Post-Fontan!

Just met with Dr. Spray.  All went well and her heart looked good.  She is extubated and getting situated in her room. We will see her in about 30 minutes.  Overnight is most critical. Keep up the good work, Team Zoe!  It's time to recover!

Fontan update - 2

Just got word that the repair is all done!   She is off bypass and they are closing her up now. We are waiting to talk to Dr. Spray. We should meet with him in about 15-20 minutes.

We'll update again after we talk to Dr. Spray.

Fontan update 1

Just got our first update...surgery started one hour ago and Dr. Spray is already through the scar tissue  and on bypass.  Yes, this is very fast. Typically we get updates every hour, but Zoe's nurse said she didn't even think the whole procedure would even take another hour.

We'll update again soon.

Fontanning

We met with Dr. Spray a few minutes ago.  Zoe is in the OR.  Next update in one hour.  Surgery expected to last 2 hours.  Send all good thoughts and prayers to our little warrior!

Intervention, Scratch That!

We were told to expect our first cath update an hour into the procedure.  At just shy of an hour, they came out to tell us they were done and didn't move forward with any interventions.   Dr. Glatz explained that while the left pulmoary artery was slightly narrowed, it didn't cause any blood flow issues.  He also explained that the pressures from her heart/pulmonary arteries were in the average range, and the percentage of her blood flow travelling through her collateral arteries was slightly lower than last time, thus no need to coil.

Regardless of the lack of intervention, because they performed a cath, Zoe needs to lie flat for 6 hours.  We're three and a half hours in, so just two and a half more to go.  She's doing well, but a little puffy and groggy from the anesthesia.  We had one minor incident with some bleeding from the groin site, but it's ceased.  Right now, she's more concerned about which band aid she has on her neck cath site. 

We'll stay inpatient overnight and Zoe will be prepped for surgery bright and early tomorrow morning.

Please send good thoughts for Zoe to remain comfortable throughout the rest of today and for a successful surgery tomorrow. 

MRI & Cath (is a go)

We just spoke with Dr. Glatz, Zoe's interventional cardiologist, who reviewed the preliminary results of this morning's MRI of Zoe's heart.  He indicated that everything looked good on the MRI, but some slight narrowing of the left pulmonary artery remains; he also saw a decent amount of collaterals.

Zoe's left pulmonary artery has a history of narrowing.  In September of 2010, Dr. Spray performed the hemi-Fontan, instead of the Glenn, since her left pulmonary artery was narrowed, and went ahead and patched the artery to the lung.  Later,  in July of 2011, Dr. Glatz observed further narrowing during a cath and ballooned it open to increase blood flow.  On today's MRI, he didn't think it looked narrowed enough that it would require intervention, but suggested there was a possibility Dr. Spray may want to patch it again tomorrow, which ads a step to the Fontan.  He'll consult with Dr. Spray during the cath, if necessary, once he's inside her pulmonary arteries/heart.  

Because of the amount of presence of collateral vessels, he indicated he planned to go ahead and coil/embolize.  The theory is that by coiling, it lowers the pulmonary pressures, which can lessen the most common side effect of the Fontan, fluid retention in the chest.  

Because of the cath and intervention, Zoe will spend the night in the hospital tonight and have her Fontan first thing in the morning.  She may experience lowered oxygen saturations tonight and low-grade fever due to the coiling.

We'll get the next update in about an hour.

Zoe and Lambsie getting ready for their MRI/Cath

Pre-op and Prepping

It feels like we've been preparing for the Fontan forever.  Since before Zoe was born we knew this day would come.  In the list of options presented to us to treat Zoe's Hypoplastic Left Heart Syndrome was a three staged series of open heart surgeries, culminating in the Fontan.

Most of you know Zoe's Fontan is scheduled for Tuesday, August 13, 2013.

We arrived in Philadelphia on the evening of Thursday, August 8.  Zoe, while being scared to get her "heart fixed," was excited about the journey to Philly.

Spoiled on the plane: Watching Wizard of Diz while getting a foot massage from daddy

On Friday morning, we had Zoe's pre-op appointment.  The appointment consisted of a check of vitals, EKG, echocardiogram, chest x-ray, blood work, and consultations with several researchers regarding ongoing research studies that Zoe qualifies for.   Zoe did great on all of it, but was obviously not a fan of having her blood drawn.  Fortunately, we saved that for last and they got all the blood needed on one stick.  

Afterwards we asked Zoe what she wanted for lunch, "mac & cheese and frenchies (french fries)."  So we walked into Center City to get Zoe her requested lunch.  While we were eating, a lightening and thunderstorm started.  We took our time eating hoping the storm would move on.  When the sun popped out, we decided to make a break for it and head back to our hotel.  On the way back, the rain returned and we got a nice shower (we're Arizonans and don't know what umbrellas are).  On the bright side, it was nice and cool for the remainder of our walk.

On Saturday, we met up with Stacie and Tommy Jackley, who live near CHOP, and have a little man, Kellen, who has the same heart condition as Zoe.

We ate lunch at Max Brenner's and topped off the lunch with a giant syringe of warm chocolate, served with powdered sugar, and gummy bears.

Deep conversation over a bowl of waffle fries.

 After lunch, the kids played in the Rittnehouse Square Park.

It was a fun day that kept Zoe happy and mommy and daddy distracted from the upcoming surgery.   Today we plan to have brunch at one of our favorite Philly restaurants, do lots of walking, and again try to stay somewhat distracted, to the extent possible, from the events of this upcoming week.

Speaking of those events, we will report to CHOP at 5:30 a.m. on Monday morning.  They will prepare Zoe for general anesthesia and once she's under, she'll have a cardiac MRI of her heart, which will provide clear pictures of the heart to assist Dr. Spray for the Fontan surgery.  Dr. Glatz, Zoe's interventional cardiologist at CHOP, indicated that immediately after the MRI, while Zoe is still under anesthesia, he may perform a cardiac catherterization.  He indicated that he will only do the cath, under a couple of scenarios: 1) If he feels like they need to measure the pressures in the heart (which the MRI can't do); 2) if there is some narrowing of Zoe's aortic arch, in which case he would go in and balloon (angioplasty) the arch, to allow for better flow; or 3) if they see a decent amount of collateral vessels that are affecting blood flow, he will go in and coil or embolize the extra vessels, which recent studies have shown, if done, can improve recovery from the Fontan surgery.  Given the amount of collateral vessels present in Zoe in July of 2011, when she had her last catherterization procedure, it is likely that they will want to perform some coiling tomorrow.

Off for one more day of fun, and hopefully a good night's sleep before we get serious on Monday. We'll be at CHOP bright and early and once the MRI is over and we find out if they want to cath Zoe, we'll update the blog.   In the meantime, please keep sending Zoe positive energy and keep her in your thoughts and prayers.