Monday, December 8, 2008

Monday, December 8, 2008



Quote of the day (Thanks Charlie!): Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish. ~ John Quincy Adams



Sunday night, Mattie had a good night of sleep, and so did we. Melba, was Mattie's nurse on sunday night. Melba also took care of Mattie's four nights last week. Melba lived through the horrible night where Mattie was up for 2am until 5:30am screaming hysterically. Last night, Melba came over to me to let me know that she has since been praying for Mattie. She was very concerned by his behavior this week. Melba is another example of the incredible nurses that supported us this week. I even had a nurse, Erin, give me a neck massage. What can you say about these fine women, other than thank you for all you do for us!


This morning, I knew we were going to get discharged from the hospital, and I started mobilizing forces. I asked Peter to leave his car at the hospital because with Mattie's wheelchair, I can't fit all the things we have at the hospital in my car. Peter took a taxi to work, and thank goodness he did. Fortunately, my parents drove my car to the hospital and helped me pack up the room. Which for me is a two hour ordeal. Linda also helped us and worked with Mattie on designing his Christmas house that he is building out of a cardboard box. This box is slowly getting transformed into something wonderful. Just an aside, but don't you find it funny how a child loves a cardboard box? To a child a box appears to be the world's best form of entertainment. Mainly because it can be used in any way that the imagination sees fit.


My parents and I did several runs to the cars with stuff from Mattie's hospital room, and then I went up to retrieve Mattie. In the midst of this, my car's battery died, and my mom came running up to the fifth floor to find me. Thankfully Linda called security and my dad found a helpful bystander who was willing to jump start our car. Thank you Linda for helping these folks find the battery in my car. Apparently it is concealed and all the people standing around my car couldn't find it. Linda put them to shame.


When we got home, it was another ordeal of unpacking things and trying to reorganize our lives. Not an easy task. Each time I have to do this, it becomes a little more stressful, and my patience level is slowly disappearing. When I enter our home now, it seems so cluttered. There is no organization and the lack of organization makes me very uneasy. So much so that I landed up screaming all over the house today, and my parents and Mattie just were looking at me. Of course Mattie landed up crying because he doesn't like to hear screaming. Naturally Mattie's crying reset me, and I just said internally to myself, "what ever, so our home is cluttered, there is nothing I can do about it now." That is not the priority.


As I was packing up Mattie's room today, trying to listen to discharge instructions for Mattie's care, and feeling the stress of taking Mattie home, I started to build up a certain amount of anger inside. If one more person told me how wonderful it was that I was going home, I thought I would seriously hit them. Going home is no blessing. It has its complications. First of which is Peter and I are completely on and responsible. Not that I take many breaks in the hospital, but I have a huge support system there. In addition, this week, not only do I have to heparinize Mattie's central lines (which I am used to), but I have to administer GCSF (a white blood cell growth factor) each day through Mattie's central line. I haven't done this in ages. Fortunately I kept the instructions from when the nurse trained me months ago. Then of course I have all of Mattie's medications to manage. No problem! Piece of cake. Sometimes I wonder whether the medical community is! Are they out to lunch?! I do think they are probably well intentioned, but I think many of them haven't walked in my shoes and simply don't have a clue. Because if they had, they wouldn't be wishing me a good time at home. My recommendation is they be forced to spend a week in a PICU under the conditions we live and either have to go through the treatments themselves or observe a loved one receiving them. I think that would be a humbling experience. If they think they were tired from med school and rotations, forget about it. That was nothing compared to the level of fatigue, stress, helplessness, and so forth that we live each and every day. I could go on, but I don't think this ranting and raving is accomplishing much, other than being cathartic. The insensitivity around me sometimes makes me want to scream. Most of the time, I can rationalize what is going on around me, but I can tell you today was the day I thought I was going to snap at someone. When the car's battery died, that almost sent me over the edge, and when the hospital security person came up to me and told me I couldn't park the car by the ER, I literally almost took his head off. What does he think I am doing by the ER? Just hanging out?! Like I have nothing better to do.

Mattie came home and was happy to be here. I got creative today and brought his chairs and table from his bedroom downstairs to our livingroom. He literally got himself up from his wheelchair and spent time today sitting in a chair and doing puzzles with my mom. He watched the movie Cars with my parents and I as well. So his spirits were good, and his mood was SO much better than I have seen in weeks. The power of medication. As I sit and type the blog tonight, Mattie literally got off of his chair and is now sitting on the floor. I am not sure how he managed to bend down to the floor, but there he is playing with his trains. He is using both hands now, and is slowly working on his flexibility. I am encouraging him to walk and take some steps. I think he is feeling more confident in his abilities, and it is my hope we can work on movement this week before he turns neutropenic and we have to head back to the hospital.

We want to thank Kathie for a lovely dinner tonight. We loved the spinach pizza! We also want to thank who ever delivered us dinner last night from the Cheesecake Factory. We weren't expecting that, and I am not sure who ordered it for us, but the pizza was a big hit with Mattie. We want to thank Bob Weiman (SSSAS head of the lower school) for the wonderful magic trick he sent in the mail to Mattie. Bob, you will have to teach this one to us, because I have no idea what to do with it. I am magically challenged. Also a special thank you to Debbie Pollak. Debbie is Mattie's art teacher at SSSAS. Debbie created an amazing book with lovely letters and art work from the first graders to Mattie. The cover of the book is stunning. It has Mr. Sun on the front with all the childrens' names written on the rays of the sun. The first graders wrote such beautiful things to Mattie, such as they wish they could paint like Mattie, or they want to be his friend and play with him, or they want him back to school as soon as possible. It is amazing to see how in just a few short months, these kindergartens have now become first graders and are writing in full sentences. Amazing.

This evening, Ann called me and let me know how lovely the prayer service was for Mattie. I was so touched to hear how many people attended the event, and the spirit and energy that was generated. We thank SSSAS and RCC for their support and attendance. We have only been a SSSAS family for one year, and yet it is very reassuring that SSSAS leadership is so supportive of us. Thank you Joan Holden, Bob Weiman, Susan DeLaurentis, and Leslie Williams! Peter and I especially thank Ashley Goff-Glennon and Kathy Brown from RCC for organizing and creating this empowering evening for all of Team Mattie. For all those who attended the service, a big heartfelt thanks!

Mattie ended his evening with a visit from JJ (our resident Jack Russell Terrier). JJ's owner, JP brought Mattie a gift back from his trip to Spain. Mattie loves his Matador piggy bank and it was funny to watch JJ chase around after Mattie's remote control car. As I sign off for the evening, I am hoping that we all get some rest, that Mattie continues to grow stronger and happier at home, and that for a moment in time we can forget about hospital sounds, scans, and we can leave our fishbowl existence behind for just a few days.