Cardiologist Appointment / updates

Yesterday was Olivia’s appointment with the cardiologist.  We last saw her in June.

We drove up early because we wanted to stop in and meet a family that our cardiologist had “referred” to us.  Their daughter had her second heart surgery on Monday.

Since visiting hours aren’t until 10AM we had to do a bit of a song and dance to get into the ICU. We checked in at the front desk and told them we wanted to stop up to say hello to the nursing staff on the floor.  That got us in.

Oh how weird it is to be back at CCMC, especially on the 3rd floor where the PICU is located. Arnie said as soon as we stepped off the elevator he felt his heart jump and his pulse race.  Mine did as well.

We first stopped over at the nursing station and saw Jess (who used to be a night nurse), Kathy (who has been with us every single PICU visit from day 2 of Olivia’s life), Emily and Claire. They all oooh’ed and aaah’ed over Olivia who wasn’t too sure what was going on and kept her “serious” face on the entire time.  Then I asked them if Kim (mom to heart baby Noelle) was available.  She was and we got to peak in on Noelle. Oh, she’s just precious! And Kim was so nice! I wished I could have stayed and chatted but I knew we were pushing our luck and so we scampered out before getting thrown out.

Next was our appointment with Dr. Heller. Oh, how I LOVE this woman!  She was wearing the pin Laura (Lily’s mom) & I got her (three people holding hands with hearts on them).  Olivia looks GREAT. They did an EKG and it was perfect. Olivia didn’t fuss at ALL with all those stickers on her and wires.  Then they weighed her.  21 lbs, 2 oz! And she’s 29″ tall.  She gained 1 lb, 2 oz and grew 3/4″ since July!

Her heart and lungs all sounded great according to Dr. Heller.  She had a hard time getting an oxygen read on her but the machine wasn’t cooperating. Finally we got a read of 83% which is higher than the 80% she read back in June.

Dr. Heller did an echo on Olivia as well. Everything looked great and she noticed “mild regurgitation” from the valve which she said did not worry her.

I asked about the Fontan (3rd surgery) – she said we’re no where near ready to even think about that. She has to be over 30 lbs and she’s just doing great so it’s not even on the horizon.  Music to my ears!!!!

We don’t go back until MARCH of next year! That’s 5 months from now!  And so far out that they don’t have next year’s schedule yet.  I need to call and make the appointment next month.

Clinical Drug Trial (RSV prevention)
We had an appointment with Renee from Clinical Trials to go over the consent form for the Drug Trial for the RSV prevention drug.  That all fell through unfortunately, although it wasn’t for the reason I had expected.

There are two children in the PICU with RSV.  This is very early for RSV season. Normally they don’t start vaccinating until November. (However, Olivia’s first synagis shot was October 18 last year so the season started early last year as well)

The drug company can’t guarantee that they’re going to have the drug trials ready for the week of October 17.  Renee was concerned that Olivia needs to be vaccinated now and not in 2 more weeks (or more depending on how long it takes to get the drugs shipped and ready).

So Renee suggested we start the ball rolling with Dr. Friedman’s office to see if they can get us the shot earlier.  Renee said we’re perfect for the study, however her first priority is keeping Olivia (and all the kids) healthy and out of the PICU for the winter. She felt that was in Olivia’s best interest medically.  Olivia really took to Renee – climbing on her and hugging her. I’m disappointed that they won’t be seeing each other every month, but I completely understand and appreciate Renee’s concern for Olivia’s health which is the number 1 priority of everyone.

So now we’re on the fun rollercoaster of getting the synagis shot approved for another year.  Arnie and I both talked to Dr. Friedman’s office yesterday. And today I spoke with Dr. Friedman’s office, the insurance company and Professional Home Care (who is the supplier of the Synagis).  At this point Professional Home needs to call our insurance company today and we might be able to get Olivia the Synagis as early as next week.

We’re hoping to be able to have the visiting nurse meet one of us at Diana’s (daycare).  It’s very close for either of us to get there and would save some time off from work.  I will have to check with the visiting nurse to make sure that works for them.

More teeth!
Olivia’s finally got all four molars in. She now has 12 teeth! 4 in front and two in back on the top and bottom.

Big girl at daycare

Earlier this week I went to pick up Olivia and was in for a shock.  Olivia had taken a nap with the big kids!  Diana has a bedroom dedicated to the baby’s nap room (has a crib and pack & play in it).  Olivia had been napping in there with Jenna.  However Diana has been having problems with Jenna screaming when she wakes up which then wakes up Olivia.  So Diana decided to try Olivia on the sleeping bag and she’s done exceptionally well! For the meantime Olivia’s using Maddie’s princess sleeping bag but I’ve ordered Olivia a “nap mat” from Lillian Vernon.

Olivia is now demanding that she feed herself everything. We have to bring two spoons to the table – one for Olivia to feed herself and one for us to feed her. She’s growing up so fast!

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