Cath Update #3: Fed!

They took us to a small room in the OR and allowed us to syringe as much Pedialyte as we could before 11:00. Though we couldn't give him an entire feed, at least his belly isn't empty.

Ayden is so wiped!

Cath Update #2: Holding Pattern

We are still waiting in the germ-infested waiting room, and this mama bear is becoming more and more aggravated. Ayden hasn't eaten in five hours, and Bryan's arm is about to fall off from holding him for the past hour. (The stroller no longer makes him happy.) Dr. Janssen came out and told us we had two options: wait or reschedule. PCCU apparently needs to discharge two patients to other areas of the hospital, but that means that those areas have to have availability. Even if we wait, we are not necessarily guaranteed that that will come into fruition. Bryan wants to wait in the hopes that we can get this over with. I just want to feed my kid. I'm trying hard not to be ugly.

Cath Update #1: No Room in the Inn

We were here on time this morning, much to Ayden's dismay.

They woke me up from a perfectly good night's sleep.

Regardless of our timeliness, the hospital currently does not have the PCCU accommodations for Ayden. We will find out around 9:30 whether or not there are discharges that will make available a place for our baby. In the meantime, Ayden is hungry. Bryan is wheeling him around the waiting room in his stroller in the hopes of containing the fussiness.

Before we found out the unfortunate bed issue, Ayden was looking and feeling sporty in his Puma attire (courtesy of Grancee).

I'm learning to smile from my daddy.

Dr. Bichell saw me in the elevator and commented on how "big" I am!

What's Ayden get for turning 4 months old? A catheterization!

Tomorrow, on the day he turns four months old (four months old!), Ayden goes in for his first (and hopefully only) pre-Glenn catheterization, with a little electrophysiology (EP) study thrown in afterward for flavor.  Instead of going to clinic on Monday as usual, we took him in today so we could meet with Dr. Janssen and Dr. Fish to discuss what they will be doing tomorrow.  Our more astute readers will recognize Dr. Fish's name - he is the electrophysiologist who has been treating Ayden's arrhythmia issues.

Ayden also got the usual round of vitals, weighing, etc. (he's up to 13 lbs., 9 ozs. - in other words, he's fat), plus an EKG.  All of that went relatively smoothly, which is to say he only got slightly pissed off.  The real fun began when it was time to draw blood for the lab work needed in preparation for the cath.  Of course, based on what tests were needed, a simple heel prick would not suffice.  Instead, Ayden got his first experience of having blood drawn the regular way: with a needle. (When he was in the hospital, there was always some form of access - a PICC line, and IV, an RA line - that could be used to draw blood.  If only that option had been available today).  Let's just say he did not find the experience to be enjoyable.  He pitched a fit like he never has before, beginning immediately upon the nurse merely starting to tie the elastic band around his arm and not stopping until well after the needle had come out.  She didn't get enough blood for all the tests on the first go round, but he got so upset (he was to the point of shaking) that Drs. Fish and Janssen decided it was best to just get whatever they needed tomorrow during surgery prep, after he's been sedated.

Back to tomorrow.  I don't fully understand all Dr. Janssen will be looking for, but the gist of it is he'll be checking for things that would make the Glenn more difficult, such as extra vessels that could compromise his post-Glenn bloodflow, vessels that aren't yet big and/or strong enough, etc.  Some things he will actually be able to treat tomorrow if he finds them.  Others may indicate Ayden isn't yet ready for the Glenn.  After Dr. Janssen is done, Dr. Fish will take over and do a quick EP study.  There has been no recurrence of SVTs, but since the catheters will already be in there, Dr. Fish wanted to take the opportunity to make sure the extra electrical pathways he ablated a little over two months ago (two months ago!) are not healing and able to conduct again.

If everything goes well and there are no surprises, the whole process should take around 3.5 hours.  We have to be there at 7 a.m. (uggh), so we are hoping Ayden will be up in the PCCU by lunchtime and he will only have to stay in the hospital for observation for one night.  As I have done twice before, I will post updates here tomorrow as we get them, so you can check back over the course of the morning to follow his progress.  Please keep him in your prayers.

"There and Back Again"

This afternoon, we checked Ayden's oxygen saturation.  As happened not that long ago, they came up somewhat low.  Unlike last time, we believed the lower readings (especially after we got the same thing from a second sensor).  We took them while he was sleeping (when sats will tend to be lower).  When he woke up, they were within the acceptable range, but barely.  An hour later, we tried again.  They were still a bit low.  This time, we didn't bother to call the clinic, except to let them know we were on our way after we were already in the car.  (English, Ayden's first doctor - when she was still a resident in the NICU - just happened to be the cardiology fellow on call.  It's very comforting to talk to a familiar voice that is also familiar with Ayden.  We are very happy that she has moved on to the cardiology department now that her residency is over.)  Long story short:  the doctors were not concerned and we are back home.  Basically we were told to expect somewhat lower levels because Ayden is getting closer to his second surgery and because, as he gets bigger, the shunt that allows blood to backflow into his lungs gets comparatively smaller.  As long as he stays above 70, we are apparently okay.

I had planned a separate post about this issue, but I'll simply summarize here given the day's events: although Ayden continues to do well, we are holding our collective breath until surgery #2 has come and gone.  His body is still so delicately balanced.  I rejoice at his health and stability, but I know it can chance at a moment's notice (or worse, without any notice at all).  He just needs to hang on until the Glenn.  Today was a reminder of that.

Ayden did exceptionally well with his visit to the ED.  Despite arriving a little after he was supposed to be fed, he was a happy and talkative baby for a good hour and a half after we arrived.  He handled all of the poking and prodding without lodging a single complaint.  Finally, two hours late, we were able to feed him.  About halfway through his food, he got really pissed off.  It took what seemed like forever to get him calmed down.  Then, 10 minutes later, he pitched the biggest fit of his young life.  Again, it took a long time to calm him (given the already extra work his heart is doing, his tantrums are beyond stressful for me - I always worry that this will be the one to upset that delicate balance).  After realizing he was nothing more than completely exhausted, we basically checked ourselves out so we could get him in the car and asleep (which worked like a charm).

He was so sleepy because we inadvertently woke him up on two different occasions this afternoon from what would have been his big nap of the day (we were checking his sats both times).  Except for a few cat naps, he basically hadn't slept all day, despite my best efforts to comfort him and get him to rest (I think I fell asleep before he did):

Clearly, the whole experience had taken its toll on Ayden by the time we got home tonight:

I've had a rough day.