Monday, June 22, 2009

Monday, June 22, 2009

Quote of the day: "The world talks to the mind. Parents speak more intimately -- they talk to the heart." ~ Hain Ginott

Mattie had a hard time shutting off last night. In fact, I gave out before him at 1:30am. Poor Peter he landed up tucking me into the hospital chair and then he stayed up with Mattie past 2am. I just couldn't function any longer last night, and knowing that I have several long days and evenings this week, I figured I better just stop and rest. As it is today, I feel so wiped out, tired, and drained. Just when I think it isn't possible to reach an all time low, I am introduced to it. I had to walk today from Mattie's hospital room to the clinic, and I literally almost did not make it. I felt like I was walking in quick sand, with no means of escape.

Peter attempted to go to work today, but he looked and acted as good as I felt. I really feel for Peter because he balances so much between Mattie's care and work. Logically, since Mattie went to bed so late, he got up around 11:45am. Mattie's oxygen supply, through the cannulas, was shut off this morning, and he is doing quite well breathing on his own. The breathing exercises seem to be really working. Before Mattie woke up, I finished a round of laundry, which I wanted out of the way, so I wouldn't be distracted by it when he woke up for the day.

My good friend, Lorraine (who I met at the George Washington University, when we were both students there), came to visit us at noon. Lorraine brought all sorts of wonderful treats for Mattie, including Golden Oreo Cakesters. This was the popular item for the day. She also brought Mattie a yogurt shake and cantaloupe. All of which were devoured later in the day! I wasn't sure how Mattie was going to greet Lorraine, based on his last seven day greeting of friends in his life. However, Mattie handled the visit very well. Lorraine gave Mattie a Sponge Bob DVD, which he is watching this afternoon after a long day in clinic. Thanks Lorraine! Mattie, Lorraine, and I played a matching board game, and soon there after Dr. Gonzalez came in to exam Mattie. Dr. Gonzalez spent quite a bit of time with us. She gets Mattie's style, which is you have to get to know him first and play with him before you are invited within the inner circle. Mattie showed Dr. Gonzalez the fantastic bug set he received from Joan Holden (Mattie's head of school) yesterday. This bug set is a hit. Lorraine, the nurses, and Dr. Gonzalez were fascinated by it and they really chatted it up. While Lorraine and Dr. Gonzalez were visiting, one of Mattie's respiratory therapists came by to work with Mattie. Everyone got to watch Mattie perform. He seemed to love the attention today. Mattie began with Brenna's Sponge Bob lake exercise. This has been a wonderful and ingenious exercise that Mattie enjoys doing every day. Today I could clearly see that Mattie is getting stronger based on his strength in blowing through a straw and through a harmonica. Then what caught us ALL off guard, is Mattie decided to share his cookies with Dr. Gonzalez, Katie (Mattie's wonderful nurse), and the respiratory therapist. I was down right shocked, and the ladies were clearly moved by his gesture! I wish I caught Mattie's smile on camera as he was sharing these edible gifts. It was priceless.

At around 1:30pm, Mattie was unhooked from his IVs, and wasn't on oxygen. So transferring him to his wheelchair was easy. Mattie spent over three hours in the Lombardi Clinic today, where he played with Jenny, Jessie, and Lorraine. Mattie worked on two different projects. The first one was a mosaic of who else? That's right, Sponge Bob! The other project he worked on was transforming a cardboard box into an animal shelter. Mattie, with the help of Jessie and Jenny created Model Magic animals for the shelter, and then we all played a game with the animals. The gist of the game was I bought two birds from the shelter, but at home I already had two cats. So the play scene centered around how to protect the birds from the cats, and even Scooby Doo was incorporated within our play. Scooby was supposed to be protecting the cats, and was doing a good job, until he became hungry and needed a Scooby snack (for those of you who are familiar with Scooby Doo, you know that Scooby is ALWAYS hungry, therefore these birds were unprotected more than they were protected).

While we were playing, Anna (Mattie's physical therapist) also stopped by. I spoke to Anna about next steps for Mattie. I feel that Mattie needs intensive physical therapy once he regains his strength and once the next round of chemo is complete. Since Mattie isn't going to school in the Fall, my goal (God willing nothing else shows up), is to focus on walking. I am looking into the National Rehabilitation Hospital as a possible option for inpatient physical therapy. I just worry that unless Mattie is bombarded with therapy and he can see other kids going through the process, we may not get very far in terms of his improvement. None the less, Mattie met his physical therapy goals for this week. Which was to be transferred, to stand on his feet, and to go in his wheelchair and get out of his room! I am also happy to report that Mattie is wearing pajamas today, so he is out of a hospital gown!

Left: Mattie holding up his model magic mosaic of Sponge Bob! From this angle, it almost looks like Sponge Bob himself is in the wheelchair!

Right: Mattie working on the mosaic, by pushing clay into the tiny framed out parts.

Left: The animal shelter Mattie made out of a cardboard box.

Right: Mattie had Jenny make a pulley system, so that the pets could ride an elevator up and down to their appropriate condo spaces.

While Mattie was working in clinic on his projects, I went outside into the fresh air for 30 minutes to have the lovely lunch that Lorraine brought me. It was so nice to sit in peace, and to get out of air conditioning (something else that I am NOT fond of!). As the week is wearing on though, I am finding the 11 months of stress and strain are taking its toll out of me. This feeling has happened a couple of other times before, and it usually passes thankfully. But today walking was painful. At one point I wasn't sure I had the energy to physically walk back to the clinic to get Mattie. That must sound very strange or funny, but Peter and I have both reached this level of physical exhaustion. The scary part is that this exhaustion can't be cured by one or two nights of sleep. We are way beyond this point, and what concerns me is in this depleted state either one of us could get sick, and then what happens to Mattie? So these are all things whirling around in my mind, and with a possible discharge day of Wednesday, the fact of the matter is going home adds more responsibilities to my day, more tasks which again who has the energy for?! There are days I wish for peace, quiet, and NO PLAYING. Of course then again admitting that makes me feel guilty too, because Mattie did not bring about this illness and he is the one who has had to directly live through these treatments. None the less, with each ounce I give to Mattie, that is an ounce that gets chipped away from myself, an ounce that I feel like I will never get back.

After clinic, Mattie came back to his room in a foul mood. He started to shut down and snapped at everyone. From Dr. Chahine to myself. In fact, there were two times that I refused to talk with Mattie until his attitude changed. Then he got angry at me for doing this and he returned the favor and did not want to talk with me, which of course only further frustrated me. So instead of talking to Mattie (which would have been a waste of time), I started talking to Mattie indirectly through the Sponge Bob doll on his bed. I conveyed my message through Sponge Bob, and slowly Mattie came around and we reconnected again. But by 7pm, Mattie wanted Peter at the hospital. When Peter arrived, he and Mattie decided to play with a toy that Linda gave Mattie called Meeba. This is an electronic toy, where you have to play games in order to get the prize locked up inside of it. I left Peter and Mattie for two hours tonight to jump on a professional conference call, and when I got back, they were still playing it! It has really captured their attention, or at least they are committed to see what the prize is!

Mattie had a great respiratory session tonight and even played Mary Had a Little Lamb on the recorder. I took a picture of Peter, Mattie, and Sarah Marshall (his wonderful HEM/ONC nurse) during this concert!

As we head into Tuesday, Mattie will be getting an MTP-PE infusion and most likely will be discharged from the hospital on Wednesday. Mattie is doing very well physically. He is NO longer on oxygen and his pain is under control.

We want to thank the Biers family for a wonderful dinner tonight and for your continued support!

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "In terms of today's quote, it reflects your relationship with Mattie; it is clear that sometimes your conversations and actions go right past his brain and directly to the heart. I was hoping to read that it was a really good day and that somehow things had sorted themselves out enough that the three of you were able to sit together and eat and talk and appreciate Father's Day. I can tell that did not happen. I am glad that you made it outside for a while yesterday, the sunshine certainly felt like a gift as I think most of us here in the area were beginning to feel as soggy as our lawns. I knew you would make progress teaching the technicians how to work with Mattie or any other child who is awake, aware and responsive but I can also tell that it costs you; it takes away from that rapidly shrinking store of energy, both physical and emotional, that you have stored to deal with the really critical issues. Reading the blog reminds me of reading about someone who is in a situation where they have to fight for survival; you shut down everything except the minimum needed to survive until the rescuers come. The question I have is, when will (and who will) rescue you and Peter from this situation and return it to a normal, dull family life. Somehow, even with Mattie released from the hospital and headed down the road to rehab, I think the exit road back to normal is pretty far away."