Thursday, May 21, 2009

Thursday, May 21, 2009

Quote of the day: "A mother's arms are made of tenderness and children sleep soundly in them." ~ Victor Hugo

On Wednesday and Thursday night, we have been lucky enough to have Erin, a fantastic HEM/ONC nurse, working with Mattie. Erin is a perfect match for Mattie in his battle against Osteosarcoma, because she is very calming, soft spoken, and is able to match Mattie's mood. In fact, Mattie told Erin tonight that he loved her. I am very fond of Erin, because she was the nurse back in August who taught me how to change Mattie's central line dressing and also maintain his lines. Our days have been so stressful this week, that having Erin at night has been SO appreciated.

We all had a chuckle last night (which we needed!). Erin brought in a syringe filled with melatonin. This is the natural hormone that Mattie's psychiatrist wanted him to try to help regulate his sleep-wake cycle. Well the hospital does not have a liquid version of this, so Erin had to crush up the pills and put them in water. By the time this concoction got in front of Mattie, it looked like cement. He refused to take it because he thought it would clog up his stomach like cement. I give him a gold star for attempting to taste it. Peter and I tasted it too, and we all agreed there was NO way this medication could go down without making us sick. We have been laughing about this cement medication all day. We haven't lost our sense of humor, which is a good sign.

Mattie did sleep throughout the night, other than getting up to go to the bathroom. At around 6:30am, Mattie woke up in pain, and Erin gave him Morphine. Mattie then slept for several more hours. Peter worked from the hospital today. Having Peter present made the day MUCH better for all of us. Mattie had several difficult times today, but with both of us around, it helped balance the load, and I truly believe Mattie found great comfort in having Peter with us.

Peter contacted Dr. Peters today. Some of you may remember that he is the head of the microbiology labs at Georgetown. Dr. Peters helped us before when the doctors thought Mattie had VRE, a contagious infection. Dr. Peters told us we could call upon him for his assistance any time. Peter and I have been very suspect regarding Mattie's central line infection. We feel he doesn't have one, and Peter discussed our concerns with Dr. Peters today. Dr. Peters examined Mattie's cultures personally, and we will know something definitively tomorrow, but Dr. Peters suspects that Mattie doesn't have a line infection. Instead he thinks that the sample was contaminated during the collection procedure. We want to get to the bottom of this because if Mattie doesn't need Vancomycin, we would like him off of it.

Ann came to visit with us today. She gave me several wonderful items, such as a CD of photos from Mattie's walk that were taken by Jan Holt (a SSSAS mom). Peter and I are going to find a way to post these pictures somehow, because these are very well done. In addition, Mattie's kindergarten teacher video taped the ceremony at the walk and other special moments at the walk. Thank you Leslie! We so appreciate the pictures and video, and we are thrilled that the energy of this event was documented and captured. Ann brought us a wonderful lunch and while Mattie was sleeping, Peter and I went outside and enjoyed the fresh air and lunch. It is funny how you take your everyday freedoms for granted until you don't have them! As we were finishing lunch, Ann text messaged me and said Mattie was up and calling for me. So Peter and I packed up quickly and headed back to the PICU.

When we arrived, we could hear Mattie crying, and Mattie's wonderful nurse, Katie, was already getting Morphine together in a syringe to give to Mattie. It was determined today that Mattie does indeed have mucositis (a painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer). Peter and I sat with Mattie until he calmed down, and Ann took a few pictures of the three of us, because it seemed like a tender moment for us. In the midst of trying to calm Mattie down and give him Morphine, two doctors walked into the room. You are going to love this! These doctors are part of the pain management team and they came to discuss Mattie's lung surgery with us and how Mattie's pain will be managed. They opened their mouths and began talking about the surgery in front of Mattie, and before they knew it, I gave them their walking papers. There was NO way hearing about the lung surgery would have been a good thing for Mattie at that moment. He was already highly agitated and anxious. I was surprised they couldn't assess that for themselves. But I am beginning to see that the medical community underestimates the cognitive ability of the children they treat. Because these patients are young and tiny, doesn't mean they are not perceptive, bright, and clued in!

After Mattie received Morphine he wanted to build something out of Legos. But we had no Legos to do this with. So he sent me out shopping for Legos, and Peter and Mattie took a nap while I was gone. When I tell you that getting into a car, driving to Target, and purchasing Legos took every ounce of energy I had to give, I am not kidding. I certainly could have tasked someone to do this, but I needed to see the Lego sets myself, because Mattie has quite an extensive collection by now. It was a strange feeling leaving the hospital and going shopping in Alexandria. Alexandria is where Mattie's schools are located. Some how I don't like mixing my worlds. I felt like a mess today, was dressed in one of my hospital uniforms (as I call my hospital clothes), and somehow when I am in this frame of mind, I have trouble dealing with the outside world. I am sure that sounds strange.

When I arrived back at the hospital, Mattie heard me enter his room, even though he was sleeping. He was excited to see what I bought him, and he and Peter started right in on a Lego set. While they began this process, my parents arrived and my dad stayed to play with Peter and Mattie. It was a hard day though because Mattie wouldn't allow Jenny or Jessie (his art therapists) into his life today. This is so reminiscent of the Fall, post surgery, where Mattie was clingy and wouldn't allow others into his world. My mom and I decided to leave the PICU and have tea together. On our way out, we met up with Dr. Shad and Jenny. Dr. Shad is the director of the pediatric HEM/ONC practice, and I told her how upset I was yesterday with the lack of care and concern with regard to Mattie's mental state. Dr. Shad heard my issues, and promised me that they would be addressed.

My mom and I went on campus to get tea, and I bumped into my good friend, Lorraine. Lorraine came on campus for a medical appointment and she wasn't feeling well, so she did not want to actually come and visit us. However, we had a chance to catch up outside together and we chatted for several hours. While we were all sitting in the hospital rose garden, we met up with many hospital staff members who were cutting through the garden during the shift change. Debbi our sedation nurse chatted with us for a while, and she shared her insights with me as to why Mattie may be having some trouble now as he has hit his end of treatment. One thing is clear though, there are many things that must be processed with Mattie, his illness, the fact that he is still disabled, and his anger around all these things, and of course we need to start discussing Mattie's future. Mattie has been so involved with living in the hospital for the past 10 months, that now that this is over, perhaps on some level he is wondering what is next? Clearly, I would imagine he is wondering if this is over why he still can't walk and he doesn't feel well? After all the treatment is supposed to make him better! In either case, we enjoyed chatting with Debbi, and my mom and I were happy that we had a chance to visit with Lorraine. Lorraine has known Mattie since the second day of his life, when she visited me in the hospital after Mattie's birth, and Mattie's illness has hit her hard.

We want to thank the Keefe family for a wonderful dinner from Papa Razzi. We so appreciate the support and your generosity.

Tonight is turning out to be very interesting and challenging. We are noticing a level of hostility and aggression about 15 minutes after Mattie takes Morphine now. It is simply nasty to experience. Peter gave me a heads up about this tonight, since he was the recipient of it this afternoon. Sure enough, after Mattie received Morphine tonight, he started picking a fight first with Peter and then with me. In fact, he asked me to leave the room, because he only wanted to be with Peter. So right now I am sitting in the childlife playroom typing the blog. All of this is just SO hard to deal with, and I know he needs the pain medication, but the side effects are almost as bad as the actual pain itself. On Friday, Peter heads back to work, so it should be an interesting day for me. Especially since Mattie is not open to letting others in his life at the moment. Will this week ever end?!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What an awful day on Wednesday. It certainly seems like this one is going to win the "week from hell award." I think your list of top ten issues impacting Mattie is right on; maybe it would have made more impact on Dr Biel if you had offered it up Letterman style. Sometimes I despair when I hear what people go through with some of our medical personnel. I know you were frustrated and insulted when he offered the list of "helpers" with behavior modification qualifications but you may have found a gem in the pile of otherwise not very useful names. Oftentimes things turn out this way; people offer up something one way and it turns out to be useful in another. I think you and Pete made a really good decision to both stick with Mattie right now; it sounds as though between your mutual exhaustion and Mattie's pain and anxiety that trading off/splitting duties is the only way to cope at all with this situation. I hope they can get to the reason for Mattie's pain and address it quickly; as you know unrelieved pain is exhausting and debilitating for both the patient and the caretakers. Mattie, like you and Pete, doesn't have much in the way of reserves right now; all I can say is that you and Peter are amazing, wonderful parents and those of us who see what you are going through will continue to support you and pray for you."