raising ladybug

parenting a unique child in a complex world

Another Dose of Remicade

Apr 7, 2011 by Daddy

Last week, Adela got her next dose of Remicade, the medicine that helps keep her Crohn’s in check.  We actually were supposed to get it last Tuesday, but after getting to the hospital, the nurse and the doctor decided Adela needed to wait for a few days because of a cough she had. It was very frustrating, but we understand why we needed to wait.  As they explained it, Remicade suppresses the immune system and if Adela’s developing a cold, you don’t want to mess with the immune system.  It was just a little frustrating since Adela tends to get anxious about going in and getting the IV and we had been working up to the appointment for a week getting her ready for it.  Plus, I’ve taken the day off work and we’ve canceled the sitter for the afternoon.  So, we rescheduled for Friday and, while her cough wasn’t much better, it wasn’t much worse either.  That, combined with the fact that she was prescribed some antibiotics just in case it turned out to be something, satisfied the doctor enough to go ahead with the infusion.

Despite all the scheduling issues, the Remicade really does wonders for her.  We’ve stopped the secondary medication that we started last time (6-MP) because we’re convinced that it’s what caused the pancreatitis.  It’s a known, yet rare, side effect of 6-MP and the description of the onset of symptoms fit Adela’s symptoms to a tee.  I don’t think the doctor is convinced, but we told her that we wanted to try Adela off the 6-MP for an infusion or two since they’re giving her the Remicade at a higher dose now.

From a family fun perspective, Adela is really enjoying the warmer weather and enjoys getting outside to play.  We’re going to finish off the backyard project we started last year so she’ll have a nice place to play.  We unfortunately had to say “bye-bye” to her cousins who have just moved to American Samoa since their daddy (Mommy’s brother) took a job as a park ranger there.  Adela enjoyed the few play dates they had together and I think she’ll enjoy it even more when they’re older.

Back Home and Feeling Great

Mar 17, 2011 by Daddy

After a few long days (and nights) over at the hospital, we’re back home.  Adela is feeling much better and, looking at her, you wouldn’t think she was ever sick.

Turns out it was the urinary tract infection that was causing most of the problems.  While at the hospital, she had some medicine that was especially for the pain caused by UTIs and that stopped the pain within half a day.  After that, it was just a matter of giving the antibiotics time to work on the infection.  She’ll keep on the antibiotics here at home for a week and a half and then, should have a clean bill of health.

She was very excited to be able to eat and drink starting Tuesday afternoon since she had not been allowed to have anything for a few days.  She started off with her pretzel sticks and, Wednesday after we got home, she tried some chicken.  Everything is setting well in her tummy and she’s back on her nightly regiment of Elecare as well.  I think she’s just happy to not be hungry at this point.

Back in the hospital for a few days

Mar 14, 2011 by Daddy

Unfortunately, we’re back in the hospital again, however hopefully not for long.  On Friday, we headed over to visit Gramma and Grumpa and all was well until about bedtime.  That’s when she started having quite bad stomach pains.  After several hours and an extra dose of steroids (since we were thinking it was a Crohn’s flare), she was finally able to fall asleep (or pass out from exhaustion, depending on how you look at it).  The next morning, she was back to her normal self — just as happy and energetic as could be.  But by mid-afternoon, we were back in the same place with quite a bit of cramping.  So, after talking with the GI doctor, we decided to head over to UNC to be admitted.

Admission went smoothly and we came up to our room right away.  Adela was lucky enough to have one of her favorite nurses Saturday afternoon — Ashley.  After a rough time trying to get an IV (two unsuccessful tries before the PICU team was called to put it in) and more pain, we all finally fell asleep at about 1:00 AM.  Sunday morning Adela felt OK and we went to get an abdominal ultrasound.  That afternoon, the doctor told us based on the various tests, it looks like she has a urinary tract infection and a mild case of pancreatitis.  She did have another rough night falling asleep (it took three tries with morphine to cut the pain enough that she could fall asleep).

For the infection she’s getting antibiotics.  That should clear things up in a few days.  For pancreatitis, the only treatment is to manage the pain, avoid eating or drinking anything, and staying hydrated with IV fluids.  The not eating part is upsetting her quite a bit since she’s obviously hungry and doesn’t understand why keeping her from eating will help her feel better.  The lab results from this morning show that the pancreatitis is already improving and we can tell that she’s not in quite as much pain today.  Assuming that she responds well to the medicine for the UTI, we’re hoping that we’ll be out in a few days — maybe even by Wednesday.

Say Aaahhh…

Mar 7, 2011 by Daddy

Adela had a busy week last week.  A visit to the dentist, a visit to the endocrinologist, and a play date.

Mommy and Adela visited her dentist on Tuesday over at UNC.  To make a long story short, she has great teeth.  Adela was very cooperative (even happy) and let her dentist check and brush her teeth.  Afterward, she got to pick out a little prize from their toy box — a purple elephant bath toy which is now named “Hello Elephant” (as in “Hello Kitty”).  All together, in and out within about thirty minutes.

The visit to the endocrinologist took a bit longer, but went well.  There were no specific issues that either we or the doctors had…this was more of just a follow-up.  We actually met with a different doctor than usual (our regular one was unexpectedly out), however we really liked him.  We talked about Adela’s past issues, how her Crones disease will affect her, and what we can do going forward.  She has been putting on consistent height growth after starting her Crones treatment; it’s not a lot overall, but the importance is that it’s consistent.  For helping with growth issues, the only real “medical” treatment is growth hormone, which Mommy and I are still a bit hesitant about after our previous experience with it, however we’ll make a decision soon about how we want to proceed.  It’s also important to make sure she get the right nutrition (already there with the Elecare) since sometimes her intestines may not be absorbing the nutrients as well.  We did have to get a blood draw, but we were in and out of the lab within five minutes, so it wasn’t too bad.

On Friday, Adela hosted a play date for her cousins.  They all had a wonderful time and Adela was (if you can believe it) both thoroughly wound-up and exhausted by the end of the day.  She’s looking forward to having them over again next Friday, too.  They have to get the fun in now since two of the cousins are moving in about a month to American Samoa since their daddy is going to be a US Park Ranger there.

This weekend, we officially started the garden for this year by planting our potatoes.  Later this week, the carrots and peas will start growing inside and get moved out in about a week.  Here’s looking forward to plenty of fruits and veggies.

A Long Overdue Update

Feb 26, 2011 by Daddy

It’s been a few months since we last posted an update.  With Christmas, the new year, and my getting a new job, I seem to have been able to find quite a few excuses to put off writing a new post.  However, I know many people are eager to hear how Adela has been doing, so here we go…

Adela had an absolutely wonderful Christmas.  We visited Nana and Grandaddy before Christmas, had our annual carriage ride around downtown New Bern and attended the Broughton Christmas party.  We came back home for Christmas and was treated to a beautiful white Christmas, but not before getting in a visit to Gramma and Grumpa’s house to see the Caruso side of the family.  To see our house after the influx of gifts from family and Santa, you would have thought a tornado plowed through a toy store and dropped everything in our living room.  Needless to say, Adela was quite excited to have received such a nice selection of toys, books and clothes.

We went in for Adela’s Remicade a few days early in January since she started showing signs that it was wearing off.  We actually were admitted to the hospital on Sunday since she was so uncomfortable just so we could get the Remicade infusion.  While there, we got to see some of the same nurses that we got to know at the end of last year.  The combination of Remicade and steroids helped her to feel much better within a few days.

At the end of January, Mommy took a weekend off and went to Charlotte for a few days of retail therapy with Gramma.  This is actually the first time that Mommy has spent the night away from Adela since she had been born.  To ensure that Adela didn’t worry too much about the missing Mommy, we had Nana and Grandaddy come up to visit and for a special surprise.  We went to see a Thomas the Train musical at Raleigh Memorial.  Adela had a ridiculously wonderful time.  I only spent about half the time watching the show…the rest of the time, I was watching Adela be so excited about the show.

Mid-February brought both Mommy’s birthday and Valentine’s Day.  We had a birthday party for Mommy for which Adela was responsible for helping both make the cake and decorate.  Adela did an excellent job of helping me bake a cake from scratch, directing me where to hang the streamers, and accompanying me to the grocery store to inflate a car-load of balloons.  She got to spend time with Nina, Sabine, and Simone at the party, so she was happy.

Mid-February also meant Remcade time again…six weeks from the last infusion.  This time, about a week before she was due, the effects wore off.  She did OK dealing with it, but it did mean being much more uncomfortable from a potty perspective, more reflux, and loss of appetite.  This time for our appointment, we chose to go to the “infusion clinic”…basically an outpatient infusion room at the hospital.  We aren’t actually admitted for this, so it takes a bit less time.  We were still there from about 8:30 AM until about 1:00 PM, but that’s a bit better than being fully admitted or going through the “short-stay” unit.  To help Adela not be quite so anxious about putting in the IV, she got a little dose of Versed to help her relax.  While we have in the past gone to great lengths to both understand and minimize any anesthesia she receives, I have to say, this time, it was well worth it.  In January, getting an IV started required two nurses and Mommy and Daddy pinning her down while a third nurse started the IV…to say it was unpleasant would be a massive understatement.  This time, however, all that was needed was Mommy holding her shoulder still while the one nurse started the IV.  She stayed awake the whole time but was just a bit calmer and more relaxed.  This time, with the Remicade wearing off a bit sooner than expected, changes were made to her medications.  She’s now getting a more potent dose of Remicade and is on a new medicine called 6-MP that will help the Remicade be more effective.  We have a plan for slowly stepping her down off the steroids with 6-MP taking their place as the secondary medicine.  As with last time, a few days afterward, she has enough energy to be bouncing off the walls.

The following weekend, we visited New Bern for a Broughton family reunion.  Adela visited for a little while with Granny and Papa as well as a few other family members and had an excellent time.  She got to watch Ice Age with Uncle David and Ms. Brandi (their special treat that’s saved only for New Bern).

Adela has a new friend that comes to play with her most weekday afternoons.  Mrs. Joy comes four afternoons a week to work with Adela on her exercises, preschool work, give Mommy time to focus on her jewelry design, and (more important to her than anything else) play.  Mrs. Joy is great and I know Adela has an excellent time with her.  They’ll read, do puzzles, go for walks, play in her pretend kitchen, and more.

And finally, this weekend, we’re starting to work on expanding Mommy’s garden with Nana and Grandaddy having come up to help us build a few more raised garden beds.

Bye Bye Brody

Dec 15, 2010 by Daddy

On Monday, Adela had her broviac catheter (a.k.a. “Brody”) removed.  As we’ve mentioned before, we have mixed feelings about her no longer having the broviac.  It was a safety net and a convenience — if she ever needed IV medicines quickly it was available, it made for painless blood draws, and it would be great to have for as long as she’ll be on the Remicade (which is indefinitely).  However, a broviac is an infection risk and any fever over about 101°F lands us in the hospital on antibiotics for at least three days to ensure it’s not a major infection.  So, we decided it was time for Brody to go bye bye.

We arrived about 7:30 AM, spent about an hour with admission paperwork and waiting room fun, then moved back to the pre-op area about 8:30 AM.  After more paperwork and meeting all the doctors and anesthesiologists that would be working with Adela, she got a nice dose of Midazolam (Versed) to relax her before surgery around 9:00 AM.  Within a few minutes, she was relaxed and went back to the operating room.  We waited for about 30 minutes and the doctor came out to let us know that everything went well.  Mommy sat with her in the post-op room (only one parent was allowed back at a time) for a little while then we asked to be moved to the pre-op area to observe her a little while longer.  We’re hesitant anytime she gets anesthesia since it’s one of the factors that could have led to her stay in the PICU last year.  By about 11:00 AM, it was clear that she was back to her normal self and spunky enough to leave.  In fact, she was so energetic, she wanted to go to Bear Rock Cafe in University Mall (one of her favorite places to go out to eat…even though she can’t have anything from the menu).  After lunch, we walked around the mall and listened to a group of school children sing Christmas carols on a little stage that had been setup in the middle of the walkway.  Adela was so excited about it that, after they were done and everyone had left, she got up on stage and sang “Twinkle Twinkle Little Star” and showed off her own dance moves.  So much for the nurse’s warning that “she might be tired and woozy for a day from the anesthesia”.

Tuesday, she had a follow-up appointment with her GI doctor to discuss her Crohn’s.  The results from the tests all suggest that she’s doing well on the Remicade.  She’s still on steroids, but that dose is being weaned down a bit each week.

So, overall, good progress.  We’re pleased with the new medicine and we can see a major improvement in her energy level and mood.

Christmas is coming…

Dec 11, 2010 by Daddy

It’s been about two weeks since we posted and we wanted to give everyone an update on how Adela is doing.

First, let’s get the medical-related topics out of the way.  She’s feeling better, has more energy, and is in a much happier mood.  We were at UNC on Tuesday for her second infusion of Remicade (the medicine for her Crohn’s disease).  We stayed in the “short stay” unit since this is only her second infusion and the doctors wanted to monitor her closely to watch for an allergic reaction to the medicine.  The next infusion will be in one month.  We were supposed to have the broviac catheter removed on Tuesday as well, however due to a scheduling snafu (UNC’s, not ours), the surgical team wasn’t booked in time.  So, we are going back early on Monday morning to have the broviac removed.  Like all the other medical decisions, this one has its tradeoffs.  Leaving the broviac in would mean that when Adela needs her Remicade infusion or blood draws, she doesn’t need to get stuck with a needle.  On the other hand, it’s an infection risk and any infection or fever lands us in the hospital for a minimum of three days.  She’ll need to be sedated for the procedure just as she was for her scopes.  We’re not anticipating any problems and the procedure itself only takes the surgeons about ten minutes, however we’re probably going to ask to move to the short stay unit after the surgery so she can be monitored for a while since we’re still apprehensive about her reactions to anesthesia.

As for family life, we’re all in Christmas mode now.  Adela is very excited about Christmas this year.  Our tree went up last weekend as did a good number of holiday decorations around the house.  She’s already written her letter to Santa and has told him twice now that she wants a donut maker (she’s all about sweets and candies right now which is ironic considering we haven’t reintroduced any in her diet yet).  Her first Santa experience this year was at University Mall in Chapel Hill (Mommy already posted about it) and the second was on the Santa Train.  Yes, there is a Santa Train — I think it was the most anticipated Christmas activity so far.  The Museum of Life and Science in Durham has a small train on their property that you can ride when you visit the museum.  However, at Christmas, they deck the train out in lights and it becomes the Santa Train.  About midway around the track there is Santa’s house surrounded by lighted decorations.  Santa himself walks down the train and talks to each child as well.  She also got a candy cane from an elf which she was terribly excited about.  Further down the track, everyone spotted Rudolph’s red nose in the woods moving around.  After the train ride, they have activities like face painting, reindeer food making, and coloring for the kids.  It was fun (however it was also freezing that night) and Adela had a great time.  She enjoyed the snow that fell last weekend as well.  This is the first year that she actually asked to go walk around in the snow.  She didn’t stay out long, but she did have a good time.

Happy Belated Turkey Day

Nov 27, 2010 by Daddy

We wanted to wish everyone a Happy Thanksgiving.  Adela has had a great few days.  She is very bubbly and happy.

Surprise  Surprise ~ Adela actually sat next to Santa without bribery or anything.

She even told him about the donut maker she wants.

Better (to be home) late than never

Nov 25, 2010 by Daddy

It’s late (11:00 PM), however we’ve just gotten home from the hospital.  Adela is fast asleep in her own bed and soon we will be fast asleep as well.  It was a long day, however we did finally get the answers we were looking for.

The combination of the x-ray and a more detailed look at the CT scan revealed that the mysterious black spot seen on the scope was actually the inflamed opening to the appendix.  The appendix itself is fine other than being inflamed, however it looked odd enough that it wasn’t identifiable during the scope.  There were no signs of abscesses or fistulas after examining the x-ray and CT scan, so she was cleared to start her new medication, remicade.  This is a medicine that targets the inflammation more directly than the steroids she has been on.  Part of the reason we’re so late in getting home is that there is a whole process of how to give the medication.  It can only be given through an IV (so her broviac came in handy) and you start at a very low rate of infusion and gradually ramp it up every 15 to 30 minutes, each time checking her vital signs for any sign of adverse reaction.  Adela had no problem with it (slept through most of the infusion).

We’ll post more details later, but the important parts are all above…we’re home and she’s on a new medicine that should help control her intestinal inflammation very quickly.

But wait, there’s more…

Nov 24, 2010 by Daddy

Staying true to Adela’s track record of keeping things interesting, we actually are not home yet.  Unfortunately the CT scan from yesterday didn’t give a definitive answer as to what the unknown spot is.  We thought it did, but when her GI doctor looked at it this morning, she found that the dye used for the scan didn’t completely cover the area in question so we need more images.  This morning we went down for an abdominal x-ray.  The thought is that the x-ray combined with the CT scan may be able to definitively answer if this is an ulcer, fistula, or abscess.  We’re still waiting for the x-ray results…been waiting for five hours now for the results.  If it’s determined that the spot is harmless, we’ll go right home after Adela’s dose of new medicine for Crohn’s.  If it’s not clear from the x-ray, we’ll have to have another CT scan, this time with a barium enema to ensure the dye gets where it needs to be.  Oh what fun.  The only good thing about that method is that Adela doesn’t need to fast and the barium dye is given all at once immediately before the CT scan.  Then I’m sure we’ll have to wait again for the results to be read before we know what the next step is.

So, at this point, we’re not sure if we’re heading home today or not, but we’ll update the blog as we know more.