Thursday, January 29, 2009

Thursday, January 29, 2009

Quote of the day: “Each time we face our fear, we gain strength, courage, and confidence in the doing.." ~ Anonymous

Charlie wrote, "What I read in the blog was all about facing fears, fear of failure, fear of dying, fear of loss. I appreciated your posting of Julie's email because I think it is what so many of us feel; how could any of us feel we have the right to give up when you, Mattie and Pete face the situation you do daily. Fear of loss and of failure is something we all have to face if we are to be successful in our lives, yet it seems like the easy thing to do is to hide and give up without trying. When you show us daily what you face, it gives us all the courage to continue. The blog has another lesson and that is to face one's fears like a child, do what you need to do while thinking of what you like to do (i.e. when you are afraid to stand and walk-sing and skip! or be joyful) and give over your fears to someone else to manage (friends, therapist, God). Thank you Mattie, Vicki, and Peter for this important lesson."



Today was a LONG, LONG day! Mattie woke up at 2:30am and had to desperately go to the bathroom and neither Peter nor I moved fast enough to capture his contribution. So Mattie had an accident. Peter and I scrambled to clean Mattie and the bed. This was a jolt to one's body at that hour. Of course, during the work week, Peter and I are up super early, usually by 6:30am, so neither one of us got much sleep last night. I continue to be in amazement with how we function, and I am blown away that Peter can actually work. Some days we both feel so fatigued that I just want to sit and cry. But what purpose would that serve?!

Mattie woke up at 10am, and soon there after Dr. Matt came to check up on Mattie. Matt spoke with me and wanted to know how I felt things were going. I feel that Mattie's anxiety is pretty much eliminated, and his bouts of depression are not far behind. Dr. Matt was also in agreement with these observations and we feel that Mattie is on the right track with Anna as well. Mattie will continue taking depression medication for another month or so. However, Dr. Matt wanted to know when the last time was that I left the hospital and got some fresh air. I told him I hadn't left the hospital since we entered it on Monday. At which point he asked if I would take a 45 minute break. I told him it wasn't a question of not wanting to take a break, but who would watch Mattie? Who would he be comfortable with? So Dr. Matt spoke to Meg, Linda's intern, and Meg agreed to watch Mattie for 45 minutes. That unfortunately did not last long, because Meg had to escort the music volunteer around the floor today, but fortunate for me, Jessie came up from the clinic and helped me out, so that I could take a walk and leave the PICU. With Linda gone this week, I am hesitant to take breaks. I think Linda's interns are trying very hard, but there is a level of comfort I have when Linda is on the scene. It was lovely to walk outside for a few minutes today and to see students and others living their daily lives. It is almost like I step in and out of a time warp each time I leave the hospital and then re-enter it! The world around me is revolving, and yet for me it is all standing still. Nothing else around me matters but what is going on with Mattie and my world in the PICU.

I had the opportunity to sit in the playroom this morning with Mattie, while he was playing cars. There was a woman in the room that I did not recognize, but quickly assessed she was a social worker. She did not work on our floor, but was from a different segment of the hospital. She apparently comes to hang out in the playroom sometimes when she needs her spirits lifted. She decided to help Laura (Linda's intern) with cleaning some of the toys and while cleaning she was observing Mattie (off the clock if you will), which irritated me to no end. Her whole conversation was about herself! She mentioned how hard her job is and how easy child life professionals have it, because most kids want to interact with the childlife folks. I told her that she did not see the big picture, and that childlife people work very hard, and the kids like them because they work constantly to build that rapport. This social worker went on to observe that Mattie was being spoiled by the childlife interns, because they were giving Mattie a toy he wanted in the playroom. She said her job would be to discuss with the child why he/she shouldn't get that toy. On behalf of ALL mental health professionals out there, I wanted to strangle this woman. She was judgmental, condescending, insensitive to her environment and who she was talking to, and totally out of line. She just kept complaining about her work, and the difficult things she sees on a daily basis. I frankly wanted to show her a picture of my life, so that she really had something of substance to complain about. Fortunately she left the room, because if she did not, I would have.

Mattie got to interact with our favorite Story Lady, Sally today. Sally was dressed as a beautiful snow queen. Though Mattie did not want to hear her stories, he did land up chatting with Sally and he showed Sally the kazoo he got from the music man who also visited today. Mattie loves the kazoo and played Beethoven's "Ode to Joy" on it. It was a riot. Sally and I were humming along. It was a sight. Then Mattie began to tell Sally and I about a song the music man taught him. I asked him what it was about. He said it was about spaghetti and a meatball. I knew immediately what song he was referring to. It brought back memories for me, since I sang "The Spaghetti Song" as a kid (you know, on top of spaghetti, all covered in cheese....). Mattie, Sally, and I had fun singing this song together. In fact, the music man came back into the playroom later in the day, to see Mattie because he told me how much fun he had with him. The music man played the Spaghetti Song on his guitar for us and Mattie was laughing!

Mattie had a good time with Jessie too and they designed a little aquarium with pebbles and even a goldfish which looks quite real. Mattie is proud of this creation. Mattie and I had a nice lunch, thanks to Danelle. She brought us some wonderful foods from the California Pizza Kitchen. Thank you so much Danelle! While we were eating, a mom from the PICU came to visit with me in the playroom. Some of you may recall this mom, I mentioned her daughter was quite sick and on life support a while back. Her daughter is doing a bit better now, but I helped connect her to her patient advocate since she was having trouble navigating the hospital system. This mom came into the playroom to chat while Mattie was playing with Meg. We were having a nice conversation, but the fact that I diverted my attention away from Mattie, bothered him tremendously. It was like a volcano erupted, all of a sudden, Mattie blew up. He cried, was kicking, looked anxious, and started screaming at the other mom. He told her she was giving him a headache and that she was taking me away from him. He then told her the playroom is for kids, not for adults to talk. I attempted to correct him, to try to reason with him, but then I stopped. I had lost him, he was too hysterical. I remember these days dealing with toddler tantrums, and basically you just have to stop talking, and help reset the child before you can accomplish anything. Despite all of that, I did not want the mom to leave the room. She had every right to be in the room, so I told Mattie if he couldn't pull it together, he was going to have to leave the room and go back to his room. This is what eventually happened. We spent the rest of the afternoon in his room, alone. Moments like this just further exhaust me!

Mattie received MTP-PE today at 2:30pm, and his premedication with Vistaril (an antihistamine) seemed to knock him out. He fell asleep pretty soon after the administration, but it is hard to tell whether the tantrum knocked him out or the Vistaril. Needless to say he slept several hours this afternoon, which isn't good news for tonight. He handled the MTP-PE administration well, and he tolerated the Methotrexate infusion this week beautifully. No nausea or other side effects that we could see and I learned at 5pm today that Mattie's methotrexate level was .11, and he was ready to go home (a day earlier than his normal cycle with Methotrexate). While Mattie was sleeping this afternoon, we had a visit from Ashley and her son, Sam. Mattie and Sam went to RCC together and many of you know Ashley from the prayer service she hosted for Mattie in the fall. Ashley was very supportive today and I could see aspects of what I report in the blog impact her greatly. The power of the written word is a force I have always appreciated, but even more so now. Thank you Ashley for bringing Sam to the hospital and I am sorry the playdate did not work out.

After Ashley left, I had a knock at my door. I forget completely that Liz, an artist who creates silhouettes of your child's profile was coming today. It wasn't the best time for her to visit. Mattie was sleeping, slumped over, and she couldn't really see his profile. The lighting in the room was dark, and I felt tired, and stressed out because I knew I needed to find the energy to pack up the room. Ideally it would have been nice to pack up the room while Mattie was sleeping. But I also knew that this woman doesn't come to the hospital often, and she made the trip especially to see Mattie. So I decided to let her in. At first I was simply annoyed by her presence, because I just wanted a minute not to do anything, but then I regrouped and started asking her about herself. I began to learn all about her life, and the fact is she is a nurse who works with a very challenging population in DC, but she does silhouetting on the side. She is also gifted with creating poetry. She wrote a poem for me about Hope in less than three minutes. Here it is:
Hope is soft yellow light,
Breaking on a safe shore
A dawn, drawing in emotion,
Shining encouragement,
Forming a bridge to believe....

It turns out Liz and I had a good time chatting and she will be back next week to visit me. She has also been asked to serve on a project that the hospital is doing, which is to survey patients and their families about what our hopes and dreams are for the hospital. In essence what things could use improvement. Well I was on a roll tonight, and gave her quite a list. I told her to come back next week, and I probably could fill up another sheet of paper! In any case, Liz did create a silhouette of Mattie, but I am not sure it actually looks like him. In her defense the room was dark and he was slumped over. It is my hope that she may be open to doing another one. I will have to talk with Linda about this.

After Liz left, Peter arrived and together we packed up the room. What an ordeal! Peter and I are thrilled to be out of the hospital tonight, and to be able to lock our door! We are experimenting this weekend. We are not giving Mattie IV hydration. We want to see how his electrolytes are affected by this decision (this decision was made in consultation with the doctors). If we can avoid IV hydration at night, I am all for it, since the periodic nightly bathroom calls are wearing. We shall see how that goes.

We want to thank the Goff Glennon family tonight for a wonderful dinner. I loved the eggplant, one of my favorite vegetables, and Mattie loved the pasta. The chocolate cake is keeping me awake long enough to write this blog. Since I literally fell asleep twice while writing tonight. As I sign off for the evening, Peter and Mattie are building Legos downstairs, and soon I have to break it to Mattie that we must wind down for the night. As Friday rolls around, I need to figure out how I will occupy Mattie all day. There are some days, I wish I could bring Linda, Jenny, and Jessie home with me for the sheer pleasure of having stimulating diversions for Mattie!