how he got any work done. I frankly don't know how we will manage with the second administration of chemo which is happening as I type this. Erin, our nurse, told us that one of the bottles of chemo Mattie is receiving tonight is $15,000 alone. Mind you he is receiving five bottles of this stuff this week alone. Got to love it, no? But in the midst of all this chaos, we had a delightfully tasty dinner thanks to the Arends family. The cheesecakes were the envy of the PICU. My hope for the next day or so is that Mattie complies to take his medicine and that he continues to do well on his new chemo regimen. We are so distracted and focused on the emotional things, that we can't even process what is going on chemo wise.

I end tonight by thanking Linda and the childlife interns today. Linda brought a whole bunch of Christmas things to Mattie's room in hopes of cheering him up and getting him to participate in decorating. So far, he isn't interested, but I am hoping with time this week he will change his mind. The interns today helped me do all our laundry, since Mattie wouldn't allow me out of the room to get this simple task done (a task that I happen to like because it gives me a break from the usual room routine).