day 241 January 31, 2010

Sunday-We were up nice and early and eager to leave. We got out of there around 11ish and we were home at 12. Cody really wanted chicken soup so it was off to Waldbaum's for me. I have a lot of organizing to do here so wanted to get a jump on it. Soup was made and Cody ate and played video games. We got Jazzy back and he is sitting on the couch with her, watching the Islanders. Doesn't get much better than that. I take that back, if Xena were here it would be better. We will get her back Tuesday or Wednesday. We are waiting to hear tomorrow if we are for sure doing the bone marrow biospy on Tuesday. We are both pretty tired and will sleep good tonight. That I know. Enjoy the Grammys, my dear friends.

day 240 January 30, 2010

Saturday-Today was a good day. We had Cody's uncle come visit in the morning and they worked on solving some of Cody's puzzles. Then my friend from work, Kate and her husband came in the afternoon. When they were there, Cody got a headache. I really think it is stressful for him to have visitors. He likes them there for sure and said it was fine but maybe thinking it is too much to be in that small room and 'visit'. He was also anxious about leaving the next day so I think it was a combination of everything. He took a little nap once they left around 5 and then woke up at 8 and was fine. We actually cuddled in bed together, his bed, and watched the rest of a movie. He was fine. He ate and then went to sleep for the night. It was a freezing day in the area so hope everyone got to stay in and stay warm.

day 239 January 29, 2010

Friday-It was a good day. Cody continues to eat and feel good. He did physical therapy and got a foot massage! He is really getting spoiled! The candy cart comes here on Friday so he loaded up. We both took a long nap today as one of his machines was beeping all night. He stayed up till 9 pm and all looks good for our leave for home on Sunday. Nothing is coming back as far as the cultures goes which is a good thing. The meds stop tomorrow so let's hope all goes well.

Casey called and he got accepted into Ranger school. He leaves to go to Ft Benning in Columbus GA on Feb 8. This is an intense 9 week program. He is very excited. I know it will be hard for Nicole to be without him once again but this is what he has been waiting for. I hope Cody is well enough to attend his graduation in April. I am very proud of both of my boys. Way to go Casey!

We heard today that the little girl from NYC, Jasmina passed away this week. She was at NYU with us and we connected with her here at Sloan. She had a tough time and had a rare form of leukemia. She was 6 years old and was a tough fighter too. My thoughts are with her mom and family.

day 238 January 28, 2010

Thursday-Long week and very tired. We had a good day. The plan is to keep Cody on all the anti virals and antibiotics until Saturday. Stop them on Saturday and see how he does and go home on Sunday if all is ok. I will be doing an IV steroid at home because it seems to be absorbed better that way. With the diarrhea, this makes sense. He is doing well, eating and doing physical therapy here. He was entertained by the clowns today and he actually entertained them too. I left to go home to get some bills paid and to grab a coat for him (Thanks Amy!) and he hung out with nurse Julie-thank God for her and all of our nurses here!! We did some laps tonight and he ate chicken soup again. So we will hang a few more days and looking forward to getting home on Sunday.

Day 237 January 27, 2010

Wednesday-I can't believe January is passing us by. Things here are the same. There is not anything growing from the cultures, blood and stool. We are waiting to hear from infectious disease but I still feel like he got a virus. His immune system is down and it hit him hard. He is so much better but you can def tell he took a hit. He is recovering slowly but surely. He is eating more which is a good sign and it is all staying down. Yesterday the food of choice was chicken noodle soup. He ate two bowls of cereal too. I am happy. So just hanging and trying to keep him busy and occupied. Looks like we may go home on Saturday. When we left to come here, we just wrapped him in a blanket while his dad carried him. We have no coats here. Thank goodness for the parking garage. It is gonna be a cold one...stay toasty my dear friends...

Day 236 January 26, 2010

Tuesday-We are here and Cody seems to be better. The steroids give a sense of that but I can see that his body is tired. He is eating more because of the steroids. They are giving him and IV steroid for better absorption. The diarrhea is better and there is no vomiting. Yesterday he sent me on a snack run for chips and today it was for a chocolate chip muffin. He ate cereal today and his food of choice from here is a stir fry chicken and rice but he can't eat the veggies. He is bored but knows he has to be here. We will get through this. He is a trooper...

Day 235 January 25, 2010

Monday-We had an ok night but was interrupted because of his one line still not functioning properly. The doctor on the team today kinda made me feel bad saying we should have taken an ambulance to the nearest hospital to get him stabile and then have them transport him here. She said we were lucky we made it. I think we are realizing how dangerous it was. The steroids make Cody feel better, but his body is stressed and needs time to recover from this horrible event. We are still waiting for results. The virus studies take longer. There is an E. Coli bacteria that presents itself with all that he showed including the dropped blood pressure. Not sure just yet what the cause was and we might not ever know. He ate a hamburger and he ate pasta salad with peppers and cucumbers. How bad do I feel? I am hoping it is not this. There is also a stomach virus going around too.

We got moved to the floor and have a room. We are here for the week, maybe longer. He, of course, is not happy about this but we will get through it. He needs time to recuperate so we do not have a relapse. He is so fragile and this was proof of just how fragile he is. I am just glad we were home and not out somewhere. It is a setback but one that we will get over.

Day 234 January 24, 2010

Sunday-Well, today was a quiet one. His levels are all still out of whack but things are settling down, slowly but surely. He needed a few more bags of hydration with potassium during the night. There is nothing growing from the cultures which is good. The doctor on service said it could be a virus. He also said his white count was very high which could signify an infection or the fact that he was in shock. I think things are settling in my mind and I realize how scary this really was. His feeding tube was leaking during the night and actually was burning him. The gastric juices are potent. The surgeon came and adjusted the balloon inside and that seems to be working. He is nibbling on food and his spirits seem a little better.

We watched the first football game today, sorry about the Jets. We could not watch the 2nd game but saw the highlights. I made the night pass faster. We are looking forward to a quiet night.

day 233 January 23, 2010

Saturday-Well, the rest of Friday night did not go so well. It was actually right around 11 pm and we were in Urgent Care and Cody scared the life out of me. I find out later that this was life threatening and that he was in shock. His blood pressure started dropping and his heart rate increased to something like 170. They kept giving him bolus's of fluids (which are fortified saline solutions that run in very quickly) and he ended up needing 7-8 of them. He was very dehydrated. They started putting in IV's rather abruptly, in his arms and foot to get antibiotics going. He was coherent but just scared and the kept saying it was an emergency. His pressure and heart rate did not get to a constant level for quite some time. Sloan does not have ICU but rather a POU (pediatric observation unit) so there was talk of us going over to Columbia to the ICU there. But after a few hours he finally was somewhat regulated so we got to the POU here on the 9th floor around 5:30 a.m. So no sleep here. We took cat naps here and there yesterday and Cody began to feel better. He is getting all kinds of antibiotics. His white count was way up indicating an infection somewhere. He did not get a fever because it is masked from the steroids. Not sure where the infection is but could be in his blood or because of the vomiting and diarrhea, maybe a gastro infection of some kind. We probably won't know exactly but we do know he is getting better, thank goodness. He was not happy to know we have to be here most of the week but he needs to get this infection cleared. He is still being hydrated and his levels of things like potassium and magnesium are off so he continues to get fluids. He still has diarrhea but no vomiting and he wants to eat which is a good sign. Long night and a long day.

day 232 January 22, 2010

Friday-Today started out great. Cody had his math tutor and met with the social studies teacher for a little while. We were all scheduled for physical therapy at 5. We left early to run to Best Buy and to the AT and T store. Once in the AT and T store, Cody felt nauseous and asked to go to the car. Well, we did not make it home when he vomited. Once home the vomited continued with diarrhea. He went down quick. I was on the phone after the first episode since this has not happened in a long time. He was fine all day and he ate lunch with some pasta later. Within in an hour, he was lifeless and I was scared. His dad came over to check on him and at that point, I knew we needed to come in. Cody had to be carried to the car and was so upset. My ex drove us along with his wife (Oh joy) and I took care of Cody in the back. Thank goodness for bedpans and buckets. We managed to get here and he is getting fluids as we speak. He has perked up after just one bolus of fluids. It is amazing. I am hoping this is a short stay. I did make arrangements for a hockey game for tomorrow that we had to forgo but there are more. My guess is he picked up some virus. No, I am not a doctor but it just came on so quick and after a pretty good day. So we are here tonight and let's hope for a discharge home in a day or so. Thanks for reading.

Day 231 January 21, 2010

Thursday-Today was a first. Cody went to the movies with his dad. He did well. Just still dealing with high blood pressure. It allowed me some time to go visit all my friends at SH. It was so good to see everyone and just be there. Cody had a full day and went to bed early.

Day 231 January 21, 2010

Thursday-Today was a first. Cody went to the movies with his dad. He did well. Just still dealing with high blood pressure. It allowed me some time to go visit all my friends at SH. It was so good to see everyone and just be there. Cody had a full day and went to bed early.

day 230 January 20, 2010

Wednesday-Well, I was hoping we could stay home for a week but we had to go back to Sloan today. The mediport was not working properly. We tried it last night and it was too tight. So today we ventured in and we tried a couple things. It appears to not be clogged but just not flowing. So it was de-accessed and we did the other one. We got home around 3 and we both took a nice nap. Then we got up and Cody finally got to physical therapy. He did well but it is so tiring. He went to see his dad for a little while and I got out to eat with Jean. Nice to see you Jean! Hanging here tomorrow and then Cody is doing a drum lesson on his new drum tomorrow evening...have a good night all!

day 229 January 19, 2010

Tuesday-It was a quiet night, thank goodness. We got up and headed in to Sloan. Nice visit there and counts were great. Each week the needle in his port gets changed. So today that happened. Unfortunately, we found out later when I hooked up the anti fungal med that the line was not working properly. So tomorrow we are heading back in. I thought we might have a week without being there. We are scheduled to go back next Tuesday but will head in tomorrow for this. He is feeling good but a little up and down with the steroids. He eats here and there but does not drink too much. I am doing my best to keep him hydrated. I put pedialyte in his feeding tube, several times a day. I am sitting here tonight watching the hockey game. Not so good right now but hopefully they will pick it up. I will have to give Cody the full report in the morning.

Cody's blood pressure is doing better, thank goodness. Just takes a few days for the meds to work. So off to do meds then bedtime for me. I am pooped.

day 228 January 18, 2010

Monday-Today we were up nice and early and Cody's drum teacher came over to hang. I had some personal business to take care so a drum lesson was planned but did not happen. Cody did not want to wear himself out before the Islander game. We had another great time at the game. Cody enjoys it so much. We are so very lucky and I am hoping we are not taking advantage. They keep telling us we are not, but sometimes I do feel funny. I see the smile on Cody's face and I would somehow find a way if we had to pay for this each time. It was another win and everyone there says Cody is the good luck charm!! We got to see Richard briefly as the team was headed out rather quickly for a trip to Pittsburgh for that game tomorrow. We do not have another game planned but will find one to attend soon. It is really the only thing that makes him happy and that we can do. We are very lucky! Tonight his player reminded us of dinner so Cody cannot wait to go do that!

Cody's blood pressure and blood sugar have been all over the place. I know that tomorrow's visit we will be discussing what to do about it. Otherwise he feels good and is eating a meal or two each day. I am sure he is gaining weight which is a beautiful thing.

Have a good night everyone! OXOXOOX

day 227 January 17, 2010

Sunday-It was a rainy day here. Cody slept late and his uncle and cousin came to visit. We all went to Dave and Buster's and I got to go have lunch with a friend. It was nice to relax and do something 'normal'. We were pretty beat from the late night before so we just chilled out for the night. It was a nice day despite the rain.

Day 226 January 16 2010

Saturday-I feel like today flew by. Cody slept late and then took a nap so he could be ready for the Islanders game tonight. It was a great game with a win after a shootout by the Islanders. We had great seats, again and Cody got to see Richard after the game. The highlight of the night was when Richard was called on the ice to present a check to someone and Cody saw his bracelet on his wrist. I thought I saw a tear in his eye too. I know I had a few. We were so touched. He just gleamed. It was so cool!!! We chatted with Richard after the game and he gave Cody an autographed stick. He is really a special person! We are so excited to go to the game again on Monday. These nights ones are difficult because they are late but Cody would not stop at a chance to see a game. We are also so lucky to have Ann. She gets us great seats and takes us behind the scenes, away for crowds and allows for some personal time for Cody and Richard. Cody just glows!! I love seeing him so happy.

Day 225 January 15 2010

Friday-It was nice to be home on a Friday. We had to take my car in for a recall and looked around at some new Nissans. What to get next??

Cody's friend, Lauren visited today. It was nice to hear. She is home from college.

Cody took a nap and then we had the blood pressure issues. Thank goodness Sloan is so good about taking calls and calling back. They offer so much support and are always pleasant. Looks like he may have to go back on the blood pressure meds while he is on the steroid. The steroids just create such havoc while they work so hard and do the trick. It is tough. It was a good, relaxing day.

day 224 January 14, 2010

Thursday-We went to Sloan today nice and early. We met with the gastro team and ironically, Cody's feeding tube was clogged. It took a while to get it unclogged. I tried to put the antibiotic through it as I was told but it clogged it, I think. Thank goodness after several 'tricks' they got it unclogged. Then we went up to the day hospital for IV antibiotics. All was good there too. We got home and Cody wanted to fondue again. Hey, he eats the shrimp and the broth I make is pretty good!

An update on Casey-well, he did not start ranger school just yet. He is working but not doing ranger school yet. That might start in a few months. He sounds good. He did have a tough time visiting one of the injured guys from his platoon and he said it was hard. There was a memorial for the guy they lost that Casey knew very well. That is the hard part. I hope he has strength to handle all of that. He and Nicole are on their way to FL for the long weekend and I am glad for that. I love it when he visits everyone. They miss him too.

Good day and hoping for a better weekend!!

day 223 January 13, 2010

Wednesday- Good day today with Cody working with 2 more tutors. Feels good to have normalcy. Crazy as to what is normal now for us. Some time I want to write what we go through in a day as far as medical goes. It is amazing and tiring. I know I am tired. It is 6:45 and Cody just went to bed. We have an early morning appt with the dr and then to the day hospital for antibiotic infusion for pneumonia. I will be resting when I can too.

Thanks for reading....oxoxoxox

day 222 January 12, 2010

Tuesday-Cody had a great night and we had a great dr visit today. His counts are beautiful so it worth noting: White blood count 9500 (normal is between 4-10,000), Hemoglobin 11.5 which is normal, platelets 136, 000 (normal range is 150, 000 -400,000. I think this is the highest he has been since transplant)and ANC or absolute neutrophil count is almost 8.8 which is acceptable. It will come up but overall, counts are great! He is gaining weight too which is from the steroids but he is also eating. Tonight he ate 5 shrimp when we fondued. He is snacking quite a bit but that is to be expected and all good because he could use to gain. He has to be on this dose of steroids for a month so he will probably get puffy. He will not be happy about that but what can we do. We go back on Thursday to meet with the gastrointestinal doctor and will see what they have to say.

I do see a bit of the anxiety in him from the steroids too. He has a hard time sitting still. Today we even went for a walk. He is worried about me getting sick and is kinda protective over me too the past few days. I do my best to stay healthy. I protect him like crazy too! We are good for each other.

We are hoping to go to the Islanders practice and then to another game this weekend. I thank God for that connection. It is the only thing we have to do and it brings a HUGE smile to his face.

Hope everyone has a good night....sweet dreams!!

day 221 January 11, 2010

Monday-Well, today we started off with the tutors again. Cody has English in the morning then relaxed and had Spanish in the afternoon. He did well but it is hard to get back into it. After the Spanish teacher left, we both took a nap. We went to meet the indoor soccer league and the coach for an 8pm game which would be late for us. Cody also got his Coaches Award tonight from his coach and a few other things like a nice jacket. He was thrilled. It was a good day and an even better night.

day 220 January 10, 2010

Sunday-Pretty good day here. Cody woke up with energy and we went for a ride. We did a little shopping and he looked at cell phones. I let him drive a little in a residential area without many cars. He is dying to drive a little. Then we came home and later in the day he wanted to go back out. For all my FL friends and relatives, it is pretty cold here. I drive him to the front of the store/restaurant and he runs in. He gets a blast of cold air and he loves it. I go park the car and I freeze! It is all good. We got our dogs back and once again, our so grateful for our dog keepers. We really would not be able to keep them if we did not have anyone to watch them. Xena came back with food too! Thanks, Moira! It was a good day back home, for sure!!!

day 219 January 9, 2010

Saturday-The doctors rounded nice and early for us. We were first but that did not help us get home which happened at 2. But we are home. It is always overwhelming for me to get home. It is all me and that worries me. I do it but it is tough. We had dinner and he ate which makes me happy. He wanted stir fry. I did my best with it. We tried to relax as best as we could and Cody crashed pretty early. Let's hope for a good night. OXXOOXXO

day 218 January 8, 2010

Friday- Better day today because we know we are going home tomorrow. That perked Cody's spirits up right away! We took a walk down to the cafeteria just to get out of the room. Cody ate his stir fry from the hospital and ate some chips and candy. The "candy cart" comes around each Friday so we sat around waiting for that. Things are in progress to leave tomorrow so it looks good.

day 217 January 7, 2010

Thursday-Today was a day of ups and downs and emotions. Cody woke up feeling blah and upset about not going home and then took a nap. I talked to him about everything before he fell asleep but it did not help too much. He woke up and his dad was here so we played a game and he was fine. Then the team came around and explained about the rejection and why he needs to be here. The steroids are scary and he needs to be monitored. He is worried about his body puffing up and especially his cheeks. I feel so helpless. He gets very down and starts asking the questions..what did he do to deserve this, this should be happening to criminals and not him, it is really sad. I met with a few drs and the psychiatrist and asked for more meds to help his emotional state while we are here. I think once we get home, he will be happier. He is being so strong and so brave through all this. Let's face it, there is a war going on in his body. He will win it but it is draining him right now. There was some talk of us leaving on Saturday so let's hope that happens....stay warm

day 216 January 6, 2010

Wednesday-Today we slept late, like until around 9. The night was good but Cody's temperature, blood pressure and heartrate was lowering during the night. It can happen from the steroids.

Lots of things can happen. He is up and down with his emotions too. He gets upset one minute then laughing the next. It makes you fidgety too. Dr. Kernan came to talk to me today. She explained that what he has been going through looks like the GVHD- the rejection disease. The blood in his stool confirmed it and we were forced to treat with high dose steroids. Steroids suppress your immune system and that is one of the things that caused the HHV6 virus to reach toxic levels back in June/July. We are monitoring that level daily. That was the reason for the MRI on Monday. We have been trying to treat the diarrhea, which was all probably the start of the GVHD and tried to avoid steroids because of his previous reactions. So far he is just emotional and fidgety and is having a few mood swings. He did eat a little by mouth today and he is tolerating the feeds again. We are going slow. He does not want to be here but we have to watch him closely. I went home today and got his cowboy hat so he could show the guy here. The picture is attached. He is worried about his cheeks getting puffy which they are but I explained to him that no one cares, they just want to see him happy and healthy. Let's hope he has a good night.

Day 215 January 5, 2010

Tuesday-well I think I feel asleep on this sleeper chair as if it were cotton. Crashed. And I know this because Cody was up before me and reached over and around me to get his computer and I did not move. Then when I did become coherent, I woke up to him saying..."Good Morning, Sunshine." How sweet it is! He woke up like a different person. He was upbeat and happy all day. Tonight he may seem slightly confused and it a bit edgy. I can handle that as long as it is temporary. His blood pressure is up due to the steroids. His EKG was better than last time and his MRI shows the scaring from the virus but is normal. He is asleep now and it is 9:30 so let's hope for a good night..sweet dreams.

Day 214 January 4, 2010

Monday-A mother should always trust her instincts. I had a feeling Cody was getting sick when he decided to rest most of yesterday. It is always hard to know. On one hand, I feel like he could be getting better and sleeping more because that is what teenagers do. On the other hand, I worry that is he getting sick which was the case. He got a fever around 9 then it went away. I got him up at 12 and he did not have one. Then he got up at 3:30 to use the bathroom and there was a significant amount of blood in his poop. I called on Friday with this issue but was told he did not need to come in. (Next time I will go with my gut.) So out into the bitter cold we go. We got here in record time, no traffic and stayed in urgent care till around 2 today. He was treated with lots of antibiotics and a stress dose of a steriod. Lots of cultures were taken. Finally we had a plan. He will be getting a high dose steriod to stop the inflammation in his bowel. He has been having more diarrhea and now vomiting here. The higher dose can cause his disorientation again so an MRI was ordered for tonight also. He is not a happy camper and feels pretty bad. We are here for about a week to get this under control once and for all. The bottom line is that it is an infection or it is the rejection. He is being treated for infections and the steriod will do the trick for the rejection. Let's just hope he escapes the mental aspect of it. He is nervous about the MRI but they are going to give him valium for it. Today he also needed platelets and a blood tranfusion. He lost a lot of blood. I will continue to keep this updated as we go along. Thanks for reading.

day 213 January 3, 2010

Sunday-Bitter cold here today. Again Cody slept late and was tired today. He went to bed early which had me alarmed. He feels fine in every way so just hoping he is just tired. He does have a little blood in his stool which we will look at on Tuesday. I am hoping that it is ok. I will call tomorrow to make sure. He did not eat anything today but that is ok. Tomorrow the tutors start again so looks like a busy week. I plan to speak with my principal and see what my options are for work. It is a bit scary and I am anxious about it. It will all work out once we get started.

Hope everyone stayed warm today.

day 212 January 2, 2010

Saturday-Cody slept pretty late today. We got up and decided to get lunch out. Cody asked if his friend could go. It is a girl and a friend. So we met her at the Baja Grill and had a nice time. Cody had a few bites of fried ice cream. He loves it. We ate too much so I suggested we walk around the mall. Cody bought a work out stick and I bought a pair of Brookstone slippers. Do you see where I am going here? He buys something to help him become more active and I buy something to make me feel more comfy while resting. Not bad.

We stayed up for the whole Islander game and they won in a shoot out! Cody emailed his buddy during the game to congratulate him on his goal! Such a good boy and a great day.

day 211 January 1, 2010

Friday-Welcome to 2010! This year has to be a better one for us. I feel it and I think Cody is on his way to recovering after this long, hard year. He seems very upbeat and seems stronger.

Today was a quiet day and we took a ride to Target to return something. I took him over to West Hollow's parking lot as he is dying to drive. Because of the epilepsy and the anti seizure meds, he cannot drive. Tell that to any healthy 16 year old and you will see what I am going through. It is hard. He did well and we just kinda drove around for a bit there in the parking lot. We came home and watched a few movies. He tried to eat a little but was not into it. He smiles more, I think so he must be feeling better.

I hope this year is better for everyone. It has been a very trying and challenging one for us but we got through it. When I look back, I honestly, do not know how I got through it. I feel like with all the support from all of you, I was able to do it. Thank you for your continued support..LOVE YOU ALL! Happy New Year!