A Day in the Life of Devin
Just a short little page to update family and friends on Devin's progress while undergoing treatment for a relapse of leukemia and his second bone marrow transplant. Devin is currently in remission and we plan to keep him there FOREVER!
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Next Clinic Appointment:January 15, 2008
Devin's mood today was:
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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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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
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.
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.
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.
Tuesday, August 12, 2003
Unhooked!
Devin got to be totally unhooked today for about 30 minutes. He made the most of it by going outside and running around some. Usually if he is unhooked, it is just to take a shower. Greg said that Devin and Nicholas had a great day today.
He was not very interested in eating today but did sip some milk and made an attempt at a piece of toast. We got the green light to try some ramen noodles so we will see how that goes. Since he has his NG tube back in, he was started on half strength Vivanex yesterday. We started him at 5cc an hour, an incredibly slow rate but we want to make sure that his stomach can tolerate it.
Devin is still complaining of stomach pain and we saw some pain management doctors today. They think there is the possibility that Devin is addicted to his pain medication. The plan is start him on some methadone to wean him off his medication. He has been complaining steadily in order to get benadryl and there is a NO BENADRYL order in (barring getting blood products). Devin will only get it if he is about to get blood products, like today.
His counts dropped a bit so he did get blood and platelets today. His counts were WBC 4.3, 26 PCV and 42 for platelets.
Monday, August 11, 2003
BRAT
Today Devin spent some time out in the outdoor courtyard. We knew it was coming and he had his NG tube placed back in today. He was not very pleased about it but accepted it with minimal fuss.
Since it was a gorgeous day, we took his lunch tray outside to eat. He had on his lunch tray: mashed potatoes (plain), spaghetti noodles (plain), pretzels, a dinner roll and then some gatorade and lactose free milk. Mr Devin turned his nose up at it all but I did manage to coax him into eating 1/3 of the noodles. I asked him if he wanted me to put some salt on them, he watched me do it and THEN told me he didn't want salt. He got to have a small piece of cotton candy but it didn't really sit well with him. For dinner, he ate maybe 1/3 a piece of bread with some butter on it. He also nibbled on a few animal crackers and drank milk today.
While we were outside, I was idly looking at his tray. Devin was very insulted when I pointed to the slip that comes with his food and said "Devin, look! They know you, it says right here BRAT! It is even highlighted!" I then explained to him that BRAT was referring to his food (Bananas, Rice, Applesauce, Tea) rather than to him.
Devin has been gaining more and more stuffed animals all the time. It has gotten to the point where they are obscuring the light in his room so I rearranged the animals so we can actually see in there again. Devin had me make a sign for his door, for Devin's No Kill Animal Shelter. Devin's shelter accepts all unwanted Beanies, Dogs and Stuffed Animals and will provide them with a loving home. We came in with 1 stuffed animal, Wart. I shudder to think how many we are going to be bringing home with us.
His counts today were: WBC 4.9 I asked his nurse about his WBC and she thinks they are going to stablize soon and that we are just seeing after effects of the infection he had. His PCV was at 30 so I am anticipating blood tomorrow and his platelets were at 73.
Sunday, August 10, 2003
Thirty Days
It has now been 30 days since Devin was admitted....which is about 25 more days than we had anticipated. This is not our longest stay, we are almost 2 weeks from that. Devin's initial hospitalization in 2001 lasted 42 days.
Greg and Ryan had spent the night with Devin and in the wee hours of the morning, Greg got hit with something. He got back home around noon and spent the rest of the day in bed. Nicholas and Kaity have the same thing and Kierynn has been fussy. We think it is the same thing that hit us all back in February. Iain and I had one day of feeling icky and bounced right back. So far only Ryan has not been hit with it. Devin is on so many antibiotics that we are hoping he doesn't get it. As soon as Greg realized he was not feeling good, he got away from Devin and Kristen spent most of the day and the evening with our dude.
Devin was complaining of stomach pains again today but when I when actually engage him in conversation, there was no mention of it. He ate several vanilla wafers and drank some lactose free milk. I am really going to try to coax him to eat some noodles or applesauce tomorrow.
His platelets dropped so he did get a transfusion this morning. His counts were 6.0 WBC. I am not sure why these are dropping or if I should be concerned. They are well within the normal range for WBC (4-11) so I guess I will just ask about it. His PCV was 31 and platelets were 31. The platelets should show a rise tomorrow from the transfusion.
Saturday, August 09, 2003
More of the Same
Not much is going on with Devin at the moment. He is still complaining of stomach pains but we think it is more a ploy to get benadryl than actual pain. The little fiend wants that benadryl even though it is not for stomach pain.
He did eat a few animal crackers today for his dad. Greg spent the day with Devin and they took a jaunt outside for a bit. Even when Devin says he doesn't want to go outside, we get him up and out. It just does everyone good to get out in the fresh air, if only for a brief time.
Greg and Ryan are spending the evening with Devin tonight so it will be boys night down at Vandy. His counts today were: WBC 6.9 PVC 34 and platelets were at 72
Friday, August 08, 2003
Unibrow!
Not only did Deving get some platelets this morning, he also got some blood. That was the only time today that he got benadryl, which is good! Since he has not been having his platelets washed and has not reacted to them, it was decided to try giving him unwashed blood. If you are a regular reader, you will remember he had a spectacular reaction to blood a few months ago and since that time, has only gotten blood that has been put through a special washing process. His nurse, Tracy, stayed with Devin for 30 minutes and he was doing fine. He did start a small temp (99.3) so she turned the blood down and gave him some tylenol. He was fine (97.8) when his temp was rechecked so the blood went back up to full speed and finished with no problems.
Yesterday he was taken off flagal so we are slowly weaning down the medications. There is now a good portion of the day where all Devin is getting is his TPN/lipids. I am hoping to switch him back to his oral meds soon. When I was getting him into a shower this afternoon, I noticed only 2 of his lines were actually being used. Woo hoo! Speaking of showers, I was drying him off and teased him that I should snap a nekkid picture of him. He immediately said, "No! You will put it on the web page for everyone to see!" I promised I would not (not that I really was going to take the picture). I do want to get a picture of the spectacular bruise that is on his chest from where his other Hickman line was removed. We have no idea why he bruised so badly but it is something to see. I will put a squeamish alert for those who may not want to view it.
It is the overall feeling that yesterday's vomiting following eating noodles was more a case of eating too much, too soon and too quickly. Today, Devin nibbled on a single serving bowl of Cheerios and sipped on some Gatorade. He did request some blue Gatorade and our awesome nurse got it for him. Even better, one of the readers of Devin's page (Hi Meg!) sent me a link to :::fanfare please!::: Lactose Free Cheese!! Yes, it is made and apparently this is the only company that does it. Once our dude can have cheese, you bet we will be ordering him some. The choice is limited to mozzarella, cheddar and jalapeno jack but you know, cheddar works for us.
Nicholas spent the day with Devin and we went out and enjoyed the outside for about an hour. The boys played on the castle outside, kicked a ball and threw a stick all over the place. I cleaned out the diaper bag, the stroller and my purse. It has long been a habit of mine to toss a pacifier in the bag, stroller or purse when I find one. We have been having a problem finding a pacifier in the house and Iain will not go to bed without one. Well, now I know why there are none in the house...they were all in my purse, the diaper bag and the stroller. I found (are you ready?) TWENTY FOUR!!
One of the side effects of the medications Devin is on is increased hair growth. Devin has a fine layer of hair on his face. He was feeling his face and actually announced with delight "Mom, I am growing a unibrow!" I pointed out that although he could feel the hair growing between his dark, dark eyebrows, no one can see the connection part because it is so light colored. Another effect of the meds is the dark, dark eyebrows. I was expecting it this time around. During Devin's first transplant he came in from playing outside when I noticed the dark brows. I had him get me a washcloth so I could wipe the sweaty dirt off his face....except they were eyebrows, not dirt! The facial hair and the dark brows will go back to normal when he comes off the meds.
His counts today were: WBC 7.2, PCV dropped to 29 and his platelets dropped to 46.
Thursday, August 07, 2003
A Little More
Devin did well with his two saltines today so had him trying a few more things. He ate 2 more saltines, some apple juice and even some cheerios. He ate almost an entire bowl of noodles but apparently that was too much and what went down soon came up. Cassie, the transplant nurse, said this is not uncommon since his stomach has shrunk and he has not eaten in a month. She is pleased with his progress.
Dr Frangoul would like to see him tolerate more foods and oral medications before he can come home. Devin wants to eat, just not really the foods listed on his sheet of allowed foods. One thing that is listed is white bread. We normally use wheat bread and the kids are forever nagging me to get "Bunny Bread" at the store. Bunny Bread is just a brand of bread so Devin will get a loaf of white Bunny Bread. Hopefully he will actually eat it. He can have some limited amounts of butter to spruce it up a bit. He can have lactose free milk and it was ordered for him, just had not gotten there today.
His Aunt and cousins visited him again today. They left this afternoon to attend a wedding and then head back home to Colorado. Devin really enjoyed visiting with them and spent a few hours outside while they were there.
After everyone left, his brother Ryan spent the rest of the day with Dad and Devin. The two boys played gameboys and talked up a storm. It really helps Devin out when we can have one of his siblings...one of the boys by Devin's preference although we bring his sister as well...with him to spend the day.
We saw some good news today for a hospital friend. Devin has been exchanging notes with another young man down the hall, Joshua. Josh and his family just found a perfect bone marrow match for him so Josh should be getting a transplant soon. This is fantastic news for his family. Devin has always liked Josh and frequently tells me of late night pole races that Josh and Nurse Anthony would have in the hall ways.
I saw his counts today and Greg sent them to me via an instant message but I failed to write them down. I believe his WBC was 9.0, PCV was 31 and platelets were 63. Edit: These were revised and are the correct counts for the day.
Wednesday, August 06, 2003
2 Saltines!!
Okay, so it is not much but it is the first real food Devin has had in over a month. Dr Frangoul brought in a list of foods that Devin can try and work up from.
He turned his nose up at the noodles but did eat 2 saltine crackers and a few sips of gatorade. He would really like some cheese but there is no lactose free cheese to be found anywhere. Even beyond that, he has to tolerate really bland stuff before we can move onward.
That was the most exciting thing to occur to day. He spent time outside, as he has done each day since we have been able to take him outside. He complains the entire time we are going out but once there, he enjoys himself. The fresh air does him good.
His WBC were 10.2, PCV 32 and platelets were 68
Tuesday, August 05, 2003
Gameboy SP!
Devin was just in heaven because his Aunt Missy got him a Gameboy SP. This is the newest version of a Gamboy, with a rechargable battery and a built in light. He also got a new game (a Zelda game) so was in Nintendo overload. It is not like were were Gameboy-poor. I counted and we currently have: 3 Gameboy Pockets (blue, silver and green), 5 Gameboy Colors (pink, yellow, lime green, turquoise and blue), 3 Gameboy Advances (white, silver, clear) and now Aunt Missy has infused the household with 5 Gameboy SPs.
If all goes well, we will try in the next few days to have Devin eat some actual food. Once he can tolerate some food, we will start switching his meds back to oral and think about release.
Today was the visitation for our little friend Eliana. Devin asked me if we could find her favorite book to donate, with her name on it, so people would read it and think of her. Awwww!
His counts were WBC 11.9, no clue what his PCV was but his platelets were 100.
Monday, August 04, 2003
Forward Moving
We are still moving forward. Devin is continuing to make small steps forward rather than making any backwards. He had a very quiet day, not much going on. If he continues to do well, later in the week we will get him to try to eat some actual food.
There is not a lot to report on since not much is really going on with him at the moment.
His counts were: 11.2 WBC, 29 PCV and he did get soem blood and his platelets were at 110.
Sunday, August 03, 2003
Aunt, Cousins and Siblings...oh my!
Devin got to meet his three cousins and his aunt today. He has always heard us speak of them but between our family being overseas or her family being overseas, we have not seen one another in ages.
Greg went to spend the day with Devin and the rest of us followed along. Since Devin can go outside, we met him out in the outdoor play area and had a visit. Devin was getting platelets at the time and he also is no longer getting his caspofungin. He did get a bit snitty over his cousins not sitting to talk to him but running around playing. We did get some nice pictures of the collective group, which I will get up on his page within the next few days.
His counts for the day were WBC 11.3 PCV was 33 and his platelets were at 52 so he got some this morning.
Saturday, August 02, 2003
Devin had a very uneventful day today. Greg spent the day down with him since my sister and her children were due in to visit for the week. She recently lost her husband in Iraq and this is the first time we have seen each other since 1995.
Devin is going to the bathroom less with each passing day, which is a good thing! We are really hoping that he will turn the corner soon and be ready to come home.
I am in the process of adding the pictures and the links over to the left are working. I am going to be resizing things on the Devin picture page as well as adding older pictures. Newer pictures will always be near the top.
Friday, August 01, 2003
Gweat!
Devin was feeling great today. He was up and bouncy and just was being Devin. He doesn't like to look at himself in the mirror because of how he looks. The steriods and other medications have made him retain fluid so he is very puffy looking. Our little string bean who weighed 48 lbs on July 10 now weighs over 60! All of it should go away once he is off these medications.
Dr Frangoul is very pleased with Devin's progress and is amazed at how well he is doing on the ATG. Generally kids get much sicker than Devin has been. Considering how sick Devin was, his progress is remarkable. We have one more dose of ATG tomorrow and then hopefully we can look at coming home. Dr Frangoul also gave Devin some very exciting news today. Devin gets to go outside!!
Right outside our window is an outdoor play area. When it is not crowed, we can take him out there masked and keep him away from any other children. After nearly a month inside the same room, our boy is going to get fresh air. He said we can keep him out there as long as Devin likes. It will do him so much good to get out and get some air.
We are still looking at 10-14 days before Devin is allowed to try food again. For several month, he will be on a very bland, easy to digest diet. We should be getting a list of foods that he can eat. We don't want anything to jeopardize his current recovery.
I got some pictures of Devin yesterday, I will put a few up so you can see our puffy boy. His counts today were: WBC 13.0, PCV 30 and platelets 90.
