Tuesday, December 23, 2003

 

Up and Down

That is what is happening with Devin's weight. It is up, it is down, it is up...today it was down. I don't know what is going on with it. He is getting the same amount of NG feeds, he is eating foods yet he dropped weight. ::::sigh:::: Maybe I should sew some lead weights into the hem of his pants before his appointments.

Other than his weight, Devin's appointment was uneventful. His counts look good and he is looking great. After his appointment, he went over to the floor to visit his nurses. While he was there, he peeked in to wave hello to Barrett. Barrett is a 6 month old little girl from Clarksville who got a bone marrow transplant last week. She is doing very well so far.

School is now out on break so Devin is happy about that. He is not so happy that I am still having him work on his phonics and reading to me. That is still his weak area in school, reading. If he takes his time and thinks, he does very well but he wants to rush through it.

We have been told that Devin's page has a massive silent readership who follows our journey...including some of the soldiers in Iraq. Please feel free to click on comments to say hello so we know you are reading along. We do read the comments to Devin and he asks us if anything new has been added.

Have a great Christmas!

posted by Devin's Mom 9:33 PM

Tuesday, December 16, 2003

 

Crystal Boy

Devin was thrilled to pieces today as we were waiting for an elevator. A gentleman approached us and said "I know you, you are Devin Proctor!" Devin, who was playing his Gameboy, mumbled something but didn't look up. I said that he was Devin and that the man must have seen the hospital video. He told me that HE was the one who had commissioned the video and he was on his way up to the Clinic to see Devin.

Devin turned his Gameboy off and Mr. Lee gave him a box. It had a crystal paperweight with a 3D model of the new hospital inside the crystal. It is really cool looking, it even has a little helicopter on the roof. Mr. Lee said that everyone who helped build the hospital got one of them and Devin helped build the hospital. Devin loves that crystal. He could not wait to show it to people and he opens the box constantly to look at it.

His appointment went well. Devin has gained some weight! Of course, we are running a HUGE amount of NG feeds through him to get him to gain some weight. His counts are looking good too. Since the higher dose of NG feeds is causing him a little bit of a tummy upset, we are going to back it off a bit during the day but turn it back up at night.

Devin's birthday party was a success. We had 9 kids who were there. After playing some games and having a cupcake, we went to see Haunted Mansion. It was an okay movie but it did have a few moments that were bordering on too scary for smaller kids to see. We also had a Pack Meeting where Devin sang "Santa Claus is Coming to Town" with the rest of his den. Santa showed up and Devin got his pinewood derby car.

We are free from visits until next Tuesday, when hopefully, we will go to every other week.

posted by Devin's Mom 9:34 PM

Friday, December 12, 2003

 

Eight Years Ago

We were greatly blessed with the addition of a sweet boy into our lives..Devin Connor



Happy Birthday Devin!

posted by Devin's Mom 12:12 AM

Tuesday, December 09, 2003

 

Skinny Boy

Even though Devin is getting his NG feeds AND eating, he is just not gaining weight. In fact, he has lost a bit of weight. We spoke to the dietician and we are going to start running is feeds 24 hrs a day. He is currently running at 65 ml per hour and she wants him up to 95 ml per hour. As I am typing this, he is up at 85 and I suspect by tomorrow he will be at the 95 ml per hour.

We also have a bunch of recipes for shakes to try to get him to drink and of course, give him pretty much anything he wants to eat.

Other than his weight, everything is looking well for Devin. He has a lot of energy and is behaving like a normal kid. He is very excited because his birthday is at the end of the week.

Tonight he had Cub Scouts and handed out invitations to his party. The theater that opened up down the street has a party room so we will be meeting there and seeing "The Haunted Mansion" Devin is pinging off the walls in anticipation of all of this.

All of his counts looked great!

posted by Devin's Mom 10:09 PM

Tuesday, December 02, 2003

 

PICC Gone!

Devin had the PICC line removed today. It had been giving me problems when trying to get blood or to flush it and then it started to hurt Devin. Rather than mess with it any more, it was just pulled.

Since it was pulled, Devin had to get an IV in his arm to get his medication. He squalled and screeched like they were trying to put a garden hose into his vein. Devin doesn't like the numbing spray but today asked for it. Once the IV was in, he was fine.

His clinic visit went well and we will go back in one week. Dr Frangoul mentioned that we can start spacing our visits to every other week in the near future. Woo hoo! Devin had gained over a pound from his last visit.

This evening, Devin had a den meeting and was made a Den Chief, Denner...something like that. In any event, he has a rank cord now on his uniform and is very pleased about being selected.

Devin has been feeling his oats lately, enough that he has been put in time outs, sent to bed early and had things taken...in other words, he is starting to act like a normal kid again! Much as it is annoying when he acts poopy, it is great that he is feeling frisky enough to get snotty with his siblings and behave in a kid like manner.

We will see you next week!

posted by Devin's Mom 10:21 PM

Tuesday, November 25, 2003

 

Bobcat Devin

Devin went to his pack meeting last night and got a load of awards. He got his Bobcat badge, his Working Towards Rank badge, 2 beads for his rank, a belt loop for biking and art and a patch for the Veteran's Day Parade. He also took part in a little skit called "Thanksgiving on the Frontier" where he played the Indian. There are pictures uploaded on the link to the left.

Today he had his regular clinic visit and we stopped up on the floor to visit some of his nurses. They are always glad to see him and exclaim over how well he looks.

Devin's weight is jumping all over the place, he was down almost 5 lbs from Friday. I don't think these weights are accurate since on Friday, our scale and the clinic scale agreed but today, there was a difference. Part of this could be because we ran out of his magnesium with protien and had given him just plain magnesium. This can cause a weight loss (trust me, you don't want the details here). We are still running his NG feeds and he is eating.

His PICC line was going to be removed today but since next week he has to recieve a once a month IV drug, it was decided to leave it in rather than stick him next week. It looks like Tuesday he will have the PICC line pulled.

Over all, everything is look well enough with Devin that we are now back to once a week visits.

We hope that everyone has a wonderful Thanksgiving!

posted by Devin's Mom 8:31 PM

Saturday, November 22, 2003

 

New Photos Added

I added some photos to an online photo album. If you click the link over on the left, it will take you there. Just click on the album named "Devin" to see the new pictures. Of course, feel free to check Kierynn out as well.

Edit: I fixed the album so people can see his pictures. Silly mom forgot to mark it as "public"

posted by Devin's Mom 11:07 PM

Friday, November 21, 2003

 

Rib Man

Devin has turned into a rib eater like nobody's business. On the way to his clinic appointment today, he convinced his dad to stop at a BBQ place and get him a half a rack of ribs. That boy ate every bit of it too. It is just so wonderful to see Devin foraging in the kitchen for food. He is constantly on the look out for something to eat. His weight was up to 50lbs today. Once he remains constant and we have some room to move, then we will start to back off his NG feedings to see if he will maintain his weight eating on his own.

His clinic visit was uneventful. Everything looks good. His counts were great. He is having trouble maintaining his magnesium level so his dose of magnesium was increased. Since he is not getting IV fluids overnight, we have to be sure that he drinks enough fluids.

Devin's Gameboy SP had been missing since September. There was great rejoicing in the Proctor home this evening when it was found buried in a pile of things sitting under the sewing table. Devin is already spending the money he thinks he may be getting for his birthday next month.

Our next appointment is on Tuesday and hopefully we will go back to once a week. I have a few new pictures of Devin, one of him eating his beloved ribs, and will try to get them up on his page this weekend.

posted by Devin's Mom 9:44 PM

Tuesday, November 18, 2003

 

Smooth Sailing

Happy Birthday to Dr Frangoul!


Pretty smooth sailing in any event. We had a clinic visit today and it was uneventful. Who would have ever thought uneventful would be so nice?

Devin does have a bit of a dry cough but a chest x-ray revealed nothing. His weight was down from 55 lbs to 47 lbs. This leads me to think that the 55 lbs was not accurate because he has been eating like a hog and not been sick at all.

The cough did rear its ugly head during evening meds and the NG tube came out. I let him have a break before it was replaced back.

The video with Devin has been shown to all staff members going through Orientation for the new Children's Hospital. While we were down in x-ray, waiting for him to be called, several workers came over to tell him how they enjoyed seeing him and told me how utterly adorable he is. I think he is adorable but I am just surprised at how many people have said how touching the video is. At one point in the video, Devin is holding Kierynn, gives her a kiss and informs the camera that he is her favorite brother. Awww...he really is though.

Devin had a den meeting for Scouts today. The pack meeting is next week and his den is doing a little skit. Devin plays an Indian and everytime Indian is said in the story, he stands up and pretends to shoot an arrow while saying "Straight and True!"

All of Devin's counts were fantastic today, WBC was over 6.0, PCV was over 30 and his platelets were 125.

Iain's hand is fine, no blistering at all. Remember, no news is always good news and we will update again on Friday, following our clinic visit.

posted by Devin's Mom 10:16 PM

Friday, November 14, 2003

 

What a day!

We started out with a round of excitement this morning as Iain decided to be helpful by grabbing a mug of hot water out of the microwave. He sloshed it over his hands and arm and earned us all a trip to the ER. He is not seriously burned and doing fine with some motrin.

Devin had his appointment this morning and things are all going well. He has gained some more weight and overall is doing fantastic. He is no longer getting some IV fluids which means we have gone back to giving him his magnesium by mouth.

He is still eating! He is eating ribs, BBQ, steak fat, marshmallows, cereal, donuts....he is trying things! We had lasanga the other night, he started to pout when he was told he could have what he wanted AFTER he ate some of dinner like the rest of us had. He got a miniscule piece and after he picked around and ate the noodles, he actually asked for more noodles. We certainly are catering to his taste right now but trying to lead him back to the path of eating the meals the rest of us have.

Since things are going well, this won't be updated as frequently. It will be usually updated on clinic days (Tuesday and Friday) and then when things pop up. Just remember that no news is good news!

I found two older photos of Devin and added them to his page, check them out if you have the chance. There is a link over to the left

posted by Devin's Mom 9:37 PM

Tuesday, November 11, 2003

 

Oink Oink!

Just 2 weeks ago, Devin weighed 43 lbs, he had dropped several pounds in a very short period of time. Today, Devin weighed in at 54 lbs 3 oz! This is the most actual weight (not retained water weight) that Devin has actually carried. He looks and feels like a solid boy..not a skinny waif with toothpick legs.

Dr Frangoul is very pleased with Devin's progress. When Devin's GVH first manifested itself, steriods were tried but seemed to have little effect. This time around, the steriods seem to be working fine and we are finally seeing the side effect of them..hunger! Devin is a ravenous little beast at the moment. (As I am typing this, he is spooning cheese onto a roast beef sandwich that he is going to warm in the microwave)

The entire way to Nashville, he described in loving detail exactly what kind of roast beef sandwich he wanted to eat. We made a detour and got the darn sandwich...which Devin inhaled in short order. Less than an hour later, he ate half of another one.

His energy level has been incredible...he is just like one of the other kids. If you look at our gang, you would not pick him out of the crowd now except for his NG tube.

Can you tell how thrilled we are with how our guy is doing? He is just such a good guy, a brave little fighter and nothing gets him down. He spent the afternoon doing his homework and preparing for his reading unit test.

Tomorrow he has a Scout meeting to prepare for the Pack Meeting. Devin will be getting several awards at the Pack Meeting, I will list them when he actually gets them.

posted by Devin's Mom 9:19 PM

Monday, November 10, 2003

 

Eating and Walking

You would never know that Devin was the same boy, who just a short time ago, spent the day laying in bed with a load of pain medication. He is bouncing out of bed, constantly hungry and very active.

He had breakfast, he had lunch, he had dinner, he had snacks and he ended the evening roasting some marshmallows in the fireplace. He is hungry yet only eats specific things.

Devin has been very active, playing with his brothers and sisters, walking around and NOT laying on the sofa. He is getting back to being our Devin dude.

This evening he worked on his homework and studied for a spelling test tomorrow. We have a clinic visit tomorrow and it would be nice to be told we can go back to 1 visit a week.

posted by Devin's Mom 10:10 PM

Sunday, November 09, 2003

 

Great Day

Devin had a fantastic day today. He is feeling spunky, running around playing and actually cleaned his room without being asked to do so. He has not felt nauseated, had no stomach pain and continues to actually eat.

He has been wanting roast beef so today he got it. He ate almost 3/4 of a roast beef sandwich with cheese. For dinner, he ate a handful or cheese fries (with bacon) and about 2/3 of his BBQ ribs. He wasn't too sure at first because he wanted steak fat (eewwww!) but he liked the ribs. A short time ago, he wandered into the kitchen and got a bowl of dry cereal (Cinnamon Crunchies) to munch on. This is in addition to his NG feeds. We are thrilled that he is eating.

I think Devin is also excited that he is eating things and that they taste okay to him. He told me that he thinks his tastebuds are finally coming back.

Our young lad is just doing great, he looks fantastic and we love having him home with us. He told me earlier today that he was glad I was his mom. We are so very greatful and honored to have him as our dude.

posted by Devin's Mom 10:27 PM

Saturday, November 08, 2003

 

Parade!

Devin was feeling great today so we loaded up and headed out to the Veteran's Day Parade. The den was not where we had been told so we had to walk about a mile to find them. Devin did walk part of it but Dad ended up carrying him for part of it. We did find them and got the boys installed on the float before the parade began.

The rest of the family lined up near the start and waited to see our boys go by and wave flags at us. Devin had a grand time and really enjoyed being around his buddies.

Since he got home on Thursday, Devin has actually been eating. He had some cereal earlier today and for dinner, he requested steak fat...not the steak, just the fat (!!) and a biscuit. He is also tolerating his feeds well enough that I bumped the rate up from 50 to 55 ml an hour.

I added a picture of Devin, click on the link with today's day over on the left. Despite Devin wearing the hat, it was not that cold out...he just feels it more than others. It was a beautiful sunny day today.

posted by Devin's Mom 8:37 PM

Friday, November 07, 2003

 

Eating!

Devin is eating some things! Not a lot but it is a step in the right direction. He ate a Rice Crispy treat, sipped on some egg nog and ate some Apple Jacks. That doesn't sound like much but he ate it!

Today we went down to the clinic for a check up. Everything is going well. Devin will be getting IV fluids at home and since he is getting them, two of his medications are being put into the fluids, magnesium and potassium.

It was a hectic evening, trying to get a girl scout out the door, trying to get a boy scout out the door, trying to get a prescription filled and waiting for home health to deliver the fluids.

Devin has just been doing wonderfully. He has no nausea, no vomiting and while he has complained about his stomach hurting some, it is not constant. He still has a narcotic pain patch on his back but he is being weaned off it.

Tomorrow, if he feels well enough, he will take part in the local Veteran's Day Parade. Of course I will have pictures of him there :)

One of Devin's hospital buddies, Joshua, is coming up on the time when you normally see GVH develop. Please keep positive thoughts and prayers that Joshua will develop minimal GVH and be allowed home soon.

posted by Devin's Mom 7:39 PM

Thursday, November 06, 2003

 

Home Again!

I was surprised to find out that our Devin was able to come home today after all! I was really expecting him to be held until tomorrow.

He has complained of stomach pain occasionally but nothing can be found that points to anything specific causing it.

Since Greg went down there this afternoon to be with Devin, Cassie (the transplant nurse) called me to go over his medications, to let me know what needs to be given etc. I will draw some blood in the morning before we go to clinic.

Of course, being Friday, we will be going to the afternoon clinic. I will bring all his meds so that we make sure that I have everything and the correct doses. Some of his medications have changed a little while he was in the hospital so we want to all be on the same page.

It is nice to see Devin home. He has gained weight and looks fantastic!

posted by Devin's Mom 9:18 PM

Wednesday, November 05, 2003

 

The Taco Saga

The saga of the taco...with sour cream and cheese....has ended. Devin got the green light to have a soft taco today.

I went out to Taco Bell, which is fairly close to Vandy, and got the prized taco. When I got back, Devin didn't want it right away but finally he did.

He carefully unwrapped it, eyed it and picked it up. He took a teeny tiny mouse nibble and.... promptly spit it out with a horrible face, said it was nasty and he didn't want to eat it. LOL Hmmm, I think I could have predicted this a few days ago..which is why I was more than willing for him to try it. He was not going to eat it. Devin did apologize for having me go get it and then not eat it. I told him that I never expected he would eat it to begin with and it was okay.

Devin decided to be sociable with one of his nurses...at 3:30 am so he slept in later than he normally does. Once he was up, we did his homework. His PCV was down to 21 so he got some blood today.

Most of his medications are being switched back to oral from IV. His NG feeds were up to 40 ml per hour. He did complain of his stomach hurting but the resident could hear a lot of gas rumbling in his system.

Dr Ho thinks that Devin may be released tomorrow although Friday is more likely. We will just have to wait and see.

posted by Devin's Mom 11:12 PM

Tuesday, November 04, 2003

 

NG Feeds

Devin is nothing if not a stubborn little creep at times. He is bound and determined that he is not going to eat ANYTHING unless it is a taco with sour cream and cheese. Nothing else will do for him. This evening, Linda and I coaxed him into eating 3 bites of raspberry jello.

His NG feeds were started up again today. They are going at the snails pace of 5 ml per hour and will go up as he tolerates it.

Devin was just a bouncy, happy guy today. He wanted to sleep but we got up, did his home work and he is now all caught up with the work he missed last week.

He did not get his insulin last night and his glucose hovered right around 70. All during the day today, his glucose was smack dab in the normal range so Dr Endocrin#2 thinks that spreading the TPN/lipids out has done the trick. His glucose will still be watched but there is no need to give him insulin.

Devin has been on high blood pressure medicine (Norvask) but taken off it during this hospital stay. His blood pressure started to go up again and it is being watched to see if he needs to go back on the Norvask.

All staff members have to gown, glove and mask to come into the room now. This is due to Devin's exposure to chicken pox last week. I don't have to do it since I am not in direct contact with other at risk children. Since Kierynn was also exposed, if I take her out of the room, I pin a blanket over her stroller so she is not exposing anyone. This is normally done through coughing or sneezing.

Devin had a mini concert today, an encore from yesterday, with Linda and Yolanda. Today we were treated to You are my sunshine. Yesterday we heard She'll be coming round the moutain

Dr Ho still thinks that we may be able to be home by the weekend but it depends on how Devin is tolerating his feeds and if he will eat some actual food. He is still holding out for the taco.

posted by Devin's Mom 7:54 PM

Monday, November 03, 2003

 

Food

Okay, not really food but he can get some things. He has been offered broth, mashed potatos, Gatorade and jello. All of them met with firmly clamped lips and an emphatic head shake no.

Devin is doing very well. We worked on a bunch of his homework and then he got to build some lego things.

All day long his glucose level was between 62-67....the low side of normal. Even with the insulin last night, his glucose level jumped to over 200. We spoke to Dr Endocrin#2 and Devin will now be getting his TPN/lipids over a 24 hour period of time rather than a 12 hour period. He will get the same amount, just at a slower rate. Dr Endocrin#2 also is having Devin's insulin shot not given this evening to see if that has any effect, the slowing down of the TPN/lipids.

There was some confusion over the contact isolation, if it would start today or tomorrow. No one was agreeing and eventually it was decided that it will begin tomorrow.

Dr Ho, one of the oncologists, is seeing Devin this week. Dr Ho was one of the initials doctors who say Devin 2 years ago. Kierynn thinks Dr Ho is the neatest thing this side of sliced bread. She beams at him whenever she seems him and just bats her eyes at him. If things continue to go well, we may be released by the end of the week. Woo hoo!

posted by Devin's Mom 9:39 PM

Sunday, November 02, 2003

 

Starving

Devin is convinced we are starving him because he wants food and can't have it. He begged every doctor who came near him to let him have a taco. Poor guy, he just is not a clear fluids diet kinda guy. He turned his cute little nose up at the chicken broth, the red jello and even the chicken noodle soup I brought him. He did sip at some iced tea and I turned a blind eye while he ate a few peanut M&M's.

Tomorrow, he can try something like a milkshake or ice cream. How ironic is it that now he wants to eat, that he can't. He is acting like a stereotypical pregnant woman, asking for all kinds of cravings but then he will eat none of it.

Devin's glucose level sky rocketed overnight again but then was well within the normal range all day. Dr Endocrin (not sure of his actual name) said that based on what they are seeing, this glucose jump is due to the TPN/lipids Devin is getting combined with the prednisone (steriod). There is a whole lotta technical aspects that I could go into but I will just say that Devin is having his glucose tested regularly and will be getting an insulin shot while he gets the TPN/lipids. Dr Endocrin did say that this should go away when he is off the combo he is on.

Devin had a great day today. He got a shower, washed his hair, brushed his teeth really well and then did a good chunk of his homework. Last week he really didn't do any school work since he was feeling pretty miserable. He still has a few days of work to catch up on but he whips through his work very quickly, he is one smart cookie. If you click on the link over to the left that says 11-02, you will see a picture taken today of our dude doing his homework. His science homework was next to him.

He did not look puffy today and Dr Janco, the oncologist up there this weekend, is pleased with his progress.

If we are still there on Tuesday, Devin will be placed in contact isolation due to his clinic exposure to chicken pox. This means that we have to close our door, all staff have to gown and glove to come in and then remove those gowns and gloves when they leave. If we are at home, no special precautions need to be taken but when we go to clinic, we will be placed in a certain room and gowns and gloves will be used. This is being done with ALL the kids who were exposed to the chicken pox. I asked Dr Janco and he said it is a 14 day isolation. Whee.

Overall, Devin looked very good today and felt pretty darn good as well.

posted by Devin's Mom 9:31 PM

Saturday, November 01, 2003

 

Complaining

Devin felt well enough to complain about anything and EVERYTHING! He is feeling very much maligned that he did not get to go out yesterday and all he got to do was "paint a stupid pumpkin!"

Greg pointed out that he could have been like Linus, stuck in a pumpkin patch. Mr Clever had a response, "At leat he had his girlfriend with him!"

The biggest bit of whining came over food. Devin is hungry and wants to eat. He is on total gut rest right now...which means he is not being allowed to eat. He wants roast beef, he wants a taco, he wants an entire cow...anything beef he wants. Tomorrow he can try some chicken noodle soup and maybe some jello.

Devin's glucose level was incredibly high so they had plans to give him insulin. Checks of his blood sugar following the sky high reading have all been normal so nothing is being done right now other than watching it.

His prednisone dose had been tapering off and was every other day. Since this little bump in the road, he is once again on a higher dose of the steriod.

Greg and Nicholas spent the day with Devin. Despite all his complaining today (which is great that he is feeling well enough to be creepy with us!), Devin had a fantastic day.

He is puffy again, apparently he is having fluids leak into surrounding tissue. His feet are swollen and his arm where his second IV was is swollen. That IV was pulled and now he only has his PICC line in. He did begin to get the diluted version of TPN and lipids yesterday.

I know Greg told me what his counts were but I failed to write them down. They were still looking fine although they were down a little from yesterday.

posted by Devin's Mom 11:01 PM

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

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

Sunday, August 31, 2003

 

Fantastic!

I drew some blood from Devin this morning so we could take it up to Vandy for some counts and to check his prograf level. After waiting in a room for 2.5 hours, the word came back that Devin did not need any transfusions and so the boys came on home. I think if we have to do this on a weekend again, we will take the blood up there and come home. If he needs a transfusion, then we will take him back.

It was a very quiet day here, no one did much of anything except things around the house. Following dinner, we loaded up Iain and Kierynn in the double stroller, Devin in the jogging stroller and the others walked as we went out for an evening stroll. Devin enjoyed getting out but when we got back, he was more than ready to go to bed. He was very active today and while he didn't eat a lot, he is at least making the effort of taking some food by mouth.

A family that I spoke to more than a year ago, their son had a transplant in September 2002. We have kept in contact via email and this evening, they were in town and we got the chance to meet them. Joseph is in the area for his 1 year post transplant work up. Go Joseph! We just love to hear of others who had a transplant and are doing so well. One of our hospital friends, Joshua, is gearing up for his transplant.

I made up a medicine basket for Devin. Each evening, I draw up the medicines for the next day, put them in the correct bag and then, when he is due, I just have to grab those syringes. It worked out really well and even though I check before I put them in, I still double check before I give it to him. He has been doing so well, no nausea, no vomiting...just cruising along.

Devin's counts were looking darn good today. WBC 6.2, PCV went to 39!! and his platelets were at 68. Go Devin!

Saturday, August 30, 2003

Zzzzz

Devin wanted to sleep the day away again and was not very happy that we got him up and dressed. Once he was up, he went outside, paddled his feet in the pool and acted like a normal kid. We were told his methodone could make him sleepy and I think that is what it is. He gets it at 10 am and that is when he wanted to sleep rather than get up.

We are so proud of our dude and how he is doing eating. He ate like a champ today. He nibbled on some ramen for lunch and sampled some macaroni and cheese (soy cheese, lactose free cheese and lactose free milk was used. It was actually pretty darn good). He chowed down on some leftovers and ate a few bites of some sherbert. I found some soy chocolate milk for him and he really likes it.

When we were in clinic yesterday, Cassie said we could bump his feeds up a little if we felt he could tolerate it. Over the course of the day, I moved him from 55 cc and hour to 60 cc an hour. He has tolerated it very well and since he has been home, we have had no nausea or vomiting.

In the morning, I have to draw a prograf level and Greg will run down to Vandy with Devin. He will also have counts drawn to see if he needs blood or platelets. Hopefully it will be very quick. If he needs blood, that will take several hours.

posted by Devin's Mom 9:14 AM

Friday, August 29, 2003

 

Sleepy!

Devin did not appreciate me getting him up at 9 am this morning to get a bath and do some school work before heading down to the Clinic this morning.

Before we went to our appointment, he met with the media folks at Vandy. He was filmed talking about his pictures that he took. I have a picture of the process that I will get put up in the next few days.

We made a clinic visit today. Everything looks well even though I forgot to bring his meds to be checked out. He did get platelets today and his prograf level was checked. I drew the blood this morning and brought it up to be checked. His WBC was 8.1, PCV 33 and platetes were low enough to be transfused.

This evening Devin ate dinner! I gave him a small amount and he ate it all. Granted, it was maybe 5 bites but it is a start.

posted by Devin's Mom 10:08 PM

Thursday, August 28, 2003

 

Home, Sweet Home!

It was a rocky road to get here but we are finally home, home, home!! Our Devin is home with us again :)

Greg had to go in for some work related things today so I had Iain and Kierynn with me. We got Devin's meds yesterday so that Greg could fill them while he was at work. That was the plan anyway. As with anything when you are being released, events conspired to trip us up.

Of the 9 drugs he had to pick up, Greg was unable to pick up 3 of them. Two of them we can pick up tomorrow and one of them is not carried. Luckily we can get the one down at Vanderbilt. As soon as he got up to the window in the pharmacy, the computers went down for over an hour and he also had to track down a doctor to get a form signed. :::sigh::: Something that should have taken him maybe 40 minutes ended up taking almost 3 hours.

Things on my end were not a lot better. Since I had wild boy Iain with me, there was not a lot of packing going on. I went down to the Vandy pharmacy to pick up his prograf in liquid form. Cassie, the transplant nurse, had already dropped off the paperwork yesterday so all I had to do was pick it up. That was the plan anyway. An hour down there while tails were being chased since the pharmacy said our insurance didn't allow us the prograf despite Cassie making sure of it. In the end, I got a three day supply. I headed back up to Devin's room, called Cassie and she went to the pharmacy to get the correct dosage AND the one drug we could not get ourselves.

Iain fell asleep while we waited for Greg to show up. Greg finally got up there and we got everything packed. I left with all the kids while he waited to get a schedule of one of the medications we are tapering off.

It was about 4 before we got home and Devin was just so glad to be there. He just perked up and ran around. We left him unhooked from his feedings for a few hours so he could run and play. He ate a few bites of dinner and fell asleep by 9:30, in his own bed :)

His counts were 6.1 WBC, PCV 32 and his platelets were 37. Normally we have transfused at below 30 but that was changed to below 25. He also was taken off the vancamycin.

posted by Devin's Mom 11:14 PM

Wednesday, August 27, 2003

 

Getting Closer!

We are getting closer each passing day to getting out of here. We love the nurses and doctors but want to go home very badly. This morning Devin woke up with a bout of nausea and that worried us that it may derail our potential release tomorrow but Dr Frangoul did not seem overly concerned. He was certainly wanting to know the details and possible causes but didn't feel it would keep us in longer than tomorrow.

We may not have to have the antibiotic when we go home since he only got one positive culture. It depends on what today's cultures look like.

It was a very quiet day here today. Devin slept a good part of the day because he got platelets. It was so hot outside that Devin got ill within just a few moments of being out in the heat. We came back inside and after a short rest, ventured outside his room. This time the destination was the playroom. It is closed between noon and 2 so Devin is allowed in there. We brought his school work in and spent an hour or so doing work and playing with games.

While we were in the playroom, his hospital teacher, Miss Rebecca, stopped by to say hello. One of the media people from Vanderbilt (and I am so bad with names that I can't recall hers!) stopped by looking for some children to use in a promotional video. Devin was recommended by several people so she wanted to know if Devin was willing in and interested. Of course being the ham that he is, he agreed to take pictures and then come back to talk about what he took pictures of. She gave him a camera to take pictures.

His counts today were WBC 5.2, PCV 32 and his platelets were 37.

posted by Devin's Mom 9:56 PM

Tuesday, August 26, 2003

 

School Starts

Devin got one of his fondest wishes granted this morning, he got to sleep in late. I had to take one of the dogs to the vet which meant Greg had to sit with the two little ones (Vet clinic has a no children under 12 policy plus I didn't want to wrangle two kids and 90 lbs of hurting dog). He slept until close to 11 when the physical therapist got him up and took him out walking around. They went down to the first floor, to her office. Devin got 2 big stuffed bears from her. On the way back to his room, they stopped to visit another little guy, Craig, who was recently found to have cancer and is undergoing chemo for the first time. Devin gave one of the bears to him, all on his own with no one prompting him.

Kaity brought home all of Devin's work from school so we spent a few hours today going over it. Devin didn't complain too much about it. Kaity will bring this work back and tomorrow we will do all his work from today.

We are officially looking at a Thursday release date despite Devin's blood coming back for some kind of bug. He was put back on vancamycin today. He was also switched from the IV form of prograf to the pill form. This means all of his meds, barring antibiotics, are being given orally and only his NG feeds are going. He is up to 65cc an hour on those now.

There is not a lot to say for today other than it was a quiet day. Devin did his work while I read a book and played with Kierynn.

His counts were WBC 5.6, PCV 30 and platelets were 37, he did get platelets. Dr Frangoul changed the orders so that Devin only gets blood when his PCV drops below 25 and when his platelets drop below 30. Depending on how Devin does at home, the platelet cut off could potentially be 10 before he gets transfused.

posted by Devin's Mom 10:29 PM

Monday, August 25, 2003

 

Night Owl

Devin has turned into quite a little night owl recently, wanting to stay up late and sleep the day away. He is not very pleased when we turn on lights, open his shades and get him up and into a shower.

We are starting to make the transition from oral medication shot through his NG tube to pills. He took his vefend (antifungal, I believe) in pill form today. I think he is going to his steriod in pill form tomorrow. The TPN/lipids are totally gone! Woo hoo! He is now relying on his NG feeds and the pathetic amount of food he eats himself. His feeds were up to 55 cc an hour today.

It was a very uneventful day with Devin but boring is good! I am having a hard time getting a clear copy of his little radio blurb to record onto the computer. I am going to fiddle with it some more before I put it up. There is no sense in putting up a file where the static over rides what is being said.

Devin got a drum today, brought all the way from Yellowstone Park. Miss Yolanda, one of his nurses, was out there on vacation last week and brought it back for him. He played it over the phone for me since Dad was with him today. He also had a few nurses come in for a concert.

The repeat blood cultures apparently were inconclusive so they were drawn yet again. No new antibiotics were started so it could have just been a lab contamination that caused the gram positive result we got the other day.

Those white blood cells are creeping upwards again, still well within normal though. Today they were at 5.3, his PCV went to 31 so I am expecting that he will get blood tomorrow and his platelets were at 67. I never did hear what his prograf level was today so I am not sure what they are doing with that.

posted by Devin's Mom 9:56 PM

Sunday, August 24, 2003

 

Media Star...no autographs, please

Devin is now officially a media star. His little blurb about his animal shelter and to make a pledge was played several times over the weekend. At the end of the radioathon, the DJs came down to his room to look at his shelter and to talk to him a bit. The producer (at least that is who I think he was) said they would like to have Devin come back next year to provide an update. We said that we would be happy to do that.

We asked when Devin's segment would air again so we could stand by with a tape. We got it and Alex's segments on tape. As soon as I get them on here, I will put them up on a page so you can hear both Devin and Alex.

Since school has started, that means that the siblings won't be able to visit Devin again until the weekend so everyone came up to spend time with brother. During the week, the time just doesn't work out to have them come down for a visit and still leave time for homework and dinner.

Yesterday was his last day of antibiotics...vanamycin and gentamycin so of course today, he got a positive blood culture. It was the first positive for almost 2 weeks. He is being retested even as we speak. All of his medications are now oral except his prograf (antirejection) and solumedral (steriod). His prograf level is still low, it was at 5.1 today. I asked what level they were looking for and the magical number is between 10 and 20. I think once they get that magic number, they will move him off solumedral (IV) to prednisone (oral) and then to oral prograf. I am really hoping he can be released on Thursday, go back for clinic on Friday and home for the weekend but we will see.

Today he was testing negative on blood in his urine...yay! That means looks like the BK virus is running its course. His stoll is still testing positive but from the time it takes to get it to react, it is a small amount. Double yay! He is not actively bleeding as far as we can tell.

It was not a good eating day. He ate a few bites of applesauce, nibbled some cookies and sipped on some gatorade.

I put a new picture up of Devin surrounded by the residents of his shelter. It was taken with a cell phone camera so the quality is not the best around. I am in the process of switching domain names so here is a direct link Devin's Animal Shelter

His counts today were 4.8 WBC, 33 PCV and his platelets were 47 so he was transfused again.

posted by Devin's Mom 10:12 PM

Saturday, August 23, 2003

 

A Monster

That is what we have created here folks, a monster :) A local radio station is holding a pledge drive to help fund the new children's hospital. We were asked if Devin would like to go and be interviewed and then it would air on the radio. Devin, Nicholas and Dad went up to where this was being broadcast and all of them were interviewed. Greg then called me to let me know so I could turn the radio on.

Shortly after, I heard Devin's sweet little voice talking about his Animal Shelter. He then urged people to call in to make donations and stop by with a Beanie for him!! Little mercenary! Later in the evening, I happened to turn the radio on again and caught Alex talking about Devin. Then, of course, the next song was "He ain't heavy, he's my brother"

Devin didn't eat a lot today, just some vanilla wafers but I plan to bring him some scrambled eggs to try out.

His cellcept was switched to oral today. I think the only medications he is still getting IV is gentamycin (last dose today), vancamycin (antibiotic) and prograf. We have really come down in the past few weeks...it is great!

His counts were about the same today. His WBC was 4.4, PCV was 34 and his platelets were at 62. I am hoping to see a rise there but it will likely be a transfusion of platelets tomorrow as well.

posted by Devin's Mom 9:18 PM

Friday, August 22, 2003

 

Another one!

We moved another one of Devin's medication to oral today, it was time for his vefend to go oral. I spoke to Dr Whitlock, who is on this weekend. He said that Devin's meds will be switched as soon as possible but they leave certain ones until the end.

His last medication to go to oral will be his prograf. His prograf level has been bouncing all over the place and they want that stablized before switching him. I am not sure the number that the doctors are looking for but I know that after that incredibly high reading a few days ago, his level has been low. The amount he is getting was increased as well. His TPN/lipids are down to 8 hours a day and his NG feeds are up to 55.

I got him to eat half of a banana and some vanilla wafers today. We attempted some popcorn, minus the hulls but it was too much trouble to get the hulls off.

His WBC was 4.4, PCV 35 and his platelets went to 37 so he got some platelets this morning.

posted by Devin's Mom 10:40 PM

Thursday, August 21, 2003

 

Eating Strike

Devin doesn't really want to eat a lot right now. No matter what we ask about, he pulls a face and says he doesn't want to eat it. He did manage to eat some vanilla wafers and drank some milk. That was all Greg could coax him into eating. His NG feeds are up to 50cc an hour now...slowly working towards the goal of 75. I found some soy cheddar cheese and will be offering that to see if he will eat it.

One more of his medications, acyclovir, was switch to oral today. He is now getting it in liquid form down his NG tube and here at home, we have it in pill form for him. I am not sure which medication will be switched next. He is getting the less important drugs switched first (not really less important but if he can't hold it down orally, it is not as big a deal as some of his other meds) before switching the bigger guns over.

We were very pleased with his counts today. No platelets!! His WBC went to 4.1 (normal), PCV (which stands for Packed Cell Volume) was 35 (normal) and his platelets were 60 (far below normal). I think he will probably get platelets tomorrow though, if they drop.

posted by Devin's Mom 10:01 PM

Wednesday, August 20, 2003

 

Cheese!

While in Wal-Mart this morning picking up lunch for the kids since ALL of us spent the day with Devin, I took a look at the cheese just to see if by some wild chance there was any lactose free. There were two different lactose free American cheese slices!! I got a pack for Devin. Little picky man pronounced it "icky" but I think it was due more to the fact we were outside in the sweltering heat when he tried it and the cheese was very soft. I tried it and the texture and taste was fine. I would not know it was lactose free if I was just eating it. We put the cheese in the fridge and we will try it again. I think he will like it better once the cheese is chilled.

We are starting to make the transition from IV medications back to oral medications. Devin will no longer be getting the protonix (IV for his stomach) but getting the prilosec (oral for his stomach). He has not had a problem with it so hopefully the switch back to oral will go smoothly. His NG feeds were up to 45 cc an hour today with no problems. The goal is to get his rate up to 75cc an hour.

Since Greg had a jump scheduled today (which ultimately was cancelled) I had everyone down visiting Devin. I think he really liked having his siblings there. We went outside, watched a movie, had some popcorn and did very well considering 7 of us were in one small room or a small are for 6 hours. Iain lay down on the other bed and almost went to sleep but didn't quite get there. He did rest for almost an hour and I think that helped him from totally melting down.

Devin did get platelets today but his other numbers are looking good! We are very pleased over all with the progress of our dude and are very anxious to get him home again. WBC 3.3 PCV 37 Platelets 44

posted by Devin's Mom 11:02 PM

Tuesday, August 19, 2003

 

Bone Marrow Draw

Devin had a bone marrow draw today to see what is going on. We got the first results this eveing and everything is looking good. Dr Frangoul is 99.9% certain that there are no signs of leukemia (HOORAY!) but the end results will not be in until the end of the week. Devin is also producing plenty of platelets, which lends credibility to his theory that Devin is breaking down platelets as side result of the cyclosporin. Next week we should get the donor to recipient ratio...that shows the percentage of bone marrow being produced is Ryan's bone marrow (the donor) to Devin's. We would like to see 100%...meaning that Devin's body is producing Ryan's bone marrow.

We also found out today that Devin does NOT have hemmoratic systitus (still no clue on the spelling) but has instead a BK virus in his bladder. There is nothing that we can do for it, it just has to run its course.

His prograf level was low again today so we are not sure what is going on, why he got the high level yesterday, why he is low today but it is being watched.

After his bone marrow draw (with the white medicine), Devin managed to eat half of a boiled egg with no problems. Of course, he was not allowed to eat anything between about 3 am and 2 pm. He did ask for a deviled egg and a banana tomorrow so I will be making some deviled eggs.

His counts today were better, I think. His WBC was up to 3.4 but until we see an upward trend continuing, I won't comment too much. His doctor is not terribly concerned about this since his marrow is working fine, his neutraphils are fine and we did see a rise today. His PCV was at 32 and his platelets started at 71. They were checked in the afternoon and had risen to 73, not a huge climb but no crashing.

posted by Devin's Mom 9:28 PM

Monday, August 18, 2003

 

More Hair!

Devin is getting a headful of dark, dark hair. It is very strange to see since he started life as a blonde and is still very fair. This dark hair will go away and his normal color should return.

We spent a brief moment outside, maybe 10, before it began to rain this afternoon. It was nice out for the incredibly short time we were outside.

Devin got some blood today and after his afternoon blood draw, also got some platelets. His prograf level came back incredibly high so that was stopped for 12 hours so that it could be rechecked. If I understood correctly, when the prograf begins again, it will drop in dosage a little bit. It was almost bizarre to see that for a time, Devin only had his NG feeds (up to 40 cc an hour now) and blood running. The prograf does seem to be working since his biliruben level dropped significantly. Now to work on his crashing counts....

I had mentioned that Devin was seeing some blood in his urine. This is from hemmoratic systitus (no clue if that is spelled anywhere close to correctly) and not an uncommon side effect from cytoxin, one of the drugs he got prior to transplant. Even knowing this, it is rather startling to see up close and personal. He is not in any pain from it and it doesn't seem to bother him at all.

I put up a few new pictures of Devin. The first one you come across was taken today, the others within the last few days. The link is over on the left side of this page.

His counts today were the ever creeping down WBC at 2.9, PCV was at 30 so he recieved blood and his morning platelets were at 62 and took a nosedive to 32 by afternoon. He got platelets for the third day in a row.

posted by Devin's Mom 10:59 PM

Sunday, August 17, 2003

 

Vanilla Wafers and Milk

That was about all that we could coax Devin into eating today. I found a box of mini vanilla wafers and so Devin dipped them into milk to eat them. He did drink a good bit of milk today.

His platelets were not down a lot today but they were rechecked in the afternoon. It dropped below 50 because he got platelets in the early evening. This means he got his beloved benadryl! His methodone is down to twice a day now and he is doing well with it. He really doesn't seem to mind that his dilaudin pump is gone and I know it makes his IV pole a little bit easier to push around.

Devin spent the day with Dad and Nicholas once again. He feels we should put a Gameboy game into his treasure box, so he has something to work for. Ha, little fiend, we know his ways. If there is a game in there, he will throw a fit over something and hope it is used to bribe him. It works out much better to give him a goal to reach for, let him reach it and THEN get the reward. No putting the cart before the horse.

His counts today were WBC 3.3 Greg asked the oncologist working this weekend, Dr Whitlock, about the falling WBC and he thinks it is related to the cyclosporin, that Devin is no longer on. I hope we see that number stablize and climb up some. His PCV was pretty good at 32 although it would not surprise me to see him get blood tomorrow. His platelets started out at 52 and we know that they dropped below 50 in the early evening since he got platelets. His counts tomorrow will reflect that boost.

posted by Devin's Mom 9:09 PM

Saturday, August 16, 2003

 

Good Day

Greg said that Devin had a good day although he wanted to sleep until noon again. He once again got some platelets with the premedicating benadryl so he had reason to be sleepy.

His dilaudin pump is gone! He is still on the methodone but the on demand pain pump is gone and he is doing well without it. He was moved off the cyclosporin and onto the new one (darn it, I need to get the name of it! Edit: Prograf, he is now on prograf rather than cyclosporin) last night. His blood tests did show that his body is breaking down the red blood cells and platelets. Hopefully the new drug will stop his body from doing that and his PCV and platelets will stablize. As long as those platelets can crash like they did yesterday, he can't come home, I don't think. Platelets are what allows your body to clot when you bleed. Without the correct amount of platelets in your body, if you bleed...you could potentially have a serious problem.

Greg and Nicholas spent the day with Devin and are spending the night with him as well. The two boys have been playing with their Gameboys and a remote controlled car Nicholas brought down. A whole bag of various Beanies made thier way home today, clearing a little space in the room. They did go outside for a bit today but again the humidity drove them in. The courtyard gets no air moving in it unless a helicopter is coming in so it gets really miserable, even in the shade.

Devin's counts today were: WBC 3.4, PCV 33 and platelets were 28

posted by Devin's Mom 10:22 PM

Friday, August 15, 2003

 

Sleepy Day

Since Devin got both blood and platelets in the morning, he just wanted to sleep until lunch time. He is still getting the unwashed blood and doing well. That horrific reaction he had prior to his transplant must have been a one time deal.

Although he has some bouts of nausea yesterday, his NG feeds were moved up today and his TPN/lipids were moved down. We are trying to move him from the TPN/lipids to more NG/actual food.

His blood came back negative so that is a good thing although he will be kept on the getamycin and vancamycin for seven to ten more days.

I asked about his platelets and PCV not being very stable and Dr Frangoul thinks there is a possiblity that Devin's body is breaking them down. It is related to the high level of bilirubin in his liver and taking cyclosporin (his immunsuppressive drug). He ordered some blood tests to see if this is happening and also said a bone marrow draw next week could help clarify it. If this is the case, then Devin would taken off the cyclosporin and placed on a cousin drug. It does the same thing but Devin's hair growth would cease on his face. Woo hoo...Dr Frangoul said this drug is popular with teenage girls who are less than thrilled to be growing facial hair. Also, despite initially thinking so, Devin's steriod taper is ceasing. Dr Frangoul doesn't want to risk a set back so the steriods will remain for now and eventually change from solumedral to prednisone. I counted and Devin is currently on: cyclosporin (about to change to the new one that starts with a P but I didn't write down), acyclovir, cellcept, protonix, pepcid, reglan, levoquin (being stopped), methodone, vancamycin, gentamycin and dilaudin. Wow, that is down a slew from just a few weeks ago...I love it!

We went outside where Devin and Kaity, who was spending the day with Devin, colored some little dolls. Devin likes to beat up on some of his stuffed animals and specifically a dollop of Emla. Emla is a cream used to numb the skin prior to injections and blood draws, the company have little dollop of Emla beanies. Poor Emla is forever being beaten up, shoved in a toy box or thrown against a wall. Emla is currently taking a well deserved break, in hiding, at home. Devin asked for a beating up doll so the two kiddos got a blank doll and markers. We sat out in the courtyard while Devin and Kaity made these poor dolls. Each one of them have bleeding wounds, stitches, blood pouring from their eyes, bruises and X eyes. Devin's says "Punch Me" on one side and "Kick Me" on the other. Kaity just did "Punch Me". They are so proud of these dolls, with all the horrible wounds, and gleefully beat them up. After about 30 minutes outside, after he ate some applesauce and colored his abused doll, it was too darn humid and we came inside.

His counts today were: WBC 3.9, PCV 28 and his platelets went screaming down to 18. My grandmother asked so here it is for everyone. WBC is good between 3-11. PCV is good over 30. Platelets are good when they are over 50. Now, this is not always the case for non cancer patients but for Devin, that is what is good.

posted by Devin's Mom 10:06 PM

Thursday, August 14, 2003

 

Animal Shelter

Devin's sign on his door is bringing in stuffed animals in droves. Our little mercenary wanted to advertise that he would Beanie sit for $1 a day but Mom said no way. If the migration into his room gets to be much more, we won't be able to find Devin in the room any more.

Dad and Nicholas spent the day with our dude today. He had a fairly good day, a few bouts of nausea and he was unhooked for a time. The boys looked for bugs out in the courtyard but all in all, Devin just wanted to laze about today.

Dr Frangoul is pleased with Devin's overall progress and actually told Greg that we could celebrate since Devin is doing so well. @@ Wow, what happened there? :::grin:::: He is known for being cautious, we like him that way, so him saying that is really something. Devin is still testing positive on his blood cultures and for blood in his urine but it is no worse than it was yesterday.

He ate some ramen noodles today and sipped on some milk. We looked more into the lactose free cheese but the company wanted $20 to ship it! Ack!! I spoke to my dad in California about it. He found a local store that carries it so Devin will be getting his lactose free cheddar cheese shipped to him by his papa. I have heard of soy cheese as well, not sure how well that is. I know a lot of people who are either vegan or lactose free, guess I will ask them about soy cheese. (Yuck, sure doesn't sound like something I would voluntarily eat myself)

Devin's counts today were: WBC 4.6, PCV 30 and his platelets were at 62. I would be willing to bet that he will get blood tomorrow and possibly platelets.

posted by Devin's Mom 10:52 PM

Wednesday, August 13, 2003

 

Another One Added

The rule is supposed to be that if a new medication is added, one has to be taken away ::::sigh:::: It never seems to work for us though. Devin had methodone added today, to try and get him off the dilaudin. Yesterday one of his blood cultures came back positive so he was started on vancamycin and the cultures were redrawn. Of course, it came back positive again so he is continuing on the vanc. The gram (sp?) positive culture is fairly quick and easy to clear up, if I understood our transplant nurse correctly. Cultures will be drawn daily and once he gets a negative, he will remain on the vanc for another 10 days. We have given vanc at home so that should not stop us if he gets his release papers soon.

Yesterday there was traces of blood in his urine and again today. Devin went down to get an ultrasound of his kidneys and bladder but no clots were found. The lining of his bladder is a little thicker and apparently this condition (can't recall the name and I didn't write it down) is not uncommon in transplant kids or in kids that have had chemo. With all that Devin had gotten, it is little wonder his body is protesting some. This is being watched and his fluids have been increased to help things stay flushed.

He asked me to bring him some tatertots from home so early this morning I baked some (he could only have them baked) and brough them up to him. He did eat a good bit of them. Although he got sick shortly after, it was NOT the tatertots that made him sick. I also brought up some mini vanilla wafers for him. He expressed interest in applesauce so I may send up some of the individual cups. The hospital will provide this for us but Devin turns up his nose at most of the hospital food. He has been drinking his lactose free milk though.

A physical therapist came in today while Kierynn was laying on the bed with Devin. We discovered that the silly girl was just totally enthralled with a slinky. Devin got a plastic slinky out of his treasure box and Kierynn decided it was hers and just kicked and giggled all day when she saw it. Devin went on a jaunt around the floor for PT today and then later, I bullied him out into the courtyard.

Ryan spent the day with us and the two boys hunted for cicaidas {sp} out there. Nicholas found two shells and a live one the other day. Linda, our nurse that day, provided the boys with a specimen cup so we have cicaida shells in Devin's room now. Lovely.

Devin's NG feeds went up to 20 this evening and his TPN/lipids went to 18 hrs a day rather than 24. I am hoping that maybe by the end of next week, he can come home. He has almost as much hair as Kierynn does now and it is just as dark. Where did my little blonde boy go??

I saw his counts today but didn't write them down. His WBC was 4.3, PCV 32 and platelets were 72. If that is not right, they were right about in that area.

posted by Devin's Mom 10:02 PM