Exactly 7 days ago, we were on the beach charging guacamole and virgin pina coladas to room 118 at the Westin Resort in Puerto Vallarta, Mexico. Today, it’s day #4 in room 3139 at Seattle Children’s hospital in the Train zone. I’ve been running upstairs to the cafeteria each morning for my breakfast, poppy seed bagel w/ cream cheese and a Starbuck’s drip coffee for $2.53 … no room charging privileges here.
We were here …
and now we’re here.
It all started with a seemingly harmless cold. Probably a virus picked up from preschool, her siblings, or her nurse uncle. She had the sniffles for a couple of days and a little cough as she always gets at the end of a cold to clear out her lungs. So she spit up A LOT. She spit up all over grandma’s rug and sofa on Super Bowl Sunday. With increase spit-up, you can get an increase in stomach acid to help digest the mucous build-up. On Feb 13, 7 days before our scheduled trip to Mexico, I took her in for an ear and lung check. We also got Zantac prescribed in hopes of alleviating the acid reflux issues. Unfortunately, the Zantac may have made things worse by causing her additional nausea.
February 20 was our departure date for our first ever family vacation since Jennah was born. She had been spitting up for a number of days now, which meant most of her anti-seizure meds were coming up as well. So on the second leg en route to Puerto Vallarta, Jennah had a seizure on the plane. I got to use the airplane-issued barf bags for its intended use for the first time.
The first night in Mexico was a disaster. Jennah proceeded to vomit with every feeding. It was a mess and we ran low on her burp clothes and laundry. I was hand-washing clothes in the sink continuously and our room smelled of sour milk. We had taken 20 cans of formula for the 4-day trip since she is supposed to take 3.5 cans a day and I wanted to be prepared with extra in case we were stranded somewhere. We used 5 cans of the formula and not one of them was completely empty when I threw it out. She took in literally less than 20 ounces of formula over the 4 day period. I tried to give her a few ounces of water as often as was reasonable, but most of that came out as well. Although Jennah’s siblings had a well-deserved, wonderful time in Mexico, I couldn’t wait to head back home.
We arrived home late Friday night and I put a call into her pediatrician’s office the next morning. Perhaps I down-played the situation too well because they suggested that we could wait until Monday to visit her regular Dr. during normal office hours. So we agreed and tried our best to get some fluids into her. She had another tonic seizure that night and was looking very weak and frail the next morning after vomiting out her morning meds and feed. So we decided to take her into the Seattle Children’s urgent care clinic in Bellevue, despite the fact that I was supposed to play in a Sammamish Symphony concert that day. At 2 PM, precisely the same time as the concert downbeat, Jennah was put on IV fluids. After a dose of anti-nausea meds (Zofran), and a bolus of IV fluids, we were released. We got her to hold down a solid 2 ounces of formula. 4 hours later, it all came back up.
On Monday, we went for a follow-up with her regular pediatrician. We tried to push more fluids into her g-tube and got more Zofran. She still vomited relentlessly.
On Tuesday, her pediatrician told us to go to the ER at Seattle Children’s. This time, they decided to admit her since it’s been over a week of persistent vomiting and she was thoroughly dehydrated with no wet diapers in over 6 hours.
The unofficial diagnosis is that Jennah is full of sh!t. She’s severely backed up and the dehydration just exacerbated the whole thing. It’s a common problem among children with cerebral palsy and we do have to regulate her with daily doses of Miralax, but this was apparently not enough. So we’re working on a total bowel cleanse and then we’ll try to work up her feeds until she’s back up to normal intake levels. The problem is she keeps vomiting up the NuLytely solution that is supposed to clean her out and now they’re worried about malnourishment, so we’ll probably start IV/TPN feeds today … joy. This is obviously taking days to accomplish … we anticipate staying throughout the weekend.
So there you have it … I can’t recall a year since 2007 that we haven’t had a stay in the hospital.