Monday, October 26, 2015

A Busy Week


Mama mentioned that Ana was headed for a G-tube placement.  This proceeded successfully on the morning of 21 October.   Ana came out of surgery a bit rougher than last time, in spite of the shorter duration, and had some O2 for an hour or two post-op.  She was on room air by the evening of 21 October and slept well that night.  Feeding was resumed 0800 on 22 October, and Ana vomited up her 125ml morning feed.  She had a distended abdomen, and continued to vomit anything put in her tum.  The G-tube was allowed to vent.  The night of 22-23 October, Ana had an apnea episode with a deeper-than-usual O2 desaturation, and the (jumpy and conservative, to my mind) night nurse & night doc sent us up to PICU for a CPAP machine.  She slept well the remainder of the night.

Here's an aside about PICU - they are great.  They are real nurses dealing with real-deal problems, and if you're there because a recovery nurse got freaked out by a solitary desat and you're doing fine, they are all smiles.  It's easy money, as they say.  In retrospect, going to PICU was the best thing that happened.

Ana had a CPAP the evening of 23-24 October, slept well, and resumed feeds the morning of 24 October, with a soft, normal abdomen, tolerating her feeds very well.  Her feeding reached baseline-continuous levels the evening of the 24th, and she used a home-CPAP machine that night.  She continued to tolerate her feeds through 25 October, and Dr. Papa was pushing for release.  Pulmonology didn't think she needed a CPAP, they wanted to observe her on room-air for a night, but Dr. Papa proposed the compromise solution of a home pulse-ox monitor and discharge that day.  This was accepted, to my great relief. 

Sweet girl was all smiles when she got in the car with her family, and was squealing with delight at being home.  This was pretty much the best. She slept well last night, and alarmed the machine perhaps twice (and it's set at 90%, which is a pretty high trigger point for a known apnoea case).  This morning she was grinning up a storm, and seemed very happy to be back to the routine.  She is a bit of a mean big sister, and grins impishly when the boyos get in trouble... 

  Mama and Ana in recovery.
 Ana in PICU.
Boys coping with chocolate ice cream, evening of 23 Oct.  Not pictured: Papa with ice cream.  (We saved some for Mama).

A few things that surprised us: 

We began by doing day/night shifts, typically with Mama during the day, Papa at night.  This was exhausting, which is not the surprise.  For the last few days, we did 24-hr shifts.  This was surprisingly better. 

PICU people are cool.  This should not have been a surprise, since I knew PICU people were competent to a high degree, but what I did not think about was their generally-excellent people skills, which are almost as necessary as the medical competence.

And finally, evidence is the best argument.  As long as you are sure of the outcome, just quietly doing things that you know are good for your kid is a great way to make progress.  Doctors think about you perhaps once every 24hrs.  Thus, their orders tend to only update daily.  They are also people, making decisions on the best information available to them at the time, subject to conservative guidelines, and often have no sense of financial or family reality.  They are generally knowledgeable people, but they know their field.  I know my daughter.  Ana was not scheduled to receive more than 20ml/hr until 0800 25 October.  This was absurd, since she had good bowel sounds (hunger rumbles), had good stools, had good urine, had no negative indications whatever...  So by the time her scheduled rate increase rolled around, she'd had 13hrs of feed at her target rate.  Voila!  This requires good nurses, though.  Building trust with nurses is key.  No surprise there.

Anyhow, thanks to those who've been praying for us.  We are all home, and things are back to the usual. 

God Bless,

Saturday, October 17, 2015

9 months

9 months already?

The biggest noteworthy event of the previous month was a definite case of separation (from me) anxiety. I totally forgot that this is totally normal for a 9 month old. Ana's on track for something!
For the other big update see my previous post.

A busy week...

We have a busy week coming up!

Mr. Porgies is turning 2...

And miss Braids
Is getting a g-tube!

Maybe I need to eat my words (or have them pumped through a tube), but we are definitely in a place where we are confident that a g-tube is the best next step. It's quite amusing when you stop to think about it what sorts of things get us really pumped as parents of a medically complicated kid.

I'm looking forward to not setting any more NG tubes! Ana has gotten quite agile at yanking them out when she sets her mind to it. Just a couple more days...

Tuesday, October 6, 2015

She is 13, after all

I am considering adding a new sidebar to the blog: Ana's playlist.

It's one of those funny things that shows that she was meant to be in our family; she has strong musical preferences, just like the rest of us. I was trained as a classical harpist, and we make and listen to a lot of music around our house. Ana is never afraid to register her opinion about what's currently playing.

Here are a few examples of some strong Ana preferences:

The Chieftains (Irish folk music) and Mogwai (Scottish post-rock) rarely fail to get a happy scream. The same goes for The Gipsy Kings. Ana wonders why they haven't let her join up yet.

Mahler Symphony V on the other hand caused such wailing and hullabaloo that we thought maybe she was injured or sick. It wasn't until Mogwai came on afterward and her demeanor instantly changed that we realized she just hates ponderous German composers. She likewise was quite dubious of Richard Strauss. 
High church polyphonic chant and Bach both seem to be enjoyable to her, but never get the screams of joy that are reserved for her favorite bands.

She seems to like all live music, but it is still fairly easy to distinguish the hierarchy of "amazing" to "tolerable". She has been helping me choose which harp repertoire to practice, and has pretty good taste.

With Christmas coming up, I expect we will find out how she feels about such things as The Nutcracker and other classics. 

Be looking for a new sidebar documenting Ana's favorite tunes!