Saturday, October 15, 2011

{Surgery Day Three}


So about yesterday -- forget everything I said that was associated with the word easy.  Actually, that probably just my exhaustion setting in cause truth is Angela is still doing really well.  She has no pain and is her happy spunky and sassy self.  We are experiencing a few bumps but really she is doing just as we would expect.


I jumped the gun in thinking that this would be a stress free visit.  Not that I ever really believed that but as of yesterday morning things were looking pretty darn good. The issues that we are having now  surround her ability to tolerate her tube feedings.  Angela has two issues. One is motility, which causes her stomach to empty poorly and the other is her reflux.  The reflux was reason she had the nissen -- so that she would stop throwing up every time we fed her or even looked at her in the wrong way.  But the poor motility is still there.  Angela did so well on J-tube feeds, but after the nissen was placed the J was pulled and just the g remained.  Her belly just isn't handling the volume.  But there is an answer for that -- just go back to the J for supplemental feeding.  The only issues is that it's a weekend and getting things like that done are very difficult.  So we wait.


The other issue is that we tired to feed Angela today and she is having swallowing issues. To be honest I don't know what in the world she is doing.  It looks like she is vomiting but, obviously not from her belly, but rather it looks like she is holding it in her esophagus and then she wretches it up.  So sad to watch.


Truth is today has been difficult for many reasons.  The main one right now is that I'm just so tired.  I do not sleep here at all.  I know things really stink right now but I'm trying to keep focused on our end goal -- going home and helping Angela to have better quality of life.

For now we just take it second by second and try our best to stay sane.


Holly said...

I'm sorry things aren't moving along as well as yesterday. There is absolutely no problem being hopeful for a quick and easy route home. The let down always stinks though.

I'm not sure if ya'll are trying to bolus feed or continuous feed, but stretching it out over several hours might help the retching. Caleigh does exactly what you are describing, only it's as soon as we push too much through her g-button. She can only handle about 20-30ml at a time pushed.

I know there are meds for motility, but we've never had luck with them. One of them actually makes drooling less and makes the kiddo more hungry helping oral feeds. Can't remember the name....

Maybe slow feeds down so that ya'll can get home and then work your way back up to bolus at Angela's own pace?

Brainstorming here, sorry if it's too much. I know the tired. It stinks.

She will get there. We'll be praying for you guys.

Karen Owens said...

Ya. We have tried lots of motility meds. Her issues most Likely are neurological. Right now we are running feeds continous at 40 and it just starts to back up. Ugh. She's on pedi light now at 20 an hour. We'll get there.

Anonymous said...

Is it periactin you are thinking of as the appetite stimulant that decreases the drooling?

Phyllis said...

Things always seem so much worse when I am tired. I will be praying for a good nights sleep for you so you have lots of energy for tomorrow. Sorry it hasn't been smooth sailing but hoping its a minor bump in the road.

Ang said...

Its always such a let down when the good stays turn into the not so good stays! My dd had a similar issue with orals post nissen. The esophagus spasms making her retch. We stopped all orals besides bottles/nursing for a good bit until the angry esophagus stopped freaking out. Apparently its not an unusual response. Good luck and she is such a little fighter!

Kyla said...

My daughter has a g-button and her previously well-controlled reflux has gotten worse recently, as well as her motility. She's not tolerating her feeds as well as she once did. It definitely gets worse when her body is stressed, so maybe once she has recovered more from the surgery, you'll see an improvement in her tolerance. Surgery is stressful for little bodies.