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.
8 Months Old!
5 years ago