We are finally out!

Alright, I know it has been a long time since I have posted anything. It has been a super busy month! Logan got discharged from the hospital on September 9th! His lungs cleared up and everything is under control. It was a wonderful day. I mentioned in a previous post that when kids get discharged the staff throws a confetti parade. It was so great, I was worried that Logan was going to freak out with everyone cheering and throwing confetti at him but he smiled the whole time. That had to be one of the happiest moments of my life! Now we are at the apartment and it's so nice! Logan is on eight oral meds and two IV meds. He has to have breathing treatments three times a day. He still needs creams for his skin. He also still has to get TPN and lipids at night. Billy and I have to prepare his TPN and lipid bag and hook him up at night. We also have to hook him up to his two IV meds. It is way easier then it sounds. In the morning when he is done with his TPN and Lipids, we have to draw labs and then I go to drop them off so they will be ready y the time he has to go in to clinic. We started out having to go to clinic every day but the docs decided to move it to Monday, Wednesday and Friday, because Logan is doing so well. All of his counts have been staying up and his blood pressure and his lung issues have been under control. Logan has been a different kid since he has been out of the hospital, he is always smiling and laughing.He has so much energy I have to stop him from doing somersaults and climbing on everything. He has been talking so much, he has quite a few new words, and he is starting to sign. I love seeing him like this! When we started this process I thought it was going to be the most awful thing, but it turned out to be much easier then I thought. Don't get me wrong there were some hard times, it was so hard seeing Logan so sick. I still think that all of this was worth it. The nurses were wonderful, I will miss all of them. We were up there for so long they became family. I think it takes a special person to be a PBMT nurse. I don't think they will ever know the extent of my gratitude for them. Then there was the Family Support group, they were awesome too. They provided us with dinner all the time, they are the ones who pretty much provide all of the movies, games, anything you can think of to entertain the kidos. A lot of people volunteer a help out. And then there was Logan's Best Buddy, David. He was very nice and came every weekend. I feel a little bad because he never really got to know the real Logan, he only got to see grumpy Logan stuck in the hospital. And there are also the social workers, who are always there to be your advocate or just someone to talk to. Jennifer is ours. She is the one who is responsible for helping us to get Billy to stay here, and she is always around if we need to talk. She is great! I know that a lot of people will look back and see this as being the worst experience of their life. But when I look back I see so much more happiness then sorrow. It was an adventure for all of us, one that's not over. We have met so many wonderful people, and have learned so much. I can tell you this whole experience has made me a better person, but the most important thing is Logan's going to have a better life! I am also super excited because I am going to visit Aiden, and Austin for a week! I miss them so much. I am leaving on the 28th and coming back on the 6th. I can't wait to see them, to hug, and kiss them!

Logan's Lipids, TPN and IV meds.

Taking a Breath

It’s been about a week since our last blog. A lot has happened since then. We had gone from thinking that Logan would be discharged within the week to seeing no discharge in the near futureand then back to being discharged soon. Logan was doing great. He had been weaned off the nicardipine (a blood pressure reducer in drip form), which was a big step toward discharge. His solumedrol (a steroid) had been cut down to less than half of his peak dosage. Things were looking up. Then he spiked a fever of 102.2 and was having trouble keeping his 0₂ saturation above 90%. The doctors ordered an x-ray of Logan’s lungs and the results were somewhat inconclusive. The doctors said that the x-ray showed either an infection in his right lungor adelectisis (collapsing of portions of the lung). It was at this point that Logan started getting albuterol, mucomist, and DNase treatments. The albuterol was to expand the passages in his lungs. The mucomist and DNase were used to break apart any of the mucous in his lungs. After each treatment, Logan had to wear a vest that inflated and deflated rapidly to shake him to loosen up the remaining mucous so he could cough it up. Soon after starting the treatments, a CT scan was ordered to get a better look at his lungs. It had only been a couple of days but the CT showed no improvement and actually showed that whatever was in his right lung had spread to his left. The breathing treatments were then increased to every four hours. The doctors decided to order a bronchoscopy to obtain a sample from his lungs (to determine what kind of infection may have been present) as well as to flush his lungs to try and clear up some of the passages. The procedure went well and was fairly short. The doctor explained that she had found barely any mucous and flushed his lungs. The sample obtained from his lungs would be cultured to find out what bacteria may have been present. After the bronchoscopy you would expect him to start getting better, but he seemed to get worse. For two days following the bronchoscopy, Logan needed blow-by oxygen to keep his O₂ saturation above 90%. During those two days it seemed that we would get conflicting reports about how his lungs sounded. One nurse would say that his lungs sounded clearer, another would say they sounded junky, a doctor would say that the airflow was more diminished than previous observations. The doctors began to suspect that the paraflu Logan had contracted had moved down to his lungs. Dr. Szabolcs suggested that if Logan did not improve in a few days that we should try the Ribavirin Tent again. It was also during this time that Logan began to have elevated blood pressures again. The doctors could not explain why this was, but went ahead and put him back on the nicardipine drip to maintain blood pressure control. Noelle had noticed that every time Logan would get an albuterol treatment, his blood pressure would get quite high and then slowly drift back down to the normal range and then jump back up when he got the next treatment. We mentioned this to the doctors and, at first, they didn’t think much of it. It wasn’t until they saw the trend, even with the nicardipine drip, that they replaced the albuterol with xopanex. Albuterol tends to raise the heart rate which could lead to hypertension, whereas xopanex does not. Once on the xopanex, Logan’s blood pressures stabilized and the doctors took him off the nicardipine drip once again.

Now that he was back off the nicardipine drip, we had to go about getting rid of the respiratory problems. Three days post-bronchoscopy, Logan actually started to get better. He wasn’t needing blow-by oxygen when he was awake, which was a good step forward. Over the next few days, he needed blow-by less and less overnight and only when he was in a deep sleep. The doctors, seeing that he was improving, ordered another chest x-ray. It came back showing that his left lung was almost completely clear and his right lung was greatly improved. The doctors said that it was a remarkable difference. During all this, the cultures from the bronchoscopy came back negative except for the paraflu. Seeing this, the doctors discontinued Logan’s cellcept (a GVHD med) because cellcept attacks lymphocytes. It is these lymphocytes that are essential in fighting the paraflu. With the discontinuation of the cellcept, Logan developed a mild GVHD rash on his head, back, and legs. Dr. Szabolcs prescribed basiliximab to counter the GVHD rash and to avoid having to increase his steroids. Within a day, the rash had all but disappeared.

Last night Logan didn’t need any blow-by oxygen and is staying above 95% while awake. The doctors think since he doesn’t need supplemental oxygen, he’s off the nicardipine, and his lungs have greatly improved, that he may be discharged to outpatient as early as late next week. This is where we are sitting right now, so things are looking good.So that was all the medical happenings that have gone on. Aside from that, there have been a few other things going on.

Last week one of the nurses told us that a professional wrestler would be visiting the floor. My family and I used to watch wrestling religiously and Noelle watched it for awhile when we first got together. We figured that it would be some local wrestler, no one of any significance. When he got here, one of the nurses poked their head in the door and asked if Logan would be interested in meeting him. We said sure, not really thinking anything of it. He came to our room first and in walked Goldberg. Logan may not have been very interested, but I thought it was pretty cool. We talked for a little bit, he autographed some portraits and we took a picture together. Goldberg got one of Logan’s first goodbye’s that he’s said in a long time. He visited the rest of the floor afterward. We thought it was awesome that he would take time out of his busy schedule to come visit like that.

A little after Logan came down with his respiratory problems the doctors decided that he needed to get moving around to help get rid of the junk in his lungs. Logan wouldn't do anything in his room because he had been couped up in there for over a month and a half. They said he could go out in the hall, as long as he wasn't symptomatic for paraflu. Problem is, physical exertion caused him to cough, which is what the doctors want, but they didn't want him around the other immunosuppressed children. They then said that Logan could go out into the rest of the hospital, as long as he wore a mask. This was great. We went over to the Children Health Center after it was closed and let Logan ride the glass elevators there. He absolutely loved it. To get him to walk/run around, we would let him go up and then down the elevator and then carry him down the hall, just out of site of the elevator. He would then run down the hall to the elevator. We would repeat this ad infinitum. This seems to have helped a lot with his respiratory problems.On one of the walks we decided to go to the top floor to look at the helicopter. Logan got to see it but wasn't all too interested. While we were up there, one of the flight nurses saw us and invited us to go up close and see it. This was Logan's first time outside in almost two months and he got to see a helicopter up close. It was pretty cool. We were only out there a few minutes when the sun decided to come out. Logan is really sensitive to the sun right now, so we had to go back in, but it was fun nonetheless.

Also of great significance is the news that Logan’s chimerism test came back. This is a test that takes Logan’s blood and determines the ratio of new donor cells to Logan’s old cells. Logan is already >98% donor cells, which is basically 100% due to the accuracy of the test being ±2%. This means that the transplant was successful and he is growing all new blood cells.

Some videos.

A bump in the road...

Last night Logan had to get oxygen. His oxygen saturation dropped to 81%. They took and X-ray and said it looked the same as last time. Well this morning they took another X-ray and they said it looks like he has some fluid in his lungs. He isn't moving any air through his upper right lung. So the doctors decided it would be best to get Logan out in the halls walking to get the stuff out of his lungs. Funny how it took this to get him out in the halls, this wouldn't have happened in the first place if he could of been walking the halls earlier.

Logan got to go out of his room for the first time today in a month! As soon as he realized we were going to make him walk he planted his butt on the floor. It was really funny. He sat in the middle of the hallway for at least ten minutes. But finally he decided he would get up. He walked for a bit and then we had to go back to the room so he could get his breathing treatment.

Then we met with the PT doctor, she had ideas on how to get air moving through his lung again. First was to bang on his chest, back, and side, and I mean bang! He wasn't very happy with that, so her next idea was a vest that pretty much shakes him around. We all prepared for the worst reaction possible. But when it came time he let me put the vest on. Then we all held our breaths when she went to turn it on, it turns out he likes it. Not just tolerates it, he likes it! I think he considered it a massage. So after every breathing treatment he has to wear the vest for thirty minutes.

The doctors added on two more breathing treatments for him too. One is called Mucumist it's very similar to taking Mucinex it'll just loosen up the mucus so he can cough it up. And the other one I don't remember the name of but it will clean his airway out. It's like Drano for the airway. So hopefully everything will clear out of his lung and it will open up again! IT WILL!!!

We talked to Dr. Paul today and he said we can probably still leave here by next week if his lungs clear. I was surprised by that news! I also just now found out that Billy and I are allowed out of the room and can go in all the common areas again. Logan is now allowed out in the hall the rest of the time we are here. He isn't allowed to join in any group activities though. That's ok, Logan hasn't been very social since we have been here anyway...lol. I guess they decided to change their policies a little bit. Because when you trap a child in the room they get sick!

I have a picture of the shaky vest, I will post the video later, it takes a while for it to upload.

So close, yet so far.

There is so much to update everyone on. First off Logan is doing great. We are finally getting his blood pressure under control. The doctors took Logan off his Nicardapine drip today to see if he can do well with out it. I hope he does! These past couple of days have been rough mentally for Logan. Being trapped in this room is really getting to him. Today we got him up and walking around the room and he did a little better then he normally does, but most of the time he throws a fit because he wants out.
All in all today has been a very good day, he has been awake all day with one thirty minute nap. He has been out of his bed and standing all day too. You can tell his spirits are a little down, being trapped in this room all day. I told the doctor I was worried about that today. He said that if Logan's para flu test came back negative then this weekend he can go walking around the clinic area, because there are no children there during the weekend. So please, please, pray that the test will come back negative, he needs this so bad!

Saturday night, Logan needed oxygen out of the blue. So the docs thought it was best to go ahead and get him a chest x-ray. We found out that Logan has atelectasis in his top right lung, which mean the top of his right lung is collapsed. It's not a huge deal, he just needs to get up and move around so he can get some air flowing through it. He is also getting three albuterol treatments a day.

Billy and I are starting our discharge classes this week. We are going to learn how to draw labs, and do dressing and cap changes. I am so excited to learn all of this stuff. And it means we are leaving soon! We just have to get him off that darn nicardopine drip. We will see what happens.That's about it for now. I do have some new pictures, so enjoy!

Oh what a day!

Things are looking up! Logan was taken off his PCA completely, he no longer needs Zofran, and his steroids are down to 6. Soon he won't need the insulin and he should get off the IV blood pressure meds. Then he will only need to take them orally and a have a patch. It has been a wonderful day for Logan. He has been playing and watching TV. He loves playing with his Toy Story toys, he could play with them for hours. It seems like we have Logan back, he has been smiling and talking all day! And he isn't screaming at the nurses anymore.. :)

Today was also a little bit sad. We lost someone on the floor. Three kids have passed away since we have been here. My heart goes out to those families. The nurses said it doesn't happen very often, but these past couple of weeks have been a little depressing on the floor.

On Sunday all Logan wanted to do was sleep and was super grumpy. I told his nurse and they thought that maybe he wasn't getting into a deep enough sleep at night. That night they gave him some Adavan. He slept all night long and didn't wake until about 8 the next morning. On Monday, though, all he wanted to do was sleep again. He could barely keep his eyes open. I thought that maybe he was getting to much methadone and his nurse and doctors agreed and lowered his dose. It has made such a big difference.

I am so excited, we are going to be out of here soon!

Moving along...

Not much is new with Logan. He is getting better everyday. His WBC continues to go up, this morning it was 2.5! Logan is more perky everyday, he has been out of bed most of the day today.

Logan is not needing nearly as much pain meds, but his body is having a hard time getting weaned off of them. It's making him have really painful cramps, so the doctors decided they want to put him on methadone. It makes it easier to wean him off the the PCA quicker and his body wont go crazy on him.

Logan still wont eat anything. He screams at me if I show him food. The nurse said he should start getting his appetite back once they lower his TPN. He is drinking a lot. It's really funny because the only thing he will drink is Sprite. We had to switch to diet Sprite because his blood sugar was shooting up. So now we have to get the diet Sprite and pour it into a regular empty Sprite can. He won't drink it any other way.

Logan's blood sugar did get way to high, the docs said it's because of the steroids and the FK506, an immunosuppressive drug. They put him on an insulin drip and now it's under control. Now that they know how much of the insulin he needs they are going to start putting it in his TPN. When he is done with the steroids and FK506 he won't need the insulin anymore.

The doctors said if we want to go home we have to make sure he needs to be off most of the IV meds. He is slowly going off of stuff! We are hopefully looking at three weeks until we are out of the hospital. Of course he will still have to go to clinics for infusions. But we would like to be back in TX by November.

Also, they have gone down on the steroids almost half of what he was getting before. They are going to go down even more on Monday. He still has major roid rage, big time mood swings. I am going to put a video up for an example, and this video isn't even close to bad. I set him off in the video because I made eye contact with him.

Right on track!

Today, August 1, 2010, Logan has officially engrafted! Saturday his WBC jumped from .1 to .7 so they went ahead and calculated his ANC and it was 518. Day two his WBC was .8 and his ANC was 840. Today, day three, his WBC is 1.0 and his ANC is 810. Since it was over 500 three days is a row he is officially engrafted. Everyone is pretty excited, even the nurses are. They made Logan a Wubbzy engraftment sign. Logan is feeling so much better, no more fevers, not a whole lot of pain. The mucositis is going away. He did have bone pain though. The nurses said when the cells grow so fast the kids get bone pain, and the only medicine that helps it is Tylenol. We gave him some Tylenol and he is fine. He is out of bed more now. He is not happy about it, his legs are still week from being in bed so much.

I wish we could take him walking in the halls so he can get some exercise and it would be good for his lungs. But we are stuck in this stinking room. Thats the worst thing about being here. We are stuck in this room and can't go anywhere, I hate it. What really sucks is watching all these people who are not on droplet isolation walk around where ever they want. I feel like a dang lepper. But that's the only thing I will really complain about because everything else is going so great.

One thing that's very exciting is that they are going to start decreasing Logan's steroids. I loved the steroids at first because they brought down Logan's fever and made him feel better. But now I hate them, they make him the spawn of Satan. About two days after he was put on them I was like, "Who are you and what have you done with my sweet little boy?" I can't even describe to you the roid rage he has. He screams at every nurse or doctor that comes near him. He just figured out he can kick us. The nurse said it's like PMS x10. I'm going to have to agree with that.

Everything is going well so far. All I can say is that we are blessed, and life is good!

Journey of a Lifetime

Ok, so it’s been a couple of days since I have posted. It has been a rough couple of days for Logan. The doctors said Logan id definitely engrafting. Unfortunately for Logan, the means he feels awful. Sunday I posted a blog talking about his fever. His fever got worse on Monday. It got up to 105 and his heart was racing so fast, 200 beats per minute, and he needed blow-by oxygen. But all of that is normal when you start to engraft. Monday was the worst day we have had since we have been here, and I hope it never gets worse than that. Tylenol didn’t work to bring his fever down, so they brought in a cooling blanket for him to lie on. I don’t think it really worked but I think it made him more comfortable. The doctors finally started him on steroids Monday night, and by midnight his fever went down and his heart rate slowed. Tuesday he was happy and playful. Than on Wednesday he was very agitated and you could tell he wasn’t feeling very well, he had a low fever, but by that night his heart rate was fast again and he had a high fever. Billy stayed with him. Billy stayed with him last night and said it was a really bad night. His heart rate was already high, and then they decided to start him a blood pressure med that makes your heart rate go up, so it got up to about 215. This morning when I got here I asked to give Logan some more Tylenol. It worked and right now he has no fever and his heart rate isn't out of control. He hasn't had a fever since ten this morning. The doctors said that if he spikes a fever again they are going to give him a bigger dose of steroids. I am crossing my fingers that will not happen.The best news I have today is that Logan's WBC is now up to 0.3!!! I am hoping it will stay that way or even go up by tomorrow. They put his labs out at seven every morning, and I am running out there to snatch them up. :-) GROW CELLS GROW!!!

Love is all, all is love.

Yesterday the Hendrick Pit Crew came to the floor to visit all the kids. They brought them each a huge bag of toys. Logan loves the toys he got! He wasn't feeling very good when they came in the morning, but in the afternoon he was up to playing, and he just couldn't get enough of his new toys. It was so nice of them to come by and see the kids.

I have to say this whole experience, as horrible as it is, has opened my eyes to how kind people can be. We have had so much support from everyone, our family, our friends, and complete strangers. I think I used to be a little cynical before this, I'm not sure why but I thought that people just cared about themselves. But now I think that most people are kind and thoughtful. People really do care about other people, and that makes me so happy.

So the past two days Logan has had a fever that just wont go away. It was a low fever until this evening, when it's 103. However, the doctors are not worried at all. As a matter of fact they are smiling about it. He also has a rash, and needed blow-by oxygen last night. Now why on earth would the doctors be smiling about this?

Well all of these are signs of engraftment, the cells are growing! We wont know for sure until Logan's white blood count is up to .5, today it was at 0. When he gets up to .5 and stays, they will calculate his ANC and if its above 500 three times then it's official! So we will be watching this week, of course it may not happen until next week, we will see.

One thing that's good about this is even with a 103 fever Logan is still comfortable. He just lays their all relaxed with his hands behind his head and legs crossed, like it's no big deal. I know if I had a fever like that I would be so uncomfortable. But so far everything is going well and Logan is right on track. If he is engrafting then he is ahead, which is awesome!

Staying Positive

Well, the last time I posted I thought Logan had full blown mucositis. Turns out I was wrong. Yesterday his mucositis really kicked in. It was such a rough day for Logan, he was really hurting. They had to increase his pain meds twice. Last night we finally got his pain under control. We know now to push the button every hour and it delivers the medicine to him immediately. Today has definitely been way better. He has been sleeping quite a bit today, but when he is awake he is a happy boy. I think yesterday was the first time I questioned myself. I wondered if I could really handle this. But then I went home and got a full nights sleep, and woke up on a more positive note.

A really great thing is that Billy is most likely going to get to stay the whole time we are down here. His LT got his letter and told him the ball is rolling. This is a huge relief, it will be so much better for the both of us to be down here. We should be heading out of here late November, if everything goes well. I think it will.

One thing I have learned in these past couple of days is doctors are not always right...sometimes they aren't even close. All the doctors thought it would be best if we tried this tent treatment on Logan. They are doing it for a lot of the kids that have Para Flu. What they do is put this plastic tent thing around the bed and a mist with medicine is blown inside of it and Logan breathes it in. That's how the doctors described it when they told Billy and I about this treatment. We thought ok we could try. Logan will probably get scared from this but we can always comfort him. Well turns out that wasn't even close to what the treatment was really like. The respiratory therapist came by an hour before they were going to do the treatment to explain to us what it was like. There is a plastic tent that goes around the bed, but Logan either has to wear a mask or have some kind of hood over his head during the treatment... did I mention the treatment lasts for eight hours? Then the medicine that he is breathing in is some kind of chemo. Like I want to give him anymore chemo! Then on top of everything else, they didn't want Billy and I in the room because the medicine is harmful to us. I told them no I have to be in the room, so they said they have a mask that I can wear but they couldn't guarantee that it would fit my face perfectly. Even though I could be in the room I could not go near the tent. The more I sat there and thought about it the idea of doing this treatment seemed like a bad idea. There was no way Logan was going to wear a mask or let them put a hood over his head. There was no way Logan was going to stay in a plastic tent. He would get scared and freak out. And then I find out if any of that medicine were to spill it would be a bio-hazard. Logan can get very violent when he is scared. So Billy and I decided to refuse treatment. Oh yeah, I also forgot to mention that the docs said the treatment isn't even proven to work. Logan is already starting to get better. So I think we made the right decision.

Right now Logan is sitting on the couch playing, since he has freedom from the lines for an hour. That's always our favorite part of the day. Billy is chasing him across the room, he is actually running from daddy right now! Well I'm going to go play with them. So that's it for today. :)

Day what....I lost count :)

I'm going to start this post off by telling you a little story about Aiden that mom told me. This will really make you laugh! The other day Aiden asked mom why girls boobs are so much bigger then boys. Mom told him you don't really have boobs you have pecks. Aiden was like why do girls have boobs. Mom explained to him that girls get milk in them so they can feed their babies. So Aiden stood there for a second deep in thought, and then said well I want yellow orange juice in mine! This made me laugh so hard. By the way, Aiden refuses to call orange juice anything but yellow orange juice. According to him orange juice is yellow not orange.

Austin decided that he would take his diaper off and pee on the floor in his room. Oh my little trouble maker. I miss him so much. I can find that funny because I am not there to clean up the mess. I know that's just awful behavior, but you have to wonder what on earth was going through his head when he did it. Was anything even going through his head? The boys are doing so great, every time I talk to them they seem so happy. I am so glad that they don't miss us too much. I don't want them to be sad all the time.

Today we found out Logan's test came back positive for the Para Flu. On the last post I was pretty sure that it would come back positive. After so many days of it coming back negative I thought just maybe he didn't have it. The good news is he is not getting any worse, his cough actually sounds a little better. The thing that really sucks for Logan is now that he has tested positive he will not be allowed out of his room until the day he is discharged. So we have to try to get his exercise in this tiny little room. And the parents are not allowed leave the room unless they are leaving or coming on to the floor. We are not allowed in the kitchen, connection room, playroom, lounge, or any of the bathrooms. The floor is so quiet now, none of the kids are out playing, it's pretty sad. But they have to do what they think is best for the kids.

Logan's hair started falling out yesterday. He started pulling it out himself once he noticed, so we buzzed his head. Today I got a lint roller and got quite a bit out. He has a bunch of bald patches now. Having no hair makes his eyes look huge, I think he looks pretty darn cute! He has so much energy these past couple of days, it really has been nice. He plays and laughs. He does have full blown mucositis now but he is on a PCA pump. We are able to keep hes pain under control.

A lot of things have changed since we have been here, it hasn't been the greatest, but we are making the best out of it. The only thing I hope for now is for this stupid flu to pass and for the cells to grow.

GROW CELLS GROW!

LOGAN HAVING FUN!

Good times!

I know, I've been awful. I haven't updated my blog in two days. I think I may start writing every other day, there just isn't a whole lot going on right now, at least not enough to write about everyday. But I do have some news...not great news, but news.

So last time I mentioned that we were on contact isolation. Well now we are on droplet isolation, and Logan is not even allowed out of his room, which means his virus can be caught air born. :( It really sucks because he is feeling pretty darn good besides his cough. One of the kids tested positive for the Para flu and it's spreading like wild fire on the floor. Logan's rapid test came back negative, but his culture has not come back yet. It will be later today when we find out. I was very worried when I heard about this, because a child catching the flu with no immune system is not good, but the doctor said he is not overly concerned because when Logan started showing symptoms he still had an immune system. This means his body was able to build anti-bodies to fight it. Right now the doctor said he sounds great and is showing no signs of getting worse. His breathing is great, he just has a cough. I did ask the doctors to start a breathing treatment for him because the cough is getting a little tight. The breathing treatments always work great at home to loosen everything up. I caught whatever Logan has. For me the Para flu just presents as a common cold. The doctor told me since Logan is already sick I can stay up here as long as I wear a mask.

Logan is doing just great! He is so happy these past couple of days. Lots of smiles and laughing. He is pretty much his self again. Yesterday he sang Lady GaGa and Flo Rida for all the nurses. I'm glad all the nurses can see Logan's real personality, that he isn't a grump all the time. The steroids he's taking do make him have major mood swings. Oh my gosh, I am talking he turns into an evil child. He gets pretty violent and his voice sounds like a little demon. The nurse thinks that the mucositis has arrived. He was a little uncomfortable this morning so the nurse gave him phentanyl and he is fine now. They are going to start him on the PCA later today. I like the phentanyl because it takes his pain away, but doesn't make him loopy or sleepy.

I don't think I explained what mucositis is. It's when you get sores throughout your entire GI tract. It is an adverse effect of the chemotherapy. Since the chemo attacks all rapidly dividing cells in the body, it attacks the mucosal lining of the GI tract. Once the cells in the lining had died, they slough off and an unprotected layer of cells is left. This unprotected layer ulcerates and becomes very sore.

That's about it for now. I will let everyone know when those results come back, but I'm pretty sure he has it. He'll be fine though.

Happy Re-Birthday Logan!!!

It was a very special day today, one I will never forget. At 3:45pm today, Logan got his stem cell transplant! Sure it wasn't the most exciting thing in the world, but it is a new start for Logan. The cells came in a 60ml syringe, they hooked it up to the pump and the line onto his central line and it pumped in. Now all we have to do is wait for those cells to grow. We should know in two to three weeks if the cells engraft. They WILL engraft! Logan slept through most of it, but woke up towards the end, in a terrible mood. My sweet boy has turned into a little demon child, because he is on steroids. But really this is it, I have lots of pictures and videos so this is going to be a short blog.

Day -1

So tomorrow is the big day. Logan is getting his stem cell transplant! Today is Logan's last day of ATG. Thank goodness, he is itching like crazy right now because of it. It seems like the side effects of ATG are kicking in at the last minute. Well, one of them anyway. He has quite a few hives and, like I said, he is itching really bad. The nurse is about to bring him something for that, because the Benadryl isn't helping.
Logan hasn't been feeling very well today. He threw up a lot last night, so they gave him some Adavan for his nausea. It helped but made him sleep. He has been sleeping most of the day. We did get him out of the room this morning. We played in the connection room for a while and then rode around in the car for a little bit. Then we came back to the room and he went to sleep. So again another uneventful day.
Oh yeah, except for they put us on contact isolation because Logan is coughing and they want to make sure it's not an infection. So whenever we go out we have to wear yellow gowns and gloves. After typing that last bit five minutes ago, it turns out the whole floor is on contact isolation because one of the kids has the flu. So now everyone has to get tested until they can go off.
We are looking forward to tomorrow. Even though the transplant only takes an hour, and the kids usually sleep through it... when you think about it, it's kind of like being born all over again! Logan gets to have a birthday twice a year. Well I will write more tomorrow and let everyone know how it goes.

Day -2

I'm sure you are wondering how Logan did during the night. Well he did great! His temp got up to 102 around midnight, but it went down within fifteen minutes. He also got hives, just a few on his face. He wasn't uncomfortable, he slept most of the night. He did wake up to throw up three times, because he was nauseas from the chemo. Today he has either had a very low fever or no fever. As of right now he has no fever and he has already started his second dose of ATG. Tonight should be easier because the second day always is. And then tomorrow is considered his rest day, even though he still has to do his last dose of ATG. Friday is the big day, Transplant day!
We had a pretty good today, Logan actually smiled a couple of times, I have really missed seeing those smiles.:) He was very swollen today because of all the fluids he is taking in. His eyes were almost swollen shut, but they gave him some Lasix. It made him pee a lot, so now all the swelling is down.
We went to music therapy today, it was fun. I think when Logan is feeling better he will really enjoy it. Today he was a little sleepy and kept dosing off through it. But he did pop his head up as soon as he heard everyone singing the Diego theme song.
So all in all it wasn't a very eventful day. We are two days away from transplant day!You can see how swollen his little face got in this picture.

Day -3

Logan started a new drug today called ATG. This is the most brutal one of them all. It's worse then the chemotherapy. ATG is an immunosuppressant. It is obtained by injecting human cells into a horse. The horse's immune system attacks the human cells and the antibodies are isolated to make the ATG. When injected into a human, the horse antibodies attack human T-cells. Usually when kids are given ATG they spike a very high fever. It can get up to 105, sometimes higher. They can get hives and their blood pressure can drop. The doctor said this is when kids feel the worst. It's some really scary stuff. So far Logan has not had a fever, which is a good sign that his fever won't get very high. He may or may not break out into the hives, but it's likely that he will. He had his chemo again today. He had a reaction, but it wasn't as bad because they gave him Benadryl as soon as he started acting uncomfortable. Tomorrow they are going to give it to him automatically since they know for sure what's going on with him. They also give him Benadryl with the ATG. He has been sleeping all day because of the Benadryl. His liver enzymes where a little high this morning. They checked them again before they gave him his chemo and they were normal. They think either the meds just hit the liver or that there was an error in the lab. But he is ok. Santa came by this morning! It's Christmas in July. He brought Logan some cool toys. I would have taken a picture but Logan didn't want Santa near him. He did enjoy the toys though. They had a pretty impressive Santa, real beard and all. It's so nice that they do things like this for the kidos up here. It's such a rough time for these poor kids, and they make it as nice as they can for them. Another awesome thing is tomorrow is Logan's last day of chemo! But he still has one more day of ATG after tomorrow, and then it's Transplant day! This is it for tonight. I hope that there will be no high fevers tonight.
Here is a chart of Logan's white blood count. Billy got all the labs together and made this chart. It should be down to 0 by transplant day. It's crazy seeing this.

Day -4

We had quite a scare today. The morning started out like it was supposed to. Logan got the meds he usually gets and his chemo. About forty five minutes into his chemo Logan started rolling around in his bed and just couldn't get comfortable and then he started screaming. We called the nurses in, and they had no idea what was going on. Logan kept grabbing his neck near the incision from the central line surgery. The nurses were worried that his central line may be leaking because his neck looked a little swollen. They stopped the chemo and everything else that was running through the lines. I could tell by the nurses faces that this could be very bad. I asked what the reaction would be from chemo leaking out of the line. They said it has never happened before. Logan was rushed to get an X-Ray so they could inject the line with dye and make sure that it was not leaking. Through out all of this Logan was still screaming. When they did the X-Ray they saw that the central line was not cracked and leaking. It was a huge relief. I thought I was going to have a heart attack. I have never seen Logan scream in pain like that. It has to be one of the scariest experiences in my life. They could not give him pain meds until they knew for sure that his line wasn't leaking because they have to inject the meds into his line. Anyway, they think that it may be a bad reaction to the Cytoxin. It's one of the rare side effects when the eyes, nose, and mouth burn, in Logan's case throat too. When we got back they gave him pain meds and he calmed down. Tomorrow when he receives his chemo they are going to give him Benadryl. It should help.
After everything he fell asleep for about four hours. When he woke up he felt much better. He has not thrown up at all today which is great! And after this morning it was a pretty good day. We took him out of the room and did ten laps,and took a bath. Then we watched some TV... Wubbzy of course. Right now he is just chilling in bed. Dr. Szabolcs thinks that he will be feeling pretty good tomorrow since the Dilanton will be totally out of his system. I am looking forward to that! That's it for today, there is a wet diaper calling to me. :)

SLEEPY HEAD

Day -5

Today Logan started a new chemotherapy. It's called Cytoxin. Cytoxin interferes with the growth of rapidly dividing cells like cancer cells and can surpress the immune system. He also has to take something called Mesna with the chemotherapy to help protect the bladder because the Cytoxin leaves the body through the urine. Unlike the other chemotherapy he was on, he only has to take Cytoxin once a day. The Cytoxin hit him pretty hard today. About 20 minutes after receiving hit he had really bad diarrhea. But it was only one time. He has been super nauseous all day. He's been throwing up a lot. He hasn't eaten or drank anything since Friday, but no one is concerned about that. His nurse unhooked him from his lines today for about thirty minutes so he could have some freedom, but as soon as we got him up he threw up.
He got his dressing around his central line changed today and he just laid there and let them work. Billy and I were shocked. I think it's because he is just so weak he doesn't have the mental or physical strength to fight.
Last night Logan got a low fever, but they don't give the kids medicine for their first fever, because they want to see if the fever is going to spike. His fever didn't. It when down within an hour. They did take a blood culture to make sure there is no infection, so far they have seen nothing. The'll let it grow for seven days to see. Hopefully there is nothing. I can't imagine how he would get an infection, I have become more of a clean freak then I was before. I went and bought my own disinfectant stuff to keep in the room. My hands are so dry, I think I wash my hands every five minutes.:)
When I look at Logan laying there in bed and seeing how awful he feels, I feel so bad. I mean Billy and I are the ones who choose to put him through all of this. I wonder, is it worth it? I know it will be, it's just hard seeing my child suffer. Well tomorrow is a new day, maybe Logan will feel a little better.I thought this picture was really cute. We were about to give him a bath but he was to tired to sit up.

Day -6

Logan has not been feeling very well today. This morning when he woke up he seemed like he was a little weak but, not too bad. We took him around the floor and went to the connection room to do some drawing. He enjoyed it for about ten minutes and then started nodding off right there at the table. He is just so exhausted and weak. The rest of the day was no better, he threw up a couple of times. Luckily the Zofran is keeping his nausea in check now. He has pretty much slept all day. Around 3:00 we woke him up so we could walk around the floor a little bit, because the more he moves the healthier he will be. We didn't make him walk, we just let him sit in the car while we pushed. At least he got out of bed! But I felt bad after because he threw up when we got back to the room. One good thing is he isn't running a fever. But almost everyone here has said that it's in our future. I hope not. Who knows, maybe Logan will be different, we will see. Well this is going to be a short one today because this is all I have. It hasn't been a very eventful day because Logan has been sleeping. I hope tomorrow will be better for Logan. It's very hard seeing him like this, but it was expected. Only five more days until Logan's transplant!

Billy and I made Logan some Wubbzy stuff to put on the wall. You can't find a whole lot of Wubbzy stuff anywhere. It's Logan's absolute favorite show.

Day -7

Today was a great day! Logan was a lot more perky. He woke up in a great mood, probably because he had such a good night's sleep. I don't know how he sleeps through all that goes on during the night. The nurses come in and out and check his vitals, draw labs, and change his diapers. We had a really nice nurse last night. She insisted that I let her change Logan's diapers so that I could get some sleep. Normally Logan's diaper wouldn't have to be changed during the night but he is on IV fluids so he has to be changed almost every hour and a half. When we change his diapers we have to wear gloves because some of the chemicals from the chemotherapy are secreted through the urine and could absorb into our skin. But to get back to today, it was great. Logan ate a little today. I'm not so worried about it anymore. The nurse told me because he is getting fluids and calories we don't have to worry about him eating so much. On transplant day he will start getting TPN, which is an IV nutritional supplement that provides his full dietary needs.
Logan got an hour of freedom from the all the lines today. The nurse said they are going to unhook him everyday for an hour, and he can do what he wants on the floor. We walked all over the place, and did a little art in the playroom with the other kids. Then he got a bath, not a real bath in the bathtub, just a sponge bath. He is nice and squeaky clean and happy!
Billy and I also signed up for a study today. It's a study to see if parents can control there child's pain with a Patient Controlled Analgesia(PCA.) So, in other words, instead of calling the nurse every time, we are going to be able to press the button for the pain meds if we think our child is in pain. Of course it will be more organized then that, it is a study after all. We will have to fill out a chart telling how we knew the child was in pain, if the meds helped after an hour, how we know they helped, and how the child is behaving after receiving the meds. It will give us something to do, and the way I see it no one knows their child better then the parent. We know if they are in pain or not.
Tonight Billy is staying at the hospital and I get to go to the apartment. Billy will get sleep tonight though because we have a great night nurse. That's all I can think of to write today. Also, I want to thank everyone for all of the support. It always helps to know that people care.