Thursday, January 15, 2009

Thursday, January 15, 2009


Charlie wrote, "I think this quote talks about the difference between Georgetown and Sloan Kettering. It is as if the staff of Sloan Kettering is not conscious of the impact that their attitudes can have on a patient or a caretaker and thus the outcome of the situation. I am not sure how that happened; maybe they all skipped the course/seminar on relating to patients or none of the employment questions at Kettering focus on patient treatment other than the technical aspects. In that case, you get what you interview and select for."

Quote of the day: "Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." ~ Leo Buscaglia

Mattie went back to Sloan Kettering today for his second infusion of MTP-PE. We decided to take a taxi to the hospital this morning, but guess what? There was a garbage truck blocking the street that the hotel was on, and taxis were not able to get through the block. We waited for 10 minutes, hoping that the truck would move on, but no such luck. The hotel was kind enough to have their private car take us to the hospital. When we got to the hospital, we checked in and Dr. Meyers' nurse practitioner, Joana, took us back to her office to examine Mattie and talk with us. We told her that Mattie had a reaction to MTP-PE on monday about 45 minutes after treatment. Mattie experienced chills, a slight fever, a massive headache, and was sick to his stomach. Joana asked if we tried tylenol, and I explained to her that Mattie was not compliant with taking oral medications especially when he is nauseous. I always find it particularly fascinating when doctors tell you to give your child tylenol, but forget an important question. Will your child take the medication? Children's tylenol has a terrible taste and smell, and Mattie won't take it most times it is given to him. Joana got it right away today while I was talking with her, and she decided to give Mattie Demerol through his central line right after the infusion of MTP-PE. Demerol is a narcotic pain reliever, but apparently it is also effective at combating the side effects of MTP-PE.

We were assigned a different infusion nurse today. We were expecting Michaela, but she wasn't at the hospital today. Thursdays at Sloan are much slower, than mondays. Monday is complete chaos. Despite it being more civilized today, there still wasn't room for Mattie, and he wasn't given an infusion bay (a cubicle sized room, with a curtain). Instead, he had to get connected to the MTP-PE IV right in the middle of the hallway outside the childlife room, and then we remained in the childlife room for hours while he was getting the infusion as well as during the post-infusion phase. The childlife room is an interesting experience. Certainly the room is spacious, they have interesting things within the room, but that is where it ends. Peter and I observed the childlife staff for several hours, and we both came to the same conclusion, the staff members are just disengaged with the kids. The childlife staff doesn't know how to stimulate the children, or play with them for that matter. Instead, many of them land up talking with each other, or doing crafts together without the kids. I was sitting at one of the craft tables today working with Mattie on decorating a cardboard box and there were three childlife staff members sitting at the table with us. They were creating crafts that they were going to distribute to the kids in the infusion bays. They rationalized it by saying what they made for the kids would be appreciated and the kids would feel that someone thought about them. Perhaps! That certainly is one way to think about it! But if I were a child stuck in the hospital, I would prefer one of these childlife people coming around to visit me and trying to engage me in an activity, and being offered the opportunity to make the craft myself. After all, don't we want to stimulate children to do what children do, which is play and through play learn about their world?! Well I was just astonished at how their chat session was being rationalized. We were at Sloan today from 10:30am until 3pm, so we had a lot of time to observe what was going on in that room.

Mattie handled the infusion very well. While Mattie was receiving MTP-PE, we were all getting hungry, so we sent Peter down to the cafeteria to get us lunch. Mattie is going through a hotdog phase, and therefore wanted a hotdog. In the mean time while Peter will working on gettng lunch, Mattie and I were playing with dinosaurs and then we moved onto doing a shark puzzle. While we were working on the puzzle, Peter called me and said the cafeteria did not have hotdogs, pizza, grilled cheese, or basically anything Mattie would eat now. Peter, without a coat (because the cafeteria is 9 floors below where we were and he did not want to come up just to go back down again) left the hospital to find a vendor who sold hotdogs. That technically should be easy in NYC. But Peter went to three different vendors before he was successful. By the time he came back up to the childlife room, Peter looked like a block of ice (it was FRIGID outside!). Talk about going above and beyond the call of duty for a hotdog. He is better than me! Mattie was thrilled to get the hotdog and devoured it in minutes! In addition to cheese and yogurt that I brought him. Apparently Mattie gained a couple of ounces while in NY!

At around 3pm, we left the hospital and were going to taxi back to the hotel. But when we got outside, it had stopped snowing, and the sidewalks were fine. So I suggested we walk back to the hotel. The idea of transferring Mattie out of the wheelchair, folding and lifting the wheelchair into a taxi and then repeating the reverse process once we got to the hotel was not appealing. Not having physical mobility in NYC has worn us down this week. So I convinced Peter and Mattie to walk/stroll back. Mind you it was freezing today, but I figured we are couped up all the time, and since Mattie did not want to go out today after our hospital visit, I thought we needed a change of pace. Well walking six blocks in freezing weather was a shock to our systems.

We had a slow afternoon. Mattie and Peter continued building the empire state building with the erector set, and I went to lie down for two hours. That sounds luxurious, but I have to tell you I am so exhausted, that two hours to me seems like five minutes. Goli and John called us tonight and invited us to their home again for dinner, but Mattie was not in the mood to leave the hotel. So instead we had dinner in the room, and Karen joined us. We had a wonderful dinner from an old world Italian restaurant. Peter said he got a kick out of the experience when picking up the food from the restaurant. But this is one of the things I miss about New York, good Italian food, and canolis! We had a nice dinner altogether and Peter had music from his computer playing in the background. Peter found this wonderful on line radio site called Pandora that plays music for free. Karen and I started talking about music, and somehow we all landed up listening to music from the early 80s. I guess I am still stuck in the 80s, because I prefer that music. Mattie even got a kick out of listening to the music while he was building a Mars Mission Lego.

It was a fun and relaxing evening, and we will miss Karen, Goli, and John, but we know they we will stay connected virtually. Karen and I have known each other a long time, so much so that it is easy for us to pick up our friendship from where we left off. Mattie was in a bit of a grumpy mood this evening, but is now sleeping and hopefully packing up and driving back to DC tomorrow will go smoothly.

As I sign off tonight, Peter and I are joining Tyler and all the other high schoolers in spirit as they host a fundraising music event for Mattie in Old Town, Alexandria. Peter has been text messaging Tyler this evening and Tyler gave Peter an update on how things were going. For those of you who went to this fundraising event or helped promote it, we extend our appreciation and thanks! Much thanks Tyler and the seniors at SSSAS for spearheading this!

Good night from NY!