Meds...

My guy? Well, it takes a lot to keep him going. He requires a host of different medications to keep things going smoothly. When he's sick, we have to add on more. Here's a glimpse of daily meds for this guy. 

 

He requires two inhalers, some steroids, Prevacid, erythromycin, Bactrim, synthroid, and a good ol' water flush. Some of these meds are 1x a day, some are 2x, and others are 3x. The water flush is every 4 hours to keep his j-tube clean. If that were to become clogged, we would have to get him to the hospital and it would have to be replaced. Replacing it consists of going under anesthesia, so we work hard to ensure it doesn't get clogged. 

In addition to these meds, he has a pretty strict diaper routine that involves LOTS of aquaphor (you should probably invest in it now... you can thank me later), an antibiotic (when it's really bad) or an antacid. If it's terrible, we also use a no sting barrier film to help protect the skin. It's rough for him. No wonder he wakes up in the middle of the night screaming for a diaper change. 

He also has a few machines that help keep us aware of what's going on with him. He uses a BiPAP machine to give bursts of pressurized air to help with his obstructive sleep apnea. He also wears a pulse ox sensor at night to keep us aware of his oxygen saturation levels. Both of these machines have VERY LOUD alarms if something goes awry. While we appreciate these alarms if something goes wrong, sometimes the machine is just sensitive and alarms because it likes to see how quickly we can run. Or, because it's a machine and sometimes machines are wrong, usually due to a sensor that got pulled off by a curious 16 month old who loves his toes, or a bad deal from the mask because the same curious 16 month old would prefer to sleep on his stomach and the mask then gets pushed to the side. Either way, it's loud. We run. Wyatt is fine. We go back to sleep. 

I mean, we joked that this kid was a $100,000 kid after his little NICU stay. He's more like a million dollar kid now. 

This week we have quite a few appointments. We could use some prayers for guidance about knowing what to push with the doctors. We have endocrine, GI, nutrition, pulmonology, and PT. We got the results of the blood work from last week and it was pretty much the opposite of what I was expecting. I'm hopeful endocrine can come up with a plan. We are hoping to avoid the growth hormone injections as long as possible and the blood work seems to be discouraging in that respect. Either way, we will do what's best for Wyatt. We just hope it's clear to the doctors and us.