Tuesday, May 21, 2013

NOT a great update...

First of all sorry for the super long amount of time in between updates. I honestly just had too much on my plate with Lilli being so out of sorts (miserable, cranky, clingy...) during all of the medical junk she underwent.

Lilliana had been doing AMAZING! BUT over the last couple of weeks her oxygen levels have slowly drifted downward :( When we were discharged from the U of MN (with the fluid issue) her oxygen levels were staying around 88% (never below 85%). Now she is lucky to hit 85% and is usually 82-83%.... which is about where is was BEFORE her last surgery.

We had an appointment yesterday at the U with an echo... they are not really sure what is going on. It could be several different things.... such as she developed more collateral's (larger and very fast growing ones which are hard to get rid of) or she may be having issues with pulmonary pressure and possibly needs a stint in her pulmonary vein :(

I just feel sick.

We received a call from the U this morning to schedule a heart cath... but I want a second opinion from Boston first and if I have to I will drive Lilli out there!!!

Overall Lilli is so happy and is thriving. The thought of bringing her back into the hospital for more pain hurts me so bad... wish they could do it ALL to me.

Prayers are needed please.