Day 148 October 30 2009

Friday-Cody had a good night and a good morning other than being poked. He nibbled in food and I will continue to 'force' that in a some small way. Someone from peds (we were not on the peds floor) brought him a huge bag of Halloween candy. That made him feel a little better and he ate a few pieces. The drs came in around 2 and asked if I was sitting down. I started to sweat. But then he says he is kicking us out of here. You can't do that to me and have me panicking even if for 2 seconds. Then we discuss and find out that we are going home without any kind of IV in and that he is on his own for eating! YES, a little happy and a little nervous. He told Cody he was counting on him. I hope he can do this. I have to push the issue and I will but it is hard. I said a few bites of something every hour to get his stomach back in shape. When he does nibble, he does not vomit. At the hospital on Thursday, he ate 3/4 of an ice cream bar and that came up. I know it probably tasted so good and was nice and cold but it was too much. The little bites definitely work. So we will get that into place. We got home around 6:30 and Bobby his drum teacher came and showed us his very ugly costume. It was great!!

So we are glad to be home and tomorrow is Halloween!!

day 147 October 29 2009

Thursday-we are tired after that late night but we have a pretty good day. The culture from yesterday was negative. Hopefully tomorrow's will be too. The IV that was put in yesterday was not in a good place and caused some pain and swelling and had to be pulled. His veins are so small and are weakened. He had to be poked again and it is so painful. He is a trooper for sure but so hard. We are trying to decide what the plan is. It looks like he will need another temp in so he can get his nutrition while we get him back into eating. I am scared of them because of this infection in his blood but hopefully we can get by without it. We will decide on the plan tomorrow. He did eat an ice cream today but too much and he vomited it. Have to go slow.

Day 146 October 28 2009

Wednesday-Today started out a little stressful but ended with the best night we have had in almost a year. We had another positive blood culture so that line had to be pulled today. An IV in his arm was started after several trys and with Cody handling it the best he could. In the morning, I went to scout out the drs. We had the Islander/Ranger Puck Drop for scheduled for the night and I had to know if we were going. I waited to get them when they came out of report and got the news that we could go to the game!! It was an emotional time and then trying and hoping and praying that the infection was from the line and not from something growing somewhere else in his body. We got an IV in, got his antibiotics and we were on the road at around 3:15. It was yucky weather and even at that time, we hit lots of traffic. We went to McDonald's and he got the OK to have chicken nuggets which he has been wanting. He had a few bites and it stayed down, thank goodness. We got to the coliseum and I called our connection. She met us downstairs and the fun began. Cody was presented with his own Islanders jersey and his favorite number on it. So cool. He immediately put it on. There were camera guys and a photographer there with us too. We met the contact person from the Feldman's, Jeff Picker. We were escorted to the area where the players come out of the locker room and go on the ice. Cody got to stand there and do the high 5's to them. It is amazing how focused they are before the game. It was definitely amazing. I snuck in a few too! Then we went to the ice and watched them practice. We followed them back to the area to wait for game time. We could hear them roaring in the locker room. So cool!! Then they came out for game time. Cody was briefed by the MC guy about walking as even with the carpet, he could slip. I was so nervous. So after the national anthem was played, he started his trek onto the ice. He walked along the side and past the players and they all high 5'ed again. He made the walk to ceneter ice. I could not hold it together any longer. The flood gates opened as I was snapping the photos. Cody was great!! He stood still and waited for the two players to come meet him. They made this huge announcement about him, about how he was released for today to do this and how he is fighting this cancer. He was given the command. He dropped the puck, shook hands with the players and one was his favorite player, Richard Park. He then made his walk back to the player bench, high 5'ed again and safely, returned to his mama...PHEW! We went to do an interview and we hear the scoring. The Islanders scored in the first minute of the game.

We get to our seats and are ready to enjoy the game. Intense game, Islanders win, fights break out, crazy fans! We wait for Ann, our connection and are escorted down to the locker room area again. We stand waiting for the players to come out from their showers and whatnot. Well, they come out and they come right to Cody, calling his name! He chats with them casually and even conversed with the coach. DiPietro was there, the famous goalie that is out on injury. We met a few of the wives/girlfriends too. He got a nice hug and conversation with Richard Park and lots of photos. He got them all to sign his new jersey and then Tavares comes out with a signed stick for him. I think we all became speechless at one point. Cody was on cloud 9 and had one of the best nights he has had in a very long time. He was very tired and barely made it up the stairs and to the car. I got him back to Sloan in 30 minutes. I wish someone would have taken a picture of us. Here we are in Ranger territory, he is decked out in Islanders gear, stick and bag of goodies in hand, in a wheelchair with me pushing him at 11:30 in MSKCC. He made it into bed and took a huge breath before going to sleep. It was amazing, as we keep saying. Thanks to all that made this happen!

day 145 October 27 2009

Tuesday-Not a good day. The new temp line tested positive. I sent out a thorough update so I am going to include that here now:

Hi everyone,

Hope everyone is enjoying the beginning of the fall season. Unfortunately, we are not. Cody was admitted last Monday with a fever. It was a line infection in his temporary line. Let me explain what that is. He has a temporary IV line inserted in his chest with a tube running to a central artery near his heart. It has 3 lumens or lines hanging from it. This is where he gets all of his IV's here at the hospital and I do it at home. He does not have to be poked every time to do blood cultures and to do meds. He is due on Nov. 9th for a more permanent one that is more secure. So when he gets a fever, the first thing they do is take blood from all three lumens or lines to see if they are infected with bacteria. Sometimes, depending on the bacteria, they can treat with through the line with antibiotics or sometimes they have to pull the line to clear up the infection if the cultures are positive. (Did I lose you yet?) We got here late last Monday and tried to treat the infection. It presented itself as one that could be treated and the line left in. But on Saturday he got a positive culture back so the line had to be pulled. He then was given an IV in his arm for his meds. Not fun. On Monday, yesterday, he got the new line placed. The doctors heard some wheezing in his chest and are treating that but wanted to give him 24 hours before he could be released. So today, Tuesday we were discharging when the doctor came in to tell us that one of the new lines tested positive. He is being treated with several antibiotics and we could go home but we would have to be under careful watch. They do not usually send patients home with positive cultures. There are a few problems, one being that the infection could be around his heart because of the line placement, but an echocardiogram confirmed that to be negative at this time. The other problem is that we have to find out where the infection is if it is not the line. So they poked him again so they could check blood not using the lines to see if it is in his blood which means we will have to find out where the infection is. Complicated I know and scary. So while we were discussing leaving and with me doing antibiotics at home which is now problem, I get upset. That made the doctor keep us here. I was nervous to take him home with a positive culture. But I am the bad person now, according to Cody. It is ok, he needs to take his anger out on someone.

The good thing is that we are asked by the NY Islanders, (thanks from a little help from our friends, the Feldman's -thanks Sabrina!!!) to do the ceremonial puck for tomorrow's Islanders vs Rangers game. We have been talking about this since Friday. This is Islanders Fight Cancer month and they are 'hosting' us at tomorrow's game. We are going either way, we will get a pass to leave here if we are inpatient or we are being discharged tomorrow morning. We are VERY excited. That part will not be on TV but we will have lots of photos.

So back to the medical part. Let's hope for a negative culture. If not, we will have to find the cause of the infection which will involve lots of tests and the line will have to be pulled and we will be here for awhile. Thank goodness, there is no fever. I will keep you posted on that issue.

I did get a call from Casey yesterday. It was delayed and a bad connection but he sounds good and it was great to hear his voice. Unfortunately Cody did not get to talk to him. He called when I was home to take care of a leaky fishtank.

So with that, I will say goodnight. Thanks for listening and keeping in touch with us. Thanks again to SH for all that they did Friday night. We love you all.

Mary

day 144 October 26 2009

Monday-Well, we are still at Sloan. We got the new line in first thing this morning. This doctor is very thorough and wants to wait until tomorrow to see that the culture is still negative. The line is placed close to your heart so they have to make sure no bacteria grew there. He had an echocardiogram today too. The dr heard some crackling in his lungs, I actually heard it too, so we are treating that. He got a few nebulizer treatments today. With all that, we should be discharged tomorrow.

I had to run home today to clear out a leaking fishtank. What a mess. Cody's friend Tom came and helped me. The fish are in a crowded tank in the living room for the time being. What a pain. I am wondering if they will make it through the night. While I was home, I did get a call from Casey. It was a bad connection so it was hard to talk. But it was good to hear his voice. It was when I was home so Cody was not able to talk to him this time.

So sweet dreams and extra karma this way so we can be well enough to go home tomorrow.

day 143 October 25 2009

Sunday-A quiet Sunday here at MSKCC. Nothing new here. It appears like we are scheduled for tomorrow for the new temp line but we are an add on so who knows? It would be nice if it is for tomorrow and then we can go home and relax a day or two before the big night. We are outta here Monday or Tuesday. Our big night is the Islander/Ranger game on Wednesday. Cody has made another friend on this floor. We are not on the peds floor but the nurses are just as nice and compassionate. We just click with some. He did eat a little today and took two showers. Without the temp line, he can do that. He has developed a heavy cough so he was put on a different antibiotic in addition to the others. He feels good and we just get bonding and getting closer and closer. Lots of quality time to say the least.

I found out that my school did a "Fall Fair" on Friday. My friends there, the staff and teachers did a bake sale and a few other things and raised a nice donation for us. It brings tears to my eyes. They are truly special people there and I am so lucky. THANKS SH!!!

Day 142 October 24 2009

Saturday-Well, we learned this morning that one of the lines grew the bacteria again so not leaving. The plan is to pull the line, put a new temp one in on Monday or Tuesday. They know about the Islanders game for Wednesday night so we will go to that. The line came out and an IV put in his arm, which he is not happy about it. He got to take a long shower tonight. He ate a few bites of food so we are working on it. While the IV is in his arm, he cannot get his IV nutrition so it is important that he try harder to eat. He does get some extras in his fluids but needs to catch up. The nausea is under control so that is good. I actually feel better that the infected line is out. Better chance of getting to the game. We are still scheduled for around Nov. 9 for his more temporary line. Not sure if we are doing the feeding tube at that time just yet. We will see how it goes.