Benson, Tetralogy of Fallot, Part 3

Coming home was wonderful! However, with coming home with a sick, immunologically challenged baby came new worries, the biggest of which was how to keep him well. Any kind of respiratory illness could easily land him in the hospital. Frequent use of hand sanitizer and staying at home except for the weekly trip to Great Falls for cardiology appointments was put into full force.

When you have a child in school, however, keeping germs away proved MUCH more difficult than we imagined. Soon after we got home, Benson ended up with what started out as a cold. Then the coughing hit. And HARD. I kept Benson right next to me at night in a pack-n-play, and every time he would start coughing, the worry set in. These were not regular coughs, but horrid coughing spells lasting a minute or more. He couldn’t hardly get a breath. And he was turning horrible shades of blue as these coughing spells would happen. The coughing was particularly bad at night, but he also almost always had a coughing fit any time he would wake up. He couldn’t catch his breath. It was terrifying. Once the fit stopped, he was able to return back to normal, but it left Aaron and I both shaken up every single time.

And it didn’t seem to get better with time, either.

The coughing lasted week, after week. And no matter how much we brought it up to our cardiologist or the doctor at the walk in clinic, they didn’t seemed as concerned as we felt they should be. The biggest problem was that he never would cough when we saw the doctors.

The coughing and turning blue made Aaron and I very anxious for Benson to have his heart surgery and get his heart repaired. We wanted it sooner than later. MUCH sooner than later. He was really scaring us with the coughing spells, and we didn’t want a major TET spell (where he would turn blue and go limp. They can be deadly.) We couldn’t wait for the call that told us to pack up and go.

While it remains officially undiagnosed, I suspect very strongly that our little heart-challenged baby had contracted whooping cough. Infants don’t always produce the whooping sound, and Benson didn’t. But the recordings of coughs I heard sounded just like the coughs that Benson had. And the symptoms– cold-like symptoms for a week or two followed by week after week after week of coughing– were dead on what we were experiencing. Scary for a normal baby, terrifying for our little blue-baby!

Finally, towards the end of March, every time I would finish nursing him (he went to full-time nursing sometime the first week of March), he started to have a coughing fit and would throw-up everything he ate. It lasted all day. So I called our Cardiologist, and he had us come down the next day with an overnight bag, just in case. And we were admitted, just in case he got dehydrated.

And he didn’t have but one or two coughing spells.

Go figure.

The coughing eased up after over a month, although it never quite went away, and then towards the end of March we got our much anticipated phone call. April 11th. Benson would be 2 1/2 months old. The surgery would happen. The relief was tangible.

We had a couple of weeks to get things in order– Aaron had a business trip for several days the week before, I needed to get 3 weeks worth of work for Kade, pack our family, clean the house, etc. We decided that this time, our family needed to go down together. Imposing on our Branch to help with the kids for 3 weeks was too much, being apart from each other for 3 weeks again was too much. Being alone through this ordeal was too much. And we had a place to stay, with Aaron’s dad, again. So, we all planned on going.

Things that happened as a family between February 18th (when we got home with Benson) and April 7th (when we left for SLC):

* We arrive home, and Kade promptly gets sick with a stomach bug. He shares it with me.
* I get less sleep than I ever have with a newborn, as I am pumping, feeding, and NOT napping
* We got our first call from school today… some girls were teasing Kade during recess and told him the devil was going to come out of the sidewalk and get him. He was very frightened (lots of tears!) and concerned for himself and for his friends and teachers.
* We bless Benson at church, and have a lot of friends and family come up and celebrate with us. The baby blessing was beautiful. Aaron held up a blue crayon next to Benson’s mouth, and we realized just how blue Benson really was. It made me very nervous and scared. Food was provided by Bountiful Baskets :-)
* We FINALLY got internet at home!
* Benson gets sick, and stays sick.
* He is admitted for one night to monitor his coughing/throwing up. He does neither. :-/
* His surgery is scheduled for April 11th.
*We watched General Conference at home for the first time ever
*We watched the UK/U of L Basketball championship at home, the first basketball game we’ve ever watched at home ever. My Alma mater, UK, won. Of course!
* We got our first major EOB. $65,000.
*Kade turned 6