Wednesday, September 17, 2008

Wednesday, September 17, 2008

The emesis for Mattie started at 9:15am today. However, the intensity picked up at around noon, and then from noon until 2pm, he was vomiting every 15 minutes. This may not sound like a lot, but seeing a six year old vomiting for two hours straight was hard to handle. In the midst of the vomiting, he was also getting very upset, agitated, and angry. Even under the best of circumstances as a parent it is hard to remain composed when your children take their anger out on you. As a parent, I am very aware that Mattie is very ill. But how do you channel his anger, and how as a parent are you expected to handle all of this on a continual basis? These bouts of difficulty and anger were a frequent occurrence today. But another culprit in these mood swings is ativan. It is an anti-emetic, but for Mattie it also seems to hype him up and get him agitated. At times today I wanted to scream, but then I catch my breath and realize it isn't fair to scream at someone who isn't always in control over his actions and behaviors.

This afternoon at 2pm, we tried a new anti-emetic with Mattie. I thank those of you who told me about Kytril. Kytril seems to work very well along with Ativan. But the verdict is still out as to whether Kytril really made the difference. I will know better tonight and into tomorrow. However, after Erin (Mattie's wonderful nurse) administered the Kytril, my mom, Lorraine, and I took Mattie for a walk in the hallway. That turned out to be a major fiasco. Mattie tried to walk but was unable to (ativan made him very unsteady on his feet), so we then moved him to a wheelchair. Mattie got super frustrated because he couldn't push the chair himself. He did not have the strength, or basically I think he couldn't be in control of yet another aspect of his life and got frustrated. So literally Mattie had several meltdowns in the hallway and refused to move at all. We tried reasoning with him and so forth. It wasn't a pretty picture. It was like dealing with a two year old tantrum! Finally I reasoned with him and got him to sit in the wheelchair with me and we moved through the hallway together. Needless to say, I was worn out from this drop down drag out! Later on in the evening, I had a senior nurse approach me. Her name is Carol. Carol came up to me and my friend Lorraine. Carol acknowledged that we did not know each other, but she told me that she observed me working with Mattie in the hallway when he was having a tantrum. She said in her 35 years of nursing, she has never seen a parent handle such a difficult situation so well. I must admit I was stunned. Because I did not think I handled it too well, I just feel tired and frankly not using my best skills possible. Actually the heck with the skills, all skills go out the window in times like these. In any case, Carol's kind words meant a lot to me today. It is amazing how a loved one can give us the same feedback, but when you hear it from a stranger, you pay more attention to it. Why is that?! Thank you Lorraine for visiting. For your company and support. We love the bagels and the craft activities for Mattie.

I had a nice visit today from Alison as well. Alison brought me lunch and a lovely comfy outfit to wear. She also gave Mattie a special light up ghost. I personally love "ghosty." He is adorable. We will use him tonight. I always appreciate Alison's sensitive and introspective manner. It is very special when you meet and make a new friend, and you and this person just click. Actually Mattie has brought me the gift of many wonderful friendships! Alison got me out of the hospital today and we sat on a bench by the rose garden at the hospital. It was wonderful to actually be a part of the world for an hour and take in fresh air.

I received an e-mail today from a close friend of mine, Karen, who lives in NYC. Karen and I have known each other since 6th grade. We have always been close and she writes to me each day! Today something she wrote in an e-mail to me caught my attention. She said, "I know you are dealing with one of the worst things you could be dealing with in life. The amazing thing is that you are also dealing with the best life can offer you. Stay with me here... You get to see the good in many people." Karen is absolutely right, this is frankly the only positive part of Mattie's illness. I am seeing people in a whole new light, and I am seeing how generous, kind, compassionate, and selfless all of you are. I am not sure why this surprises me, maybe because as a mental health provider most of the time people are coming to see me because of failed relationships and disappointments experienced in life. Even though Karen lives in NYC, she has forwarded the carwash fundraiser flyer to all her friends in the DC area. I thank the Kahn family for responding and getting the word out at local schools. People who I do not even know are coming together to help Mattie, it leaves me speechless.

Mattie also received a special e-mail today from Coach Dave (SSSAS head football coach). Dave wrote, "I am truly blessed that I have gotten to know you. You keep fighting today to get rid of those bone bugs and I will keep thinking about you and how amazing you are. I have been a teacher for 18 years and you always seem to teach me something new every day. Thank you for doing that. You can add that to the growing number of talents that you have (of course my favorite is your ability to make me smile)." I hate to admit this, I have never been a football fan, but after meeting Dave and reading his e-mails, I am thoroughly a Saints football fan. I am just so impressed with the depth of this football coach. He understands Mattie's situation on so many levels and can relate to Peter and I as a concerned parent.

On the electronic front, thank you Kim, Emily, Susan, Charlie (love the sand castles) and Margaret for the wonderful e-cards and Eva and Barbsie for the nice e-mails. Before I end for the evening, thank you Rana for the wonderful dinner. We so appreciate you thinking of us each wednesday! Also, special thanks to Jenny (one of Mattie's art therapists) for coming up tonight and giving Mattie a train set. This brought a smile to his face today that I hadn't seen the entire day. What can I say, I love to see him smile!