“Growing like a weed”, an applicable phrase to Mr. Luke these past few months. As I write this, he is four months and 24 days old. Months three and four brought more breweries, the zoo, and lot’s of time at home! Check it out:
Since we last wrote back on July 13, 2020, Luke has come a long way, he now:
- Rolls frequently and vigorously, literally anytime you put him on the ground;
- Has developed an insatiable curiosity. Constant looking around anytime we move to a different room or place;
- Has become a picky eater, anything other than Mom’s breast milk at the perfect temperature is unacceptable;
- Smiles at himself in the mirror;
- Smiles at Mom and Dad frequently;
- Has become ticklish;
- Is trying extremely hard to crawl but still can’t figure out how to get his tummy up off the floor;
- IS STANDING AGAINST OBJECTS WITHOUT ASSITANCE!!! Mom and Dad are terrorized by thought he may become mobile soon;
- Is learning to babble more and yell; and
- Is still not a great night sleeper (up every 2-4 hours).
It hasn’t been without it’s bumps in the road though. If you don’t know, Luke has MCADD, a metabolic disorder that makes him unable to breakdown some types of fat for energy. More info in this blog post if you’re interested, but all you really need to know is Luke can’t fast for more than 4-6 hours because his body can’t effectively utilize his fat stores to keep his organs supplied with energy.
The Bump in the Road
I was at work in the afternoon last Thursday (October 1) when I got a string of texts from Kristin. Luke was throwing up in his car seat while she was in the drive-through.
Babies do spit up frequently and sometimes it’s hard to tell if he’s actually sick or just having a lot of spit up. I pulled up our spreadsheet tracking how much and when Luke has eaten. His morning wasn’t bad, but it also wasn’t great. He had two smaller feeding followed by one large feed. Kristin guessed he spit up most if not all of his last feed. Looking as his chart that would mean between 4AM and 1230PM he’d had only 140mL’s of milk (a little over four ounces). For some perspective, he usually eats 800mL-1000mL a day so only 140mL at 1230PM was worrisome.
Kristin and I agreed she’d drive home to try and feed him. If he could get a good feed in to replace what he vomited, we’d probably be okay. Sitting at my desk, I decided I should call our Nurse Practitioner on Luke’s metabolic team at the University of Minnesota Masonic Children’s. Luckily, she happened to be at her desk and answered right away. It’s a story for another time but our NP is excellent, we are extremely happy to have her on Luke’s care team.
I explained what was going on, how Luke had reduced oral intake and had been vomiting. A bad mix when you can’t breakdown fats for energy. While still on the phone discussing it, I poked my head into my manager’s office and told him something was going on with my kid and I’m headed home. After conferencing Kristin in to get more details, we made the decision to take him to the Children’s Emergency Department at U of M Masonic. By that time I was already on the freeway and about 15 minutes from home. I told Kristin to get him ready and we’d go together.
When I got home his appearance alone was striking, he was completely pale. Kristin said he wouldn’t eat, he’d had diarrhea, more vomiting, and turned pale all in the last 15 minutes. While this might sound somewhat innocuous for a normal kid, for Luke it can be deadly. Once his body runs out of food, without being able to generate ketones from breaking down fat, he’ll use glucose to fuel himself. Eventually he’ll deplete is glucose level to dangerously low levels. This can lead to seizures, coma, and eventually death.
Arriving at the ER we were both able to go in with Luke, unlike last time when only one of us was allowed in due to COVID. Admission was quick, the team at Masonic is familiar with MCADD even though it is fairly rare. After getting vitals they started him on Dextrose to supplement his body while he was unable to eat or keep anything down. After several hours we were admitted to the hospital on the same floor we’d been on back in May – 5th Floor Medical/Surgical.
I’ll spare you all the details of what being in the hospital with a kid is like as I think I covered the well in a previous blog post. We were there with Luke for three nights again. The first two days we were assigned to the Gastrointestinal team in addition to the Metabolic team. They tried to track down what may be causing his vomiting, in the end they settled on it being a viral illness. Once that was settled the goal became to support Luke with IV Dextrose until he stopped vomiting and returned to his normal amount of eating. This took us four days of staying in the hospital, Thursday through Sunday. It was tough but we made it through and were so happy to come home.
Our Metabolic team had prepared us that Luke would be prone to hospitalization while he was little if he got ill and lost his appetite, so I think we were mentally prepared for this to happen. Still, it jarred both Kristin and I to have to watch him be there instead of at home, and at only four months old. Hopefully, if there is a next time, we are even better prepared. Luke is back to his usual happy self and we are happy to be home.
-Matt