Swinging

Liam slept for about two weeks straight, with short periods where she woke up, OOOOWWWWW OOOWWWWW OOOOOOWWWWW, got drugs, and went back into the hole.  Earlier this week she finally woke up.  And immediately asked for food - non-stop:  I'm hungry, I'm hungry, I'm hungry  x  500000.  But when we gave her little food, she either vomited it out or complained about more pain.

In order to get a clear picture of the situation, it would take Rachel to write a blog.  I'm telling yall just bits and pieces that I catch as I'm coming off the bench.  But, Rachel's not a writer, she's a doer, so you're stuck with me.

The reader must keep in mind that beneath the stories and the world cup and the lame humor, there's a very sick child who's struggling every second. 

Last night, after I watched two world cup games and before I started my nightly shift at the hospital, we went swimming.  Swimming laps, if you don't know it yet, it one of the best time to think.  Your ears are plugged, your eyes are stuck on the pool's floor, and you're busy trying to get air and manage it.  The mind is not busy with distractions from the outside.  So as I'm swimming there and the girls are jumping from the springboard, the thoughts enter my mind:  I'm having fun, watching the WC, swimming, etc., while Liam is laying there in bed only a mile away, struggling, moaning, and in pain.  It was a difficult thought to process.  Not sure if my eyes went wet or it was the goggles fogging.

I got out of the pool and headed to the hospital.  Found Liam indeed moaning from what looks like inside her sleep.  I called Rachel to get advice.  The advice was decisive:  give her IV Attivan.  But as Liam heard me speaking to Rachel, the moaning stopped at once.  She opened her eyes and was laying there very quietly and aware.  Strange.  And hour later it all returned and the nurse gave her the Attivan.  But the same Attivan that worked so great the night before, didn't do squat now.  Liam was running a fever too.  An hour or two later, deep into the night, we were able to calm her down.  In this experiment the Attivan-Tylenol combo did the trick.  But what am I talking all this medicine talk when the WC is going on?  I know too little about the former and not enough about the latter.

Liam had a few small seizures at the very end of dialysis yesterday.  This might be explained by the fact that they give her Keppra, the anti-seizure medication, gradually during the week.  Then the dialysis cleans it all out in a matter of hours.  Indeed, they increase the doze on dialysis days.  It still may not be enough.  The subject is under testing.

Meanwhile they are also introducing a psychiatric drug to address maybe some anxiety.  And, if nothing else, to see if Liam can be happy again.  This is an oversimplification of the issue, but that is the general idea.  This is still early stages.

(This is half time between Germany and Argentina, so you're getting the skinny regarding medications, etc.)

Another recent trend is that a few of the medicines that were given before via the J-tube, has stopped being absorbed.  They are now giving them more through the IV.  That complicates things a bit as far as discharge goes.  In the past, it was a requirement that we'd be able to give all medication through the G and J tubes.  Only an RN is allowed to give meds through the IV - plus, you need the special syringe pump.  Well, it turns out that maybe we (again, "we" as in Rachel) can taught how to do it and we can be sent home with the equipment.  This remained to be seen.

Salads

Fresh salad:
For me fresh salad is usually associated with home.  The other day, in the hospital room, Rachel chopped some vegetables and prepared a wonderful salad.  Home away from home, I guess.

Doctors salad:
General pediatrics, nephrologists, neurologists, GI's, pulmonologists, pain experts (who admits that when it comes to Liam, they aren't experts at all).  Assortment of nurses and techs.

Medicine salad:
Not sure from where to even begin:  tylenole, attivan, stadol, keppra, atirax, baclophin, neurontin, ....just to name a few.  Probably spelled most of them wrong.

Salad from the Egleston cafeteria:
YAIKES, but sometimes that's the only thing there's to eat.

Salad of people in the hospital hallway:
Big, small, young, old, fat, skinny, and-all-in-between, whites, blacks, orientals, indians, etc.

Salad of sick kids:
Cancer, heart, orthopedic, etc.

Life salad:
With work, the hospital, the world cup and the rest of life, I feel chopped and sliced.

Sports salad:
The world cup, Wimbledon, golf, the Tour De France is around the corner.  I'm stretched thin.

TV salad:
I'm watching the WC from wherever I can:  on the computer, on Univision, at the bar, at friends, at the hospital (on a small TV with "snow"), even at work.


Saturday night mini update
Liam is swinging between being in pain and feeling good.  I know she was screaming before I arrived at 7.  But as she saw me she smiled and joked.  She got in her wheelchair and we walked to the garden.  She was in good spirit the entire time - all 10-15 minutes of it.  But 5 minutes into the garden visit, pain was back.  We drove back to the room, with Liam crying.  After I put her back in bed she continued to swing between good mood and pain.  Around 8-ish it changed to all pain.  That's basically Liam.    It's difficult to answer the question "how is she doing".  Her condition changed by the second from black to white.