Monday, August 31, 2009

Monday, August 31, 2009

Tonight's Mattie creation features a model magic lion that he sculpted and colored while in the PICU.

Quote of the day: "What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." ~ Pericles



Mattie had a hard night. He went to sleep around 1am, but around 3am, he was talking and screaming loudly in his sleep. I woke up very startled and in a panic. When I went to his side, I could see he was dreaming, however, I was not happy with his breathing pattern. So I grabbed our pulse oximeter machine which measures the oxygen concentration in Mattie's blood. I am glad I did this because normal oxygen concentration is 100, however, Mattie's oxygen level was 88. So I woke Peter up because I did not want to startle him as I turned on our VERY loud oxygen equipment. Basically the oxygen machine that was supplied to us converts our regular air in our house to pure oxygen, which is wonderful, we do not need to replace tanks weekly, none the less when the machine starts up it sounds intimidating.

I slept in Mattie's room until about 8:30am, and then Peter relieved me, and I went to lie down and he stayed with Mattie. Mattie had a rough morning though and did not want to get out of bed. He woke up periodically in INTENSE pain, vomiting, and very tired. He told us he was TOO tired and in pain to get out of his bed and go downstairs. Mattie did not get out of bed until 4pm. There are certainly quiet moments to the day (however, even in those moments, we must be by Mattie's side), but when pain hits, it feels like you are being hit by a tidal wave. Peter and I land up scrambling all over the place to push medications, and to work hard at keeping Mattie calm. It is hard to keep him calm, because with intense pain, naturally comes intense anxiety. Anxiety because you do not know when the pain will subside, and that is down right scary. None the less, Peter and I are tired, and some times in these moments of chaos and panic, we do not always agree on how to handle them. We land up getting upset with ourselves and each other. These moments I would imagine would challenge even those with nerves of steel and who have had a good night's sleep. We haven't had a good night's sleep in over a year, and this nightmare is happening to our son, so to me all bets are off at remaining calm and composed 100% of the time.

We want to thank the McSlarrow family for a VERY generous lunch today. Peter and I weren't expecting lunch at all, and when it arrived it was a lovely and tasty surprise. Alison, I loved the asparagus soup, salads, and vegetarian pizza. The brownies were so appreciated. Thank you for all your incredible support and all you do for us!

At 4pm, I was able to coax Mattie downstairs to the couch. He did not want to hear any noise initially, and he just sat by my side, with his head and ear on my heart. I remember enrolling in an art therapy course at The George Washington University years ago. Our class instructor demonstrated a position of sitting with a sick or dying client that remains with me today. She asked for a student volunteer in the class, and a young girl stood up and approached the professor. The professor had the student sit on the floor. The professor than sat down behind the student. She had the student lean back and put her head on the professor's heart. All of us watching this were first stunned over the intimate and sensitive position being displayed right before our eyes, but as the professor kept on talking we immediately started to feel at peace. She explained that when someone is sick or dying, the fastest way to communicate love, understanding, peace without saying a word is to hear another's heart beat. Needless to say, this visual was so powerful and meaningful, that it has remained with me always. When Mattie naturally found this head on the heart position today, I had the flashback of being a graduate student again, and remembering the intense human connection I witnessed right before my eyes. In a way, the rhythm of the heart is therapeutic and calming, and it definitely worked to calm Mattie down.

We could tell Mattie was in a lot of pain, and though we would love to see him leave the couch, we knew it wasn't going to happen today. In fact, in addition to IV pain meds, Mattie needed several doses of IV Valium to manage his anxiety and fears of pain. To get his mind off of his pain, I asked him if he wanted to see the movie, Mamma Mia. Mattie's friend Claire F. recently gave him this movie, and I thought since Mattie is a big ABBA fan, like myself, he may enjoy this distraction. I had seen the live musical years ago, and I must admit the musical is a thousand times better than the movie, but Mattie and I got a kick out of the movie anyway. Why? Because many of the characters in the movie can't sing. Especially Pierce Brosnan. In fact, each time he sang, Mattie and I would burst out laughing. Mattie and I watched part of the movie with my parents. We all loved watching the movie together, listening to the music, and we also had a good time laughing for a change.

This afternoon Ann called me to check in. I was telling her about Mattie's pain today and also told her that I received an e-mail from Mattie's doctor about the fact that I may need to replace Mattie's insuflon (the leg catheter that is being inserted tomorrow under sedation) every 3 to 4 days at home. Even the thought of doing this to me is hysterical, hysterical because even medical personnel wouldn't do this without sedating Mattie. So it is absurd to think I can do this at home without sedation! Ann then told me about her day, and as she was talking, I found our lives filled with caregiving chores so unbelievable and indescribable that I burst out laughing. I suppose if this pace doesn't make you cry or shut down, the better option is to laugh.

We would like to thank Sara and Michael tonight for a lovely home cooked dinner of paella and shrimp, thank you also for the chocolate you brought back from England. Thank you for all your support and lovely note you wrote us.

As we head into Tuesday, Mattie will arrive at the hospital at noon. I will have to admit him for the day, and his procedures will take place under sedation in the PICU. Mattie will undergo a digital disimpaction, an enema, and the insertion of an insuflon catheter (in order to receive subcutaneous medications through injections). I e-mailed Debbi (our sedation nurse angel) today, and under sedation we will also give Mattie a bath, clip his nails, change his pain patches, and also change his central line dressing. I am truly grateful that Debbi is willing to allow us to do this hygiene maintenance.

Tonight, Mattie continues to remain on the couch as I type the blog. Peter is sitting with Mattie and watching some episodes on the Science channel, but Mattie is moody, edgy, and will not let Peter out of his sight. It is very difficult to remain seated and focused on someone's needs 100% of the time, but Peter continues to do this as do I. I certainly could not care for Mattie by myself. I am grateful that Voxiva, Peter's company, has allowed him this time at home. It actually makes staying at home possible, otherwise I would need the support of the PICU.

I would like to end tonight's posting with a message and a video clip. The first message is from my friend, Charlie. Charlie wrote, "Mattie and his gifts and his sayings are woven into the lives of all who have traversed the lines of this blog. As I look back at people's responses to your postings I see increasing compassion, growing awareness of the fragility of life as well as a desire to connect and offer support to you. I am so sorry to see how difficult everyone's lives have become now as Mattie becomes more anxious and clings ever more tightly to the two of you. I agree with you that Mattie's pain seems to be more than just a problem with his bowels; cancer has a way of overriding all our abilities to control the pain it causes. Hopefully though, the procedure on Tuesday will give him some relief and perhaps he will be willing to move about a bit more. You are absolutely right to sedate Mattie for the procedure; I can't even imagine how anyone would expect an illness traumatized child to cope with another procedure without it. My heart is with you as you face another difficult day, my unshed tears I offer up as a prayer for relief of Mattie's pain."

While watching the movie Mamma Mia today, I heard an ABBA song entitled, "Slipping through my fingers." This song was not in the live musical, so it caught my attention. This is a very moving song because it describes a mother's regret at how quickly her daughter is growing up, and the lack of time they have spent together. This is a song all parents can relate to, because our children grow rapidly right before our eyes. One minute they are babies, and then you blink and they are in school and all grown up. However, in our case, Mattie is truly slipping through our fingers, and to me this song spoke in part to our loss and regret.

http://www.youtube.com/watch?v=xfObZZshunA