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!