Friday, April 19, 2013

Home safe and sound

We got home yesterday around 11am and quickly went back to our normal routine. Olivia was so excited to see Dora on the big TV and all of her toys. Last night was a little rough because we hadn't given her pain meds much yesterday. As much as she is used to being uncomfortable, we really don't like when she hurts. Advil and tylenol saved the day and she was fast asleep.

Wednesday, April 17, 2013


Olivia after being discharged wanted to spice it up a little. We were trying to finish the last of the research stuff when her ear started bleeding. We called ent and went to the clinic. The doctor was fabulous and went to her in genetics just to look at her ear. Apparently, she had sutures/ bandages that came off. The solution was as u see below. Unfortunately, we missed the flight home and have to stay until tomorrow morning.

All done

We just got the call from the ent that Olivia is done. They put tubes in both ears. Both ears had fluid with the right side having more. The dermoid cyst was bigger than they thought and adhered to the cartilage. In order to get it out cleanly, they had to remove some cartilage. They put in a pressure dressing that we will have removed on Friday afternoon.


They took her at 8:55 for her tubes. It will take about an hour. Now we wait. As long as all goes well... a flight home tonight is in our future

The verdict from the cath

Sorry... We got so caught up in everything yesterday, we forgot to fill everyone in about the cath results. During the cath, Olivia was great. They were able to get all of the needed pressure readings, saturations, and access to major arteries without a problem. No "new" collaterals were found and the ones that are there haven't grown significantly. Dr. Glatz and Dr. Natarajan both feel like she is outgrowing her Glenn physiology. In an artificial environment.. like the cath lab under anesthesia... her sats were good. When active or upset,  we know she turns into a blueberry with sats as low as 60 sometimes. So, the decision has been made to proceed with the Fontan, surgery number 3, in the summer. In a way, we are relieved everything is okay for now but still worried about what is to come. Even though we should be pros at this by now... my stomach sinks every time they mention the word surgery.
   We will be in good company this summer as it seems to be Fontan time. Maybe we could meet some of the awesome heart families we have grown to know and love on Facebook. We shall see.

Sleeping beauty

    Olivia has been resting comfortably all night. Even in a hospital...this girl can sleep. Later this morning, Olivia is scheduled for pe tubes and an ear cyst removal. She will be npo again but hopefully for not so long. Depending on what ent says, we may be leaving tonight if we get the all clear.
    On a different note, Olivia has been having an irregular heart rate at home when asleep. We noticed it and told our cardiologist which led to a 24 holter monitor. We were then informed that the rhythm she goes into is "completely" normal. It just has a lot of variables to it. Well,  here at Chop she decided to show it off too. The nurses here weren't too concerned either, but elevated the head of the bed, checked a blood pressure, and turned off the bedside monitor. If it were only that easy at home.

Tuesday, April 16, 2013

Pentabarb is not her friend

As a pre-med they give pentabarb to relax the kids and send them off to sleepy land. Olivia had different plans today. She took the Med great but then fought the effects tooth and nail. Finally after getting her sats pretty low... she finally gave in and fell asleep. They took her to the cath lab at 1:55pm ET and we will get an update at 3pm ET.

Tick tock

We checked in and now we wait. We are the second case but don't have a time frame yet. She desperately doesn't want to stay still or in the bed. So we watch Dora and do anything that can keep her mind off snacks.

She is a girl that loves snacks

This morning we have been struggling to keep our snack monster npo. She can't have anything to eat or drink from 7am on. So we have watched cartoons, talked to big brother and sister, Emmie and pops and played with some toys. She is still hopeful we will give in asking for a snack or to eat!!!

Monday, April 15, 2013

The energizer bunny

Today, we have been going non-stop. First, we were at the airport for 4:30am. We arrived to Philadelphia at 10:30am, grabbed our bags and jumped in a taxi. We made it just in time for her cardiology appt. They did her vitals, echo, ekg, and we saw the MD. She sent us to the lab, xray, and cardiac intake center. Then we went to enter. They say she needs pe tubes and her dermoid cyst in her right ear removed before it bursts or gets infected. Then back up to the pulmonary office which said they don't need to see us. So on we went back to the cardiac intake center for consents.
So this is the low down.....Olivia is getting a Cath tomorrow at 9am. Her hemoglobin is 17.5. She needs tubes and a cyst removed but it may not all happen at the same time. She may have the Cath and then the next day have the rest done we are waiting to find out exactly. Not ideal in the least but what can u do???
  Now she is napping and we are waiting for the psychologist to see us at 5:15 for the research study.