Friday, July 14, 2017

Summer Fun, Pneumonia, Wonky Lab Results

It’s summer!  I hope that everyone is enjoying their break from school.  Ellie has been a cranky butt since school let out.  Every day she signs “school” and “bus”.  She is an emotional wreck.  Happy and smiling one minute while the next she is either crying or shouting  “no”.  I think that it is the lack of routine causing this mood instability or maybe it is the 100 degree heat or the moon is in mercury or something.  I have been trying to keep her busy, but unfortunately, a lot of our plans get canceled. 

Ellie missed most of the last week of school.  She had a junky sounding cough and after a few days, I got the bright idea to check her oxygen saturations using our pulse oximeter.  She was satting at 92% (normal is 97-100%).  That meant a trip to the pediatrician who diagnosed her with pneumonia and sent us on our way with an antibiotic.  The next day her oxygen saturations were in the 80s so this meant an ER visit.  Of course, by the time we arrived at the ER, her sats are back up to 92%.  The doctor said he heard crackles in her lungs which suggests pneumonia.  An X-ray showed mucus plugs in her lungs and an infiltrate.  He said it looked viral, but to continue the antibiotic and prescribe an inhaler which we never ended up using.  Two weeks ago, we saw Ellie’s pulmonologist for her sleep apnea and at night oxygen.  He took a look at her x-ray and said it didn’t look like pneumonia, but rather a viral lower respiratory tract infection such as bronchiolitis and mucus plugs.  He stated it could be a sign that she may develop asthma.  He told us to call if she needed to use her inhaler twice a week for a month.  Right.  I doubt that will happen seeing as she never needed an inhaler before, but I guess there is a first for everything.  When I got access to her clinic note, I see that he diagnosed her with mild asthma. What?  So now we can add another diagnosis to Ellie’s long list of medical issues.

Last week, we had to follow with Infectious Disease because some of her immunology blood work was abnormal.  Her B cell lymphocytes (a type of WBC used to fight infections) were very low.  We don’t know if it is because she recently had an illness or if the low count is the reason she got ill. They always run a little low, which is why we see ID yearly, but this time they were really low, hence why the impromptu office visit. She lost most of her antibodies to pneumococcus so we had to give her the Prevnar vaccine again.  We will recheck all her labs in a month to see if she built up a response.  I guarantee you that her B cell lymphocytes will be back to Ellie’s usually range.

We have been to our neighborhood a few times and she seems to enjoy it.  She will only stay in the splash area.  She seems to be afraid of the pool.  I am not sure why because she knows how to swim a bit - using arms, holding her breathe while under water, and coming up for air.  Still, she enjoys the splash area, which is why we are headed there in a little bit today.

Our school library is open for the summer on Thursday afternoons.  She has been very excited to pick out books and insists on “reading” them on the way home.  Yesterday she picked out a book on cockroaches.  The librarian said it is one of their most popular books.  I bet it is their grossest book!  I am not sure I can stomach reading it as it has really close of pics of those nasty roaches.  Of course, she won’t read them before bed.  Oh no, because I must read “S is for Sofia” every. single. night.  I have the entire book memorized.

We will be headed on vacation this summer to Seal Beach, CA.  It is a part of Orange Country and we will see Andrew’s dad while we are there.  We are going to brave Disneyland for one day as well.  I am excited and dreading it at the same time.  I have never been to any Disney theme park.  I bet it will be hot and crowded and Ellie will get cranky tired.  Nonetheless, I think she is going to freak out when she sees Micky Mouse!  Plus, doesn’t everyone have to experience Disney at least once in their lifetime?

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Monday, May 22, 2017

Just Chilling

If you have been reading this blog for any length of time, you know that when there is a big gap between posts, it is because nothing major is going on.  I am happy to say that things have finally calmed down.  Oh we still have doctor's appointments and therapies, but things are good.

Since Ellie has switched from the FCC classroom from the FAC room, she has been doing well. In fact, the teacher has not seen any challenging behaviors.  We all keep saying "just wait".  I don't know why she has stopped shirt pulling and pushing as she is still doing these things in therapy waiting rooms.  Maybe because she gets more attention as there is another aide in the FCC room?

She is doing so well that she received an Eagle Pride Award at school.  She was pretty excited - mainly because she got a piece of paper.  Andrew and I are very proud of her.  At times, it seems that the whole focus is on her negative behaviors and regression.  It is good to see her rewarded for her good behaviors and accomplishments.

Ellie had a dance recital this weekend.  This is with the 2dance2dream charity.  Studios around Austin offer up studio space for a free dance class for children with disabilities.  The older students are act as volunteers to provide more one-on-one support.  I would love to tell you that Ellie danced.  She did not.  She stood there and allowed the volunteer to stand behind her and move her arms around. Oh she did do a bit of jumping.  She also sat on the stage for half of the dance and attempted to crowd surf twice. This is usually how it goes.  She has two recitals - the studio recital (in this case Evolution Dance) and then the 2dance2dream recital.  For one she will do most the dance and the other she will attempt to run away and throw herself on the ground.

I think in my last post I mentioned that Ellie had high blood pressure.  Last month, we went to nephrology.  Of course her blood pressure was completely normal.  The first normal reading I had seen in a year.  Our 1 month follow up was this week and again it was normal.  Figures.  So Ellie doesn't really have high blood pressure and we can finally cross one specialist off our list of people to see.

Glasses.  Oh the glasses.  It isn't going too well.  I can get her to wear them in 5 minutes increments.  As in she wears them for 5 minutes and then I have to tell her to put them back on.  This will go on for a 1/2 hour and then nothing I say or do will get her to put them back on.  They have the little strap in the back and she can still get them off.  I am not sure what to do.  Just keep putting them on her and hope she gets used to them?

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Tuesday, April 18, 2017

Why I let my 7 year-old carry a blankie

My daughter was given this pale pink lovely as a gift.  Angel Dear lamb.  She loved it.  She actually still loves it.  She never took a pacifier.  She never sucked her thumb. Yet, she latched onto that blankie and chews it.  We have multiple blankies.  All  are the same.  Only Ellie realizes that they are not the blankie.  Her blankie is now pale grey and nasty.  I have 2 other blankies that she has deemed acceptable.  Also grey and well loved.  One is constantly in the wash.

She is 7 years-old and still chews on the the lovey.  She sleeps with it.  She takes it to doctor's appointments and it comes with us to restaurants and outings in her backpack which also holds diapers, wipes, and the iPad.  In public, she has blankie, but she doesn't chew on it.

I was one of those parents who was going to be all "alright, she is 3 years-old, cut the ends off the pacifiers!".  Yet, 7 years later, I still let me child suck on a blanket and take it out in public.  The things is, I. don't. care.

Ellie also has a sleep disorder, she has great difficulty falling back asleep.  She used to wake up sometime  between 12:30-2:30am and not fall back asleep until the following night.  One of the things that soothes her and calms her for sleep is the ratty lovey.  Again, who am I to take it away?  After all, mama needs some sleep too!

I don't really care because there are more important things to get worked up over. Never mind that my daughter is just now developmentally at a 3 year-old level.  My daughter has been under anesthesia 14 or 15 times (yes, I have lost count) for some surgery or medical procedure or other.  She has been hospitalized twice in the last year.  ER visits.  A least one appointment with a specialist visit each month.  We have 3 last month.  If her blankie gives her a bit of comfort, who am I to take it away?

So while my daughter may be 7 years-old and lugging around a blankie, I have decided to focus on other things.  On more important things.

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Tuesday, April 11, 2017

It is always something

I feel like every other week, there is something going on health-wise with Ellie.  Yesterday, we had our follow up with urology.  Ellie was quite naughty.  She has this thing where she throws things off tables and giggles.  She also throws things off exam tables like her iPad, which is now cracked.

We discussed Ellie's urinary issues where she strains to urinate and then may pees in her diaper 20 minutes later.  We also discussed her urinary retention issues.  There are a few options.  None of which I am thrilled about.

Someone will only keep her glasses on in 5 minute increments.

The first option is to put her on the cath program.  Essentially, we would have to catheterize her 3 x day.  This is where you take a catheter (a tube) and insert it through the urethra into the bladder to allow urine to flow out of the tube.  Obviously, this is not a good option for Ellie.  It would take at least 2 people to hold her down while I catheterize her.  Totally not happening.

The second option is a vesicostomy.  This is where you bring the bladder to the surface of the stomach to allow urine to drain.  She would have to wear a diaper to catch the urine and it would mean another surgery.

Fortunately, Ellie's kidneys, while small, are looking okay on ultrasound.  So I decided that we need to go with a wait and see approach.  Ellie will continue to get renal and bladder ultrasounds every 6 months.  If it starts to look like there is kidney damage, we will have to look at those 2 options.  I figure that her kidneys have been looking good for the past 2 years so they should continue to remain healthy.

We also were referred to nephrology (kidney doc).  Like we don't see enough specialists. Over the past several doctors' visits to specialists, Ellie's blood pressure has been high and she is on clonidine which is a blood pressure lowering medication that helps with sleep.  In children, aside from rising childhood obesity, blood pressure issues are related to the kidneys.  Surprisingly, we already have an appointment for next week. I can't believe we don't have to wait months to be seen! I don't anticipate any kidney issues and I imagine they will just monitor her.  Fingers crossed!

I was really hoping for a few months of calmness, but I guess that is too much to ask for.  I am feeling down about all of this.  Ellie always has something going on.  We just cannot catch a break.  Out of all of these health issues, only the sleep apnea is related to her having Down syndrome.  I do not know why she has all of this, but I feel bad for her and I am sick of it all. Fortunately, most of these issues are minor and she is relatively healthy.

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Wednesday, April 5, 2017

The Missing Cecostomy Tube

Oh Ellie Ellie Ellie.  Life is never boring in the Theurer household.  It is always something and that something can usually be traced back to the Bear.

This past Sunday, Ellie decided to remove her cecostomy tube.  She went in her room for one minute and walked out into the kitchen completely naked, minus the tube.  I about died.  This of course necessitated a trip to the ER where they are to insert a Foley catheter (a urinary catheter) into the hole to keep it open.

The thing is, we couldn't find the tube.  I mean she had to have just removed it.  Right?! Maybe.  Did she remove it earlier and we just didn't notice?  We checked her clothes, all the rooms of the house, drawers, the trash can and nothing.  How did it disappear? Also, how she get this tube out without any pain is beyond me.

My parents were visiting so it was mom, dad, Andrew and me all accompanying Ellie to the place of germs.  I discovered a few things: 1. a cecostomy is so rare that the docs had never heard of it; 2. it was up to me to educate them on what a cecostmy is, what the tube looks like, what size catheter to use, and how far to push it through the hole. That being said, they were really good about contacting the radiologist on-call.

It wasn't a bad experience.  For mild "emergencies" you can schedule an appointment.  Yes, an appointment at an ER.  They took us right away.  The doctors saw us right away.  They placed the tube right away.  The X-ray confirmation occurred quickly.  Then we waited another 3 hours.

Sorry for the gross picture.  This is when she had the infection.
Anyway, this is what the tube looks like outside the abdomen.

The normal protocol for when kids pull out their cecostomy tubes (apparently this is relatively common according to interventional radiology [IR] ), you place the catheter and then called IR the following morning to get on the day's OR schedule.  The ER docs decided they wanted her on the schedule before we left the ER.  At first they thought they could do it that day through fluoroscopy.  Then they realized that they were not sure they had the correct size tube.  Then they worked on getting us on to day's surgery for Monday.  They got it all worked out.

Monday, I call IR and request that they double check to make sure they have the cecostomy tube in the correct size.  Apparently, the tubes were under lock and key over the weekend which is why the ER docs couldn't figure it out.  The tubes are always in stock according to IR.

I don't know why she was so excited.

Day surgery went well.  We have decided to keep her tube covered with heavy tape and gauze and to deal with the skin issues that will arise because of bandages.  The IR nurse gave us an abdominal binder to also cover the tube.  I cut it down to size and it goes from her lower ribs to her hips.  Ellie does not seem to mind this.

I am anxious and paranoid.  How are we going to keep this thing in?!  My thought that if it comes out before a year is up, we should just let it close and I talk to GI about the Malone procedure instead. The Malone procedure involves bring the appendix to the belly button and then you catheterized the belly button.  The enemas would go through the catheter.  There is no button, no equipment.  I will be squeamish.

As for where the tube ended up . . . well let's just say Sophie dog had it in her mouth the following morning.  Yuck!

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