Saturday, April 5, 2014

2 Weeks Post-Op: Progress Made, More to Go

In many ways, the 2nd week post-op was much easier than the first. She caught on to her temporary, new way of eating.  We got in a good routine with taking care of her, putting in the nose stent every time it fell out (over and over and over....), strapping on the arm bands, etc.  Every day we got her out of bed, we could see an improvement in her face.  The swelling has gone way down and the redness from her surgery sight above her lip is barely there, which is remarkable.  The big kids all went back to school after spring break.  All great news. 

Along the way, though, Maggie started to have trouble sleeping. It snuck up on us; at first we just had trouble getting her to go to sleep; then she was also getting up really early. Then naps were fought. Then we had a night where she was awake from 10pm-4am.  She had no symptoms whatsoever, seemed to be in no pain, and was perfectly happy out of her bed.  I spoke to the nurse at our pediatrician's office and she suspected possibly a problem with her tubes, maybe they were clogged causing ear pressure.  I was hoping there was a clear reason for the unusual sleeplessness. Usually our girl is a champion sleeper!  But a trip to the peds left the cause of the sleep issues a mystery- no tube problems or anything else discovered. We tried leaving the nose stent out and it didn't make a difference.  Finally, at 13 days post-op, we tried leaving the arm bands off.   

Bingo.  She slept.

We were close enough to the 2 weeks they had advised for the arm bands that we just quit them cold turkey.  We were so relieved to have her sleeping again!!

But then she had a follow-up visit with a nurse practitioner at the surgeon's office.  Although she thinks she is healing beautifully, we were also reminded that her palate is like "paper mache" and will be very fragile for quite a while still.  Her advice was to keep up with the arm bands for another week or two.  Ugh. She didn't say we had to, but she did say that it would be very easy for Mags to poke a hole in the roof of her mouth with her finger.

So we're kind of flip-flopping back and forth. Sometimes we put them on, but she often gets out of them and then can't sleep and then we're all miserable.  So we're taking it one day at a time and doing the best we can.  

The nurse practitioner also gave her a bigger nose stent yet again; they have to keep increasing the size to keep stretching the skin in her nose, trying to create more skin where it is lacking.  We are finding that the surgeon and his staff are gifted at doing the surgical repairs and being knowledgeable about what kind of care Maggie needs for the best results. However, let's just say they're not so well versed in the REALITY of keeping this piece of slippery plastic stuck in her nose 24 hours a day. Or keeping a magician toddler sleeping in the arm bands all the time.  We've been frustrated at the lack of practical tips and help, and every person we talk to there has a different opinion.  I guess it's just a tricky situation and we've resolved to just do the best we can and pray she's going to be okay.

The dreaded nose stent. The thing is LONG and goes way up into her nose.
 It's got to be miserable. You can see her crying down below, she knows what's coming!

Oddly, even though the nurse practitioner wants her in arm bands still, she also said she now has no diet restrictions. Seems weird to me that they are okay with her eating crackers, pretzels, hard carrots, and the like, and yet want the arm bands on to prevent her fingers in her mouth.  Anyway, we're choosing to continue with her soft foods diet for a while longer. We have an appointment with the surgeon himself in a few weeks; we're going to try to be as cautious as we can until then.  The good news is that she said the lip heals much quicker than the palate, so we can relax a bit about her busting her face and splitting it back open.

We're also back with the Help Me Grow program coming out and working with us on speech and language.  She still only makes a couple consonant and vowel sounds and has no words. So we're working to build her signing skills and exposing her to as much verbal and musical experiences as we can. Easy to do since the kids LOVES music.  She can be found bopping along to any music, any time!

As expected, she has lost probably almost a pound from the surgery.  She's back down to 18.4 lbs.  Such a bummer after working so hard to pack on the pounds!  But the peds said she is doing well and not to worry. Before the surgery she was still on a bottle with formula 4 times a day, in order to promote weight gain as well as bonding.  We had to quit bottles cold turkey for the surgery, so we're trying to move forward with open cups and whole milk instead.  She is not happy about the cup AT ALL. As good as she was drinking in the hospital after surgery, she is now refusing most drinks.  She is happy to drink juice and smoothies, anything sugary, but her doc said it's time to back off of those things and get back onto a healthier diet.  Maggie does not agree with that at all, and for right now is vehemently fighting off milk and water from a cup or a syringe.  Such a stinker!  Thankfully she's getting enough fluids through the baby food packets and other watery foods that we're okay to stand our ground and hope it gets easier soon.  We're very hopeful that at some point she'll be able to learn to use a regular sippy cup on her own rather than need help with an open cup.

So we've made it to 2 weeks post-op, which was a huge, huge victory!!!  Such a weight off our shoulders that the most critical days of her care are behind us.  Overall she has handled things better than we anticipated, and is healing at an amazing speed!  But we have at least a couple more  weeks to go of being very cautious with her palate, limiting her diet and using the arm bands when we can.  And they are also hoping for a good 6-8 weeks total for the nose stent in 24 hours a day.  So we have a ways to go, but we also continuously remind ourselves that while her needs are pretty intense right now, she is so much luckier than so many other kids with long-term and life-long needs.

Lovely arm bands.

A break from caring for our tiny tot to take our "big ones" to 
see the Lego movie and enjoy spring break a bit.

 Looking pretty 9 days after surgery.

Hanging with Uncle Matt.

Park outing.  I'm sure people think she has a broken nose and broken arms. 
Oh the looks we get!

Crazy hair!

My stair steps, before the boys' birthdays.  Last time for them to be 1-3-5-7 years old.  

Loves her Grandpa Tim.

First taste of ice cream for Sam's birthday. 

11 days post-op.  I never DREAMED she would look this good this fast!

Reality.  Sometimes she just needs to be held and house work still calls.

Close-up of her lip repair 2 weeks post-op.  Hard to imagine that 2 weeks prior she was cut completely open; the surgeon detached the skin from under her nostrils, all the way down to the lip and literally opened her up completely.  You can see, though, how her nostrils, especially her right one, collapses down when the nose stent isn't in.

 You can see her teeth; they are by no means perfect and we have years of dental work and more surgeries ahead of us, but we are still rejoicing the fact that she has her top left tooth!!  You can also see that her palate is now closed! Our pediatrician was just astounded at how good it looked. She said it looked like any normal palate, except for the stitches poking out.  What a difference from the huge canyon that was in there 2 weeks ago.

The drool continues... 

Being non-verbal doesn't stop this girl from communicating!

Back at the hospital 15 days post-op for her follow-up visit.  She's such a trooper!

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