First off -- Surgery was pushed back to May 14, 2013 from this Thursday March 14, 2013 due to her vomiting issues. Dr. Rubenstein said he wants to get to the bottom of why she's vomiting occasionally after eating. She will get a severe pain in her tummy then vomit. We were suppose to see her GI Specialist yesterday but she had to reschedule until April 9th. So, in the meantime Dr. Rubenstein upped her Prevacid with the hopes that that will help a little until we see her GI doctor in a few weeks. Fingers crossed.
Secondly -- she did NOT gain any weight between December and yesterday. That was the first time in six years that she did not any weight. Dr. Rubenstein said it may be from her vomiting. He wasn't concerned about it. We are going to check her weight again on April 9th. And go from there. Hopefully she gains and doesn't lose weight.
Lastly -- She needs the tubes put in her ears. Her ENT said that the constant fluid and pressure in her ears causes a chain reaction effect of infections. It starts as an ear infection which causes a sinus infection which in return causes a lung infection and tons of antibiotics! She has significant hearing loss in her left ear from the amount of infections and perforations that she has had in that ear. Both of her ear drums are always retracted. Dr. Rizzi is pretty hopeful that something as minor as tubes in her ears will help eliminate some of her ear and sinus infections. It won't fix the problem completely but it will help some.
Everything is scheduled and ready for her procedures in May. However, Dr. Rubenstein said that with the sign of the slightest pulmonary complication (cough, fever, runny nose. Any sign of a cold) she will be admitted for 14 days prior to the procedure to ensure she's well enough then she will remain inpatient for 3 additional days afterwards. So, from now until the morning of the procedures he wants her doing her vest and nebs 4 times a day to be on top of everything and try to keep her as well as possible. Fingers crossed that she doesn't catch anything or become sick so everything isn't derailed.
Oh and last but not least her PFT's were 111%!!!!!!!!!!!!! Woohoo! Seeing those numbers makes the sleepless nights, hours of neb and vest treatments and a screaming defiant six year old worth the fight and tears!!!
So all in all she had a fairly good checkup despite her surgery being pushed back again! God is so good!
Thank you everyone for the continued support, love and prayers!
