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.

Day -8

Logan has not been feeling a hundred percent today. Of course you can't expect someone on chemotherapy to feel great. I think all the medicine has had time to get through his system. He got up and did a couple of laps around the floor and he played some basketball. Most of the day he just wanted to lay down and rest. One good thing is that he hasn't been nauseous. He does have a low fever, but he's fine with it. Usually when Logan gets sick his fever runs in the 104 range. The only thing that worries me is he wont eat or drink anything. He ate a huge breakfast this morning, since then he hasn't wanted a thing. I think his neck might be sore from the central line and it might be hard to swallow.

We decorated Logan's room and it feels a little more homey now, as much as a hospital room can anyway. We put a big longhorn symbol on Logan's door. Four doors down from us there is a family with Austin and Longhorn stuff on their door, I want to meet them!
Three kids got discharged today! I am so happy for those families. Whenever a child gets discharged they have a really cute parade. Everyone comes out and lines up in the hall, the kids being discharged and their families walk in the middle, and everyone throws confetti and cheers for them. I'm probably going to cry like crazy when it's our turn. But that's not for at least another two and half months.
I am at the hospital tonight and Billy is going to the apartment. He didn't get any rest. I'm sure he is looking forward to the bed. Well, I'm done for tonight. Hopefully Logan will feel a little bit better tomorrow, but I'm not going to get my hopes up for that.

Logan's room, after we decorated.

Logan's Door, we are still going to add more.

Day -9

Today is the day I consider the official beginning of it all. Logan started his chemotherapy today. The chemo he is on is called Busulfan. He will have to take it every six hours for four days then he starts a different type of chemo. Busulfan inhibits the growth of rapidly dividing cells like cancer cells and can suppress the immune system.
Logan has been doing great, I am so proud of him. The only thing he had a hard time with today was getting the dressing changed around his central line. Everyone says the first dressing change is the worst because there tends to be dried blood on the gauze which causes it to stick to the central line entry point. His new dressing doesn't have any gauze on it, it's just a plastic type bandage. (it looks like clear tape) Logan was a little sore from the central line surgery he got yesterday, but he didn't make a huge fuss about it. He got up and took a couple of walks on the floor, drove around in the little car, and played some basketball! When I left the hospital he was pretty tired. He was dosing and watching TV. I think he will sleep just as well as he did last night.
We met a couple families on the floor. Everyone is so kind. There is a family there that we had already met about three weeks ago. Their little boy, Joey, got a stem cell transplant. Logan and Joey were supposed to be admitted at the same time, but Logan got pushed back two weeks. Joey is doing amazing, he is so cute and has so much energy! Joey and his family gave Logan a welcome to the floor present. Also, our friend Penny made Logan a poster for his door. It is beautiful, everybody stops to look at it! We also met a lady from family support today. Logan got a care package full of fun things to do and they had little projects in there to get him motivated to walk around as much as he can. She had us make a wish list for all three of the boys because Santa is coming for Christmas in July. They are going to mail presents to Austin and Aiden. We also found out that the a NASCAR pit crew is coming at the end of the month. They are bringing goodies for all the kids on the floor.
Billy is at the hospital with Logan tonight. I didn't get a whole lot of sleep. I am going to have to get used to all the beeping and buzzing. I think I may have already because when I came home to the quite apartment it seemed odd not hear those noises. I am definitely looking forward to the big comfortable bed!
I didn't have a chance to talk to Aiden and Austin tonight. I couldn't call until after their bedtime. Mom says they are doing great, and being good boys. I am also so proud of them, they, too, are having to sacrifice a lot right now, even if they don't realize it. Well, I am tired and tomorrow is going to be another long day. I only hope that Logan will do as great as he did today.

Logan's first round of Chemotherapy 7:00am on 7/7/2010.

Logan playing basketball

Logan chilling out while getting his second round of chemo.

The poster Penny made for Logan!

Day -10

Today Logan got his central line put in, it is also known as the Hickman catheter. He has a central line to receive Chemotherapy and other medications. Also, to give blood products, to give nutritional fluids, to draw blood and to infuse stem cells or cord blood. The catheter itself is a soft, flexible tube that is inserted into a large vein in the chest that leads to the heart.
Logan also started a medicine called Dilantin today. It's anti-seizure medication. The first round of chemo he is starting tomorrow can cause seizures, but the Dilantin will prevent this. Logan is doing ok right now. He threw up a little bit, but I think that's because of the pain meds. They gave him Zofran so that should help. He is almost asleep, it's been a long day and he is very tired. He is doing so well with the central line. I don't think he has even noticed it's there because he has a shirt on. I am so proud of him, he has been such a brave boy. He is not liking the idea of taking meds orally, but I think in time he will get used to it. I tasted the ones he has taken so far and they don't taste bad at all, so I think he may just be a little scared. Hell, I'm a little scared....
If you are wondering why today is Day -10, its because Day 0 is transplant day. I'm staying at the hospital tonight. Billy and I are going to switch off every other night. Only one parent is aloud to be here at night. Well, that's it for tonight. I am going to attempt to get a little rest, but we will see how that works out :)


Logan's Central Line

Logan's Room

Logan playing before bedtime!

5200

So, everything starts tomorrow. Logan gets his central line in at 9:15AM and will be admitted to 5200. That's the transplant floor. The floor has an isolated HEPA-filtered air system. Each room is filtered as well. When you first walk in you go into a room that's air locked. Visitors have to put on little booties over their shoes. The parents get to bring their own "clean shoes" that don't leave the floor. You have to wash your hands before you are allowed to enter. It's pretty nice how they have everything set up. There are a total of 16 patient rooms on the floor. The patients are encouraged to be active so there is a playroom with many toys for them to play with, videos to watch, and video games to play. All the common areas are wiped down after each use to prevent spread of bacteria. There are some accommodations for the parents such as a common kitchen, a common bathroom with shower, and a relaxation room. There are also times that companies or churches will bring meals for the whole floor. A masseuse and a hair stylist come once or twice a week to provide services for the parents as well. The nurses on the unit are exclusive to the unit, meaning we won't have to deal with a nurse that has no idea what goes on in the unit. The nurse to patient ratio is either 1:1 or 1:2. The patients' vitals are monitored in the room as well as on a large LCD screen outside the room. That's about all I can think of right now.

Aiden's doing great! He learned how to swim. I am a little sad I couldn't be there for it, but Tashie sent me a video of it!
Austin is doing great too! He is a little brat boy as usual... haha. I miss them so much. I call them and talk to them everyday. It makes things a little easier. Well this is going to be it for tonight. I still have quite a lot to do to get ready for the hospital. Oh yeah, I thought this was funny: I have to put Logan's stuffed animal, Doggy, in the freezer! This way it kills all the bacteria and dust mites. It probably sounded pretty funny to our neighbors when I reminded Billy to put Logan's dog in the freezer today!

Aiden Swimming!

Austin Swimming!


Little Angel