Another Year

It took a week to get the tests that Addy needs ordered. But, it finally happened and Monday arrived and I'm happy to say, this time, I don't have a huge blog post about how awful Children's Memorial Hospital is:

As I said, it didn't start out on the right foot. Addy's doctor left CMH and there was a lot of confusion about seeing her in her new private practice versus seeing a new doctor at CMH. We stuck with CMH and have a new pediatric cardiologist. For a week before the appointment, I called every day to make sure the ECHO and EKG were ordered. And they finally were. I realized on Sunday night that I was supposed to pre-register. I go online and get kicked off at the end of the process because it's less than 24 hours before the appointment. Fuck, this is a terrible start.

7:02 am: I call the pre-registration number and have a 2 minute conversation with someone verifying the usual information. WHEW!

8:40 am: waiting for Josie's bus and Addy's having a lot of fun waiting with her big sister. Until she wipes out on the sidewalk and skins her knee. The bus comes and Josie's off. Quick run into the house for an Elmo bandaid and backpack filled with toys.

9:20 am: pull into the parking garage at Children's. There's a spot on the 2nd level. Discussion ensues about whether we're required to go all the way to the top for the bizarre valet-in-the-garage-parking. Nah, there aren't any signs, so I park.

9:25 am: hey, we're not late! There are 2 lines to check in to the hospital and get the appropriate tag. We choose the one that looks faster. Bad choice, there's some kind of problem, but the other line is now long too. Just when I get close to panic level, a woman comes up and gets us the tags we need.

9:30 am: which reception do we check in to? Last time there was a huge issue between Reception C and Reception D. I choose C. I am greeted with a smile and a normal check-in process. While the receptionist takes a photocopy of my insurance card a woman comes up with a book cart. She shows Addy a book about dogs and distracts her while I deal with the check-in. She gives Addy the book.

9:32 am: the waiting room has been stocked with children's toys. Addy sits down at a table and starts to do a puzzle.

9:34 am: a nurse takes us to a room. She does the usual vitals. Addy doesn't like the blood pressure cuff, but gets over it.

9:40 am: the doctor shows up with a student. He asks a million questions about Addy's health like, "does she turn blue", "does she sweat a lot", etc. He does a brief exam while Addy sits on Jake's lap. The EKG tech shows up and the doctor tells her to wait a minute. I figure she'll never come back. The doctor sits at the computer and has the student examine Addy and tell him what he thinks. I hear the words "harsh" "S1", "S2" "harsh" "harsh". I no longer like the word "harsh" and briefly consider its origins. The doctor tells us that obviously the hole is still there and he'll look at the ECHO and EKG to determine if anything has changed. He informs us that he sees teenagers with the same diagnosis and that as long as the heart is not overworking, the hole itself is not necessarily a problem. This is different from what the previous cardiologist told us. She told us that the hole would have to be closed at some point.

9:50 am: I can't believe the EKG tech is in the hallway! She comes in and sets up. Addy is okay with the stickers all over her, but not so thrilled with the cords that have to attach to the stickers. She has to lie still for a minute or so to get a decent reading. I lie on the table and she lies with me. There's a knock on the door and the ECHO tech is told to wait. What is going on here? There's no way he's going to wait. We'll be here all day for sure. The EKG goes quickly -- it actually takes longer to get the stickers off. Addy's not a fan of the sticker removal.

10:00 am: holy shit, the ECHO tech is in the hallway! We gather our stuff and go to the ECHO room. Addy's not happy with this at all. Jake lies down with her and Sesame Street comes on. Addy gets a little wiggly and Jake shows her pictures on his phone. Her tiny feet are cold and I'm handed a sheet. I cover her up and rub her little legs to get her warm. She watches tv, watches the phone, and finally falls asleep. I'm looking at the computer screen and can't figure out a single piece of anatomy of the heart. I ask the tech for some guidance and he clued me in to what I was looking at. I'm fascinated all over again by how complex and mysterious and amazing the human body is. Someone comes in and asks if we would take part in a study of children with VSD's that are similar to Addy's -- not closing on their own, but not needing immediate intervention. It won't help her, but may help others. It's just a couple of ECHO stills that the tech would have to capture anyway. Of course I agree and sign the papers.

10:50 am: the ECHO is done. Addy is not thrilled about being woken up. We go back to reception and end up in the same room as before.

11:00 am: the doctor comes back. There has been no change in the size of the hole. But, even more importantly, there has been no change in the size of the left ventricle. Aside from the hole, her heart is normal. At this time, the risk of the surgery outweighs the risk of leaving the hole. We are told to come back in a year.