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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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!
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"
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.
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.
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
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.
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.
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.
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.
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.
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!
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.
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.
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!
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.
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.
