Two viruses, one bacterial infection, asthma, and a pleural effusion

So. . . we are still here. At this point, I think our resort fees should be waived as we continue to enjoy these lovely accommodations for an extended stay. I want to thank all of you for your prayers, positive thoughts, checking in on us, and offers to help out.  It is very much appreciated.

Ellie Bear was admitted to Dell Children's Medical Center back on Friday night for low oxygen saturations related to an asthma exacerbation caused by RSV and adenovirus (very fancy word for common cold).  She continues to improve, but we are having trouble getting her off the oxygen.

On Monday, Ellie spiked a 102.5 fever.  They did not do a chest x-ray, but rather wanted to see if she would repeatedly spike. I was not exactly thrilled by this since it was a new onset high fever.  The reason that they wanted to wait was to 1. not unnecessarily exposure her to radiation and 2. her lungs sounded much better and she needed less oxygen.   

Yesterday, her temperature was 101.4 so the doctors did decide to go ahead with a chest x-ray, which revealed left-sided pneumonia and a small pleural effusion (fluid between lining of the lungs).  She has been started on antibiotics for the pneumonia, but we will not drain her effusion since it is so small.  The effusion should resolve on its own.

Yesterday and so far today she has been requiring minimal oxygen support, but she continues to fail trials off it.  We did have to increase her oxygen last night while asleep, but we were able to wean down twice this morning.  However, the entire 5 minute trial off oxygen she dropped from 95% oxygen saturation to 83-85%.  Needless to say she is back on oxygen.  

Even with the new pneumonia and the pleural effusion, her lungs continue to sound good.  She is on only a little bit of oxygen and she is perkier.  Yesterday she sat in the chair for 12 hours and she didn't want to get back into bed at night.  That means she is headed in the right direction.

When can we bust out of jail? . . . er hospital

Hello y'all!  Can you believe it?  TWO blog posts in 1 week, but I wish that the posts were about fun stuff.  A few days ago, I mentioned that Ellie was in the hospital for adenovirus, RSV, and an asthma exacerbation.  She was admitted Friday night and we thought that we might get to go home on Saturday.

Lies!  All lies!

We are still here.  Ellie loves it so much that we decided to stay.  On Saturday, we attempted to wean her off the oxygen during the day, but that was a fail after 2.5 hours. Even with oxygen, her O2 sats stay between 88-92%.  (normal oxygenation is above 95% and oxygen therapy is typically started if under 88%).  Sunday, her lungs sounded much better and she was coughing a lot more (she coughed so hard that she projectile vomited all over me.)  True to Ellie fashion, she decided throw in a few more, non-major medical things. Because, why?

1. Peeing.  Why does my kid not pee!?  She seems to think that it is appropriate to urinate every 12 hours.  The doctors are not a big fan of this, but I told them I am not concerned.  The did a bladder scanner on Sunday night and showed she had tons of urine.  Just as the nurse gets the order to do a urinary catheterization, Bear pees.  Woohoo!

2. Ellie developed significant abdominal distention and harness.  She was not a fan of us even looking at her belly let alone touching it, but she did not cry out.  The x-ray revealed extensive gas. Most likely from her rapid breathing and inhaling so much air as well as stool at the lower colon.  We were still having constipation at home issues even with the enemas through her cecostomy tube as well as rectal enemas so she hadn't gone in a week.  Thankfully, yesterday she had two small BMs after giving a large volume SMOG (saline, mineral oil, and glycerin) enema rectally.  Her abdomen is still a little distended and hard, but it is still much better.

Fever, poor fluid intake, and more oxygen. Early Monday morning, the Turkey Bear thought it would be appropriate to drop her oxygen saturations and require an increase in oxygen twice.  We couldn't figure out why because her lungs were even clearer than before and she was coughing (this is good news).  We did get her out of bed for a while yesterday, she started to eat more again, and she was in a great mood.  She had trouble drinking and we were considering an IV, but we got her to consume small amounts of fluid throughout the day.

Ellie Bear also developed a fever of 102.5 so the doctor decided that if she continues to spike that high, we will do a chest x-ray to rule out pneumonia.  Fortunately, after the Tylenol wore off, she never went above 101.4.

Now for the good news! Last night (Monday night), we were able to decrease her oxygen a fair amount while sleeping.  This is a BIG step in the right direction.  She really needs to be able to go all night without oxygen while maintaining her oxygen saturations before 88% before we go home. I a really hopeful that she will be able to go a few hours today, while awake, without her oxygen mask.

Thank you, The Wish Connection for the visit and balloons!

The nurses, respiratory therapists, and doctors at Dell Children's Medical Center are great!  They value what I have to say.  They accept that I know Ellie better than anyone and they understand that I have a fair amount of medical knowledge given my professional history of being a PICU nurse (okay, that was 14 years ago and back when our charts were on paper) and practicing as a pediatric nurse practitioner.

Andrew had to post-pone his business trip on Sunday due to Ellie's hospitalization, but he has to fly out today and will be back on Friday.  Hopefully we will be home by then!  He has been visiting and relieving me for coffee breaks and meals as well also bringing snacks, toys, and changes of clothes and toiletries for me.  I don't to go home other than after the first day because, but I rather stay near the hospital as it is a 30-40 minute drive for us.  I would like to thank everyone who has been praying for us, sending positive thoughts and virtual hugs, brining me coffee, and offering to help.  I appreciate it more than you will ever know!

In the Hospital: Asthma Exacerbation

On Friday, Ellie was admitted to the hospital due to respiratory issues as she had low oxygen saturations. We were hoping we could go home today (Sunday) but unfortunately we get to stay another night. However, we do think that she will be well enough to go home tomorrow. 

ER Friday Night

Last Tuesday night, she was having trouble maintaining appropriate oxygenation levels (typically want O2 sats above 88%) while sleeping even with her albuterol inhaler. I had talk to the on-call doctor and she prescribed steroids.  I feel like I should a listen to my mama guy because I really felt like we should’ve gone to the ER but the doctor told us we did not need to even know her oxygenation levels for 85%. 

She was much better the next day and we had a follow-up with the doctor. She was diagnosed with a  viral respiratory infection via nasal swab and her x-ray showed mucous plugging in her right lower lung, but thankfully no pneumonia. 

Saturday Night

She started to do a lot better but Friday night we could keep her above 80 to 85% and she was breathing fast while asleep. When we got to the ER, she was 81% while awake. We did 2 hours of continuous albuterol and then switch to every 3 hours. Needless to say she was admitted and has been on oxygen since then. 

This morning: Still on Oxygen.  This position is the best for her lungs and seems to be the most comfortable for her.

Her chest x-ray from yesterday showed no pneumonia and she has small little collapsed areas (alveoli) at base of both lungs. She is mainly presenting with an asthma exacerbation related to the RSV and adenovirus. 

We had expected to come home today but she failed when we tried to lower her oxygen last night. We are hoping that she will feel well enough to move around today and hopefully continue to cough up those mucous plugs. 

Speech Breakthrough, an unexpected IEP, Funky Breathing, and Mama Gut

The exciting and most wonderful new!

I’ve been waiting 8 years to hear my daughter say those 3 little words.  Words I was never sure that I’d hear.  Using her CHAT device, Ellie Bear said “I love Mama”.  There, may have been a few tears.  Okay, a lot of tears, happy tears were shed.

Speech therapist on Ellie quarterly report: we need to meet ASAP for her IEP revision!

A few weeks ago, we received Ellie's quarterly report card.  For those of you who do not have kiddos with special needs, the "grades" are based off of Individualized Education Plan (IEP)'s goals.  You have things like met, continued progress, regression, and N/A.

I was scrolling along beaming with pride because most of her goals were close to being met already.  Then I get to the speech section - no "grades" typed in at all.  Instead, a note to meet with her ASAP.  My heart plummeted as well as the thought  of "if we need to meet ASAP, why didn't she call?".

Panicked, I approached the meeting room with the teacher and SLP with a wicked fast heart rate and mild tremors.  I apparently freaked out for nothing.  We have a new SLP this year and her goals were written by the old SLP at the end of last year.  The new SLP, Mrs. A ,said that these goals are not really appropriate - not that she couldn't maybe meet them, but not the types of things they want to her to accomplish in the Functional Communication Classroom. 

Ellie's teacher wants her annual ARD (the big IEP meeting with all teachers, therapists, vice principal, etc) because her goals are also inappropriate and pretty much met.  She based Ellie's goals off of what her FAC teacher said she could do last year.  For instance, he couldn't tell her exactly how many sight words Ellie knew and said "just a few" or something along those lines.  The FCC teacher, Ms. L, thought a good goal would be 27 sight words.  Well, when she started working with Ellie, she discovered that Ellie already knew over 500 words!  She calculated the new words she has learned since the beginning of the school year and it is already over the 27.  With the introduction of the speech device this year, the teacher is finally able to assess what Ellie truly knows and that may have been why FAC couldn't measure her true progress.  Hence why we need new goals. 

Showing Mama Bear around her classroom

 What is up with these oxygen saturations? and always trust Mama Gut

Two weeks.  That’s how long the Bear has been ill.  I was at Ellie’s school for the Thanksgiving lunch and she was coughing.  Nothing that I normally wouldn’t think too much of, but mama gut told me to take her to the nurse to get a pulse ox reading (this checks the amount of oxygen in the blood.  Normal is 97-100%).  She was hanging out at 92%.  Her inhaler helped her a bit, but she kept returning to the low 90s.  I took her to CCC the next day.  Totally anticlimactic.  I was told she might have mucus plugs in her lungs and is coughing them up. Therefore, coughing is good.  I wasn’t to give her the inhaler unless she was either 1. under 88% oxygen saturations or 2. wheezing.  She started getting better, but then spiked a few fevers off and on during Thanksgiving week.  The day before Thanksgiving, she was a snot machine, which she didn’t have before, but not worrisome.

Then, yesterday morning, her cough was bad and I checked her saturations - 88%.  So we used the inhaler.  I had her checked out at school and same thing.  The inhaler helped a bit.  I was finally called to come pick her up because she was trying to nap on the classroom floor (of course she gets home and is miss energy).  She looked horrible.  Today I took her to CCC and I noticed her lips were turning blue.  She was at 86%, but came up to 91% with the inhaler.  Her lungs had crackles (a sign of fluid in the lungs like with pneumonia).  We are to give her inhaler every 4 hours and start her on Omnicef.  If no significant improvement after 48 hours, she’ll be started on a course of steroids.  If she either 1. can’t keep her sats above 88% with the inhaler or 2. has a >101.5 fever Friday or thereafter, she needs to be seen again.  I think she’ll be fine. 

She's pretty excited because she put her PJs on all by herself
Another milestone today!!!

Is it respiratory or reflux?

Reflex vs. Respiratory - Miss Pukes-A-Lot

Ellie has a history of esophageogastroduodenitis.  That is a fancy way of saying reflux and inflammation of the stomach and upper small intestine.  See, not that exciting, but it does mean the Bear gets to take reflux meds.  Last month, Chicka Boom was puking up her bedtime meds 2-3 x a week.  Usually about 1 hour after dinner and twice it wasn't related to her meds.  Once occurred, on the table at Chuy's.  Its cough, cough, cough, cough, puke.  After 3 nights in a row of not getting her meds, I called CCC.  Of course they don't get back with me. I call GI who calls the CCC for me.  Immediate call back.  My thought is that she needs a reflux med adjustment because back in June, we did a trial of the medication and she randomly vomited and it resolved after restarting the meds.  The docs agreed with me and had the bright idea to put her on cyproheptadine aka Periactin.

Periactin is an interesting medication.  It is a prescription allergy medication (antihistamine similar to Zyrtec)m, but is also used as an appetite stimulant, migraine prevention, and treatment of delayed gastric emptying.  Ellie was on this a few years ago as an appetite stimulant.  Uh huh.  The kid has packed on the weight these past few months.  She doesn't really need to gain anymore.  Anyway, fun fact about antihistamines: they help with nausea.  Histamine is what signals the release of gastric acid in the stomach to break down food.  If you block the release of histamine, there is less gastric acid to reflux back into your esophagus.  It seems to be helping.

I think that is all for now!  I am looking forward to hearing more of those "I love Mamas" and a future visit from my parents and my brother, Matt.

Follow us on Facebook! https://www.facebook.com/pages/The-Chronicles-of-Ellie-Bellie-Bear/216738345037166