Post-Op Day 3 - AM Update

Thank you for all your comments and messages yesterday.  I really needed them.  When we left the hospital last night, we left with heavy hearts.  I was just so sick about not being able to bring her comfort when you can so clearly see how miserable she feels.  And I was worried how she was going to do through the night.

I called her night nurse three times total - and that is so not like me.  But, she made it through the night without them having to cut the cast and with no breathing distress.  Whew!

Late yesterday we came to a revelation - her expanding middle is probably not due to her overall swelling.  It is most likely her abdomen that is swollen, and since it can't expand outward (because of the cast) it went the only way it could - up into her chest area.  Ouch!

Remember how I fed her 5 ounces of Pediasure yesterday?  Well, that was between 12:00 and 1:00pm.  She didn't get anything else by mouth after that.  Well, at about 6pm, her nurse went to give her some meds through her g-tube.  When she hooked up the tubing, milk came up from her belly.  What?  She got that like 5 or 6 hours ago!  So, she checked her residuals (what was in her belly - by pulling back on a large syringe).  She removed 150mls of Pediasure!  Remember that I fed her 5 ounces?  Well, 150mls equals 5 ounces.  It was still just as white as when it went in.  No breakdown whatsoever.

Oh, how uncomfortable!  Nothing is moving.  And that food just sat there for 5-6 hours!  Ugh!  So, we gave her Miralax.  That's something she's on daily at home.  I've asked for them to give her Miralax several times.  They kept giving me reasons why she shouldn't have it.  I don't know that it would have made a difference.  But, still.  It's so hard to know what's right - do I push what I want (or what makes me feel better) or do I trust the docs?

She was under anesthesia for a long time - from 8:30am till about 4pm.  And that makes it hard for the bowels to wake up and start working right again.  Then, she got tons of pain meds, which slows down the GI system, too.  So, she's probably full of air and nothing is working to get it out of there.  Ugh!

Last night they gave her a glycerin suppository - but nothing happened.  I do think that this morning, she looks a little better.  But, she's sleeping and it could be the position that she's in that makes it look different.  I don't know.

Since she's potty trained, we got a bedpan to have handy.  Hopefully she'll tell us when she has to go potty.  If not, I can already see that we are going to have major struggles trying to keep her cast clean.  If they had cast her leg at a slight angle, it would have been a little better.  But, her right leg is cast straight down and the cast comes so close to her butt.  I don't see how in the world she can go in her diaper and it not get on the cast.  They did the best they could wrapping her cast with something to try to help.  But, I really think the only answer is to get her on the potty somehow.  But she's reclined.  I don't know...

What I can tell you is that the next few weeks (finishing out this hospital stay, getting her home, getting settled into some routine) etc. are going to be HARD.  And it feels pretty overwhelming to tell you the truth.  I guess I have to go back to our old way of thinking.  Back when she was a baby.  One day at a time.

So, the positives so far today are:

1. She's still on trach collar and they did not have to put her back on CPAP (which means continuous positive air pressure, by the way).
2. We found the cause of the "swelling" and that giving her all the diuretics in the world aren't going to help.  In fact, they would probably make it worse by dehydrating her.  They are still watching her numbers closely, so I don't think that would have happened.  And she was still swollen everywhere.  She definitely looks better today as far as that goes.
3. She's on Miralax now and her cast is wrapped as well as it can be for now.  I'm thinking some saran wrap or something might have to be tried.  Hopefully things will start moving and she will find relief and comfort.  
4. She's had several hours at a time of what appears to be good rest through the night.  So, hopefully she'll feel more well-rested today.  

So, hopefully today will bring more positive changes.  For the boys, too!  Murphy was sick yesterday - maybe some stomach bug, since he was throwing up?  And even though he felt better last night, he's already gotten sick this morning.  So, no school for him yesterday or today.  And Cooper didn't have preschool today because it is teacher/parent conferences.  Poor Grandma!  I always wish that things go the best they can so she'll want to come back and help us in the future.  And I hate that Murphy is sick and wants us and we can't be there!  So, please send some good wishes their way, too.

Which reminds me.... Saturday night we were headed out the door to my brother's house for dinner when Murphy said he was feeling sick. We were asking him questions trying to understand what was wrong.

Me:  Murphy, when did you start to feel sick?
Murphy:  When I felt nauseous (looking at me like, DUH!).

Well, they haven't rounded on her yet, so I'll try to update you after that.  Thanks again for all your support.  We've needed it and appreciated it more than you'll ever know!

Much love,
~Christy