The good news this week has been great!

Sarah had an EEG that showed nothing out of the ordinary- she is not having seizures after last week's event.  She had an MRI that was clear.  There is no swelling or bleeding or damage in her brain from last week's event.  She successfully rid herself of her breathing tube.

The bad news has been very difficult.  When she self-extubated, she did not transition straight to room air.  She was put on a machine which pushes air in through her nose.  You choose the "flow" and the percent of oxygen given.  The air we breathe, room air, is about 21% Oxygen, so that is the goal.  But if you can get the flow down to 5 liters per minute, (pretty sure about the number) you can switch to a regular nasal canula.  That transition is important because it comes with a get-out-of-the-ICU-barring-other-issues card.  Sarah was at 100% oxygen and 14 liters.

It has been a roller coaster of ups and downs on rates and treatments and flow for the past few days.  Physical therapy came and moved her around, which was good for her muscles, but also helped her to move stuff around in her lungs.  A few good coughs and she looked better than she had looked in days.  So, the rate and flow came down.  But then she needed help, so back up.  And down.  And up.  Yesterday it looked as though she was finally on a slow, but steady path upwards.  She had a great night last night.  She had a great morning.  Things were so good that Josh, Lily and I spent three hours together out of the hospital.  We did not do much, we just enjoyed our time together.

When we returned, Sarah was struggling.  Her doctors were clustered around a computer outside of her room looking concerned.  Apparently, she had started to have some trouble.  Re-positioning, which had worked well before, had no effect.  Her breathing was labored.  Her oxygen saturation was too low for comfort, and it was dropping.  They got an x-ray in a hurry.  So when we showed up, they were looking at a picture of a collapsed lung.

This was probably caused by a mucus plug.  She had a lot of gross stuff, as we knew.  (Boogers, as Lily explains.  "Why are you calling other things, Mom?  Its just lots of boogers.")  But if she cannot clear it our, her body still needs air.  We have to get air in.

The doctors think that it is likely she will need to be re-intubated.  Knowing her history, and what an enormous set-back that is, they will try everything else first.  In fact, they had already tried almost everything else.  Last resort: bi-pap.  This is a mask over her nose and mouth that pushes air in.  It is not just an oxygen mask, it is a closed and pressurized system.  It can measure how much pressure and how much air it takes to fill her lungs.  It is pretty cool.  Since Sarah is a mouth breather and the nasal cannula is not working, we have high hopes.  But there is a drawback, and it is a big one.  You cannot suction.  She will have to manage her secretions with out help or the bi-pap won't work.

They are going to watch closely.  If she gets worse, intubation.  If the blood work shows that the gases in her blood are not well balanced, intubation.  If the repeat x-ray two hours after she starts on bi-pap does not show significant improvement, intubation.

I made the respiratory tech show me the x-ray as soon as he could.  I was not going to wait until a busy ICU doctor could come explain it.  He said, "You may do a happy dance, if you like!"  !!

It is not an x-ray that would inspire a happy dance under most circumstances.  But it is a marked improvement.  No intubation tonight.

We are not out of the woods by any means.  Intubation is still on the table if she gets worse or does not get better.  And if intubation, then tracheostomy is on the table as well.  We will get Miss Sarah whatever she needs, of course, and if she needs a trache, that will happen. It is something we hope not to need.

We are trying not to be discouraged.  We are clinging to the small successes, even when they seem immediately followed by setbacks.  We are asking for your prayers.

"May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit."  Romans 15:13

I was singing to Sarah tonight, who seemed a little afraid of this noisy new machine.  She wants to rub her face, as she often does when she gets tired.  She was looking helplessly at me.  It was very sweet and very pitiful.  So I sang and I held her hands.  When I let go of her hands to comb my fingers through her hair and stroke her cheeks and forehead, she lifted both hands and conducted.  That's my girl!  My brave and wonderful baby still loves her music.

Then a respiratory tech came in to mess around with the machine and I asked if she would say hello.  She looked at me and shook her head no, emphatically.

These are little things, but we love the little things.  She is herself, and not so very discouraged.  I can take courage in that.