What a whirlwind

So. Here we are. I wonder why it is this blog only ever sees attention when I have difficult things to post? We came here Sunday night from Connecticut (after visiting parents on both sides) to participate in a sleep study. We wanted to see if Aurelia had sleep apnea. The test revealed severe apnea, to the point of her oxygen saturation dropping thirty to forty points into the 50s. The results astounded us, making me question my ability to care for Aurelia at home; how could I have overlooked something this dangerous? We gave her oxygen, measured her saturation rates and even monitored her O2 levels daily, so how did we miss sleep apnea this bad?

Little did we know, but babies with terrible apnea often learn to position their bodies optimally for improved breathing. Aurelia's preferred sleeping position was on her side, 3/4 turned, back arched, head back. She subconsciously moved her tongue forward in her palette and minimized the impact of enlarged adenoids every night. During the sleep test, wrapped as she was and forced to lay flat on her back, she sounded like a freight train rumbling on decrepit tracks, squealing under heavy load.

Since 3:00 a.m. that morning we've been reacting to constantly changing circumstances, expectations, assistance, and fears. Monday came and went without any surgery and only the beginnings of a plan to treat Aurelia and Tuesday brought more frustration as plastics, ENT, and cardiology attempted to develop a care plan for our little girl. We did our best as a family to stick together though we all felt completely helpless and unable to control any part of the situation. Jillian and I tried to get organized for what could be a multi-week stay at CHOP, and Madison persevered valiantly, trying to have fun and understand why her sister was so sick and we couldn't go home to see our cats, Ulysses and Shiloh.

Frantically, we canceled therapy and doctor's appointments for this week, made arrangements for friends to care for our cats, secured lodging at the Ronald McDonald House, and convinced Jillian's parents to come down for a few days during and after Aurelia's surgery. We completed these tasks amid ever changing plans for Aurelia. Doctors informed us that Aurelia's care could require weeks at the hospital, that we'd be having one surgery, or two surgeries, maybe repairing her cleft palette, maybe not, maybe looking at a tracheotomy, maybe removing her tonsils, maybe doing nothing, maybe moving her jaw. What registered clearly for us was that until these breathing treatments were resolved, Aurelia would not have her next heart surgery in July.

We trust the care teams at CHOP with our daughter's life, so really we knew that our preparations had to be for the most severe scenario - a two to three week recovery from multiple surgeries leading straight into her next open heart surgery in mid-July, with us getting home sometime right around the beginning of August. I cried, cursing how a stupid sleep test could turn into more than a month away from home. I fumed, infuriated that my family was thrown into tumult with little I could do to restore balance and order.

To make Aurelia's (and Jillian's) time in the cardiac intensive care unit somewhat easier - remember that these rooms are four pods a piece, with limited family members allowed bedside by each patient, I left Philadelphia with Madison Tuesday. To her credit, Madison rallied her spirits here wonderfully, but she is just a bit too loud for promoting appropriate care in an intensive care unit. At home I could both occupy Madison and take care of some loose ends at the house. Jillian remained with Aurelia, focusing her care entirely on our little one as surgery approached.

We went into surgery this morning with a plan in place. Aurelia would have tubes inserted into her ears, her throat and bronchial tubes scoped, her vocal chord paresis examined, her enlarged adenoids trimmed down, and her mandible advanced. The surgery would involve both ENT and Plastics, and last for several hours. Aurelia has come through that surgery wonderfully and now recovers. In future posts, I will talk more about the procedures and some of the people working on Aurelia during this most recent stay here at CHOP.

Time to settle in

And a good morning to everyone from Chocolatetown, USA. Here in Hershey we had an uneventful night punctuated with some PT and suction, and just a bit of tylenol. Aurelia did well last night, her SATs dropping nowhere near to the level they had the night before, and other than a return of her fever (which was very borderline) she made steady improvements.

This morning she is in fine spirits, playing with her toys in her crib, and making friends with today's nursing and doctor teams. We are still in the step down unit and we will likely be here for two more days at least. At rounds this morning we discovered that the rhinovirus she has is going around and giving kids a lot of trouble, setting some up for other infections like pneumonia and RSV if not treated quickly. This made us feel good, obviously, and somewhat vindicated as well. It's hard for people to grasp that even the common cold (what the rhinovirus usually causes) can end up creating situations terribly troubling for CHD kids.

So Aurelia continues to fight, and with a smile while she's at it. The discharge plan for Aurelia will come only after her lungs are fully clear and her secretions drop, and there is no fever. So, at minimum today and tomorrow, maybe longer. Jillian and I will be working to make plans for the week, so we can be sure that we are here to take care of our Sweet Pea.

It’s been too long, and not long enough

So Jillian and I haven’t written in here in a very long time. In some ways we’ve been avoiding this blog – it has a lot of painful and hard memories associated with it, and I think we feared writing in here as well; at least I know I did. To me, writing in here meant that I was at CHOP and Aurelia was not well.
I remember the joy Jillian and I felt when we celebrated our ‘Home” day, where we had been home with Aurelia longer than she was admitted at CHOP. I remember all the times where we looked at each other and one of us said, “We really need to do a blog post.” I remember, too, feeling reluctant about writing anything, because I was at home and that blog was about some mythical past where I was at the hospital.
Well, we’re back at the hospital again, and once more writing for a wider audience. Aurelia has had a series of colds for the last two to three weeks and a few days ago she developed a particularly nasty cough. This worsened until yesterday when she developed a low grade fever. Being a CHD baby with a constellation of other issues the safe and prudent bet was the Hershey ER. We convinced them not to send an ambulance (we were both getting very nervous about this first visit, even though we know that these stays will be all too frequent), and even though we both knew that we’d be admitted, we secretly hoped for a lookover and then home with daily trips for observation.
No such luck. We’ll be here for at least one more day, but I suspect longer. Truly, I’m thinking we’ll be here at the hospital until Aurelia is fully clear of her nasty cough. She’s receiving deep suction, PT, and regular breathing treatments. She’s also on a nasal canula which they attempt to wean throughout the day (with no success). Other than that, it’s life as much as normal allows.
So far we’ve only had to have one chest x-ray, and we’re suspecting an echo at some point today. Thankfully our CHOP cardiologist has an office in Harrisburg, so it’s easy to keep them updated. I’m guessing that Monday will be spent updating the CHOP teams with all that’s currently going on here at Hershey.
The folks here have been wonderful, and very attentive. I’m so thankful for the CHOP parent binder that has so many of Aurelia’s summaries and information inside; it’s been a blessing having that information at our fingertips.
I’m surprised, too, at how quickly our hospital lexicon emerged for this latest stay. I suppose having a CHD child is a bit like riding a medical bicycle where you never really lose what’ you’ve learned.
At any rate, we’ll keep you posted throughout the day, and maybe we’ll get over our reluctance to writing and maintain this blog once we leave here as well.