Thursday, October 20, 2011

{Surgery: Day Seven & Eight}

I just didn't expect to be writing a day seven and eight post -- but it is what it is and we are trying to make the best of it.  Things here are just plain old frustrating -- we're not upset with anyone and I'm certainly not   upset with Angela but just simply frustrated that her little body is not allowing her to eat.  After not tolerating her g-tube feeds, which is the tube that goes right into her stomach we decided that she needed her GJ back.  After three separate attempts to place the tube we have had no luck and we are still without the needed J-tube, which would bypass the belly and go right into the intestine.  This is all due to her lack of motility in her belly. She has always had bad motility but due to various reason things have taken a huge turn for the more difficult.

Today Angela was officially switched over to the service Gavin was on.  Ugh so difficult, yet so needed for Angela.  The doc decided to try once again to push feeds though her G- tube.  So far tonight it's just not working.  She is wretching and when we vent her tube all the fluid just pours out -- her belly is just not working. 

We also are going to get with speech tomorrow to look at Angela decline in her swallow ability.  We feel she may need to have a swallow study to check to see if she is aspirating her saliva.  Difficulty swallowing is to be expected after this surgery but we just need to explore the issue so we can help her to get back on track faster.

After another six IV attempts last night the on-call anesthesiologist was able to place a line.  The line is barely hanging in there but we have been told that this line needs to remain as long as possible as there are not many other options that are not more drastic.

Not sure what it looks like for going home.  Angela needs to be able to tolerate some kind of feed.  I just know she is going to turn around soon.  She is feisty and wants to go home just as bad as I do.  Thanks so much for all your prayers and support!


Lisa Marie said...

you are right, ... she wants to go home as much as you do! Keep trying to stay positive and show her your love, I know you always do... she is going to bounce back from this! We are going to pray for a speedy recovery... God bless!

Phyllis said...

Oh gosh Karen. I'm so sorry this has been so difficult physically and emotionally. You have worked so hard and Angela has made so much progress. I can't imagine how difficult these post-surgery glitches are emotionally for your family. I can't wait to see pictures of Angela back in action swinging at the playground. I'm sure your birthday has taken a back seat today but hopefully you will get to celebrate soon.

Team Carter Jay said...

Many MANY prayers being said for you and your sweet girl. I can't even imagine having to go back to the unit where Carter must be so hard. I hope you get some answers soon! <3

Karin W said...

Karen- I was just sent the link to your blog yesterday by a Teacher for the Visually Impaired, specifically for the IPad apps. Of course, I had to read your "story." Your daughter's needs are frighteningly similar to our daughter, Estelle, who is a 3 yr old with CP and CVI. She, also, went through a Nissen & GI tube surgery last Dec that was a disaster. I feel your pain and look forward to your updates filled with progress.

Karen Owens said...

Karin - Docs said no to the Robinol. at least not right now. I guess it can slow motility and plus they are worried it will create a plug and then she will really choke. But it's a med that's on my radar, so I'm hoping in a few week we might try it again.