Archive for March 2011

March 31st, 2011. Day +20   3 comments

Charlotte had a pretty good night of sleep.  She woke up this morning at about 8:15 and said she was all done sleeping.  Amy and I weren’t!  But we got up with her and watched some quality Disney JR programming and she was quite happy.

Her WBC was up to 1.3 today and she had 507 neutrophils.  Her platelets didn’t drop as much as we thought, but the doctor wanted to give her a bag of them anyway to try to get her face petechial rash to clear up a little bit.  In rounds this morning, they discussed dropping her other antibiotic, but Dr DeSantes was not ready for that until she had three straight days of 500+ neutrophils.  So we can wait on that for a few days yet.  They also lowered her morphine basil to 0.2 and should lower her TPN to 16 hours tomorrow.  Today they took a cyclosporine level test and it was at 253, so they are pleased.  There is also talk about switching her to the oral version of that because it can also be a little hard to get the level just right, so why wait to do that at home when it could be figured out while we’re here…

She had her chest X-ray today, and while we didn’t get the official results from the radiologist, the attending physician thought everything looked properlike.

Our little lefty!

CJ had a few small bouts of coughing throughout the day, I wouldn’t call them fits like she has been having the last few days.  And no vomiting today either.  She did have two poopy diapers (and two yesterday) so we are hoping this is the mucositis also making its way out of her body.  She weighed in at 15 kg.

Since she woke up so early she had a nap at about 2pm and that lasted until Amy woke her up to change her wet diaper around 5:30, but she was still tired so she slept on Amy’s lap in the recliner another hour and a half!!  She was very cute when she woke up and played happily with Amy and me until we got her to sleep around 11:30.  I am guessing she will be sleeping late tomorrow again.

We got one result back from her viral swab today and it was negative.  I am not sure how many more results there will be coming-at least one that we know of,  but we hope they will all be negative!!  It was another darn good day.

Posted March 31, 2011 by L. Elske in Uncategorized

March 30th, 2011. Day +19   3 comments

Charlotte had a pretty rough morning.  She had a few coughing fits that ended up in a little vomiting.  She had a really tough time between 5 and 7am where she just seemed to cough non stop.  But she made it through and slept until almost noon.  When she woke up, she was very happy and playful.  She also clocked in at a not so hefty 14.9kg today-down from 15.4 yesterday.

Her WBC was up to 1.2 this morning, and she had 323 neutrophils.  She had a little petechial rash this morning that lasted the whole day, but the doctors think it might be from her low platelets and last nights coughing fits causing blood vessels to pop in around her mouth and eyes.  The doctors are all still impressed with how she looks otherwise and will probably discontinue the other antibotic she is on or the antifungal medicine tomorrow.  They also reduced her morphine basil to 0.4 and her TPN to run over 18 hours, down from 20 yesterday.

Dr DeSantes stopped in today and seemed pleased with her progress.  He didn’t see any evidence of any GHVD rash, and even mentioned that they may never know if it was GVHD or engraftment sydrome.  But either way, it appears to have cleared up at least for now.  Tomorrow they may consider dropping her steroid dosage down again so we hope it stays away.  He also thinks that her hexaplex test (viral swab) might be back by the end of the week so that would be great.

Amy is teaching her how to blow her nose, and she likes the demonstration.

She had a pretty good day.  Her nose wasn’t too runny most of the day, unless she was doing some coughing.  She started to vomit small amounts in the afternoon with no coughing but the nurses think it is either mucositis making its way out of her or her body reacting to the hours she was not getting TPN.  Our nurse said that it can be common for kids to vomit after the TPN is reduced.  So they put her on zofran every 8 hours to make it better.  She threw up probably five times this afternoon and none since getting the zofran so we hope it continues to help.

She had another good bath tonight and went down to sleep by 9:30.  She started coughing at about 9:45 and ended up doing so until 10:15 when she threw up again (this time most likely because of the coughing).   We got her cleaned up and she is now resting a little more peacefully.  I hope she has a good night of sleep and some good numbers tomorrow too.  Amy and I aren’t yet tired of this place, but we hate to see how accustomed she has gotten to life here.  The nurses frequently have to take her vital signs in the middle of the night and she has gotten so conditioned to the sounds of the bp monitor turning on that she raises her right arm for the blood pressure cuff (she knows it can’t be done in her left arm where her PICC line is), sticks out her index finger for the pulse/ox lead.  Then afterwards raises her arm up again for a temperature reading-all while staying almost completely asleep.  The nurses think it is so cute.  But I think it is a little sad…and also very very cute.

Posted March 30, 2011 by L. Elske in Uncategorized

March 29th, 2011. Day +18   3 comments

We have been here for one month today.  Tonight will make our stay the longest one yet.  We figured it would be, but so far we are doing pretty good with it.  Charlotte slept until about 9:30 this morning.  She

the nurses in their costumes while Amy, CJ and I are just hanging out

woke up well rested and pretty happy.  We hung out in the chair watching TV while Mommy and Daddy alternated showering and breakfasting.  Amy left this morning to meet Grandma E and Molly in Sun Prairie.  Molly had a doctor appointment so Amy took her to that and Grandma E came to visit CJ.  She was happy to see Grandma and was ready to play immediately.  They played for a couple of hours until CJ needed to have a nap.  During that time she was visited by the attending physician and Dr Diamond stopped in to see her too!  They were all happy to see her progress today and actually discontinued one of her antibiotics, the every 4 hour Vancomycin.  So that really made the nurses happy because that one drug kept them pretty busy.  They also agreed to lower her TPN (IV nutrition) to 20 hours per day instead of 24.  Tomorrow they will consider losing another antibiotic if she stays fever-free, then again the next day for the last anti-fungal IV medicine.  Dr Diamond told us that she was on this weekend and even started mentioning maybe thinking about going home sometime next week.  Certainly there is no talk about it soon, but it was good to hear that she is progressing the way they would like her to.  So far it was a pretty good day.  She was happy, active and playing and fun to be around.

nurse L sorting out tubies while Charlotte tires of my picture taking

Her WBC was at 0.9 today, with 243 neutrophils and 15k platelets.  So she got a platelet transfusion today.  Her monocyte count was also up so Dr Diamond thought that was good news.  Then this afternoon, she started to really start coughing with more regularity and her nose started to drip.  I was hesitant to tell the nurses because I know what would happen…they would do a viral swab and place all of us in isolation again.  So the resident came in, and the nurse practitioner, and they talked to Dr DeSantes, and they did a viral swab.  We probably won’t have the results until Monday so we are all stuck in our room again.  Now the nurses and doctors all have to gown up whenever they come in to see her or check on her IV pumps.  Her nose kept running all night, and she kept coughing.  Her temperatures and pulse stayed normal all day.  Though her blood pressures have still been a little on the high side.  They will be checking her cyclosporine levels again tomorrow so we will see what it comes in at.

She had a coughing fit tonight and threw up a bit of mucous all over herself but she recovered nicely.  We had to change her pajamas and then one of the TPN tubes came disconnected…so there was a big commotion trying to get CJ cleaned up, the floor wiped, and the lines replaced all while she was supposed to start sleeping.  But she was a trooper and she settled down easily and her breathing and nasal drippies all seem better already.  Hopefully this will pass quickly and it will be nothing to worry about, and we can start talking about losing medications and further discuss the H word sometime over the weekend.  Today was another darn good day.

On a sadder note, Amy and I had a very rough time emotionally last night after I posted.  While Charlotte slept, Amy had been browsing the obituaries as she regularly does for her job and noticed a familiar name.  One of the patients we knew from here, in fact our neighbor in Charlotte’s first round, died a very short time ago from her cancer.  We had become close to her and her family in our 4 rounds here and she really loved Charlotte and was so sweet to her.  We had been home so long before Charlotte’s transplant that we didn’t know that things had gone poorly for her.  We feel horrible that we never knew it happened, and that we missed her funeral and a chance to talk with her parents again-though we wouldn’t have known what to say.  It reaffirmed the seriousness of the situations Charlotte and all of these kids are in.  It makes everything really really scary again.  We have been so blessed that Charlotte has been doing so well so it is easy to forget just how fragile life is.  I think Amy and I both cried ourselves to sleep.  She was the first patient we knew that has lost her battle to cancer, and we pray she is the last.  She was a beautiful young woman, taken home much too soon.  May she find rest and peace in the hands of the Lord.  And may her family be comforted in His grace.

Posted March 29, 2011 by L. Elske in Uncategorized

March 28th, 2011. Day +17   8 comments

Charlotte again slept until almost 1pm, until we had to wake her up to get her weight-which was good-down to 15.6 kg.  She was happy when we got her up and watched some TV for a little while before wanting to play on the couch.

Her WBC was up to 0.8 today, and she had 288 neutrophils.  Her platelets were down to 28k, but her hemoglobin went up again from 9.7 to 9.8 by itself.  Her cyclosporine levels were high again this morning (303) so they adjusted her dosage this afternoon.  They also lowered her steroid dose too and will watch her rash to see if it gets any worse with the smaller amounts.  The attending doctors and nurses today said they were impressed with how great she looked!  She had a couple of goldfish and a little bit of water today too.

She had some extra tubie free time because her IV tubes had to be changed so we celebrated by walking around the hall for 45 minutes.  She took another long bath after a good poopy diaper, and she hated to leave the tub.  I think she was in there for almost an hour and a half!

Her blood pressure readings this evening were getting pretty high again (151/111, 133/89) so I hope it is related to the cyclosporine levels and nothing else.  Her temperature and pulse have been normal all day so we aren’t sure what is going on.  Tomorrow she will get her IVIG and bi-weekly Pentamidine and she may need platelets as well.  Today was one really swell day and I hope this trend continues.

On another positive note, Alexis is out of the ICU after another long two weeks!  I hope she and her parents can get some good rest.


Posted March 28, 2011 by L. Elske in Uncategorized

March 27th, 2011. Day +16   11 comments

sleeping in style with her favorite bracelets

Our little Charlotte is becoming a teenager.  She slept until 2pm today.  She even went down really nicely for us by 8:30 last night.  She slept very well and even gave us a few nice wet diapers in the very early morning without any lasix on board.  She woke up very happy and was weighed right away.  She was down to 15.9kg without lasix all day yesterday so we think that is a good sign.

Charlotte’s body was busy over the night.  Her CBC numbers this morning showed lots of promise.  She was at 0.5 WBC and even showed 190 neutrophils.  Her hemoglobin was up a little bit and she got a huge boost from her platelets yesterday.  She went from 15K to 44k-all of her other post-transplant transfusions only resulted in a gain of 10-15k.  The tests that reflect her kidney functions are still looking good, even better with no lasix in her system.  Her blood pressures have been pretty high the last couple of days, even for an Elske, but this morning we found out her cyclosporine levels were about twice what we wanted them to be-395 instead of around 200, and high BP is a common side effect so they cut back on that dose as well.  Her evening vitals were better already.

sorting through (playing with) Hero Beads

The attending physician stopped by when CJ was in a good mood so she was able to get a full examination done.  Dr Puccetti was very pleased with how she is looking.  She thinks her swelling has improved and her rash has gotten better.  She also likes what she sees in the CBC results.  And she has been on since Monday, so she has seen CJ when things were not going so well.  There is even talk about starting to decrease the dose of her steriods soon.  This is all pretty darn good news.  Amy also noticed this afternoon that CJ’s morphine pump was showing 0.6.  She had been at 0.8 most of last week.  We tried to drop her to 0.6 on Friday but she woke up with stomach pains so we put it back to 0.8.  But the nurse said today that it has been at 0.6 since at least last night…it may have been longer than that.  But the good news is that Charlotte appears to be doing just fine at 0.6.  This is one more thing that we will eventually need to cut out so every little bit helps.

Charlotte stayed happy all day.  We weren’t able to get any hall time in, but she spent a little time playing and coloring on the couch.  Out of the blue, she asked for a purple sucker today and I happened to find one at the desk of the restaurant from where I picked up dinner.  So she happily opened it and had a few licks, reminiscent of Mr Owl and his Tootsie Pop.  Then, true to teenager form, at 8pm she started really waking up.  She also started talking quite a bit.  She has been very hoarse the last several days so she has not said more than a few words at a time, but tonight she was talking like nothing had ever happened.  She still sounded sore, but she must not have felt it…she was just gabbing away.  She had a few sips of water and even said a word we did not expect to hear any time soon-“Swack”.  Loosely translated into “Snack”, I rushed into action trying to figure out what she might want to eat.  She said yes to some mac and cheese so I made a little cup.  She was not interested when I came back so I thought the moment had passed.  But she still said she wanted something to eat.  She settled for a few bites of Special K in milk.  She didn’t eat much, but she sure tried and that made us very happy!

She had a great time coloring again at the end of the night and she brought out her famous wiggle butt and wanted to share in a few family hugs.  I don’t know how many times Amy and I choked back tears tonight.  She was so cute, and she must have been feeling so good.  We got her to sleep around 11, and we hope she rests well and is ready to play again tomorrow!  We are anxious for this week for maybe Dr DeSantes and Dr Diamond to come back and take a look at her.  We hope they too will be pleased with her progress.  Thank you to everyone for your prayers.  We have a long way to go, but today was one helluva great day.

Here she is talking and playing with her Hero Beads:

Posted March 27, 2011 by L. Elske in Uncategorized

March 26th, 2011. Day +15   4 comments

Charlotte slept until 1pm again today and woke up happy.  She was ready to watch some TV and hang out in the recliner.  Her rash seemed a little better today, not quite as bright red around her face, the swelling around her eyes decreased, and some of the body rash on her legs went away for a little while.  The attending physician stopped by while Charlotte was up and was pretty pleased with how she looked.  The Dr also thought her rash was a little better. Today CJ was up to 16.0 kg, so up another pound, but the Dr didn’t seem that worried about it yet so we will try not to as well.

We hung out in the room, playing with the iPad and coloring books.  She said she wanted to go walk the hall, but by the time another patient went back into his room (only one patient allowed in the hall at a time), she had lost interest.  So we kept playing and watching TV.  She took another long bath, probably over an hour, and didn’t want to get out.  Her rash sort of came back after that, but that is pretty common for hers to come and go and change appearance throughout the day.  She got her PICC line dressing changed today and Mommy and I cleaned the room and tidied up some of her toys and things.  We got a couple of loads of wash done, and just had a nice time in the room.

Molly in the kitchen watching Grandma cook!

Her WBC count was at 0.4 today, and she had a platelet transfusion before she even woke up.  Her diaper area is continuing to improve and we hope she starts making some good numbers of white cells so she can start healing her mucositis and then get to feeling better.  She didn’t mention any owies today or have any moments of obvious pain.  So we are hoping she is on the mend a little bit.

I realize that I haven’t been updating the blog with any information about Molly.  Both of our parents are watching Molly while Amy and I stay in the hospital with CJ.  My mom and dad have been watching her for the last few weeks and soon she will be spending some quality time with Amy’s parents.  I know they are looking forward to it, and I know my mom will miss her.  She has been growing like a huge Elske weed.  She is up to almost 16lbs and is already in 6-9 month/9month clothes.  She is just like me-she loves to eat!!  She is still waking up once or twice during most nights so she is keeping the Grandmas on their toes!  Amy and I are still able to see her at least once a week so we can spend some time with her.  Amy’s parents have been watching Broadway since last fall.  We don’t get to see him as much, but we know that he is very happy with Grandpa W and his big yard to run around in!

We are so thankful for their help and know that between AFCH, and our parents, our little ones are in the best of hands!

Posted March 26, 2011 by L. Elske in Uncategorized

March 25th, 2011. Day +14   3 comments

This morning in rounds we did agree to lower Charlotte’s morphine basil to 0.6 from 0.8 to improve her eye itching.  She slept until 1pm, but woke up with some stomach pain.  It was just like before we started the morphine.  She was just crying and said “Tummy hurt”.  So a few doctors came to take a look at her and they ordered an X-ray.  Since she had not pooped since Wed, everyone assumed that was the problem.  We asked her if she needed to go and she insisted she did not.  Amy convinced the doctors to increase the basil level again.  Within 10 minutes she was unhooked (because the nurse had to change out her IV tubes) and playing outside in the hall.  She tried the old soccer run and kick game, but she was a bit slower than usual.  Still, it was very exciting to see her happy and so energetic.  She tuckered out pretty quickly, but was happy to stay in the hall and watch Amy and I play under her direction.  She also wanted Amy to go back in her room to get a puzzle so we could hide the pieces in the hall like we had done in the previous rounds.  She had a good time doing that too.  While we were in the hall, the resident came back and said that her x-ray looked good.  One load off our minds. 🙂

When we were done playing she came back in the room and watched some TV.  We were able to get her into a bath late this afternoon and she seemed happy to do it.  She played and had a little fun then after about half an hour she cried pretty hard and loud.  She ended up having a poop and was not happy about it.  We cleaned her up and she was getting tired and sleepy.  The nurse had just given her a new medicine (nubain) to make her eyes feel better and it can cause drowsiness.  Minutes later we were changing her biopsy bandages and noticed she had another very watery poop.  This is usually not a very good sign.  Watery stools can be evidence of GVHD of the gut, something we obviously do not want to see now.  It could still be mucositis or a result of TPN and buckets of fluids every minute of the day.  We will just have to monitor future diapers and see how often it happens.

Her WBC was again at 0.3.  She did not get any platelet or blood transfusions today.  Most likely tomorrow she will need platelets again.  Her vital signs looked good all day, and had no high temperatures.  Her rash is a bit better today and she is a little less irritated by her itching eyes.  We hope she sleeps well and she has no more signs of the watery stools, or that the doctors don’t get worried that much.

Here is a little bit of her playing soccer this afternoon…

Posted March 25, 2011 by L. Elske in Uncategorized