Tuesday, April 7, 2009

Another new tube

Abby's weekend (ambulatory) EEG is over and it was able to capture at least 6 tonic clonic seizures and other questionable behavior.  The doctor should have plenty of data to examine and hopefully we will hear soon what we are dealing with.  Abby seemed rather unhappy most of the weekend and of course tired from all the seizures. 

(Finally happy snuggling with Connie after an hour of fussing in bed)

(Wearing Josiah's batman cap to help keep the wrap on her head)

(Scrubbing the stinky glue out of her hair... she gave some cute smiles)

We enjoyed some fun time with Aunt Connie and (soon to be) Uncle Matt!  The kids loved lots of cuddle time and plenty of extra attention.  Thanks for coming to visit guys!  Can't wait for the wedding!

Well, today we had some unexpected excitement.  Abby's J port came out some time during our transit from UCP therapy and home.  We found her soaked with milk once we got home... she tried to tell us, but of course we were clueless. 

This has happened a few times in the last 6 months and we have been able to "pop" it back into place.  (the tube itself is still in place)  Not this time.  It is broken.  The rest of the afternoon we continued to soak up drainage coming from the open port while we waited several hours for the nurse to call us back.   Finally she called to tell us that she wasn't able to make an appointment yet to have the GJ button replaced.  

Because it was leaking so much we had to take out the entire tube and replace it with a temporary G-tube.  It went fairly smoothly although uncomfortable for Abby.   I always have a moment of inner panic/turmoil during these events, worrying that something might go wrong and cause more pain for my little girl.  Thankfully she is now being fed VERY slowly into her stomach to prevent reflux and dehydration while we wait for a replacement.  

It's been over 1.5 years since we have fed her into her stomach (G port)... she isn't used to it.  The nurse should be calling tomorrow to let us know when her replacement procedure is scheduled.  She will be put to sleep again and won't remember the event.  The IV stick is the worst part for Abby.

Please pray for baby Hunter.  Patrick's cousin and best friend Bill and his wife Shannon just had a beautiful baby boy 3 weeks ago.  He is having tummy problems and might need surgery soon.  Pray for wisdom for parents and docs, as well as a smooth procedure if it is required.