Sunday, January 15, 2012

Back here again...

KayTar is having motility issues again. :(

Last Wednesday and Thursday, she as nauseated at lunchtime. I thought it was probably just from getting back into the school routine, though. Then on Monday morning, as I was leaving the kids' school after helping out in the library for a bit, I was surprised to find KayTar in the clinic! She seemed okay, but was there with tummy pain complaints. She laid down with the warm tummy bunny and chatted with the nurse and me, and bounced off to class not long after feeling better.

That night, I heard her calling me over the monitor and went to check on her. She said, "My meds are leaking on me." (meaning her g-button was open and leaking a little) I felt her shirt and it was soaked! But her button was closed, so it hadn't leaked. I turned her lamp on and was surprised to find her covered in Pediasure! She was insistent that she didn't throw up, so I checked with Josh to be sure everything was plugged in properly when he unhooked her from her feed and turned to pump off, thinking maybe we had fed the bed, but he said everything was plugged in and she was dry when he turned her pump off. The Pediasure was partially processed upon closer inspection, so she clearly vomited, but she didn't wake up or even know it had happened! That makes me super nervous, because if you don't wake up when vomiting, you don't protect your airway! She used to do this, but we usually heard it when it happened (coughing or some signal it had happened) and we had hoped she had outgrown it. Boo.

She had tummy pain at bedtime on Thursday night and again Friday night. Shortly after saying her tummy hurt, she vomited. She threw up undigested food that she had eaten roughly 10.5 HOURS before vomiting. Almost half a day earlier. It was still recognizable; chewed and swallowed, but that was all!

I'm not super thrilled to be seeing the return of dysmotility symptoms so soon. We started her on Augmentin on October 18th and started seeing improvement around the 24th. Things got progressively better through November and by early December she was *almost* back to baseline, the pain had stopped and she was back to normal feed volumes (but not normal rates). We never quite got there, but we were close enough to be pleased with the progress. But here we are mid-January and those old symptoms are back. At her GI appointment, the doctor said that we can go up quite a bit on the Augmentin, which is good, but if it only takes a couple of months for her body to adjust to the medication and subsequently need a higher dose...this probably will not be a long term solution, especially if this is a progressive problem. Of course, without the benefit of a diagnosis, nobody can really tell us if it is disease progression or what to expect down the line. So, we'll just continue to take it a day at a time and try to make the best decisions we can for her, with the information we do have.

For now, I've slowed her feed rate back down, but not had to reduce the volume. I'm also making her take a break from meat, hoping that the effort her gut would need to process that might be better used to process her formula more efficiently. If she continues to struggle this week, I'll put a call into the GI about increasing her Augmentin dose, too.

11 comments:

Becca said...

I'm so sorry to read this... I'm sure you are so frustrated and worried!

~aj~ said...

Boo is right! I hate to hear this. I hope this week will be a better one for her and her tummy. ((HUGS))

C said...

oh no :( that really stinks. Hopefully your doctors figure out something soon.

alejna said...

Oof. Poor sweetie. I hope things get worked out soon.

Clara-Leigh said...

Kyla,
I hope you and the whole 'Tar Clan have a wonderful new year also! Thank you for your sweet comment on my blog. Your energy and compassion amaze me! Thank you for sharing yourself with all of us!! Praying motility behaves and things smooth out very soon.
Clara-Leigh

Sheila @ Dr Cason.org said...

Wow. I know nothing about dysmotity and have not heard of Augmentin being used as a prokinetic but.I know I've heard of.reglan being used in that way. Will you a GI PA you think?? You'd be great at it.

Anonymous said...

feel better soon!

dlefler said...

Oh, ugh. Motility issues SUCK. I hope you can get an increased dose of Augmentin and I hope it works. *hugs*

Sarah said...

yuck. i am sorry to hear this. :(

Katie said...

Sorry Kyla.

It just stinks. Prayers.

Shellye said...

I hate to hear that her motility issues have returned. Praying for a speedy recovery.