Weathering Verity's First Real Sickness

March was a busy month for Verity! In between her big birthday party and getting her first car, we had an emergency trip to the hospital along with a brief (30-hour) stay in the pediatric unit. The week leading up to Verity's party, a few of our kiddos had been sick with some kind of respiratory junk, the first time in a long time we've really battled anything other than minor sniffles. Thanks to our wellness regimen, we were able to contain things pretty well--the kids who did get sick were better within a couple of days, and we managed to keep them as far away from Verity as possible. I had every diffuser in the house kept busy disseminating our essential oils into the air, and we oiled everyone's feet at night and drank a lot of Thieves tea! It seemed that Verity, Rhema, and I were going to escape unscathed.

But alas, in the end Verity did succumb. Frankly, I'm amazed that she was the last to get sick! Her immune system does not seem fragile at all! But of course it hit over the weekend...our nurse warned us on Friday that she suspected something was coming on, and sure enough, Saturday morning Verity was just not herself. She had a low grade fever Sunday afternoon, and we decided to put her oxygen on for a bit of support. We were hopeful that we could ride it all out at home.

But Sunday night things took a turn for the worse. We were so grateful that we had a nurse on duty overnight! She worked with our oxygen tanks as needed but our supply wasn't enough (we only have 2 tiny tanks because we were prescribed a minimal amount--which we aren't even currently using--to help with OSA). We learned later that one of our valves was faulty, so we had an empty tank we thought was full.

Anyway--by 4am we were making plans to take Verity to the hospital, but before I could collect my thoughts and my things, our nurse told me I needed to call 911 instead. Verity was non-responsive and turning dusky. The EMS team arrived quickly and gave Verity a nebulizer treatment and more oxygen before we strapped her into her car seat and secured that into the ambulance. I rode along with her, and it was obvious that the treatment had helped significantly--she simply sat quietly, looking around!

They never did any testing to find out what respiratory thing she was fighting, but whatever it was, it didn't knock her out too long. We were admitted to the hospital and stayed overnight. Verity slept almost the whole time we were there. We knew she wasn't feeling well because she never fought her cannula! The next morning, though, she was doing well on minimal oxygen (she was only at 1/4L after arriving anyway), so we were discharged with more tanks from our medical supply company and orders to keep her on 1/8L probably for "a couple of weeks."

Three days later, we followed up with her PCM, and after a half-hour trial, we were able to ditch the oxygen! Of course she was heavily monitored, but praise the Lord we never did have to give it to her again. And a follow-up with her pulmonologist a week after that also gave good news--she doesn't think Verity needs to be followed, as her lungs are (and always have been) so clear. However, we did put another follow-up appointment on the schedule just in case the sleep clinic (scheduled for the end of May) doctor decides that Verity should be seen by pulmonology again.

ER Scare

On October 24, as we were eating our dinner, we had one of the most terrifying experiences we've ever had with Verity. We heard her sputtering (a sure sign of reflux and vomiting to come), and before we could do anything, she was spitting up blood out of her mouth while blood shot out of her G-tube, up the extension tubing and into the syringe. As Ted wiped her mouth and tried to calm her, I took a hurried photo and posted it to one of my Trisomy groups, asking what was to be done. Quick responses confirmed out gut feeling: we needed to take her to the ER ASAP! I packed an overnight bag, and we passed the childcare torch to the teenagers (Charis was just returning from a babysitting job herself).

Many people began praying for us as we posted to Verity's page. There are multiple things that could cause bleeding like this, many of which are pretty dire. I sat in the back seat with Verity, trying to keep her awake and praying like crazy. We've made trips to the ER with children before--even with Verity before--but never had I experienced the feeling of such a weighted question hovering unspoken in the air: Would this be goodbye? The beginning of the end? 

We were ushered quickly into a room in the ER, bypassing everyone else in the waiting room. The serious look on the doctor's face only intensified our feelings of dread. It didn't help any that Verity had another bloody coughing episode soon after we got there.

Verity was a little trooper, getting her IV like a champ. She got chest X-rays and a CT scan done, and then we proceeded to wait and answer questions as people came and went. The doctor was on the phone multiple times with a specialist in Denver, and about 3 hours later, we had an answer!

Of all the possibilities, this was an answer we could handle: a nosebleed down the back of the throat! Whew! Poor baby...it made sense, with all the suctioning we have had to do in recent weeks because of her progressively worsening reflux. But oh, it was scary! Everyone assured us we absolutely needed to come in to verify that it wasn't anything worse, but when she was in such good shape and the tests were not showing anything, not even an infection (though we discovered a UTI a few days later, sigh), we were relieved to be able to take our sleepy baby and our tired selves HOME.