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!