Thursday, December 21, 2017

Everything's all good heading home

We are on a late flight home now.  We are tired and ready to get home.  Olivia is crazy tired but satting 96%, we are excited to see if she has all sorts of new found energy.  In 4 days she'll have no restrictions for running and jumping. She's not looking forward to it and hates us telling her to stop running or not to pick up things over 5lbs. She's getting used to it.

We are following up with local cardiology Jan 3.  Now we can focus on having a great Christmas and new year.  Thanks for reading and following along.  All the positive thoughts and prayers have been amazing. 

Wednesday, December 20, 2017

Long night with IV itchies

Once we got moved to a room yesterday Olivia was able to relax and try to pass the time.  Nothing eventful happened.  She had a seriously itchy IV.  She couldn't stop obsessing about it, talking about it, saying it hurts.  We would distract her for awhile but it would always come back to it.

We got tons of positive thoughts and prayers from everyone yesterday.  We really appreciated it.  Coworkers, olivia's school friends, parents, family everybody was keeping our girl safe.

Once Melanie left to go back to ronald mcdonald house, Olivia continued with a little crying here and there over her IV.  She finally fell asleep but tossed and turned. She'd sit up and cry about her IV every now and then.  At 2am I told the nurse she had to do something benadryl, change the tape, something.  She changed the tape and then it was the burn from the alcohol wipe.  Once we got past that I laid in bed with her and I fell asleep, I think she did too.

This morning she told melanie I slept all night and she woke up with the nurse a few times.  Nevermind all our activities till 2am.  The night nurse never gets any credit. It's always about the day nurse.

Hopefully we'll get discharged before lunch time and we can do some fun things in Philly tonight.

I'll update you guys as soon as they take out this IV and discharge her.  Thanks again for all the thoughts and prayers.  Hopefully it'll be another 4 years or more till her next cath.

Tuesday, December 19, 2017

30 minute countdown

She is very ready to sit up and move. She's done great sitting still.
Our cardiologist Dr. Natarajan came by and thinks Olivia is going to do great after this.  She said tomorrow midday we'd get discharged.
We've been satting 92 to 95. 

Cath, movie, and a popsicle

She's been sleeping until about 30 minutes ago.  She got woken up by a crying baby. I'm so happy we have graduated to keeping a 6 year old still versus a baby.  At 4:30 she'll be able to move her leg again.

She said she is covered in bobo's. She has a nono arm bracelet on covering up her IV, if she knew an IV was under it she might freak out.

She's just hungry and ready to eat.  The popsicle is good but she just wants to sit up.  The one thing we told her she can't do is the one thing she wants to do. 

Olivia and I are going to spend the night in the hospital so they can monitor her closely.  Melanie is going to stay at the ronald mcdonald house.

That was fast

They closed her fenestration and he was done within an hour. It freaked me out that it was so quick.  He got in there and didn't see any collaterals or other big issues.  He said the fenestration was the only thing causing her to have the desaturations with activity she had been having.  They did a test before they closed it to verify everything would do well with the closure. He said her sats jumped to 95% and was profusing throughout the body well.  Her fontan pressures only increased from 12 to 13, and 12 is an acceptable number.

We are waiting for her to get back to the recovery room and get situated. She should sleep for the next hour and then we'll get some pictures of Popsicles, ice cream and Playdoh.  She was particularly excited about the Playdoh in bed.  She's got 6 hours of laying still time ahead of her.

With the closed fenestration she should have her saturations be more stable when she does activity.  Before she'd drop to 75 now hopefully she'll always remain in the 90s.  At least that is what I am hoping for.  Now we have some other things to worry about like PLE, and pulmonary hypertension but we'll put those concerns deep in the back of our minds.

I'll post another update when she's a weaker and happy.

Met with Glatz

Met with the cath doc, and he mentioned closing her fenestration. The physician's  assistant downplayed it yesterday but Glatz made it sound like it might happen.  Melanie and I think her 6 minute excercise test where her sats dropped to 78% and she got a headache. 

He said he'd check everything and was expecting it to take a few hours. His goal was to have her not drop so low with activity.  Next update in an hour

Just rolled back

Got a lot of cuddles in this morning. She got her CHOP Pj's and took her madazalam (giggle juice), she almost threw it up but we got her playing a little iPad salon game and called her sister.  The distractions got her to calm down.  We got the best anesthesiologist today, white pearls and bright red lipstick.  That's why we come all the way here, because of the great cardiac anesthesia team, and she always does a great job anesthetizing her.

We got a few tears about being hungry, but we were able to distract her. Olivia was all excited about rolling down the hallways, so she was excited when they finally did.  She was playing some connect the dots thinking iPad game as she rode the hallway. Usually kids are out of it from the giggle juice, she was still pretty with it.  Let's hope she was out of it enough to get her IV. 

We are waiting to talk to Dr. Glatz the interventional cardiologist.  Then our first update should be at 10:30.