Tuesday, September 30, 2003

 

Still doing well!

Devin is still doing very well although he was feeling kinda crummy today. Devin is not a morning person and on Tuesdays, we have to get him up, dressed, moving and medicated several hours before he normally begins to move much. This means he is out of sorts and feels yucky the rest of the morning until he gets home. Today was no exception and once we were back home, he bounced back and acted like his normal self.

Devin's Prograf level is high again for some reason so we are holding his dose for this evening and again in the morning. We will resume his Prograf (antirejection drug) tomorrow evening and give it at a lower dose.

Our dude has very dry skin so I have been putting lotion on him. He is off his sour cream kick, still on his Pringle binge. His drink of choice has switched from lactose free milk to apple cider. He expressed an interest in a slushy so tomorrow we will be making a run to Sonic to see if he will drink a slushy. Anything to get him to eat or drink is good. He is nibbling at food but really doesn't eat a lot so he has his NG feeds running often.

Tomorrow we have Kelly from Make A Wish coming over to do paperwork so we can get his wish into the works. We are hoping that after Thanksgiving but before Christmas that it will work out that Devin can get his week in Florida doing Disney and all that.

Devin went to the Cub Scout Pack meeting last night and was pleased that he got a necklace with beads on it. Each meeting he will get a bead for showing up and a bead for being in uniform. He proudly wore his cub scout uniform and next month he should get his Bobcat badge.

I was thrilled with his counts today. His WBC was 7.2, PCV was 39 and his platelets were 215!! Woo hoo...go Devin!

posted by Devin's Mom 10:21 PM

Friday, September 26, 2003

 

PICC gone!

We were not expecting his PICC line to come out until next week at the soonest but it was taken out today. I have been having trouble getting blood from the PICC even though I have been flushing it faithfully. Today, both transplant nurses, Cassie and Becky, could not get blood from it so Dr Frangoul said to pull it.

Devin was less than pleased to discover that he didn't need any medication for the line to be pulled and after crying in anticipation, he did fine. Tuesday was his 100 day post transplant work up and a bone marrow was drawn.

Woo hoo!! We are still in remission and his bone marrow shows 100% donor (this is FANTASTIC news). A skin biopsy was done at the same time and today we found out that Devin actually has GVH of the skin. He has the best form of this, totally asymptomatic. Dr Frangoul said it would be a good thing to have him have skin GVH chronically with no symptoms. Devin lost about 20 grams, which is not really significant but he doesn't weigh enough to be losing anything. I had been letting him be free of his NG feeds during the day for several hours to try to get him to eat more. Obviously that is not working so he will be off for a shorter period of time until he eats more.

Devin seems to be over his sour cream kick. He has not asked for sour cream in almost a week. He is eating about 2 cans of spicy Pringle chips every few days though and drinking a lot of lactose free milk. He does nibble and munch at dinner but not any great amount.

He is very excited since Monday is a Cub Scout Pack Meeting that is being held outside. It is at a local park and since it is outside, he can go and attend but still keep somewhat isolated from the other kids. Devin is working on his Bobcat Badge so he can then work on his Wolf badge. Nicholas is a second year Webelo and Ryan is a first year Webelo. Kaity is a Brownie. Need Cookies? :wink:

I don't know what his counts were today but I know on Tuesday they looked great.

posted by Devin's Mom 4:08 PM

Friday, September 19, 2003

 

Long Day

It was a long day in the clinic today. Devin had to get IVIG, which is a blood product, and it takes a long time to infuse. While inpatient, it is run over about 5 hours. In the clinic, it took just over 2. A significant difference but still a long time. He also got a once a month medication since he is not taking Bactrim yet. Devin munched on some Pringles, ate some sour cream and did a bunch of homework before going to sleep. I read a book while he and Kierynn slept.

Everything is looking good with Devin. On Tuesday, he will get his 100 day post transplant work up, including a bone marrow draw. If things look well, his PICC line may come out on Friday but that is just a possibility, not a given.

Devin is acting more and more like our Devin now. He is eating more, he ate almost half a cheeseburger for dinner, and is not sleeping as much. He is also feeling well enough to be snotty with his siblings.

His energy level is increasing daily and it is just so nice to see Devin acting like Devin again. I probably won't update again until Tuesday unless something comes up.

His counts today looked good, I don't know where I put the sheet but they were fine.

posted by Devin's Mom 10:11 PM

 

Doing Very Well

I have not updated in a week or so since there has not been a lot to say. Devin is home and doing well.

He is less sleepy now and not wanting to just sleep all the time. His methadone is almost done and that is probably a big reason why he is not sleeping as much.

He is still out little sour cream boy who wants to eat sour cream by the bowlful. He doesn't want to pollute it with anything, he just eats it straight. He is also eating more at meal times. It is still just bites and nibbles but he is attempting it. Devin did add another food craving to his list in the past few days. He is now also eating Spicy Cajun Pringle chips. I would be happier if he was craving some real food but at least he is eating.

Devin is still getting ampicillian and levoquin here at home but that should be finishing up in the next few days.

Dr Frangoul wants Devin to exercise more so he has been getting out on his bike and riding up and down the block with me walking along side him. He has such skinny little legs, I will be glad to see him gain some weight.

On Tuesday, his counts looked excellent. His WBC was 8.1, PCV was 33 and his platelets were 75! He has a clinic appointment today and will be getting his IVIG and another IV med that he gets once a month in place of Bactrim.

posted by Devin's Mom 8:31 AM

Friday, September 12, 2003

 

Home Again!

Woo hoo! We are home again. Devin went down this morning to have his PICC line put in. (And for more information than you ever wanted to know about a PICC line, click here. ) After it was placed and checked, Greg brought him home. Wonders of wonders, besides his antibiotics, he was only given one new medication. His potassium level was a little low so he is now on potassium.

Rather than continue the vancamycin, Devin is now on ampocillian and levoquin. He has been on levoquin plenty of other times but this is the first time for ampocillian. He gets the amp every 6 hours and the levoquin once a day. Since this goes in his PICC line, that means that at midnight, I am hooking him up and then again at 6 am.

The medical supply place that brings out the things we need brought out a new pump for his NG feeds. This little pump is pretty nifty and very small and portable. It is much easier to lug around than the one we had. The one we used 2 years ago was supposed to be portable and it was such a pain. It was very tempermental and would beep if you looked at it wrong. As neat as it is, this new pump, I hope we can give it back soon.

After he got home, Devin went out in the front yard with his pillow and just laid on the grass, in the shade, with his brothers for a while. He looks so happy to be home. He had part of a pizza sandwich for dinner along with some more sour cream. He has turned into a big sour cream eater.

We are free and clear until Tuesday, barring any problems. Woo hoo!

I looked at his count sheet today and I know I have them somewhere but it is late and I am not going to hunt them down this evening. He did get platelets today even though he truly did not need them. The resident was being cautious since Devin was having the PICC line put in.

posted by Devin's Mom 11:32 PM

Thursday, September 11, 2003

 

Hickman History

It was decided to go ahead and pull his Hickman (central line) out today since he does have an infection in it. (It is probably Enterococcus...which means nothing to me other than you don't want it there). It was done in the early evening. Shortly after he got back to his room from surgery, Devin was eating a bowl of sour cream. He was a happy camper since he not only got sour cream, he also had the white medicine

Not a lot went on with our dude today. He slept for a good portion of the day. A nice volunteer came in and read him a story while Kierynn lay next to him. Iain was with us today and took a nice nap over on the second bed. Even though Devin complained, he did manage to get all of his homework done before he was taken to surgery.

The plan, barring any complications, is for him to get a PICC line tomorrow and then come on home.

His counts today were WBC 4.1, PVC 30 and 43 for platelets.

posted by Devin's Mom 10:01 PM

Wednesday, September 10, 2003

 

Moved!

A larger myleo room became available so Devin moved over to it today. We have been in that room before and actually, he stayed in it for his first transplant. We lost our window but gained a second bed, more space and a computer.

Devin wanted to sleep once again today but was feeling good. He did all of his homework for Greg.

Dr Frangoul told us that there is a possibility that Devin's Hickman (central line) will be removed on Friday and a PICC line put in until his antibiotics are finished. Once the PICC line is removed, he would be central line free. This is not yet a given, we will find out more tomorrow based on what his blood cultures show today.

I updated the kids page tonight. Some of the pictures were taken in late May, prior to his transplant and others were taken on Sunday. You can check it out here Kids Page I am planning to corner Alex the next time he comes over to get a more recent picture of him, that picture is 2 years old. Kristen pretty much looks the same.

Devin's counts went down but his nurse said that could be the result of the antibiotics working. His WBC was 4.1, PCV 32 and platelets were 37.

posted by Devin's Mom 10:39 PM

Tuesday, September 09, 2003

 

In patient again!

Well drat, we are back in the hospital again. I took Devin in for his normal Tuesday appointment. I brought up my concerns on his stomach and asked about using lactaid. Since there is nothing tangible (as in nothing to physically go by other than Devin complaining) regarding his stomach, they are just watching it. We did get permission to use lactaid prior to dairy products so Devin can eat cheese and sour cream. Now, if he gets any lactose related problems, then we have to stop.

We had just gotten back in the house when the phone rang. It was Becky, one of the transplant nurses. One of the cultures drawn on Devin today was showing positive for gram positive bacteria and we needed to bring him right back in to be admitted and start antibiotics. :::sigh:::

After 15 minutes in the house packing a bag and making sure that Iain was taken care of, Kierynn, Devin and I went back down to Vandy. We spent time in the clinic waiting for a room and he got his vancamycin started. Once we were in a room, he got levoquin started as well.

I brought all his meds and chart with us. He currently only has Wart (his warthog), an unnamed chocolate lab, Chip (a cat) and Nanook(a dog) with him. You can actually see Devin in the bed!

After we got to the room, Devin was feeling good and did all of his homework. We are in a regular room rather than a myleo room which means although we have no space and no computer, we do have a WINDOW!!

His counts today were WBC 8.1, PCV 39 and I have two numbers on his platelets, in either event, he didn't need any. The clinic told me his platelets were at 52 but over on the floor, his nurse printed them out for me and they were at 39.

posted by Devin's Mom 7:50 PM

Monday, September 08, 2003

 

Sleepies

We are still battling the sleepies with our Devin. We know the methadone makes him sleepy but given the chance, this boy will just sleep the day away. We have found that if we force him up and moving, he snaps out of it and is fine. We found this out yesterday. It was a beautiful day out so I nagged him out onto the swing that we have on the front porch. Once out there, Devin did a bunch of school work and just soaked up the outside air. The rest of the day, he was playing and didn't want to sleep.

With that in mind, we did the same thing today. He got up, did some work, played and even rode his bike. We had a bike for him but it was too small. Nicholas has graduated to Kristen's bike so Devin got the bike Nicholas had. We did put training wheels on since Devin has never learned to ride yet. Greg is planning to work with both Devin and Kaity to get them bike riding before Christmas.

Devin is still just nibbling at food. The foods he wants to eat and begs to eat are those things with lactose. He wants sour cream in a bad way, just to eat plain but I can't find any lactose free. I am going to ask about using lactaid with him so maybe he can eat small amounts of foods with lactose. Just enough so he will eat. Today he ate a little bit of chicken noodle soup and then ate a few bites of a taco for dinner. He is drinking plenty of his lactose free milk.

He has been complaining of stomach pain but he has nothing else going on. He is not nauseated, he is not feverish, he is peeing fine...everything seems fine but he complains of his stomach hurting. I am going to ask about this tomorrow at his appointment as well.

Many have asked about Devin's post card project. We have postcards EVERYWHERE!! He has gotten all 50 states and I can't even begin to list all the postcards he has gotten from other countries. He has gotten them from Australia to Iceland, Russia to Zimbabwe. I don't know how all these folks are finding his name but they are sending our dude postcards.

Tomorrow is a clinic day so Devin, Kierynn and I will be making the trek down. Kristen volunteered to keep Iain for the morning so that will make the trip less stressful. I am hoping that Devin won't need any blood or platelets tomorrow.

posted by Devin's Mom 9:33 PM

Friday, September 05, 2003

 

Food

It is a struggle to get Devin to eat. He wants to eat but nothing tastes right to him and he pushes it away after a few nibbles. The only thing he will consistantly eat is a hamburger/noodle casserole I make and lactose free milk. I think smells are not helping either. He seems to be very sensitive to smells, more so with food. Nothing smells right and makes him nauseated to the point he doesn't want to even attempt to eat. He is trying though and will at least nibble a few things. He is still getting his NG feeds until he becomes more interested in food. Kids on prednisone sometimes get incredibly hungry but so far, that is not the case for Devin.

Devin had an appointment today and things are looking well. He has lost a little bit of weight since his last visit. His counts are looking good. I don't have the exact counts but he did not recieve any platelets or blood today. He will be seen again on Tuesday.

His energy level is not as high as I would like it to be but it is getting better. He still wants to sleep a lot more than we would like but when he is up, he is playing and acting normal. He usually does a few hours of school work a day and has been able to keep up with his class. I spoke to his classroom teacher today and we are going to set up a meeting so we can work out getting the tests to Devin.

One of our dogs went in for an ear cleaning and is now on three different meds, to include prednisone :) Since I have a set scheduled that Devin gets his meds, Daria will get hers at 10 and 10 along with the bulk of Devin's.

posted by Devin's Mom 6:37 PM

Tuesday, September 02, 2003

 

Doing Well!

There was nothing really to report yesterday so we are catching up today. It was a clinic day so everyone had to be up and moving pretty early this morning. Devin got his blood draw at 7:30 and we were out the door by 8:00 am to make our 9:00 am appointment.

Dr Frangoul and Cassie looked over his meds, everything looks good. While we were waiting, Devin asked Cassie if he could eat some Dorito chips. She checked with Dr Frangoul and Devin is officially able to eat anything he wants, barring lactose. "If he wants a burrito, let him eat it." Since he has been released, Devin has not had any nausea or vomiting at all.

He is still wanting to sleep a lot but that is from the methadone, I think. It is being tapered and since when he does finally wake up, he is active and bouncing around, we are not overly concerned about it.

Devin was tickled that there was a sub in his class today which meant no work was sent home for him to do. Little does he know that we will work on phonics tomorrow.

I am not sure what his counts are today beyond platelets. His platelets were at 49 which means he could need a transfusion on Friday. His WBC and PCV must have been fine since Cassie didn't mention them and I forgot to ask.

posted by Devin's Mom 9:20 PM