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.

Monday, December 18, 2017

7:30am we need to be at CHOP

Getting nervous now.  Will fill you in tomorrow. No food after 11pm not clear liquids after 5:30am.

Preop done

This morning we started off extremely early. The first adventure for Olivia was getting to see the old snow all piled up on the side of the roads. She thought it was super cool and made sure to call and tell Nathan and Delilah all about it before school.

When we arrived at the doctors office, Livi was nervous to say the least. While she doesn't remember the last time she was here, we have shown her lots of pictures and keep reassuring her that she is super strong and can do this. We started with vital signs. In an effort to get the bad "poke" out of the way, we then headed to the lab. She did great and while it wasn't tear free it was short lived. We concluded the next portion with an ekg, a full exam and child life to talk about tomorrow. Livi stepped out for us to sign consents and to talk more about tomorrow with the PA. At this time, we don't have an exact clue as to what is causing her to get blue. The plan is to go in and take a good look around. We also discussed anesthesia options and anything definite will be decided tomorrow with the team.

   The interesting part of today was what we learned during her 6 minute exercise test. She started the test strong and really pushed herself. She did a combo of running, walking, skipping and jogging. She really wasn't about giving up. She did complain halfway that her heart was beeping fast and that she was getting tired but we cheered her onward. At the end, her sats were 78% and her heart rate was 175. She immediately sat down and said my head hurts so bad. She then proceeded to tell us that she gets this every time she plays at recess and has to take breaks. All Brett and I could do was nod and worry about how long we had overlooked the small things.

The plan is to rest and hydrate today. We will hopefully get a phone call with a definite time for tomorrow by 2 today. Keep everyone informed.

Got to Philly

We started yesterday morning off at Star Wars, and it was awesome.  We spent some time with family, said the goodbyes and got to the airport.  She did a good bit of crying saying she is not ready on both flights, she wants to go home.  We are doing our best to console her.  All of our jedi training for being a heart parent is getting put to the test. Now that she is older we are playing this game on expert level, at least trying to.  As I said before we've got nothing to worry about until they tell us to start worrying.  Our biggest worry right now is she better not get sick before the procedure, or they could delay it.  We've worked so hard this past week on the "can't get sick" mission, that all those germs floating around the airplane had me nervous.  Have you ever seen someone with lysol wet wipes wiping down airplane seats, tray tables, windows and the cabin walls?  Well several people saw that last night..... I am not messing around.  8am starts the preop stuff. We'll post later today.

Friday, December 15, 2017

Unfortunately we have a reason to start posting again - heart catheterization

It has been since July 2015 since our last blog post.  The reason is that we’ve been enjoying life with our little lady as though nothing is wrong.  Sure we would go to cardiology appointments and see her usual symptoms but for the most past life has been pretty normal.  Her usual symptoms were heavy breathing with activity (even minor activity), tiring out quicker than other kids, sometimes complaining her heart hurts.  Every cardiology appointment has always ended with her getting rockstar status.  In the past few months we’ve been noticing Olivia slowing down a little more, getting tired quicker, more ornery, more complaining and whining in the mornings.  Her oxygen saturations still are decent never below 86%, sometimes as high as 92% but we feel like it’s trending lower than in the past.  We explained this at our last cardiology appointment and it looks like we bought ourselves a trip to Philadelphia.

About 4.5 to 5 years after the Fontan surgery it is kind of normal to require a heart catheterization.  I feel like she is pretty lucky she hasn’t needed any other interventions or extra medicines since the last surgery.  It is time however, to go in and get her a tuned up. The local cardiologist and our Philly cardiologist aren’t in agreement as to what should be done during this heart cath, but we trust that the best decision will be made by our interventional cardiologist, Dr. Glatz.  The local cardiologist feels she needs to have her fenestration closed, while the Philly card feels that there are more problems that could come with closing the fenestration.  The local card comes from Texas Children’s where they believe in closing fenestrations, but CHOP has been leaving them open.  The CHOP card said we really don’t know what we are doing, there is no clear answer so each center is trying different things to figure out what is best.  That is why we need more research dollars.

Think of the fenestration like a pop-off valve in her heart, and that when the pressures get too high it can release some pressure.  Perhaps her heart has gotten used to using that pop-off valve and so it has never closed by itself, maybe she needs it or doesn’t need it.  Closing it could mean her oxygen saturations could get into the upper 90’s, meaning more oxygenation to her brain, more energy, less tired issues.  However closing it could cause complications that could require surgery, or cause some unspeakable words in the HLHS community (PLE, transplant ).  They do some tests in the middle of the heart cath to see how her circulation will handle the closure of the fenestration.

The other option during the cath is to not close the fenestration, but clean up things or do nothing at all.  Clean up things means that they would coil or plug her collaterals that have formed over time.  If you remember, Olivia, has had quite a history with collaterals.  She has had several plugged since they were so large, and a few coiled.  A collateral is the body’s way of trying to get Olivia more oxygen.  Her body is saying screw this HLHS I’m creating my own pathway to get us more oxygen, think of it like rogue blood vessels.  Sometimes you have good collaterals which help, or bad ones that siphon more blood away.  The larger this network of collaterals gets the worse things get, but it’s a slow process.  After her second open heart surgery a huge collateral formed since the pressures changed so much, and we had to get a cath a few days post-surgery.  It’s pretty crazy.  That is why we are saying tune-up.  Since CHOP isn’t a big proponent of closing fenestrations, they will probably just be coiling and plugging some collaterals.

No matter what if they do an intervention Olivia will be staying overnight in the hospital while they monitor her, if they do nothing then we’ve got some time on our hands to enjoy Philadelphia.  The plan is to be there for 4 days starting this Sunday.  Pre-op stuff is on Monday, Cath Tuesday, and back on Thursday.  Everything is going to go as planned because thinking anything else is not worth thinking about.  During this whole process Melanie has been the worrier and I have been the “nothing is wrong until someone tells me it is wrong.”  We are back in our corners of worrying, and not worrying waiting for all this to play out.

The biggest issue is that Olivia isn’t 3 or 4 years old, or even a baby, a 6 year old knows what is going on.  A 6 year old is scared about what they are going to do and how they are going to do it.  We have been delaying telling her but last night there was no more delaying it.  She has been telling people she is going to Philly to get her heart looked at, and so her dance teacher last night said “I heard you’re going to Philly, what are they going to do?”  I told her a heart cath to tune her up.  On the way back to the car Olivia was like, “what did you tell her, what are they going to do to me.”  She’s known for a week or so that she was going to Philly but we didn’t tell her exactly what was going to happen, just that she would see the doctors.  She also has been bragging to her siblings about having all sorts of mom and dad time just to herself.  It was starting to come together in her mind that it might not be all roses.  In the car she started crying saying she was sad and wanted to know exactly what would happen.  I tried to change the subject but she wasn’t letting it go.  Melanie and I wanted to tell her this weekend but we ended up telling her that night. She wanted it to be a big family talk with her siblings included.

Olivia cried so much with each detail, which included fly to Philly, pre-op appointment, echo gel scan, a walk/run test.  Then even more when we talked about the silly medicine.  She was really pushing for the details of what would happen after the silly medicine.  We focused on the fact that she had done this 4 other times and that she would be okay like all the other times.  We did say that they would be looking at the inside of her heart to see how everything was doing.  She eventually started laughing as we made jokes about all the ice cream she could eat after and all how silly she has been in the past on the silly medicine.

It’s going to be an interesting few days.  On a good note we were able to get a spot at the Ronald McDonald House of Southern New Jersey again.  It’s going to save several hundred bucks in hotel bills.  We’ll update you guys on Monday after all the pre-op stuff.