Wednesday, September 2, 2009

Wednesday, September 2, 2009

Tonight's Mattie creation features a roach made out of model magic! This was created during Mattie roach phase, when he was fascinated by these bugs, and even more excited about scaring me with them!

Quotes of the day (Thanks Charlie and Tad): "I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." ~ Edward Everett Hale



"I have heard there are troubles of more than one kind.Some come from ahead and some come from behind.But I've bought a big bat. I'm all ready you see.Now my troubles are going to have troubles with me!" ~ Dr. Seuss




Mattie had a relatively peaceful night of sleep, which to me was odd since he was on Golytely, which was expected to flush out his intestines. Peter and I on the other hand did not get to bed until after 1am, and then traffic started showing up in our room by 6:45am. In fact, one resident knocked on the door, but none of us answered. Despite that she came in anyway, and then tapped my knee so I would wake up. After she spoke to me, five minutes later another resident entered and literally did the same thing. The third visitor was a portable x-ray machine, and by that point, I had absolutely had it. I was exhausted, felt and looked like a mess, and had the chills. While Peter helped Mattie with the x-ray in his room, I waited in the hallway, and had a blanket wrapped around myself. Gone are the days when I would wake up and get myself showered and dressed before the residents started out our day. Now I just don't care what I look like at this point.

After this fiasco, I decided to take a shower. I opened up the shared shower door, and lost it. I got a hold of Katie, Mattie's wonderful HEM/ONC nurse, and had her look at the state of affairs in the shower. There was dirty linens and a whole lot of other undesirable things in the shower. Because I am in such a task mode, I put on gloves and was planning on cleaning the shower myself. Katie stopped me and went out to get the cleaning lady for the floor. So I sat and waited for Shirley, one of the women who works hard at cleaning the PICU. I have gotten to know Shirley throughout this year and while she was cleaning the shower, she spoke to me about Mattie. She either knows or can sense that Mattie is very sick and dying, and she told me that God selected me to be Mattie's mom for a reason. She said that not all moms could handle this pressure, and yet I do it each day, and I am not curled up in the corner. She also felt that God needed Mattie, and that my responsibility is to give him back to God. I understood what she was saying and she was trying to help me put this massive loss into perspective, and to see that Mattie has a calling. None the less, I rather Mattie not have a calling, and that he stay with me. I assure you seven years is not long enough even if they were at least six very happy and fun years for Mattie.

What perked up our morning was a visit from Tamra. Thank you Tamra for dropping off breakfast for us. That was a lovely and much appreciated surprise. It started our day off well.

The strategy today was to try to get Mattie discharged from the hospital. However, the first thing we had to do was wean Mattie off of Dilaudid. This is not a pain medication we have access to at home right now. So the doctors decided to up his Morphine dosage today, to see if that helped manage the pain. We have IV Morphine at home, so this would make the transition home easier if Mattie remained on Morphine. I stayed with Mattie, while Peter rounded with the doctors regarding Mattie's case. Peter and I discussed a whole list of issues that we wanted answered by the doctors. However, Peter and I continued to grow more agitated by the lack of specific answers we were receiving about Mattie's constipation and the treatment with Golytely.
We wanted to know how much Golytely was Mattie going to receive and why. We also wanted to know what quantity of stool they were hoping to obtain from Mattie, to indicate that his system was indeed flushed out. None of these questions could be answered, and today alone the Golytely infusion through the NG tube was started and stopped several times. First one resident would say that Mattie needed more Golytely, and then another one would come in and say that she was concerned he was building up too much fluid and the Golytely should be stopped. As the day wore on, our level of frustration increased!

Jey, Mattie's "big brother" came by to visit Mattie. Jey was truly upset by what he saw when he entered Mattie's room. Mattie looked wiped out, was in pain, was vomiting, and clearly looked and acted like a different child. Jey left the room, and minutes later so did I to get a box of tissues. I met Jey and Maria (the PICU administrative assistant) in the hallway, and Jey was moved to tears, and Maria wasn't far behind. Maria jumped up to give me a hug, and they both felt that I should take periodic breaks from Mattie's room because the whole scene is heart breaking and overwhelming. Thank you Jey for bringing Mattie a coloring book and crayons, and for supporting us through this horrific time in our life.

Mattie spent part of the day resting, thanks to his new dosage of Morphine. Mattie now receives 1.5mg of Morphine each hour, and can get a .5mg bolus of Morphine through his pain pump every 15 minutes. I am thrilled this new concentration is working, and the doctors were able to readjust things to ease his pain. While Mattie was resting, things began to hit me. It is moments of silence and down times, when I begin to cry. I was crying about all sorts of things.

Today I got to see Mattie's illness through his nurses eyes. I could see that Katie and Tricia were trying very hard to support us in any way possible. They knew the real feisty Mattie, which is clearly a night and day difference from what sits before us now. Tricia spoke with me and basically told me though she sees what I am going through, she has no idea how we are managing nor how we truly feel. She can try to empathize, but that no one can know the true depths of our devastation. VERY TRUE! I appreciated Tricia acknowledging this. Tricia expressed concern for me because I looked tired and dehydrated. She actually sat me down and made me drink something. Tricia has taken care of me right from the beginning of this whole process, and though I do not take easily to being cared for, I do accept it from Tricia. We sat today, cried, and as always I feel she truly cares about Mattie and my family.

Anna, Mattie's physical therapist, also stopped by to visit today. You may recall that Anna went on a three week honeymoon around the time Mattie's terminal status was diagnosed. When Mattie saw Anna, he told her he did not have the energy for therapy today. Anna certainly knew that, but she came to visit because she too cares and supports our family. Are you seeing a trend here? Yes we are in the hospital, but we are surrounded by people who have become our second family this year.

We would like to thank Tamra for not only a wonderful breakfast, but a delicious lunch. Thank you also for the wonderful desserts! We so appreciate your thoughtfulness and kindness!

It was 4pm, and Peter and I grew concerned because we still did not have a discharged plan in place. So Peter and I strategized how to attack this problem while Mattie was sleeping. In fact, the past day in the hospital has been so peaceful for Mattie in comparison to the nightmare we were living with at home. This peacefulness gave Peter and I a chance to actually talk to each other and eat together. Mattie was too out of it on pain medication, to really object to these things. Peter and I realized we needed to consult with a gastroenterologist directly. So we told Katie our concerns and she found a way to make this happen. Thanks Katie!

At around 6pm today, we met with Dr. Pluta, a gastroenterologist. She spoke to me about Mattie's abdomen x-ray results as well as his treatment for constipation. I told her I wasn't going to leave the hospital today unless she thought that Mattie's constipation was well attacked. Peter and I were frightened that Mattie had a bowel obstruction since he did not urinate or have a bowel movement for over nine hours today. Mind you during that time he received almost 1000ml of fluid. This is a lot of fluid without providing any output. As we sat in Mattie's small PICU room, our minds were racing for explanations and of course we now always think the worst. Dr. Pluta gave me quite an education on Golytely. I thought Mattie was receiving a lot of this medication to clean him out, but it turns out Mattie was NOT getting the therapeutic dosage that would produce any noticeable effects. I was shocked. Mattie was receiving 50ml to 100ml of Golytely an hour through the NG tube. Dr. Pluta said that Mattie would have to receive more than 400mls an hour. I guess I began to wonder why Mattie wasn't given the appropriate dosage to begin with, and of course I began to question why we were hospitalized overnight, if the 100ml dosage per hour was a waste of time. Throughout this conversation, Tricia was right by my side, and advocating for Mattie's comfort, as well as for my need for logical and responsible answers.

Dr. Pluta seemed to think that suppositories and Methylnaltraxone through Mattie's leg catheter, will help prevent constipation into the future. None the less, Mattie still isn't completely flushed out, still has abdominal pain, and is retaining fluids in his face and stomach region. So we continue to monitor him.


Though Mattie was afraid to go home tonight, he eventually conceded. Before we left the hospital, Katie had to extract the NG tube from Mattie stomach, through his nose. Mattie wasn't wild about this, but handled it like a champ. He is so incredibly brave and really complies for the most part with treatment. I am and will always be so proud of him.

We want to thank Dawnee G. for a fantastic dinner! Thank you Dawnee for bringing the food to us at the hospital. We were not able to eat it on the spot since we quickly packed up Mattie and went home, but once settled at home we got to enjoy the splendid Italian meal, so thank you!

Tomorrow we head back to clinic for a blood test and the administration of Avastin. Most likely we will not be able to give Mattie VP-16, oral etoposide. I have come to peace with this, and certainly do not want to keep an NG tube in his body, just to receive a treatment that may not work. This would not be a good quality of life for Mattie. He already has a ton of other physical limitations.

After Mattie's clinic appointment tomorrow, we would like to go to the pet store to pick out a pet fish. I have been opposed to this for so long, especially since we have a cat, but because our cat has been boarded for the year, and also needs surgery now, we are unable to care for her back in our home yet. Mattie wants a pet, and has always wanted a fish. So we are on a mission tomorrow. If any of our readers have some guidance about the type of fish we should get, do not hesitate to e-mail me.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read Tuesday's blog and I thought about how we take the functioning of our bodies for granted. We awaken and assume we can breathe, eat, eliminate, etc naturally and without pain. Then we read what is happening to Mattie and I am left speechless in the face of his suffering and your endurance. I know you are totally exhausted and that this unexpected admission to the hospital along with all the other problems that have arisen are taking their toll on you and Peter. I wish there were something I could do to help relieve some of that burden. In Judaism we are supposed to thank the Lord each morning for the proper functioning of our body parts including our breath. I don't think I will ever take it quite as much for granted again. I will share with you the Jewish prayer for healing that I say daily for Mattie. May the One who was a source of blessing for our ancestors, bring blessings of healing upon Mattie Brown, son of Peter and Vicki, a healing of body and a healing of spirit. May those in whose care they are entrusted be gifted with wisdom and skill, and those who surround them be gifted with love and trust, openness and support in their care. And may they be healed along with all those who are in need. Blessed are You, Source of healing."