Thursday, March 31, 2011

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,


Brittany said...

If ever one day at a time becomes too much, then there's always one hour at a time (or even just the next interaction at a time).

Yay for the positives...I know that the "good" list will get longer and longer! Let me know if there's anything that I can do help out grandma and the boys...we're just around the corner.

Josie Kurz said...

Yay for good news, hope it keeps rolling in today! Poor Harlie, Miralax seems to be an issue in all hospitals. Sydney struggled without it and when they finally gave it to her, things got running again. Amazing what a difference that makes!

I know you feel overwhelmed and with good reason. But we'd all love to help in any way we can!! We'll touch base when you get closer to coming home and see what we can do, but in the meantime, know that we're thinking about you and praying for a smooth recovery!!


Donna said...

Yeay for positives!!!! I hope today gets increasingly better - for everyone.
Please tell MaryAnn to call me if she needs anything - we can take Cooper for a few hours if that will help - and I am more than happy to drop off dinner tonight...just let me know!
Hugs and positive vibes for a good day!

Heather said...

leave it to you to find some Murphy humor in the midst of everything else going crazy. I wish I could fast forward to June when this is all behind you and Harlie's back is healed with no cast. I remember your one day at a time days and as hard as they were, you have been there and you know how to get through. we all love you and will help as much as you let us! so for now. . bring on the Poop!

Sarah Gunn said...

Glad things are looking a little better for Harlie! Hope they keep improving all day. Let me know if I can do anything for the boys. I laughed out loud at Murphy's comment, love it when they state the obvious!!

B-Mama said...

You all are so resilient and creative and hard-working. You are going to do this, even if its an hour at a time like Brittany said.

As far as future potty worries, what if you used Saran wrap then to cover the cast so it doesn't get messy in that area? I know you'll come up with the best solution. But don't even go there yet, just know you'll do it when you need to... One thing at a time, right?!

Big hugs and poop wishes!! :)

Grandma said...

Dear Daughter in law,
I will take care of your children anytime!!!! I like playing nursemaid. Vomit and poopy diapers do not phase me. We are fine. Murphy is playing and running around and eating today..he is on the way to recovery and cooper is fine today...other thab his love of milk 24/7. Glad to hear Harlie is doing a little better.

Anonymous said...

Grandma's forget all that bad stuff as soon as hugs and kisses come around. I know and as soon as possible she will be there with hugs and kisses of her own. She is that terrific. I pray that you can get a little relief in all this. You are all (Harlie, Mom and Dad) are so strong and resilient. And Mom don't you just love when kids give you the Duh look. Prayers and thoughts to all.
Love Ron and Sue

Kim said...

...that brings a whole new meaning to "Go Harlie!"...


Hoping today is the 'hump' and things start to get a little easier from here through the rest of recovery. Even just slightly! :)

Christamae said...

Aw, poor Harlie! I had the exact same tummy problem and it was miserable. Give her a hug for me.

I had a hip spica cast as a baby and my parents have some tricks that kept my cast clean. First they put pieces of tape on the cast all around my butt. Then they stuck pieces of gauze under the edge. Finally they added sanitary napkins on the areas closest to my butt. They are much more absorbent than gauze and you can cut them. Hope that helps.

Thoughts of healing for Harlie and Murphy.


Susan said...

Ugh I just lost my comment. I'm going to e-mail you with some info.