Tuesday, April 8, 2014

Discharged to followup

Olivia finished all scheduled procedures and was discharged just a few minutes ago. We now head to see her cardiologist Dr. Natarajan. She is super cranky and cant really walk without crashing into things.
   We talked to the cardiologist over the mri study. He recommended we continue to watch one of her pulmonary arteries that goes under her aortic arch. It is normal to be small but hers is one the small side of small. He also said her aortic arch is on the narrow side but with all of the sutures in her veins/arteries from previous surgeries we will have to watch to see if it will grow. The rest of the info from the mri we will get in two/three days. Her echo results we will discuss at this appointment coming up. She has to see someone in ent in 4 weeks.
We had to bribe her with a balloon in order to get her to stop crying. She knows exactly what to do to get her way.

ENT update

Ear tubes are finished and bronchoscopy showed narrowing right below her vocal cords. He couldnt do anything about it now but wants to follow up in six months. He even gave us a copy of the pictures to bring home. Now Olivia is in mri.

Off she goes

They just took her back. She was so good and surprised the whole staff by giving herself her pre-meds. She didnt cry or fuss and took her dolls with hef. Update in a bit.

Rise and shine

We have arrived at CHOP and are waiting to be called back into pre-op. Olivia is in rare form this morning talking it up with everyone from taxi driver to the desk clerks. She is ready to play as she says.

Monday, April 7, 2014

Taxi-ing it up

Olivia is so thrilled she gets to ride in the Kathys, ie taxis. We have really stretched her life experiences.

Finally finished and able to eat lunch

We are finally finished for today. It was a mixed bag of reports which is what it always seems to be with Olivia. The neuro cardiac care program appointment...NCCP... went awesome. They basically told us she is doing spectacular and developmentally is around the age of 3. They even said there was no need to come back to them for anything.
     Then, we went to ENT. We met with a nurse practioner who left the room saying Olivia had a multilayer problem and that thw doctor would be in. Olivia was so tired from thw morning, she fell asleep in my arms while we waited. When Dr. Jacobs came in to see her, he went about asking questions and plugging away. He found that both tubes in her ears are out and need replacing due to infections and fluid. He also did a flexible scope up her nose while Brett and I held her down. He really didn't see much, but heard her breathing. Now she is scheduled for pe tube placement, bronchoscopy, head mri and something else that Brett and I dont know how to say or spell. Worst case is... if they find something in her airway they would balloon dilate it or remove it. This would mean she would have to stay overnight in icu. We shall see.

The day begins

Today we start with a neuro cardiac appointment where we will see every discipline known to man it feels like. Then olivia will see the ENT for a basic appointment. We will let everyone know more as we know.

Sunday, April 6, 2014

Woah... it's been a while

      So today as we head to Philly for follow-up on the Neuro study, I have realized it has been a while since we posted anything. Olivia has been doing great and thriving like no one could have ever expected. She has truly amazed us and her local doctors. She is even fitting in a size bigger than she should be. Her sats are usually in the high 80's to low 90's. Not quite where we wanted them, but she has never really been on the high side when it comes to her oxygen sats. She is exerting her independence and knows how to throw a good hissy fit. Typical 2 year old, some may say. We are loving every minute of watching her grow and interact with her older brother and sister.

     Tonight, we will arrive in Philly with early developmental appointments tomorrow and cardiology visits with the team up there. On Tuesday, she will undergo anesthesia so they can do a brain MRI and a bronchoscopy. She breathes so heavy when she does anything that we are hoping this will give us some answers and maybe even a fix for her. Wednesday, we will spend the majority of the day recuperating and fly home late as long as we don't encounter any bumps. We will update as we know more. While we have some down time I may even get to upload some new pictures.