Day 5 update

Lets see, I think I need to update from Wednesday on.  So on Wednesday Dr. Buchmiller and the plastic surgery team came in and wanted to try this new mechanism that they would place around the omphalocele that would serve two purposes; to pull the skin on either side to stretch it out and to push the omphalocele downwards.  It ended up that there was too much pressure on the omphalocele so they opted for plan B which is the silo method.  Her omphalocele is sutured at the end and tied to a bar hanging over her crib.  Dr. Buchmiller has designed two long tubes that get placed on either side of the omphalocele and are attatched at each end (looks like a barrett) and every day she comes in with ultrasound and they slide the barrett downwards pushing more in.  Ultrasound verifies that the reduction hasn't caused any reduced blood flow to her liver.  So everyday she will be doing this until we're at skin level.  At that point we'll take it from there. 

Gianna is so puffy from all the extra fluid she has in her body.  Mostly from her medications.  They could give her a diuretic to get rid of some of the excess fluid but they don't want to because it would dry out her intenstines.  So Dr. Buchmiller thinks that Gianna may be brought to surgery to cut off the excess skin from the omphalocele and have things at skin level for a little bit have her come off her ventilator and have her start to eat again and wake up and move around...get rid of the excess fluid and then go back to surgery to have everything done.  The plan changes min by min literally though, so I never get my heart set on anything.  You really can only take it day by day.  She could come in this pm and have a completely different plan.  She's the boss and knows what's best so whatever she wants to do she can do it!

Lets see what else...the biggest stress for me lately has been her heart rate spiking indicating that she's uncomfortable.  It's a difficult thing to manage for her...it's almost like she was on a ton of pain meds before and is just not responding well to them now because she has such a tolerance, but to my knowledge she was never on pain meds for a length of time at all.  The other issue is going up too much on these narcotics means a longer withdrawl period trying to wean her off of everything.  At the moment her HR is 119 and that makes me very happy because she is comfortable. 

*VIEWER DISCRETION ADVISED*

 Wednesday

 Friday

Love, Dan Kaite and Gianna