Thursday, November 2, 2017

The City of Brotherly Love and It's Always Something

The City for  Brotherly Love:  

Once upon a time, before Andrew and Ellie, I lived in Philadelphia.  I got my BSN and MSN at UPenn.  I thought that I would never leave my apartment, my friends or my awesome job at CHOP ENT, but then I met the love of my life and how could I not be with him. . . 

Anyway, during my years in Philly, I made several good friends.  Friends that I would do anything for.  Friends that have been with me through the worst and the best times. Friends that I'll always miss.  That is why I was so excited that I got to return Philly for my friend's baby shower!  Oh to see so many of my friends again and all to celebrate such a happy moment in my friend's life.  Of course, we had to watch the Eagles game on TV (they won, of course), indulge in cheesesteaks as well as dance and sing along to Run Around Sue in the middle of 2nd Street. I also finally got around to getting my Down syndrome butterfly tattoo.  It's only taken me how many years?

Left inner forearm. 

Drew managed to survive the entire 3.5 days I was gone .  Of course, the first night away I get a text saying that he couldn't get Ellie's nighttime oxygen on because "she moved".  That went on all 3 nights I was gone, because you know, she moved.  Uh uh.  He also forgot her mid-day meds, but she's alive and that is the important thing! My flight home went smoothly after my flight to PHL was as usual  when I fly there, was over 6 hours delayed. I'm not a big fan of American Airlines.

Top Notch: 
We have been going to this place that opened back in 1971.  They serve the best burgers, fried chicken, fried okra (if you like that disgusting veggie), and milkshakes.  They love to host car shows - whether it be VW vans from the 1970s or cars from the '50s.  The name of the place sound familiar to you?  A scene from Dazed and Confused was shot there.

Top Notch: hmm, seems like Andrew is way more into the coloring than Ellie.

Ellie has this aversion to costumes.  I am not sure why, but for the last few years, she wears Halloween pajamas and goes trick or treating at the mall.  She'll go to 2 stores and end up with packets of gummy bears and goldfish crackers before charging into the bounce house.  This year was no exception and she had a great time.

The Out of Control Thyroid:
With our first visit to the Comprehensive Care Clinic [CCC], her blood work showed high TSH [thyroid stimulating hormone] and a low free T4 [thyroxine].   Both of these lab values suggest hypothryoidism.  Treatment is usually taking Synthroid/levothyroxine daily which is to improve thyroid function.  

Six weeks after starting her thyroid medication, we got repeat blood work.  I fully expected to be still in hypothyroidism since she was still sleeping 13.5 hours / night, having trouble waking up in the morning, and laying around telling us she is going to bed.  In fact, her average bedtime is 6pm! Her labs were still abnormal, but her free T4 is now pretty high with a very very low TSH.  Essentially, she has gone into hyperthyroidism.  She was referred to endocrine and we cut her dose of Synthroid in half.  We will recheck a thyroid panel in 4 weeks.  The endocrinologist said that good news is that she did respond to the Synthroid.

Say what?  More GI issues?!?!
Seriously, what is it with this kid and her gastroenterology issues?  Fortunately, this one isn’t too exciting.   Of and on for the past few weeks, Ellie has been throwing up her bedtime meds.  We even had 3 days in a row where this happened.  Now missing the occasional dose of some of these isn’t all that worrisome, but 3 days. . . well that's not good.  Interestingly, she was not vomiting up her morning or afternoon meds.  I realized that it was related to dinner.  If she takes her PM medications within 30-60 minutes after dinner, she was more likely to vomit.  So I’m thinking an adjustment to her reflux med is in order.  

Otherwise, things are pretty calm over here for once and I am definitely not complaining!

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Monday, September 25, 2017

New Job, Birthday Girl, Thyroid Problems, Weight Gain

For the first time in 8 years, I went back to work.  I’ve been saying since Ellie entered full time kindergarten that I would sign on to work as a substitute school nurse.  However, with all of Ellie’s medical appointments, surgeries, and hospital stays during the past 2 years, I was never able to make the commitment.  Now that Ellie seems to be doing well, I took the plunge.  I can only work Tuesdays, Wednesdays, and Thursdays as that is what works with Ellie’s therapy schedule.  This is new for me.  I worked years ago as a PICU (peds ICU) nurse and then as a nurse practitioner.  School nursing is so different, but I like it so far.  There is a bit of a learning curve, lots of protocols, different school clinics set up differently, and I discovered that kids talk a lot.  Why this is shocking to me, I don’t know.  Maybe because my own 8 year-old doesn’t talk?  Seriously, the stuff that comes out of their mouths! I also was reacquainted with the games “rock, paper, scissors” and “I spy with my little eye”.  

Ellie has been in school for nearly a month.  The first week went well.  Now I am getting notes home from school everyday (along with the unhappy faces) about her being very distracted and unable to focus.  There could be a couple things going on.  One being her ADHD seeing as her medications have not been changed since she gained nearly 9 lbs and dosage is usually based off weight.  The other would be related to her thyroid.  It seems that the Synthroid (artificial thyroid hormone) probably isn’t where it needs to be, but we don’t retest her thyroid levels until October.  Ellie is exhausted.  Every morning I have trouble waking her up and every day when she comes off the bus, she looks so tired.  A tired Bear = cranky Bear.  Mornings, afternoons, evenings, and bedtimes are rough.  Weekends are slightly better because she can sleep in a bit, thus getting her required 13.5 hours of sleep.  One of the things that I have noticed, aside from being a crankypants, is that when she is tired, her ADHD seems worse.  So I wonder, do we need an ADHD medication adjustment or a Synthroid one or maybe even both?

I was going through some pictures of Ellie and came across ones from last year - her school picture and her allergy testing.  Looking at how skeletal she was.  How ill she looked with all of her ribs hanging out.  Then studied the pics from the beginning of this school year.  Nine pounds and 2.5 inches later, she looks so good.  She is still on the small side on the Down syndrome growth chart, but she is finally ON the chart! After a mention of a G-tube for supplemental feeding, if I had know Risperdal for her ADHD would “cure” her failure to thrive, I would have signed on 3 years ago.

Ellie has been taking her speech device with Proloquo 2 Go with her to restaurants and ordering her own food.  She hasn’t quite figured out that if you hold down the “sandwich” button, if gives you the option for “sandwiches”.  Ellie is getting creative:  “ I want sandwich is”.  

Bear turned 8 years-old a little over a week ago.  I cannot believe she is 8 already.  I sometimes feel like I am still in my 20s and can’t possibly believe that I am old enough to have a kid this old.  Other times, I feel like I am pushing 50 with all the white hairs I have been finding (I blame   Bear and my husband).  It was difficult trying to figure out what to get her for her birthday seeing as the only thing she really likes are those large milkshake-size straws.  So yes, she got straws and some winter clothes since she has finally grown.

Well, that is all for now.  Things are even keel and fingers crossed they stay that way!

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Wednesday, August 23, 2017

Organizing Ellie's Medical Care

It has been an eventful past 2 weeks.  Well, not too much so.  We’ve just had 5 doctor appointments.  Most were anticlimatic, such as ENT where we have graduated to yearly appointments.  Can you say “woooohoooo!?  

First up was ophthalmology.  The Bear still isn’t wearing her glasses.  We’ve been doing atropine drops into her good eye to dilate the pupil thus making seeing out of that eye blurry.  In theory,  by having blurred vision in both eyes, she should more likely to wear her glasses.  Except that didn’t happen.  We discussed patching her good eye as we want to force her bad eye to stop turning in.  I gave the doc my “you are delusional” look because can you see Ellie keeping that on?  So we are now doing atropine twice a month which will act similar as patching.  The thing with nystagmus (turning in of the eye), if left untreated, that eye eventually goes blind.  Obviously we do not want that to happen.

If only she would wear them for more than 2 minutes

Next up was GI. We graduated to 6 month follow - ups!  So let’s do another woohooo! Her constipation seems to be well controlled - I hope I didn’t just jinx it!  She is dealing with some random vomiting issues.  Since June, she throws up about 1/3 of the time with the enemas.  We figured this is because we administer a high volume of saline into her colon and it pushes on her stomach.  Except, this is new.  We’ve had 3 other instances where she throws up once randomly - not associated with enemas, eating or drinking.  We are debating on whether or not they were stomach bugs or reflux.  To be on the safe side, we restarted her reflux meds.

As it turns out, we did have to go back to Infectious Disease.  When they called me while on vacation, saying her labs were mostly normal for her, they only had some of her results.  Her B cell lymphocytes were still very low, but she had a moderate immune response to her vaccine.  ID isn’t worried because she has never had sepsis or required IV antibiotics and she did great with the vaccine.  Yes, her lymphocytes are still low, but her immune system is functioning okay.  

Waiting for audiology at ENT

Friday, we had an appointment with our new pediatrician at the Comprehensive Care Clinic.  We had been waiting months to get in.  Dr. B, coincidentally, was Ellie’s very first GI specialist and she has a son with Ds. The appt was nearly 3 hours long and did great until the very end when the phlebotomist used a band-aid instead of purple coban.  One of the goals of CCC is to minimize specialists visits and try to do most “visits” over the phone.  We have our assigned nurse’s cell # and any time we need to talk to a specialist, Dr. B calls them.  She is going to take over most of her care for pulmonary, ID, ENT and possibly neurology.  We are up in the air about urology since Ellie gets bi-yearly renal ultrasounds and CCC doesn’t have that capability in their office.  Her eye issues and GI issues will continued to be predominantly monitored by her specialists.  

Don't you always take baths with your swimsuit?

We learned yesterday that Ellie has hypothyroidism.  It would explain why she has been sleeping 13 hours and asking for naps all summer.  Hypothyroidism is very common in Down syndrome.  It is why we monitor via yearly blood work.  The signs of hypothyroidism in a child are fatigue, weight loss (in adults it is weight gain), constipation, and cognitive impairment.  Because cognitive delay and mild constipation are common in Ds, it is difficult to differentiate between Ds and symptoms of hypothyroidism.  Thankfully, we do not need to add endocrinology to list of docs we see as the CCC will handle it.

According to the pharmacist, synthroid (synthetic thyroid hormone) is supposed to be taken with water only and not within 4 hours of other medications.  Seeing as Ellie takes meds 4 x day, she would have to get up at 2:30am to take the synthroid.  The pharmacist agreed that it isn’t practical so she will take it with her morning medications and routine lab work will monitor her thyroid levels.

Now the good news is that we have NO doctors’ appts for the months of September and November so I will hopefully get to blog about other exciting things besides medical stuff.

She was so excited to ride the bus and go back to school.

Ellie started 2nd grade yesterday and she had a blast!  Here’s to hoping for a good, successful school year!

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Tuesday, August 8, 2017

Immunology and Vacation

We are back!  We had a lovely time in Seal Beach, CA and some nice visits with Andrew's dad and wife.  It had been 5 years since Ellie had seen them and she was just thrilled to see her Papa.  We tried to stay pretty busy and enjoy the gorgeous 80 degree weather which was a good 20 degrees cooler than scorching Austin.

The first day we went to the beach, but we stayed in the way back so she couldn't see in the ocean and want to go swimming.  She also spent time on the playground right on the beach, swinging to her heart's content.

So Disneyland.  It was an adventure and the first time that Ellie and I have ever been to any type of Disney resort.

We made the mistake of waiting in line for 45 minutes to get a disability pass.  A disability pass allows wait to go on a ride without waiting in the line.  For instance, say the wait is 40 minutes, you can go do something else and come back 40 minutes later to get right on the ride.  We did this specifically for Dumbo.  Ellie did not want to ride Dumbo.  Instead she wanted to ride the King Triton Carousel and the Circus Train a gazillion times. The wait times were not too long which was great for someone who has meltdowns, but we learned halfway through our visit that we didn't really need to wait at all or use the disability pass.  Ellie's stroller is actually a wheelchair.  That gives us access to the disability line and allowed us to hop right on the carousel and trains.  Apparently, this is for all the smaller rides.  The bigger ones, you have to have the disability pass.

Unfortunately, Ellie did not get to meet Mickey Mouse.  I am pretty bummed because I think she would have peed her pants with excitement.  She was pretty tired by the time we wanted to go to Mickey Toon Town I saw on the app that the wait was 35 minutes. You cannot use the disability pass or Fast Pass for any of the characters.  Andrew and I knew that there was no way she could wait that long. So yes, we went to Disney for a whopping 2 rides, but I am still glad we went.

Convaid Scout Wheelchair.  Goes up to 100lb.  Ellie's is purple.  Our insurance paid for it because 1. Ellie cannot walk long distances and 2. because she is a runner which is a safety concern.  

The following day, we went to this fancy smancy mall the size of a small town with stores like Dior, Armani, Michael Kors, etc. for the sole purpose of riding their carousel.  Can you tell that Bear loves the carousel?  She went on it 6 times and had a blast.

On our last day, we went to the beach up near the ocean.  That was a colossal mistake.  At first, Ellie Bear was quite content to play in the sand.  Then she realized that she was right by a lot of water and wanted to go swimming.  She didn't understand that, as per Infectious Disease, she could not swim in the ocean due to her cecostomy tube and possible immunodeficiency.  We ended heading back to the hotel room and used their swimming pool.  Ellie's idea of swimming is sitting on the edge and kicking her legs in the water.

A few hours after going to the beach, we get the call from Infectious Disease.  Her labs came back in early.  Great news! Her labs are mostly normal, well normal for Ellie (her CD19 B cell Lymphocytes [a type of white blood cells] are always a bit low).  That means she does not need IV immunogammaglobulin therapy!!!  So. . . she could have swam in the ocean.

On a side note, shortly after entering Disneyland, I managed to throw out my mid-back.  That area of the spine just below the shoulder blades.  It happened while I was transferring Ellie from her wheelchair to the toilet.  I started to get better and threw it out again on the way home due to trying to maneuver Ellie onto the toilet in the airplane bathroom.

The next two weeks are jam packed with doctors' appts - we now only have 4 since ID canceled- and back to school stuff.  Today, we see ophthalmology which should be fun because I have to tell the doc that Ellie still won't wear her glasses even with the atropine drops in her good eye.  Last visit, she said if this doesn't work, we will have to patch the good eye.  Riiiggggghhhhhtttt.  Because this stubborn child is going to leave a patch on.  Thursday is ENT and I am expecting that to be routine.  Yes, a routine appt!!! Next week is GI.  We plan to take her off the Protonix for reflux.  I am not sure that is going to happen seeing as about 30% of the time post enema, she throws up. This is new in the past 1.5 months.  She also had one day where she threw up twice for no obvious reason and then puked all over her iPad while in Seal Beach.  Next Friday is our new patient appt. with the Comprehensive Care Clinic. We have been waiting months for this appointment.  I am told that the office visit will be about 2-3 hours.  It should be fun.  This doctor will become Ellie's new pediatrician seeing as our really awesome, amazing, fabulous current one is no longer in our insurance plan.  Dr. B at the CCC, coincidentally, was Ellie's first GI specialist during the first 2 years of her life.  I am hoping that we can have a few playdates and make it to the neighborhood pool since Bear Bear needs to have some fun in her life..

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Sunday, July 30, 2017

Party On: Updates

Happy Summer!  We have 3 more weeks before school starts.  How about y'all?

We head out to Seal Beach, CA soon!  We have our trip to Disneyland planned and we anticipate seeing Andrew's dad and his wife.  We were going to meet up with a Facebook friend who also has a kiddo with Down syndrome, but that fell through.  It's a real bummer, but I am certain that I will meet her at some point.  After hitting over 100 degrees over the past few weeks, we are thrilled to experience the 70-80 degree weather during our vacation.

So, we found out that Ellie cannot go into the ocean.  Yes, a beach vacation and no ocean!  I talked to Infectious Disease and they said that because she may have an immunodeficiency and she has the cecostomy (which she is considering to be a wound/open skin), she is at risk for severe bacterial infections such as flesh eating bacteria.  Oh goody.  I would like to avoid that. So fun times in keeping her out of the water, but I think, I hope that she will be satisfied with just playing in the sand.  On Monday, we recheck her different WBCs, immunogammaglobulins, and pneumococcal antibodies.  The results will determine if she does indeed have an immunodeficiency.  I am betting that her B cell lymphocytes will just be a little low, which is her normal.  We won't get the results for 2 weeks which is why we are playing it safe.

Speaking of safety, Ellie refuses to wear a medical bracelet.  I have tried various kinds.  I got mySquareID which I put on my keyring.  I also, through Facebook, found these nifty seat belt covers that have a little pocket in the back for medical information.  Stitched on the front, I have "Nonverbal" and "Down syndrome".  The medical info that I have in the back pocket has emergency contacts #s, mediations, allergies, and diagnoses. I have a cover on her car seat, her backpack, and her stroller.  I was able to order these seat belt covers off from Seat Belt 911.

Finally, Ellie has been quite the toot.  She has been exhausted since June and the past few days have been worse.  I am really hoping it is a growth spurt or maybe just the ridiculous Texas heat.  I’m having to wake her up in the morning and that is sometimes after sleeping 14 hours.  She would come home after only 4 hours of summer school and say that she wants to take a nap, which she doesn’t end up doing but does lay on the floor.  She is going to bed early.  The other day, at the drop in daycare, they said she mainly sat there and barely played. The thing is, she does the irritable fatigue thing that little kids tend to do.  She screams and cries in the afternoon.  She’ll calm down for a little bit and then freaks out again around bedtime.  She will ask for juice, bread, Mickey Mouse, bath, etc and then scream “no” when we go to give it to her.  She loses it when we don’t give it to her even though she pitched a fit and said “no”.  This will repeat several times.  I am at my wits end.

Other than that, things have been pretty calm over here and hopefully they will stay that way.  I shall report back after Ellie's ID appointment on 8/16.

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