Tuesday, September 1, 2009

Tuesday, September 1, 2009

Tonight's Mattie creation features a VW Classic Beetle made out of Legos.

Quote of the day: "The sea rises, the light fails, lovers cling to each other and children cling to us. The moment we cease to hold each other, the moment we break faith with one another, the sea engulfs us and the light goes out." ~ James Arthur Baldwin

I can not believe today is September 1. What on earth happened to the summer? For Peter and I, it will always on some level be the summer of 2008. Though an entire year has flashed before our eyes, this has been a life of torture. My mom made an interesting analogy for me today. She said Peter and I are in essence living in prison. We have NO freedoms, we are observed by many people, we can't provide for our only basic needs, and to add to this form of imprisonment, we are also surrounded by illness and now pending death, an unhealthy lack of sleep, and the emotional toll of fighting cancer. How does a parent come to peace with cancer, a disease taking our only child? How does a parent forget the pain, the screaming, the crying, and the scars inflicted on our child from cancer? How does a parent live on without one's child, or experience joy or happiness again? Peter and I both have NO answers this mystery, but we are certain this is something we will never accept. It will be with us forever, we have seen a type of suffering this year that in my opinion is equivalent to living in a war torn country, we are surrounded by intense and profound devastation.

Monday night was absolutely horrible. Peter and I couldn't manage Mattie's pain. He was up on the hour, needed oxygen, and also went to the bathroom in his bed. So virtually we had no sleep last night. This morning I checked my messages and Debbi, our sedation nurse angel, contacted me to let us know that she wanted to move up today's procedure by an hour. Sounds good in theory, but I was still in my pajamas when I received this message, and basically had 45 minutes to get myself and Mattie together and packed up. Mattie was in extreme pain today, no amount of morphine was helping, and how we actually made it to the hospital in one piece, and Peter did not drive off the road, with all of Mattie's crying and screaming was a feat. These sounds of pain remain in my mind, heart, and soul. When we got to the hospital, Peter went with Mattie to the Lombardi clinic and I went to admissions.

Admissions is always entertaining, and why should today be any different!? Peter had his hands full with Mattie in clinic. By the time I got there, Mattie was in a room, and Jenny was trying to distract Mattie with a remote control dinosaur. Jenny was working hard, and it worked for a while. But the pain unfortunately got the best of Mattie.

Left: Mattie and Jenny, with the remote control dinosaur.

Right: You can see just how wiped out Mattie is from this picture. However despite how AWFUL he felt, he was still trying to manipulate the dinosaur.

It became clear to me though that Mattie couldn't manage the pain, nor wait for the procedure to take place. Roxanne, Mattie's favorite nurse in the Lombardi Clinic, came to our aid. She tracked down Dr. Abu-Ghosh, and Dr. Abu-Ghosh could clearly see that the IV morphine was not cutting it for Mattie, so she ordered him IV Dilaudid. Dilaudid is another opioid given for pain relief. Dilaudid was a God sent, it worked instantaneously. It was actually the drug that got us through this very long day!

Peter, myself, and Linda (Mattie's childlife specialist) escorted Mattie to the PICU procedure room. In the room we met Debbi, Dr. Shad (the director of the Pediatric Lombardi Clinic), and Dr. Bell (today's intensivist). Debbi sedated Mattie with Propofol, and Dr. Shad inserted the enema. She also performed a digital disimpaction, however, what she quickly assessed was that there was nothing in Mattie's rectum. All the constipation was up further in the intestines. So the doctors started mobilizing forces and brainstorming what to do about the problem. Peter and I were observing this, and then the word I have been trying to avoid the entire year came up. Mattie needed a NG feeding tube. I tried to be respectful, but I could see decisions were being made that I wasn't comfortable with. Debbi, in her usual effective and compassionate fashion, stopped the process and asked what I was thinking. I am not sure if doctors are used to the solicitation of parent feedback, but I was truly appreciative of Debbi's level of sensitivity and concern. In fact, I shall never forget Debbi and all she does for Mattie and my family. I always know we have an advocate when Debbi is around.

Peter and I consented to a NG feeding tube, because once I took Mattie's shirt off and saw his stomach region, I was SHOCKED. You need to understand that Peter and I can bearly touch Mattie at home. He is hypersensitive to the touch, so I haven't changed his shirt in days, but under sedation, when we gave him a bath, I got to see how Mattie's body had been transformed. Mattie looked like he was 6 months pregnant, and with that, I realized that drastic measures needed to be undertaken to relieve the stomach pressure and constipation. Debbi inserted the NG tube, and then an x-ray was done to make sure that the tube that goes through the nose and down into the stomach was inserted correctly. Sometimes the tube can go into the lungs rather than the stomach, and this clearly would be a disaster. The x-ray revealed that the tube was in place, and soon there after a substance called Golytely was sent running through the tube. In fact, Mattie will receive 1000ml of this liquid. Golytely may sound familiar to those of you who have ever had a colonoscopy because it is a laxative and it is used to clear the intestine before rectal or bowel examinations. In addition to Golytely, Mattie also had an insuflon (catheter) inserted in his leg and received an injection of methylnaltraxone (which acts to reverse some of the side effects of opioid drugs such as constipation without affecting analgesia or precipitating withdrawals).

My main issue today, which I freely expressed was the fact that we were NOT prepared for the insertion of a NG tube today, and a hospital admission. WE ARE STAYING OVERNIGHT in the PICU, and I writing the blog from room 10 (our first chemo room!). We went in the hospital today for what we thought was going to be a day procedure. Forget the inconvenience to Peter and I, I could deal with that, but what I did not like was that I did not have the opportunity to prepare Mattie for a NG tube. I was worried how he would react to the tube when he work up, after all it hangs from your nose and goes into your stomach. Mattie is highly anxious to be begin with, so any slight change, can be toxic for him. Any case, Debbi understood my concern immediately, and she worked with the doctors to make sure Mattie could continue to receive Dilaudid every hour for pain and comfort. Thank goodness I said something, and thank goodness Debbi found a way to make this happen, otherwise, this would have been a frightening day for us and Mattie. When the sedation wore off, as I suspected, Mattie was completely freaked out by the NG tube, and almost pulled half of it out. We caught it and pushed it back in, and then I had the chance to explain to him why it was needed. He listened, but was clearly scared. You have to be in amazement over Mattie though. He is in such intense pain, can bearly move his body, yet for the most part complies with whatever we tell him. If that is not love and trust, I don't know what is.

None the less, despite being on IV morphine and Dilaudid today, Mattie continues to have pain and to be agitated. He has thrown out all of his nurses from his room, and not to be mean, but because he is SO anxious and doesn't want to be touched or have noise around him. Peter and I must remain near him and quiet.

So far Mattie has had three bowel movements, but we elected to stay over night, because we want to make sure Mattie's system is cleaned out effectively, and we also want him to have access to Dilaudid, something we do not have at home right now. None the less, the passing of stool is VERY messy, and frankly I rather go through tons of hospital sheets than my own. Think about it this way, Mattie's stomach is getting totally flushed out, and we are to expect periodic bouts of uncontrollable diarrhea tonight. Lovely!

Peter and I want to thank the May family for a wonderful lunch of home made carrot soup, salads, and cookies. Liza, I appreciate you feeding us on a very stressful day. We also want to thank the McSlarrow and Wendt families for a very generous dinner. Alison, thanks for ordering the food I seem to crave when under stress. You started my year off with it, and it continues to make a bad, bad day better!

It is our hope that we will be released from the hospital on Wednesday, but we have no idea what the night holds for us. As Norma, our other wonderful sedation nurse said to me tonight, it should be a very *hity night! I told her this is a typical descriptor for our nights, but tonight it was also a very literal description, since we will be picking up a lot of mess. Needless to say we are extremely tired and edgy ourselves.

As I end tonight's posting, I would like to share two messages I received today. The first message is from my friend, Charlie. Charlie wrote, "You and Peter are clearly Mattie's anchors in this life as well as being his safe harbor. I understand what you mean by finding comfort in another's heartbeat; the first rhythm in our lives, all our lives, is our mother's heartbeat. It is the music that we grow and develop to in the womb so it naturally comforts and calms us when we are anxious and in pain. I know you will treasure all of these moments with Mattie, even the most difficult ones but I hope that today's procedures bring him some relief so that you are able to gain a little breathing space. All of us who know that Mattie is headed into the hospital day are praying for him; we all hope he finds relief from pain and less anxiety going forward."

The second message is from one of Mattie's outstanding HEM/ONC nurses, Tricia. Many of you know Tricia to be the nurse who always brings me hot tea in the morning! Tricia wrote, "I can't begin to tell you how painstakingly difficult it is for me to try to find the words to explain just how I feel about the three of you. I knew from the first time I had the privilege of being Mattie's nurse that you were an extraordinary family, full of love, understanding, and patience. It was evident then, just as it always has been that you both would care for Mattie selflessly and with the love and devotion that are a testament to the inner strength that you both possess. I only wish that I could provide comfort for all of you now, as I could during the earlier times. I find myself reminiscing about all of Mattie's antics and the pure joy he felt when he would startle us, then I find myself thinking of what a warrior he has been. He is like both of you, smart, strong and resourceful. I feel like somehow, though I don't know how, that you and Peter will carry each other through to survive this "living hell" because you are also warriors like him. I read the blog religiously and there isn't a second of the day that my thoughts and prayers aren't with you. Vicki, I thank you for the wealth of love and life's lessons that you have shared for they have greatly impacted my life. As a nurse, I concern myself with the physical, psychological and spiritual needs of my patients as well as the needs of their family, and it is at times such as these that I feel so profoundly lost. I will see Mattie always like the sleeping angel I watched over so many times, and I know that he will be the same angel who watches over you one day. I want you to know that Mattie will forever live in my heart and I PRAY EVERYDAY FOR PEACE AND COMFORT FOR ALL OF YOU."