Cath Over

So the cath is over...sorry for the delayed update, we were talking to the docs and were with Zoe for a bit.

They ended up needing to do some intervention during the cath. Specifically, they had to balloon dialate the left pulmonary artery, which was fairly narrowed. Dr. Glatz was happy with the outcome of the dialation. He also indicated that despite what the last two Echos indicated, the heart function is actually normal. Her aortic arch is also improved from the last cath. Overall, he said the heart looks really good. She does have collaterals, however, he said they are completely on par with what the average hypoplast kid has at this stage. So all in all it is pretty good news. The thing we were most concerned about was the decreased heart function, and the MRI and cath essentially relieved that concern. As of now, she is on pace to have her third planned open heart surgery, the Fontan, at age 3.

She is awake and extubated, but pretty uncomfortable and just vomited all over her bed. We have to make sure she remains still for the next hour and a half, which isn't easy for Zoe, she likes to move.

She will spend tonight in the hospital and have a chest xray and blood work in a few hours. Assuming those tests are normal, she should be discharged in the morning.

We will update again later. Thanks for all the positive, thoughts, energy and prayer.

Second Cath Update

Second Cath Update:

Cath in progress. They are still taking pictures and measuring pressures. No indication of intervention yet. Zoe is still stable under anesthesia.

Next update in an hour.

Cath Update

The informative nurse Alan gave us the following information:

The cath is in and they are taking pictures, she's doing well. Not sure if intervention is warranted. Next update at 11:00 a.m. eastern.

Dr. Glatz explained earlier that if intervention occurs, she will need to spend a night in the hospital. If intervention isn't necessary, after the cath, she will need to lie still, on her back for 6 hours - then we'd likely be discharged.

We'll update again soon.

Cath

We were just told that they are finishing up the MRI and they plan to move forward with a cath.

We will receive our next update at 10:00 a.m. eastern time.

MRI Underway

About an hour ago, anesthesia took Zoe back to get her ready for the MRI. Before she went back she was given Versed to make her drowsy. Once back in the intervention lab, she will be given a IV anesthesia and intubated. The MRI scan itself should take about an hour.

We also just spoke to Dr. Glatz. He explained that he was a bit biased to performing a cath, if nothing else to obtain pressures inside the heart and lungs which can't be obtained via MRI. He said if he had to "guess" he didn't think intervention would be neccesary.

After the MRI, Drs. Szwast (Zoe's CHOP cardiologist), Glatz (Zoe's interventional cardiologist) and Harris (cardiac radiologist) will review the MRI findings and determine whether to move forward with the cath.

We will receive an update shortly.

Zoe's Return to CHOP

Our day started around 11:00 a.m. ET, which is really 8 a.m. MST, giving ourselves limited time to get to CHOP.

Since Zoe was ready for battle we put on her CHD fatigues - camo shorts.

After dressing for battle, we headed to CHOP where Zoe's day began with weight check, sats, BP and EKG.

She cooperated quite well, until halfway through her ECHO when she decided she was over it. When Mr. Tech wanted to get under her chin, she freaked (as usual). After the ECHO, Zoe went for her chest x-ray and blood draw.

We met with Dr. Szwast who told us that Zoe's echo showed several collateral vessels (likely due to smaller pulmonary arteries). There is some flow acceleration in her aortic arch which typically evidences narrowing, however, it doesn't appear narrow on echo and we saw the same presentation on her pre-hemi cath. Nothing could be done then and she doesn't think anything can be done now. So, the plan for tomorrow is this:

Get up at 3:45 for her last drink before her MRI, back to bed for an hour, then wake for a 5:45 a.m. check-in (which is really 2:45 a.m. our time) at CHOP. We'll meet with anesthesia and hand Zoe over for her MRI. During the MRI, Dr. Glatz (Zoe's cath doc) will update us on the findings and whether or not he thinks a cath is looking likely. If the pressures and measurements during MRI are undesirable, they'll take her in for a cath.

During the cath, the procedures may include any of the following: coiling collateral vessels (discussed further below), dilation of her aortic arch and/or dilation or stent placement in her pulmonary arteries. If cath and intervention is needed, Zoe will stay overnight at in the Cardiac Preparation and Recovery Unit (CPRU). If no intervention is needed, we'll be discharged after 6 or so hours.

We had a lengthy discussion with Dr. Szwast regarding the presence of collateral vessels. We learned the following: CHOP is the leading hospital for research regarding assessing collaterals with MRI study. They will quantify the flow of the collaterals and how the flow is affecting the pressures in her heart. If the collaterals are affecting her heart significantly, they will coil them off. However, CHOP does not like to coil if they can avoid it. The coiling can increase pressures in the heart and collaterals almost always grow back (sort of a vicious cycle). If her sats are good (which they are) and her function is not too diminished, then they will leave them untouched. CHOP's research shows that collaterals tend to diminish post-Fontan and function returns to normal. So, that is our hope...

We will have a lot more information tomorrow morning during/post-MRI. We'll keep you updated as much as possible. When you enter the hospital with your little ones, you lose all sense of time and space - time just stands still.

Caleb and I had mixed emotions walking into CHOP this morning. I had visions of when we walked out the front doors of the hospital after Zoe's first discharge. It is so surreal how far she's come over the past year.

Dr. Szwast thought she looked really good today and her liver (which can be enlarged in single ventricle children due to cellular changes) didn't seem enlarged much at all. We're going to reassess Zoe's medications upon discharge tomorrow, depending on the MRI results.

Overall, testing went well and we had a good day. We received some explanation as to Zoe's decreased heart function and increased sats. Tomorrow, we will receive the remaining pieces to the puzzle and hope that she can coast to the Fontan... again, we're told they would like to wait until age 3... if Zoe can hold out that long.

After our long day at CHOP, Zoe was EXHAUSTED! We walked around our old stomping grounds and enjoyed "Baltimore Avenue Dollar Stroll" in perfect weather. We enjoyed $1 ice cream and beer (not at the same time). Zoe napped during our stroll and Caleb and I reminisced about the last time we walked the streets of Philly.

We walked by the Carriage House, through Clark Park and stumbled upon a children's story time; I was pleasantly surprised to see my favorite Amish couple selling their beautiful flowers!

We returned to the hotel and gave Zoe a refreshing bath in the hotel sink.

Since we're getting up early, it is time for bed. For whatever reason, Zoe does not realize she must get up in 6 hours; she's REFUSING to sleep... Time for attempt #3...

Thanks to all of our family and friends for the prayers, positive energy and happy thoughts over the past several days. We're very appreciative and feel extra loved.

Philly Arrival

As many of you know, today we flew from Arizona to Philly for Zoe's MRI and possible cath. Since prior to Zoe's hemi-Fontan surgery, her aortic arch and pulmonary arteries appeared narrowed on echo. During the hemi-Fontan surgery, Dr. Spray patched (widened) the pulmonary arteries. At the most recent cardiology appointment in Phoenix, not only did the aortic arch and pulmonary arteries still appear narrow, but her heart function also decreased from normal to low normal. Given the presence of all three issues, Dr. Stock felt more investigation was appropriate. Thus, our trip to Philly.

We were hoping Zoe would cooperate on the plane ride, and boy did she ever. At first we weren't sure...this was her face immediately after the pilot announced our destination; seriously, it was perfect timing.

After settling in, she did great. Zoe slept for three of the four and a half hours we were in the air. During the flight, we checked her oxygen sats and she came in between 75 and 80, while she was sleeping. Much lower numbers than usual (sending Stacey into a bit of a panic), but lowered sats are to be expected in the high altitude.

Once we arrived in Philly and cabbed to the hotel, we snuck out for dinner. Zoe, the CHOP diva, strolled around like she was back in her old 'hood.

On the walk home (in unexpectedly great weather), we were stopped by a Planned Parenthood advocate. After speaking with her for a few minutes, we learned she is a recent nursing graduate and accepted her first full time nursing position, working in CHOP's PICU. We introduced her to Zoe and told her she is a cardiac kid, here for some testing. She followed up with, "oh, what does she have...Tetralogy of Fallot?" We said, "no, HLHS." A concerned look came across her face and all she said was "oh." Yep, we know how serious it is.

We brought Zoe back to the hotel room and played with her, chased her around, tickled her and explained that she has a big couple of days ahead of her and she needs to be on top of her game. Tomorrow is Zoe's pre-procedure appointment which includes an echo, EKG, blood work, chest x-ray and exam. Friday is the MRI and potential cath. We won't know if a cath is necessary until after the MRI.

While we were playing with Zoe tonight on the bed, we told her if she convinced the docs that all she needed was an MRI, we would do whatever she wanted on Saturday and Sunday.

Let's hope it's a Zoe planned weekend!