Wednesday, March 14, 2012

The days leading up to the Big Day.

We live about 2 hours from Doernbecher's Children's Hospital in Portland, so we knew we'd need to stay a few nights in a motel.  We headed to Portland on Sunday afternoon so we could be at the hospital at 7:30am Monday morning.

We start by checking in at the Pediatric Specialty Clinics on the 7th floor.  Michayla is weighed, measured & got her blood pressure taken.  We're taken to a room where one of the cardiac nurses comes in and talks with us on what to expect.  We are given paperwork to fill out & then speak with a Physician's Assistant who will be with Michayla for the surgery & follow up.

They give her an exam to make sure she's healthy and able to have the surgery.  They want to make sure they don't have any infections, fever, open sores on the chest or tooth issues.  All of these things could be very dangerous with this type of surgery.

The cardiac surgeon then comes in and talks with us to explain the surgery and answer our questions.  He also goes over the risks that accompany this type of surgery.  The risks are actually figured to affect only 2%, so we felt pretty confident that this actually was a safe surgery.

Once the surgeon left, our PA told us that we had one of the best surgeons......with many years of experience.  So that also helps ease our fears.

After our pre-op appointment, we were next sent to the lab for the first round of blood work.  Michayla did really well & fussed for only a minute or so.  She was able to pick a prize from the box when she was done.

We had a short break before our next appointment, so we left the hospital to have lunch.  Unfortunately, Michayla wasn't able to have lunch.  She was going to have sedation later in the day.  I guess I've never mentioned that Michayla is 100% g-tube fed.  She doesn't eat anything orally.  She's also autistic & cognatively a 9-12 month old.  This made things harder on us, because we didn't feel we'd be able to explain to her what was going on.  She's non-vocal, so she wouldn't be able to tell us she's scared or hurting.  So this added to the anxiety we already had.

We returned to the hospital and were given a tour by social services.  A non-medical person, who shows us the ICU rooms, explains that she'll be hooked up to a lot of different machines, shows us where the parent's pantry is, explains we'll be able to stay with her, lets us know about having meals sent to her room during the time she's admitted, answers our questions about what's available to us while she's in the hospital.  They even gave her a doll with a play stethescope & bandaids.

After our tour, we headed over to the main Oregon Health Sciences University Hospital to go to Pediatric Sedation.  We've been here a few times & they even remembered Michayla.  The nurse comes out & puts a special cream on her hands & then covers them with co-ban wrap.  The cream helps numb the skin, which helps the staff when it comes time to put in her IV.  We sit in the lobby for about an hour & then are taken back to her room.

The nurses come in, remove the co-ban & look for a vein to put the IV in.  Unfortunately, this ended up being a hard IV to start.  It took two different people & three tries.  It was heartbreaking to see her being put through that.  Once they got the IV in, the anesthesiologist pushed the propofol & Michayla quickly went to sleep.  At this point, we were asked to go back out to the lobby.  She was getting another echo, a chest xray and her second set of labs.

It was about an hour later that we were able to go back in to see her.  It took quite a while to get her to wake back up.  Once we got her awake, we were able to leave.  It was now after 5pm.  It had been a very long day and we were anxious to get back to the motel for dinner and to hopefully sleep.

Our return time for the big day was 6am.

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