day 179 November 30, 2009

Monday-Well, we were discharged as promised. It took us all day as Cody needed his antibiotic and a dose of IVIG. He felt ok but did vomit as we were about to leave. He is still having diarrhea but no positive cultures for anything. He got his nose swabbed today and he was sniffling and his eyes were red. He was having trouble urinating this morning. He went several times, small amounts and it burned. Again, no positive cultures came back so far. We were discharged around 4 and it took us 2 hours to get home.

We found out today, the coach called me, that Cody was getting the "Coach's Award". We had planned on going but after the long day, Cody was just too tired. It is an honor to get this and we are sorry we will miss the speech but we it will be vidoetaped for us.

So we head back on Wednesday for surgical clearance and then we check in on Friday. He is getting a double lumen port. This is the access line that is under the skin. It will save him from having to be poked all the time. He had a single port way back in December. They are going to do a biopsy of his gut too just to rule out the rejection disease because of his diarrhea.

And then he is getting his feeding tube. We hope to leave on Saturday if all goes but I have a feeling we will be there till Monday.

So we are making the most of our days home this week. The plan is to get the tree up tomorrow. Our doggies are in their 'vacation' homes and they are going to stay for the week just to help them deal too. They seemed stressed last week.

So let's hope the plan does work this week and honestly, I can't wait for Friday.

day 178 November 29, 2009

Sunday-A relaxing day here in Room 928. Cody doing better, mentally and physically. He drank and ate a few more bites today. He is smiling and seems happy.

We are planning on going home tomorrow. We will return Tuesday or Wednesday for pre surgical testing and then the feeding tube on Friday. Can't wait to get home tomorrow, lots to do and I want to get the Christmas stuff going. Lots to do but it will get done.

We got a nice phone call from Casey today. He sounds good and is excited to get home. He and Nicole are going to be here on the 23rd and that is their one year wedding anniversary. They want to go to the city and have dinner in an Italian restaurant, any suggestions? We will be going to a hockey game on the 27th so that will be fun too. Cody is very excited to see them!!! I am too!!!

Hope everyone has a good night. oxoxoxox

day 177 November 28, 2009

Saturday-Today was a much better day, mentally. Cody could not get his anti depressant yesterday (the procedure) but was back on it today and what a difference. He actually smiled today. Guess he still needs that.

The pic line is working. He even ate a little today. Not really supposed to eat Chipolte but he took a few bites of it. He drank better and def seems hydrated. Still dealing with diarrhea but doing ok overall. We watched the Islanders not do too well but his player scored so he was happy.

Around 7:30 pm, his all time favorite nurse came in! I always said if he was old enough, she would be my daughter in law. He really likes her. I can project what his wife will be like. He took a shower and feels good for the most part.

day 176 November 27, 2009

Friday-well, today was an ok day but worrying about the pic line placement was making us nuts. They first tried to do it at the bedside. The technicians came and looked in both arms for a vein and did not have any luck. We were going to give him valium and then they would numb his arm. He was fighting me and saying he was not having it done. So we waited the rest of the day and went do to something called "conventional radiology. They do all kinds of procedures there.

We were told there would be mild sedation only to find out that there was not. We convinced them to give him something and they did. He went in and I had to wait outside. It was a pretty scary looking place. I really felt bad for him. About 30 minutes later, the dr came out and said he did well and that he slept through the whole thing. Well, it was a different story for Cody. He said he did not get sedated and he felt the whole thing. Not sure if he was out of it and wanted to make me feel bad or if he felt it. I don't think the dr would have said that. Bottom line, and a thank goodness one, is that the line is in and functioning and he is getting nutrition right now. He needs so much more which is why he is getting a feeding tube and it goes directly to his stomach. It will help stretch his stomach out gradually too. His favorite nurses are here and each comes by to give him a pep talk. Another one emailed me and she is coming in Sunday and she will be great at it too. This will all help him I am sure.

So we are supposed to go home Monday, then back here on Friday and we'll stay overnight and to make sure I know how to operate the tube. I think we will just enjoy our time home and put up our tree so that will put us in the Christmas spirit and make the house nice and festive.

It's the little things that go unnoticed or that are taken for granted that now are HUGE deals in our world. Stop and think about some of those little things each day. It makes ya feel good!

Day 175 November 26, 2009

Happy Thanksgiving.

We all have a lot to be thankful. We might get to be where we want to be but we should be thankful for what we have.

Cody and I got to Sloan this morning. We were thankful for the phone call we got from Casey this morning. Cody had several bouts of diarrhea through the night. I knew we would be here this morning. He was very weak in the morning and could barely walk and talk. I got him to the car with the help of my neighbor and we got here and started hydration.I feel like mentally he started to shut down on me. I was upset most of the ride in and he was so worried and kept asking if there was something I knew that he did not. Other than being scared and worried, this is what we moms are great at, I assured him I was not hiding anything. Several blood tests showed that he is dehydrated and we are waiting for stool cultures. I could tell by looking at him. He will be getting a picc line tomorrow so that we can start IV nutrition while we wait for the feeding tube surgery. The picc line is an IV line that goes deeper. He will have some sedation but not out totally. He is concerned for that as it is hard to just get a vein for blood.

The nurse we had today was great and explained a lot to Cody about the GI tube and how successful it is. I think we both feel better about it. I am scared and I know Cody is and hopefully he will be feeling better soon. He is finally sleeping and snoring so I know he is out and resting. I will try to the same shortly.

With that, I hope everyone enjoyed their family time and dinners. We will have a make up one when Casey and Nicole get home. We are thankful this year for all the love and support we have seen and received from our friends, families and even strangers. We would have never made it this far without all of you. Thank you. With much love, Mary.

day 174 November 25, 2009

Wednesday-Thanksgiving eve. Our night last night ended with Cody vomiting and having diarrhea. He was very weak and went to sleep early. Today he woke up around 11 and did not eat and was still weak. Barely drank. Went in for a 2 hour nap. All this time I was emailing and calling the drs. I got my point across and told them that if he is getting a GI feeding tube then we cannot wait a month for him to 'get on the schedule'. Still felt weak all afternoon and the mental part is not good. He feels like a failure for getting the GI tube. He keeps making sure I do not think he is a failure. After a stressful day, we are going in tonight or in the morning. I feel he needs maybe some hydration or something. I cannot go through another day like today. I cannot imagine going through a month of trying to make him eat. Hopefully he will be put on the schedule soon and we can start an uphill track. It has been a long year for sure.

I will keep you posted.

Day 173 November 24, 2009

Tuesday-Today started out good (got a call from Casey last night!) but did not end so well.

We got to the clinic nice and early. He got one poke for his IV and blood. He picked on a bagel here and there. We met with the nurse practitioner. I know Cody lost weight but was not too happy with the result there. Since Oct. 21 he lost 10 pounds. Part of that time he was in the hospital and not eating. Slowly he started back again. The NP said all was ok and ordered something we could add to food for calories. Seemed easy enough. We talked about food recipes, etc. Then Dr. K came and she said we have to do the feeding tube. She is not happy that he lost weight. I am not either but he is eating but not enough. We were made to feel like we were failing here. Very upsetting for both of us. Cody vomited 2x tonight as a result of being upset I think. He held my hand the whole way home. I know he is upset and scared. We left there and went to NYU for the psychological but we are both upset. Not sure about the tube just yet, see what happens by next visit, Tuesday.

Tonight we are in my bed and he is just relaxing and trying to sleep. Say an extra prayer tonight...oxoxoxox

day 172 November 23, 2009

Monday-Cody worked hard with his tutors today and enjoyed showing them his new drum. He got an 82 on a spanish test too. Not bad. He ate pretty well today and we hung out to watch the Islanders game. Good day.

day 171 November 22, 2009

Sunday- I think donating blood has made me very tired today and very cold. Have to look that up.

We went to Bobby's today. Cody loves to play on his drums and listen to his stereo and jam. He does that here and will have a better time here once he gets his new stereo that Santa brings. Bobby got him the headphones too so he is all set.

We went to get more groceries, he has these cravings and guess what-I eat them!

I was pretty pooped so we just hung out and he is in bed already at 7:30. Busy day but a good one. I hope everyone had a great weekend.

day 170 November 21, 2009

Saturday- Today it was a nice day outside. We were up pretty early, I went and donated blood and we went to the drum center with Cody's drum teacher, Bobby to meet the drummer from Dave Letterman's band, Anton Fig. It was cool and Cody was on a mission. From time to time, while at the clinic or hospital, there are musicians that come to the rooms to play different pieces. One guy came and he played this African drum. Well, Cody saw them there and used his own money to get one. He inquired about lessons and he said this is the way he can give back. He wants to come and play for the kids when he can. So he and I went back after the crowd and he purchased the drum. He was so proud of himself. It is pretty cool and sounds amazing.

We hung out the rest of the day and did some grocery shopping. It was a nice day.

Thanks to Craig for doing our leaves AGAIN! Love ya Craig!

day 169 November 20, 2009

Friday-Another pretty good day, well almost. The math tutor came today since he will not be here next week. Cody did well until he tried a piece of beef jerky that sent him to the toilet for vomiting. He was so embarrassed and felt terrible. The math tutor is fine, we have had him all year and he felt bad too. He was ok after that so we went to Michael's to get a frame to try to preserve his jersey from the Islanders. Well, that did not work so returning that in the morning. We watched the Islanders game and they ended up losing in the last few minutes which did not make us too happy.

Hope everyone has a nice weekend.

day 168 November 19, 2009

Thursday-Today was a yucky rainy day. Cody has been watching the birds that visit us so we decided to go get a birdfeeder. We are so excited but have not had any birds visit it yet. We are waiting.

We did a little more shopping at Target and then we came home to just chill. It was a pretty good day and we are getting into the Christmas spirit.

day 167 November 18, 2009

Wednesday_Cody had a busy day with his tutors but did well. He ate well but did not end up the day that well. I think he vomits when he lies down after he eats. Have to get to let his food digest before he goes to bed. He worked hard today and feels good!

day 166 November 17, 2009

Tuesday-we got up early today and went in for our appt at Sloan. It did not start off too well and they poked him 6x to try to get blood. They were able to get an IV but not blood return. So he got a finger stick and they really squeezed it out of him. Then when the antibiotic was finished, they got some blood. He is a trooper but I know sometimes it really hurts when they are fishing around in there. He has small veins and I think he needs a break. We were worried about the weight and it did not show on the scales. They are ok with it since he is eating. I know Cody was hoping he gained but he did not. He was bummed. But he is eating so let's hope it continues which I think it will. He tried shrimp tonight but that just did not do it for him. Still potatoes and now tonight also had some chicken-with tabasco of course!

day 165 November 16, 2009

Monday-Today was a busy one. Cody met with the English tutor in the morning and then the Spanish tutor in the afternoon. He did well too! He managed to eat 3 potatoes again.

We watched most of the hockey game-he went to bed before it finished. Thank goodness they won. It was a good day!

day 164 November 15, 2009

Sunday- What yucky weather we are having. Despite it, Cody felt pretty good. He wrote an essay and did some more homework. He is all ready for the week. I tried to do some leaf raking-ugh what a job with we leaves. I am waiting!

Cody ate pretty well today and I am doing my best with anti-medics. (Meds to help with vomiting). I feel like we have it under control, he ate a lot yesterday and kept it down. We are learning the limits. Last time he vomited was Thursday night so things are looking good. Let's keep it that way. Enjoy your Sunday.

day 163 November 14, 2009

Saturday-The best part of today was doing a video chat with Casey. We got to see him but did not get to hear his voice. We typed instead. It was so good to see him and of course, it left me in tears. I miss him.

Cody had a pretty good day. He is making small strides but things are going well. He is eating more frequently but small portions. He is adjusting to life and trying to figure out where he is headed. I am letting him do more things, like he went into Sam Ash to get drumsticks and I waited in the car. We were at the mall and I let him go off in a store and I waited for him. We have a close connection, very close. I know he is worried about me becoming involved with someone and leaving him or treating him like his dad does. He says that is not the case but I think it might be. We talk a lot so I have to make sure he understands that I am here, for always. He is a smart boy and I know he is concerned about a lot of things out of his control. The things he can control is what he kinda obsesses on. We have a long way to go in some areas.

We watched the Islanders tonight. He said he can't believe the hockey mom he has made me. I was a hockey mom a long time ago when Casey played. Some of the Islanders could be young enough to be my son.

It is a very gloomy, rainy, yucky day. Casey brought us a huge ray of sunshine today. We smiled a huge one for him. Love you Casey, please be safe.

day 162 November 13, 2009

Friday the 13th...oooohh...nothing bad here except the weather. Windy and rainy and yucky.

We had a great day. We hung out this morning, then went to meet some teachers at Spuntino's for a quick lunch. All good there and always great to see everyone!!! Then we came home to meet with a tutor for a quick session. We took a ride to Hicksville Mall to the Islanders store to see if they had any cool stuff. I am trying to get Christmas ideas too. Then home to eat and relax. We are still doing the eggs and potatoes but he has added chips and salsa and today he tried pizza. It is like learning all over again. He got another email from his Islander friend and he is thrilled! We are all set for our games on the 27th of this month and then again when Casey and Nicole are here. We have a special connection and we love it!!

Have a great night and stay cozy. I know we will.

Day 161 November 12, 2009

Thursday-Today started out really good. I called Sloan to check on the appt and also some meds and they said we do not have to come until Tuesday. We are on once a week visits and I hope it stays that way. Cody ate fairly well today and in fact, ate too much tonight and it came up. We re learning what triggers this and trying to deal. He comes with me to the grocery store and picks out all kinds of things but then just eats the same when we get home. He is getting there for sure! Just slow. We were all excited to talk to Casey today on a webcam but he did not get the time to do it. We did get a call tonight which was nice. He is very exited about coming home for Christmas. I cannot wait for him to get here! Nicole and I were texting all day and waiting. She was in class today and could not get his call so she was checking to see if and when I heard from him. Thank goodness he was able to call both of us tonight! I will sleep a little better.

Wear red tomorrow or something red to support our troops!

Day 160 November 11, 2009

Wednesday-Veteran's Day. I am thankful for all the soldiers and veterans out there that continue to fight for this country, especially my two favorite ones, Casey and Preston!

I try to get Cody out everyday, even if just to go to the store. We went to get his new video game and to the mall for a short trip. He ate really well today and loves his new game. His friend Maxx Meyer came by to drop off some hot sauce his mom made for Cody. People are just too sweet and nice to us. We are seeing the good side of everyone. We watched the Islanders game and Cody tried to stay up to watch the whole thing but since he is up so early, he poops out early too. Nicole told us that we might get to video chat with Casey tomorrow. We are to be on the computer at 1:00 and maybe we will. So hoping for that.

day 159 November 10, 2009

Tuesday-Off to Sloan nice and early but first I had to make eggs. This was a first. I stopped for a bagel and he got one and nibbled on it all day. It was kinda his lunch. We had a short visit at Sloan and he gained a bit and that was all we needed to cancel tomorrow's scheduled line placement. Yahoo! We even got the news that maybe if things continue, we could go to once a week visits and not come on Friday. We left there and got a cab and went to NYU to begin some psychological testing for his academic needs. I want to make sure he is in the right place before he goes back to school if he goes in January. We have to just see where he is and where his immune system is. He was nervous for the tests but he did well. We will meet again in 2 weeks and then go over everything. I do not think there is much of an issue here but just making sure. It was nice to see our friends at NYU but most of the nurses were out on conferences so we will see them next time. Cody made sure to tell me that he prefers NYU to Sloan so once we get the OK we will go back there.

day 158 November 9, 2009

Monday- A busy day here for Cody. He had his English tutor in the morning and then Social Studies came in the afternoon. It takes a lot out of him but once we get caught up, it should be a little easier. He needed to squeeze a nap in too. He gets up early, showers and then eats his eggs, with tabasco sauce. Then he eats fried potatoes, like chips, with tabasco for lunch and usually dinner too. He manages another bath or shower in the day too. He snacks all day and sometimes his body tells him he has had enough and he vomits. This happened tonight. He wants to eat more but his stomach is not ready for it. He is not afraid to eat which is good. Let's see what the visit tomorrow brings.

day 157 November 8, 2009

Sunday-Today we both woke up pretty early. Cody felt much better and so we were able to make it to his drum teacher's house for a lesson. It was a different lesson and Cody did pretty well. He played along with Steely Dan and sounded pretty good. Now he wants a stereo set up of course. Thanks, Bobby! It was such a nice day so we decided to go to the outlets in Deer Park just to walk around. Cody bought a pair of sunglasses and we just browsed. Trying to get Christmas ideas. Casey called and it was hard to talk and I hope he calls back. It was a really good day! He feels good, looks good and we just have to keep the pounds coming on without letting any come up...good job Cody.

day 156 November 7, 2009

Saturday- Cody woke up feeling not so good. He had a headache most of the day. I went to the gym and did a few leaves..ugh! Cody took a long nap. He felt ok when he woke up. I met a few from work and for Mary Picarello's bday at Applebee's for an hour. It was good to get out, even for an hour. I got Cody all set upstairs in my room. I think he prefers to be there so he knows when I come home. He was awake because of his nap so we watched the rest of the Islanders game, which they won. He wanted to eat again and then he ended up vomiting. It was at the time when he got his pills so you can imagine that mess. We both slept upstairs. It was not the best night of sleep but he did not have a headache.

Day 155 November 6 2009

Friday- Today was the Yankee parade. They won their 27th world series. Pretty exciting. We were in the city but did not get near the excitement. Cody got an infusion of IVIG which is the intravenous immunoglobulin. He handled it well. Then he got a dose of another medicine tto give him added protection for RSV virus that comes with the flu. They could not stress enough how important it is to wash your hands and get a flu shot. The BEST news today was that Cody is gaining weight!!! Remember he has no IV or line so all the eating and nutrition is up to us and he is doing it!! A line is scheduled for Wednesday just in case. If he continues to gain by Tuesday, it will be canceled. He was so happy and he was singing and dancing in the car on the way home!! That picked him up for sure. He is back on track and we will get past this. ( Intravenous immune globulin (IVIG) is made of antibodies that have been extracted from blood donations from 3,000-10,000 healthy donors. IVIG is used to treat many autoimmune disorders, idiopathic diseases (disease of unknown cause), and infections.

Immunoglobulins (Ig) are glycoprotein molecules that function as antibodies. During an immune response, these antibodies, which are present in the bloodstream, detect and bind to antigens (foreign substances that are capable of inducing immune responses). Examples of antigens include bacteria, viruses, mold spores, dust mites, animal dander, and fungi. Once the antibodies attach to the antigen, white blood cells are stimulated to destroy the antigen. Since antibodies are present in the bloodstream, they are considered part of the humoral immune system.?

day 154 November 5 2009

Thursday-it was a good day of eating. Cody had three small meals and lots of snacks. He was able to keep everything down, that was important. He met with two tutors, took a walk with the dogs and then got a haircut. He did take a little catnap but overall, he did really well. It was a busy day too. I am proud of his eating efforts and we will see tomorrow how he is doing.

day 153 November 4 2009

Wednesday- Well the day started off with Cody up nice and early and showering. He ate pickles for breakfast! Then he had his Science tutor. We were messing around on the computer and went to the Islanders sight and lo and behold, there he was!! It was a beautiful article, a touching video and more photos of the great night. I cannot watch it without tears streaming down my face. SO amazing. And to top it off, he got an email from his favorite player!!!! That made him smile even bigger!!!!!! These players are so compassionate. You would have thought he and Cody were long lost buddies! I guess you can't top that for now. Cody had his social studies tutor and we got a call from Casey too. He is eating more and wants to get out to eat tonight although he can only nibble and not really eat restaurant food. Not sure if we will go or not. He feels good and looks even better. I hope we continue on this track....yeah!!!!!!

day 152 November3 2009

Tuesday- We got up really early today to get to the clinic. We wanted to be out in time for the early soccer playoff game. Cody had a good visit and we talked a little about the feeding tube but I am really hoping we avoid it. It is not a huge deal other than being surgically implanted but it would be nice to not have it. It would help him with calories if he continues to lose weight. He is dropping down to nothing, so thin underneath all those bulky clothes. We left there and got to the game. Great game but after 2 overtimes and a shoot out, they lost. It was sad. But we were glad to be there...

day 151 November 2 2009

Monday-We started back with the tutors today. We missed 2 weeks but will get back into it.

It is so good to be home and just relax. He is doing ok eating. I stepped out today to take the pup to the vet and that is when Cody vomited. Honestly, I am glad it happened while he was alone and he handled it well. No mess and he did not get upset. The dog is fine too.

We took a walk later in the mall, just to get out and all seems good so far.

day 150 November 1 2009

Sunday-Happy November to everyone. Hard to believe it is here already and we have to start Christmas shopping.

Today was a good day. Cody is eating a little in the morning, snacking and then more later in the day. He feels great. He enjoys his baths and showers, sometimes 3 a day.

We are still high from our Islander experience and hope you all got to see the video clips.

day 149 October 31 2009

Happy Halloween to everyone!

We had a great day today and it was beautiful out! We hung around most of the morning, did a few errands and then went with the SooHoo's for a special birthday celebration for Angel Tyler.

We got the last surviving fish settled. After I transferred all the fish to the not leaking tank last week, they were doing ok. My neighbor checked on them, tweaked a few things and when we got home Friday, everything looked ok. Well, when I woke up Saturday morning, it was a horrible scene. All fish were dead and floating. Now these are big fish, I could not just flush them. So it was kinda gross. But the little crayfish made it. So we went to PetSmart to get a smaller tank for him to get settled in. He seems to be pretty hardy. As I am sitting here writing, I am in the kitchen with the dogs and Xena must be glad to be home. She is actually snoring! So funny.

We waited in the afternoon for Xena's return and had a nice visit with Moira. Thank God for Moira! Cody had fun handing out candy and scaring with bigger kids with his ugly mask. We watched most of the Islanders game, I watched it all, he went to bed. GREAT game!

We both are pretty tired so it should be a good night of sleep....Happy Halloween!

P.S. We realized that last Halloween we were with Casey for his bootcamp graduation. Hard to believe that has been a year already!