Day 248 - Electrolytes Too High, Weaning Clonidine, & Changing Feed Rate

September 04, 2021

Saturday, September 4, 2021

Early Morning: James finally had a bowel movement after 24 hours of not going. It was a large one. 💩

James was able to have a FULL NIGHT SLEEP. His heart rate stayed under 100 for 95% of the night. He was relaxed, calm, comfortable (even though his neighbor was crying bloody murder ALL NIGHT).

Morning: James woke up around 7:30a with another large poop. Dad started the morning routine closer to 8am. It begins with soft Disney music for 15-20 minutes. Then open the blinds to let light in. Then play with a few toys. Then CocoMelon for an hour. Then read a book. Then play guitar and sing. Then more CocoMelon. Then toys. Then a nap at noon. (We will see if it sticks 🤷‍♂️)

We had the head of GI come in and briefly examine James. He reviewed a few of the past X-rays and is curious as to what’s causing some much bile to come out of the Gtube. He thinks there may be an obstruction in the duodenum. The past 48 hours at over 600ML of output and in 12 hours only 50ML of urine. James is only getting between 650-700 ML of feed daily. So, it’s concerning how much is still coming out of the gtube into the preemie diaper. This doctor would like to do something called a "small bowel series". A small bowel series is an x-ray examination of the small intestine that uses a special form of x-ray called fluoroscopy and an orally ingested contrast material called barium. This wouldn't take place until Tuesday due to the Labor Day holiday on Monday.

They ordered blood work to check the electrolytes. One of our favorite Phlebotomists did the blood draw on the first attempt. We like how he takes his time and checks both arms. Puts heating pads on both arms. Talks to James. Puts a pacifier in his mouth, and uses the ultrasound for accuracy.

Bloodwork Results: His electrolytes are actually too high. So they discontinued the potassium and sodium chloride.

We are now only have the following meds.

Clonidine (weaning and will eventually be eliminated)
Milk of Mag (in feed)
Mylicon gas drops
Calcium
Prevacid
Erythromycin
Melatonin
Multivitamin (in feed)
Pulmacort nebulizer treatment

It still sounds like a lot of medicine, and it is. The 3 in Red have been newly added since transferring from the NICU (and that's after eliminating Robinul, potassium, sodium phosphate, sodium chloride, and Reglan over the last 2 weeks). We decided to put Milk of Mag in his feed which should help with not having such a large volume of meds at once. But it is important that certain meds don't get mixed into the breastmilk feed bag to make sure that he gets it in it's entirety.

Clonidine Wean:

During rounds, they discussed that since James has been at the same Clonodine level of .8ML for 7 days, they want to ween him today at 2pm to 0.6ML (It is Saturday, so this is a different doctor today than we've had for the whole last week).

AND even though yesterday's Doctor decided to go up on his feed by 1ML every 12 hours...this Doctor today wants to decrease his feeds back to 25ml/hr. His school of thought is that if he continues to have gastric drainage James will become dehydrated.

Afternoon: Mom came to switch with Dad and locked her keys in her car in the Children's Hospital parking garage. So Dad couldn't get home. This is the 2nd time this year, 1st time was in May. At least this time no breastmilk was sitting in the car. Shout out to AAA for coming so quickly.

Mom had purchased probiotics The Garden of Life brand for infants. But now the doctors they are against her giving it even though they said it was okay to administer on our own. Cool, so now we have this twenty dollar unreturnable medicine we can't use. Fabulous.