Saturday, January 19, 2013

Long days

On Tuesday this week Sarah had surgery.  This was the long awaited hand/palate/ear surgery!  We were very excited.  It took seven and a half hours for the three surgeons to do their thing- and there were no complications.

The ears needed a little help draining fluid, and so she has tubes in her ears.  This is a fifteen minute procedure done under sedation.  It is common, and usually outpatient.

Sarah had a cleft palate.  It was relatively uncomplicated.  This is never outpatient, because if there is swelling, as is common after surgery, it would be in the mouth and obviously that is dangerous.  Generally, an overnight stay in the hospital to watch is expected.

Sarah had the first of three syndactyly release surgeries.  That just means they are separating her fingers.  They released her thumb and pinkie.  This is not a simple surgery and the recovery stinks.  This is the one of Sarah's three which took the most time.  Our surgeon said that this is sometimes outpatient (!) but not with Sarah because she has so much else going on.  Even without the cleft palate surgery we would have expected to stay a couple nights in the hospital.

The surgeries went well.  The surgeons were pleased.  We were pleased.  Then the anesthesia team went to take out her breathing tube, and they couldn't.  Sarah was not breathing well enough on her own.  So, we went to the ICU, expecting to stay overnight and extubate in the morning.  She just needed a little time.  After all, a seven hour surgery is quite a stress on the whole body.

Four days later, we are still in the ICU.  Sarah is still intubated.  And now, Sarah has been diagnosed with pneumonia.  When kids (maybe adults, I have no idea) are intubated, they have to sedate them to keep them safe and comfortable.  It does not feel good to have a tube down your throat, but if she pulls at it, she will not breathe.  The problem is, that the medications that they give for sedation also depress respiratory drive- the drugs that make the tube safe and tolerable also make it harder to wean off support.

We have been around this block before with Sarah.

She has an amazing team of doctors and nurses here in the PICU.  Many of them remember her from previous stays.

The good news is that Sarah looks great!  Her pretty pink cheeks are back to normal size.  She wakes up and looks around.  Since she is intubated, she cannot talk, but she smiles around the tube.  And her eyes light up when she is happy.  She is alert and seemingly pretty happy.  Her heart rate has come down from crazy land into a normal range, so I think that her pain is under control.

The bad news, of course, is that she will be intubated until she shows us that she is ready to breathe on her own.  Status quo?  She is doing very little on her own.  She has pneumonia, which will slow things down and make her feel miserable.  She has a fever, which is manageable  but only with both Motrin and Tylenol on board.  She is having some trouble tolerating her food.  It is not out of the ordinary.  Again, those same meds that kill the pain also slow everything down, including digestion.  So, we are medicating side effects of medication.

But, it is working.  She is not in pain.  She is getting better.  She is making a little progress each day.  Every day since the surgery, it has been the optimistic hope of the medical team to extubate the following day.  Now I think they actually have a handle on her.  Her progression is slow, not normal.  If we push her, she gets worse not better.  Because of her history she needs more pain medication than one would expect for a child her size.  The X-rays look a little better every day.  She needs a little less breathing support every day.  She is not ready to pull back on pain medication.  These are the little lessons that are actually huge.

Hopefully she will be breathing on her own within just a few days and go home shortly thereafter.

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