On November 2nd, 2017, as we drove home from UCSF Benioff Childrens Hospital, I began a Facebook status to update our family and friends on Addison’s heart procedure.
Yep, Baby Girl aka Baby Squirrel aka Addison Elizabeth.
As I rambled on I figured it would be better suited for the blog. Here it goes:
We were finally discharged at 11pm and are heading home. Addison’s procedure went perfectly, they successfully patched her ASD and PDA, and equalized the pressures in her heart from 3:1 to 1:1.
Everything went smoothly and we were reunited with her in recovery where she was still very sedated to keep her from moving her legs – the procedure was performed via her femoral artery and vein in her groin. She was required to lay still for 6 hours to allow the incision to fully clot, the first 2 hours being the most critical.
Just shy of 2 hours she awoke from sedation during an echocardiogram, and fought back when we tried to keep her legs straight. What we were trying to avoid happening happened – she started bleeding profusely and I had to apply pressure to her incision while her team was called back in to stop the bleeding.
I could only stand back and watch while they took control of the situation. In a stance I mastered in her first year of life. Arms crossed, teeth clenched, blank face, wide-eyed watching, while inside my adrenaline is tearing thru me while I fight my desire for flight.
Pressure was applied for 15 minutes to assure the bleeding stopped and additional sedatives and oxygen were given before a new bandage was applied. After the excitement was over they reassured us that it wasn’t actually that much blood. However, this bleeding restarted her 6 hour observation timer, placing our potential discharge time at ~10:30pm.
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We had to check in at UCSF Benioff Children’s Hospital in San Francisco at 9am that morning, typically a one hour drive from our home but with traffic took almost two. Thankfully it had moved from 6am as originally planned. Addison’s procedure had been scheduled the month before but was rescheduled when she started having a runny nose. The procedure, cardiac catheterization, is an elective procedure and therefore would be rescheduled till a time she was healthy. With cold and flu season upon us we were concerned she wouldn’t be healthy again till next spring.
After the pre-op med kicked in. “I’ll have what she’s having.”
When the time came for the procedure to begin I suited up in a white full-body disposable jumpsuit. [It was actually long enough on my legs to just touch the ground! I need to get that designer’s number.] I carried her in my arms back to the lab; she was completely limp from the initial sedative but looking up at me. I laid her down and held her hand as they secured her safely to the table. While she was still conscious I gave her a kiss on the cheek and signed to her that she was OK and I’d see her soon. She was so relaxed she didn’t even fight the gas mask placed over her face to put her under. I was then escorted back to the pre-op room to gather our things and return to the waiting area.
The cardiology team doesn’t even call it surgery, but rather an invasive procedure. Due to the location of the two different holes in her heart, they had to place a catheter up her femoral artery and vein into her heart. They then send the patching device rolled up tightly up through the catheter and place it using ultrasound imaging and witchcraft.
The procedure was expected to take 3-4 hours; a member of the team called me regularly to give us updates. I had signed a form giving my consent for Addison to be transferred to an OR for open heart surgery if an emergency arose. We tried not to think about that. It was a long wait, I’d only had three hours of sleep the night before. At around 2pm they called me and told me she was done and everything went perfect. Thirty minutes later we were reunited with her in recovery.
After about an hour and 45 minutes, Addison was given an echo at her bedside to check the placement of the devices. Everything still looked great, but then she started waking up…
As painfully slow hours ticked by, we crossed our fingers and toes that she wouldn’t start bleeding again. We knew if she started bleeding again now we would be admitted. We had figured we would be spending the night and came prepared; however, given the option we wanted to go home. As it got later and later we became one of the only patients left and I was fighting to stay awake. Our awesome nurse, James, curtained off the bed next to ours (however there was no bed) and I lined up 3 chairs and laid across them and finally fell asleep for about an hour.
Her team coordinator kept reassuring us that they wouldn’t send her home unless they were completely confident that it was safe for her to leave. The nurses continually checked her pulse around her ankles, her capillary refill in her feet, the temperature in her legs and feet, and for any other signs of blood clots. Every time she would stir and move her legs I would jump like her incisions were a ticking time bomb.
Sedated AF
They weaned back her sedative and she woke up around 9pm.
Waking up
At 10pm a cardiologist gave her one last evaluation and at 10:30pm we were discharged.
They told us that sedation isn’t like real sleep for the brain and even though she “slept” all day she should still sleep well that night. HA! Baby girl was awake the whole drive home – she almost never sleeps in the car. When we got home at midnight we still had to give her all her routine breathing treatments to help prevent her from getting pneumonia from laying on her back all day. It was 2:30am when we finally went to sleep, only to wake up at 4am to Baby Girl laughing hysterically in her crib. *sigh*
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The next day our village came out in full force. One family DoorDash-ed to us bagel sandwiches and yogurt parfaits for breakfast. Another surprised Addison with balloons (which three weeks later are still floating and bringing her joy, minus one. RIP Minnie Mouse.) And many others checked in on her and sent their well wishes which were much appreciated! Thank you to all!
As for recovery, the area was tender and she hated having her bandage changes. A few days later I realized what I thought was the incision was just a bruise and I was putting the sticky part of the bandage on at least one of her actual incisions. =( Sorry! But that is a testament to how nearly invisible her incisions are! On the 2nd day of recovery she began flirting with a low grade fever and we feared the inevitable infection was brewing.
Cuddles mean she’s not feeling her best. But by the 4th day she was good as new!
A week after the procedure Addison had an appointment with her cardiologist at our home hospital. The devices still looked great. The procedure she had to fix the pressures in her heart is the same procedure needed to check the pressures of the heart. Meaning in the previous three years her cardiologist could only make highly educated guesses about the amount of blood crossing over. Turns out the pressures were higher than he thought. 3:1 opposed to 2:1. It’s science. He gave her an A+ and will see her again in six months.
Her incisions one week after.
Momma Swears A Lot 