Halloween Hatred

Ellie's least favorite holiday is Halloween. We dress her up... she doesn't like any hats or wigs or makeup at all. Then we take her out in the cold which she hates and medically can't tolerate. She has to sit in her chair for long periods of time...another black mark in her book. And the purpose of halloween is to get candy...which she can't eat (only licks)!

She has been inpatient at Primary Children's on 2 previous Halloween's.

This year she hatched a plan and decided that the hospital was better than the torture which we call Halloween. So she decided to get pneumonia.

She has had a cold since the 17th. But nothing too drastic. Things changed this morning. She was really struggling to breathe. We hurried through her morning routine and then drove to the emergency room at Primary's.

We spent a plethora of hours there. I suspected Pneumonia and the Dr.'s confirmed it. But since she was stable at the time they sent us home with antibiotics.

So her Halloween plan partially backfired. She didn't get admitted to the hospital, but I did stay home with her and let her skip Halloween this year.

The good news is...the costume I have been planning for her for literally OVER a year I can save for next year when the torture will continue.

PS I am a little worried to be home...we had a rough night last night and a REALLY rough morning...It was highly escalated from her norm. But she has been doing well and has been stable all day.

I just need to concoct an overnight plan to make it a little less rough tonight ...which may involve parents staying awake all night and middle of the night breathing treatments for Ellie. She may regret her devious "get out of Halloween plan" after all. #TeenagersThrowTheBiggestFits

Nursing

We have been approved for 8 hours of night nursing per night.  I wish it was 13.

It takes 1.5 hours in the morning to get her ready for the day.

It takes 2 hours to get her ready at night.

That doesn't include baths.

There is not an 8 hour straight block of time that can get her ready for bed at night and get her ready in the morning.

Right now I have the nurse scheduled from 8 PM-4 AM.  This means Ellie is not getting ready for bed until 8 pm and not getting to sleep until 10 or 10:30 (if she gets a bath).

Then she has to start getting ready for school at 5:30 for the bus to come at 7 AM.

7 hours of sleep IS NOT ENOUGH for Ellie.  She needs waaaaaayyyyy more than that.  She needs about 10-12 hours of sleep.

Plus with the nurse leaving at 4 AM...I have to get up at 4 AM to take report from the nurse.  It is really wearing on me

Ideally...
If the nurse could come at 6 PM, Ellie could be asleep by 8:30 PM.  Then the nurse could start getting her ready at 5:30 AM and have her ready for the bus to come at 7 AM.  That would at least give Ellie 9 hours of sleep.  But the nurse would need to be here 13 hours straight.  (Actually if I could split the 8 hours into 4 hours at night and 4 hours in the morning...or even 3 and 3 that would be absolutely ideal).

I have racked my brain trying to think of alternatives using out allotted 8 hour straight shift...

If the nurses came from 6 PM-2 AM then she would miss Young Women's and Special Needs Mutual and Family Night and siblings performances and whatever evening activities we plan.  Ellie would get more sleep, but would miss out on family and church activities.  I would have to get up at 2 AM. (But there is not much difference to me between my current 4 AM and 2 AM).

I could have them come from 10 PM-6 AM.  Ellie would get even less sleep, but I wouldn't have to get up in the middle of the night.

So for now we are settled on 8 PM-4 AM.

Although we approved for nurses every day...there is a huge nursing shortage in Utah.  So this last month we had a nurse 5 nights out of the whole month.

Having it be so sporadic is actually harder than having it every night or having no nurse at all.

It is also an adjustment having someone at the house all night...you can't just go out to the kitchen for a drink of water in your nothings in the middle of the night...ha ha!

But we are trying to get more people hired, so if you know of an LPN or RN in Ogden...please send them our way for our 8 PM-2 AM shift.  They can take 1 shift a month...or make it a full time job.

A cold

So we have been doing the bipap at bight since April.  We have been apprehensive about restarting it because it was leading to recurring pneumonia every 6 weeks.

We have had a few scares (maybe once a month) where she will wake up with lower oxygen saturation in her blood (low 90's instead of her normal high 90's) and elevated heartrate and her breathing will sound junky.

Sometimes these will result in her needing oxygen for the day...but usually not.

Her vitals will be off and she will sound junky for the day.

On days when she sounds junky I have decided (without Dr. approval---honestly I just haven't gotten around to talking to her---but I think she will be OK with it) to not put her bipap on those nights.  I do not want to push the junk down into her lungs.  I want her to be able to cough out the junk.

Usually the next day she will cough up a bunch of stuff throughout the day.

Then her vitals will return to normal.

This plan seems to be working.  We have had no pneumonia's and no extended sicknesses.

Until now.

She has had a summer cold.  It is really frustrating that what is a 2-3 day cold (or even a 4 or 5 day cold) for everyone else takes her over 3 weeks to recuperate.  I don't feel like she is contagious that whole time...the rest of the family doesn't get sick...but she still needs close monitoring and sometimes suctioning and sometimes oxygen.  It drains my limited physical and emotional stores that I have.

We are several weeks into this current cold.  She has needed O2 a few days out of the last few weeks.  But she seems to be almost over it.  Knock on wood.

She just does not have the physical stamina that able-bodied people have.  Plus her lungs are likely damaged from all of her previous pneumonias.  So it takes a long time to recuperate after an attack on her system.

Anyway, we are grateful that she has not gotten sicker than she has.

We still have winter coming up...this is always our worst season.

Respiratory season runs October-April each year.  Anyone who will be around Ellie on a consistent basis should get a yearly flu shot (not nasal mist...get the actual shot).  They are available now...please get one soon.  I agree they are not a perfect solution.  Really smart people with ALOT of education make their best guess as to the flu strains that will be prevalent this year.  They are not always right, but this is the best solution they have come up with so far. You can still get the flu with the flu shot...but your symptoms will be lessened.  If there is any chance that getting the flu shot will help Ellie I will support it 100%.  It doesn't really hurt you and it offers GREAT benefits for us.  PLEASE GET YOUR FLU SHOT!

Surprisingly Well

Ellie is doing surprisingly well after coming home on bipap at night (again).

Remember she did bipap at night for about 10 plus years then we stopped for a year to year and half.

With the bipap she was having recurring pneumonias.  (That is why we stopped).

But off the bipap her left lung was collapsed and she need oxygen all of the time.

So we came home in April with a plan to do bipap again.  We have been doing it faithfully.

It took a while and I was starting to get disheartened...but she has now been off daytime oxygen for a month or more.  That is super news.

So I called pulmonology and asked for a chest xray to see how her lungs were looking.

The xray looks AMAZING!  No collapsed lung.  No spots to worry about.

We are so pleased.

To be perfectly honest I am still worried that any day she will get pneumonia...but so far so good!  Cross fingers.  Hopefully everything doesn't hit he fan when winter rolls around (or before).

When we had a follow-up visit with pulmonology she said that her left lung sounds amazing (yes the previously collapsed lung) but her right lung is actually diminished (the previously better lung).  The right lung sounds clear.  But she just doesn't take as deep of breaths in the right lung.  This is probably due to her scoliosis (curving spine)  Not much we can do without major surgery, if surgery would even help.  (She already has spinal rods from T3 to pelvis).

On another note...we were having MAJOR issues with bed sores (pressure sores) on her coccyx (bottom of tailbone/top of bum area) and under her right rod.  The rods flare out at the bottom and where it flares was one of our trouble spots.

We had 3 weeks straight where she had to lie on her sides 100% of the time to try and get those spots to not be red.  It was bad.  There was no skin breakdown...but the redness would just not go away.

We finally got the spots looking good (after 3 weeks) and we worked our way up to 45 minutes in the wheelchair (she could previously tolerate 90 minutes).

So after the 45 minutes were successful for several days, I tried 90 minutes.  It was too long.  We were back to the same spots being red.

Pressure sores are a bugger.  Once you get one in a certain location on your body, you will always be prone to getting them there FOREVER!  The cells break down and go flat and they never fully heal.  It is like a scar.

After the 90 minutes didn't work, I knew we had to do something.  We can't live with only being able to sit up for 45 minutes.  She has to be able to make it longer than that.

I knew the headrest of her chair was part of the problem.  Her previous headrest had fallen completely apart and was not salvageable.  We were using an old headrest that was just awkward and terrible.  I called the wheelchair shop that we had been working with to get a replacement headrest and they were dragging their feet.  I got them to jump to it...but we were still looking at weeks of waiting for insurance approvals and ordering and shipping time.

I called Shriners and as soon as I mentioned bedsore, they said "can you come in this afternoon?"  I said no, I had plans.  So they got me in the next day.  That is apparently their policy.

When I went to Shriners...they pressure mapped her.  Which she has never had done before.  I told them that she has hated this chair since she got it.  So to pressure map, we removed Ellie from the chair and place a mat in the chair.  Then we sit Ellie on the mat and the computer shows where there is pressure.  It showed majorly bad area...but they were not the areas she was typically getting the red spots.

They completely disassembled her chair.  They installed a new ROHO seat cushion (WHICH IS AMAZING).  A new better supporting back and a new eye-to-eye headrest (the kind she likes and needs).  They did it for free.  They were not even going to charge insurance.  SHRINERS ROCKS!  They had the parts on hand.  They knew how important this was.  They were super knowledgeable.  They took over 2 hours helping us.  They were simply awesome.

Shriners helps kids with orthopedic needs and burns.  Generous sponsors pay all costs that insurance doesn't cover.  No services at Shriners ever costs any money.  Next time you see Shriners asking for money...consider donating.  (Shriners are the ones in the funny hats (fez) with tassels).

With her new seat she is able to tolerate the 90 minutes with out getting sore.  She is doing so much better with her new seating system.

OVERALL...ELLIE IS DOING GREAT!