We went back this November, and he said that it would be ok anytime to schedule the repair procedure. They typically fix them when the kids are 4-5 years old, before they start school, but when they are a little bigger and it's easier to work on the heart. We looked into our insurance coverage and determined that it would save us $900 to get it done in 2014, since we are going to hit our out-of-pocket maximum anyway. So, we consulted with Bob's work schedule and Grandma A. and got it scheduled for December 11th.
So, we got to UNC hospital bright and early on the 11th, only hours after Bob returned from a work trip to Denver. Grandma had gotten here the evening before and was here with Erin. We got checked in on the first floor of the Womens hospital, then waited for Susan, the cath lab nurse, to come get us. She got Anna's height/weight and vitals, then got us situated in one of the two observation rooms in the peds cath lab. The anesthesiologists (one main doctor and a fellow) came to examine her and talk about what they would do, and then we overheard Dr. Robinson talking on the phone about the hospital being completely full and having trouble finding a bed for her to stay overnight (which was the plan; he generally keeps kids overnight to make sure that the device doesn't slip and that there aren't any issues with bleeding. So, he came in and told us that the three options were to reschedule, do the procedure and go home for the night and return the next day, or use an available PICU bed and bill the regular rate. We (and he) voted for the PICU bed, and another nurse in the cath lab called her son who worked in the PICU and got the bed situation straightened out. Then, Dr. Robinson showed us some demo devices (and said that it costs about $6000 just for the 1" device itself!), asked us if we had any more questions, and did a little exam on Anna. Then, we were set to go!
She let the anesthesiologist carry her, her dog Bogie, and Sleep Sack back without any tears, and they came back to report that she went to sleep just fine around 8:30am. She liked the TV screens in the cath lab. We got a snack and waited for awhile, and then the anesthesiology fellow came out around 10:00am saying that it was going well. Then, around 10:45, Dr. Robinson came out and said that he was able to get the device in! We were SO relieved because he had said before that there was a 10-20% chance that the device wouldn't work if the hole was in a bad place or was too big for any of the sizes of device that he had, etc. But, it worked! He said what she actually had (they put a camera down her esophagus to get a good picture and to guide them during the procedure) was many smaller holes instead of one large one - "fenestrated" is the term for that - and that he used a special design of the device that is better suited for that sort of defect. He said it was slightly difficult to find a hole in the correct place that was big enough for him to put the device through such that it would cover all of the holes. He said his colleague who also does this procedure looked at it too and they discussed putting in two smaller devices, but in the end found a good place to put a single 25mm device, which is called an Amplatzer Septal Occluder, of the "multifenestrated" "cribriform" type. Here is some information from the manufacturer: https://health.sjm.com/~/media/SJM%20Health/ASD%20Answers/ASO_ACO_PatientGuide_MM00310_05_2.ashx
He said that they were currently infusing the heparin antidote (Vitamin K), and once that was done, they had to remove the catheter and then hold pressure for about 20 minutes to the site. They made two very small X-shaped incisions in her right groin area; one was for the catheter and the other was an arterial line to measure her blood pressure throughout the procedure. They brought her back out around 11:30am (I think), and she slept for about 30 minutes or so, then woke up very CRANKY with a really red face. She tried to drink some juice, threw up a couple of times, then got some Zofran and slept from about 12:30-1:30pm. The nurse was concerned about her flushed face, but the anesthesiologist said it was probably due to either the IV contrast and/or all the anesthesia meds. The hospitalist pediatricians came in and examined her, asked us some questions, and admitted her to a now-open bed in the 8-bed CICC (children's intermediate cardiac care, I think)/bone marrow transplant unit on the 5th floor. Anna threw up one more time, and then started perking up and the flushing went down, and she was totally back to normal by 2:45pm. Then the fun began of trying to keep her calm! Luckily we didn't have to keep her lying flat by that point.
We moved up to her room between 3:30-4:00pm and got settled there, then Anna was able to get up and walk around to the bathroom (even though she didn't mind using the bedpan in the cath lab), she ate 2 packs of fruit snacks and a cookie, and then we visited the floor play area, which is where we were when Ella and her family visited around 5:30pm. She enjoyed the visit very much!
Then we ordered her dinner, which she mostly just ate fries from, around 7:30pm.
She calmed down and slept from 9:15pm-7:30am! She got 2 doses of antibiotics, and that was it! She was a really easy patient, I think. She had a chocolate muffin, bacon, and yogurt for breakfast, got an EKG, then the doctors made their rounds, and then she got her final echo.
Then, Dr. Robinson came by around 9:30am and said she looked and sounded great - since her device was threaded through such a small hole, there was no risk of it slipping like it can do in a larger hole. We waited for a little bit on the nurse, then got unhooked and out of there by 11:00am!
So, it was quite an adventure, but she really did wonderfully. She was so brave and hardly cried at all ,other than coming out of anesthesia and when the nurse took the tape off of her hand from her IV. We kept asking her if her leg hurt, and she has always said no. Dr. Robinson said it would probably feel like she had a shot in the leg for a few days, but she never said that it hurt. We are so proud of our brave girl, and also equally grateful that this procedure worked! She will take 1/2 of a baby aspirin daily for 6 months and needs to get an antibiotic before any dental work in the next 6 months. Other than that, she is as good - or better - than new! We have a follow-up this Friday, one in 3 more weeks, 6 months, and a year.
Her room doors had the Frozen characters painted on them:
