Friday, October 31, 2003

 

Happy Halloween!

Devin began his day by going down to the lab for an endoscopic exam of his stomach. He was a little champ in there and the entire thing only took a few moments. It doesn't look as if anything major is going on but a full report will be done by monday. The initial exam looks okay though.

His urine has some bilirubin in it and his liver numbers are high. This is causing his doctors to look at his liver a bit harder to see what is going on. All of his counts were incredibly off today, alarmingly so. It cause a lot of concern when they came up so Dr Frangoul ordered a retest. Those results were much more in line with what we expected to see so it is thought that we just got a bad draw. When the nurse (or when I do it at home) takes blood, she always takes a certain amount first and tosses it, this is called wasting it. Apparently, the nurse did not waste enough and the sample went down with not only blood but the IV fluids..giving a diluted sample and causing the numbers to be way off.

Devin spent the majority of the day sleeping since he was given versed during the GI stuff earlier. While he slept, Nicholas (who had the day off from school) went down to the playroom with a buddy of his, Sam. Sam and Nicholas shared a cabin during camp over the summer. Sam's brother, Joshua, had a bone marrow transplant earlier this month for AML..just like Devin. Kierynn crawled around on the blanket and I carved a pumpkin for Devin.

In the afternoon, various staff and volunteers came around to do reverse trick or treating. Rather than go room to room and say "trick or treat", they went room to room and left things. Since so many of the kids have dietary restrictions, no candy was involved. They got all kinds of little goodies like comic books, pencils, little toys, Beanies and bubbles. Some of the kids dressed up, Devin had his costume there (Ninja) but he really did not feel like doing it.

When Devin finally woke up this afternoon, he was doing very well. He was well enough to be snotty to Nicholas and get upset that he was not going to be able to go out trick or treating. I promised him that we would get him stuff so when I took the kids around, I took his pail and collected on his behalf. He can't eat any of it but at least he has it.

I don't have his counts again although I did see them and know that despite the really, really bad ones this morning, a retest showed more normal counts.

posted by Devin's Mom 10:00 PM

Thursday, October 30, 2003

 

A Little Better

X-rays have shown that Devin's liver is back in the correct position and most of the air in his abdomen has gone. This is good since it means that there is not a continual leak of air into that cavity. He is still having belly pain and will be going down tomorrow for a procedure to determine if his Graft Vs Host disease is flaring up or what is causing this.

Today was an exercise in frustration as far as his PICC line went. It was adjusted yesterday but a coil was still in the line. PICC services flushed the line again in an attempt to get it straight but an x-ray revealed it was still coiled. A wire guide was placed into the line to straighten it out and it still didn't work. Finally it was discovered that the line is actually fine for what Devin needs, if he was getting CHEMO, then it would be a problem. Basically, all this today was not needed since he is not getting Chemo ::::eye roll::::

As of this evening, he still has IV's in both arms AND his PICC line in. I have no idea why his PICC line is not being used. He is scheduled to get his TPN and lipids tomorrow after he goes down for his procedure.

His counts were back down in the normal range today, I don't have them written but I know they were well down from yesterday. I asked his doctor about it and he said it was most likely from the dehydration. So far, his cultures have grown nothing, indicating no infections or bacteria in his blood. Of course, this could change but it is a great sign so far!

Infectious Disease has said to do nothing with Iain and Kierynn and they don't feel that they are a significant risk to Devin.

posted by Devin's Mom 10:43 PM

Wednesday, October 29, 2003

 

In patient again

As was expected, Devin was admitted yesterday. His exam was unremarkable but an x-ray of his tummy was taken to rule out many things.

The x-ray showed a large amount of air in his abdominal cavity, which is far from normal. This air is pushing his liver and other organs over and is very painful for Devin.

Many liver transplant patients and kids who are taking a combination of various specific drugs like Devin is, develop air bubbles in the lining of the intestines. Apparently, one or more of these bubbles in Devin has perforated and allowed the air to escape. Dr Frangoul does not believe that it has perforated his intestines.

The surgeon was called in for a consult and he agrees with Dr Frangoul. We are putting Devin on some antibiotics, taking twice daily x-rays to moniter the situation and he is on total gut rest...meaning nothing to eat or drink, not even TPN and lipids.

He is currently now one: Prograf, Acyclovir, Vefend, Norvask, Potassium, Magnesium, Pepsid, Amoxicillian, Gentamycin, Flagal, and Levoquin. He gets dilaudin every few hours for pain and has a fentonal patch on. He also had a PICC line put in today.

To complicate matters more, someone who works in the clinic exposed everyone in there to the chicken pox. This is not normally a problem but in immune suppressed kids, this can become a major, major life threatening illness. Devin recieved the chicken pox shot within 48 hours of being exposed and hopefully will be fine. We are waiting on word from infectious disease about Kierynn and Iain since they were exposed as well. Chicken pox has a 21 incubation period with 48-72 hours prior to the break out where someone is contagious. We just need to be sure that nothing is done to expose Devin any more than he already has.

Devin has not vomited really since Monday and spent most of today in a haze. It is a painful thing to have but he is doing very well. He watched me carve a pumpkin for him today but mostly just slept.

His counts today were WBC 12.1, PCV 40 and platelets were 255. These would be wonderful had they not jumped up dramatically overnight, this could be an indication that his body is fighting an infection. Right now though, his doctors are cautiously pleased with is progress so far.

posted by Devin's Mom 10:01 PM

Monday, October 27, 2003

 

Hard Day

Our Devin had a hard day today. He woke up at 4:30 am, he had vomited. I checked his feeds and discovered that I had let it run at a much faster rate than I normally do at night. I think that him getting almost twice as much food in a short period of time than he normally gets gave him an upset tummy.

As the morning progressed, Devin didn't get worse but he didn't get better. I put in a call to the Clinic and spoke to one of the transplant nurses, Becky. I detailed what he was doing as well as no fever, no blood, no temperature etc and she said to keep an eye on him.

He had thrown up his NG tube so after a few hours, he actually asked me to put it back in and get it over with. After the NG tube went back in, I restarted his feeds but at a much lower rate.

By early evening, he had vomited any time he drank some tea but it was not a lot and he was tolerating his NG feeds ok. I crushed his pills and mixed it with soda to shoot through his tube. He has complained of stomach pain through the day but said it is not worse than earlier today.

Devin has wanted me to sit with him all day, with my warm hand on his tummy. He said it makes his tummy feel better to have my hand there. Just like Kierynn fusses if I am out of the room where she can't see me, Devin was the same way today.

It has been a very long day here and Devin is finally sleeping peacefully. He slept very fitfully all day long. He was very disappointed that he was not able to go to his Pack Meeting tonight and get his Bobcat badge. Oh well, we have next month.

Tomorrow we have our clinic visit and I hope Devin is returned to his normal self tomorrow. If not, I suspect that we will be admitted while we try to figure out what is going on. I really hate seeing my guy in pain and hope we can find out what is going on. I hope if it is a GVH flare up that we can knock it out quickly.

posted by Devin's Mom 9:23 PM

Wednesday, October 22, 2003

 

Once a Week!

Woo hoo! We have gone down to clinic visits only once a week rather than twice a week. Devin is doing well except for his lack of weight gain. He has not lost but he has not gained either despite upping the caloric intake he is getting through his NG tube.

He did eat a LOT for him today. For the entire day, he had 2 pieces of bread with butter, maybe 5 bites of onion soup with cheese on it, 4 bites of a grilled cheese sandwich and maybe 1/3 a cup of a beef vegetable soup with cheese on it. For most of us, that is a pathetic amount of food but for Devin, that is incredible! He also did drink a few glasses of lemonade.

Yesterday, rather than ride his bike, he walked up to the clinic and then to the pharmacy. From the clinic to the pharmacy is quite a hike at Vanderbilt and he, of course, complained and howled the entire way there. Today, he rode his bike almost half a mile. He really hates to walk his bike up our driveway so I told him if he did one more loop between each of our neighbors (ride to the mailbox on the left of us, turn around and ride to the mailbox on the right of us) that I would take his bike up. Silly thing! It requires more effort for him to ride that than to walk his bike up but he did it and happily watched me walk his bike up.

Devin had a Cub Scout meeting yesterday and made it through most of it. He did ask to go home a bit early, I think the trip to Nashville earlier in the day made him more tired than normal. I noticed since I have had Devin either walking or riding his bike more, he tends to take a short nap in the afternoon. On Monday, Devin (and the other boys) have a Pack Meeting and Devin will recieve his Bobcat award. He is now working for his Wolf Badge and will get a plastic rank achievement thing...he gets a bead to show he is working on his Wolf badge. When he gets the 4 yellow beads, he has earned the Wolf badge.

His counts yesterday were: WBC 8.1, PCV 35 and his platelets were at 315!!! His neutraphils were at 7.7....can't get any more normal counts than those, they are just awesome.

posted by Devin's Mom 10:21 PM

Monday, October 20, 2003

 

Pictures Added

Nothing much here, we have an appointment tomorrow. I added two new pictures to his page. Click on the link to the left, over there


I will post an update tomorrow when we see Dr Frangoul.

posted by Devin's Mom 8:48 PM

Thursday, October 16, 2003

 

Bike Riding

Devin has been riding his bike in the morning, despite protests. I give him time to get up and awake in the morning. Then I get the two babies into the stroller and we set off. Our neighborhood has little slopes in the road so he has to work to get up them. Yesterday, Devin complained the entire time he was riding his bike. This morning when we went out, he complained but then to prove me wrong, he went above and beyond the point I wanted him to. I would say that he went almost twice as far today as he did yesterday.

We have discovered another food that he pronounced "okay". He ate some graham cracker sticks in peanut butter. He also liked the breading off corn dogs. This works out very well since Iain likes only the hot dog part. Devin eats the breading and Iain eats the hot dog.

We have changed the concentration of Devin's NG feeds and it seems to not agree with him very much. Instead of making all of it at the new strength, I did a mixture and that seems to agree with him much more.

Since he has been out moving around a lot more and eating a bit more, he has a little more energy. He has a lot of energy when he wants to do something but stomach craps always loom when it is something he doesn't want to do.

Devin has not had a hair cut since March. Today he got a hair cut for the first time! It really was just a trim to get him cleaned up around his ears and give him some shape. He looks so darn handsome.

Tomorrow he has his Friday appointment, I am hoping he has gained some weight from Tuesday. He was at 45.25 lbs then and his counts were great.

posted by Devin's Mom 10:14 PM

Sunday, October 12, 2003

 

Going very well

Things continue to go fairly well for Devin. He has lost some weight, we think from his magnesium. He was switched to a different form of magnesium so we will see if that helps out. Because of the weight loss, his formula for his NG feedings was changed to maximize the calories he gets. He did gain a pound between Tuesday and Friday and I am hoping to see another gain on Tuesday.

Devin got his report card on Thursday and got excellent marks all the way around. He will not get any actual grades until the next 6 weeks. He is doing very well with school and is doing much better this year than last year. All of the kids did very well with their report cards.

His dry skin is much better now that we are putting lotion on him several times a day. He doesn't like it because it makes him cold but he is willing to put up with it. He was very unhappy the other day when Iain was climbing near him, hooked a foot into Devin's NG tube and pulled it out. Devin was not really upset that it came out, he was most upset that I had to put it back in.

I had some pictures taken of Devin in his Scout uniform and you can see one of them here. Wolf Scout Devin I have a few more of them that I will eventually get put up as well.

Kelly from Make A Wish came over and we filled out the paperwork to get working on Devin's wish. Dr Frangoul said we could go at any time so we will keep everyone updated on the progress.

Devin's counts are still wonderfully normal. His WBC was 8.3, PCV 36 and platelets were 256.....we love to see counts like that!

posted by Devin's Mom 5:12 PM