Isaac Update

Yesterday afternoon, the doctors decided to try the long acting insulin, Lantus. The long acting insulin acts kind of like the form of a mesa. The insulin level jumps up sharply, plateaus for roughly 12 hours and then drops down. Judging by his glucose levels, which were all in the low 100s to 200s throughout much of the night, he responded beautifully. He did need a small dose of insulin (it's on a sliding scale and is determined by his latest glucose reading). This morning his sugar reading jumped up again to 430.

Today he has the blessing of two endocrinologists to start the sulfonylureas treatment. According to the endocrinologist it has about a one in four chance of working, and if it works, it works much, much better than insulin. We do know he is able to make very low amounts of insulin. His C-peptide test showed that. This gives me some hope that it is the transient form. It's also oral so if it works, it will save him some pokes. The doctors had to wait until 3 PM to start to make sure the Lantus had completely worn off. Otherwise if it works, it could drop his sugar too dramatically; something his doctors have been extremely careful to avoid. So he is back to the 6 hour insulin doses on the sliding scale.

Speaking of pokes, yesterday they brought up a glucometer to in order to use less of his blood with each glucose test. When the phlebotomist does the testing, she has to use a small thin tube of blood, a glucometer requires just a drop. The glucometer is slightly less accurate, however, and you can't get the K and Na readings from it. The charge nurse didn't approve the glucometer because there isn't any protocol for the NICU department. His doctors were dismayed when they learned that the glucometer had been removed, so his fellow, Dr. Z, talked with the person in charge of the entire NICU and got a special exception for Isaac. When/if his blood glucose levels get below 80 or over 400, then they will also use the regular lab reader.

I listened in on rounds today and they also discussed allowing demand feedings once his blood sugar is better under control. Currently he is bottle fed or nursed every three hours. Before he can eat, his blood is drawn and tested. (His poor fingers and heels are covered with little bandages) Then his insulin is ordered up if it is needed. Unfortunately the insulin must be diluted for him and the dose varies each time so it can't be made up in advance. So the NP writes the order, the bedside nurse sends the order down to the pharmacy, the pharmacy sends the insulin up to the floor, and the bedside nurse must then pick it up. Then she must confirm the dose and patient with another nurse, and finally he gets his insulin and can eat. This is a process that can take as long as 45 minutes. Meanwhile poor Isaac is getting hungrier and hungrier. This morning I bounced him, rocked him, gave him a pacifier (which he rejected), my finger which he accepted for a while, talked to him, and tried every distraction technique I could think of. He didn't cry but was clearly rooting, smacking his mouth, and looking for something to eat. He is a very patient baby. My other two would have been screaming full throttle if required to wait.

Here's hoping that the sulfonylureas works!

Rounds

Back at the NICU after staying away for a couple days because of my cold.
Little Rygg's blood sugar was higher last night, from the mid-250s up to 400s.  We were here for rounds this morning as they discussed what to do about this.  One of the doctors pointed out that the insulin he's getting every 6 hours will be completely gone from his body by 4 hours.  Typically it's not recommended to give it more often than six but Dr. Z, the fellow (her name is long and Polish-sounding, and I can't spell it) said she would watch him closely today and possibly order insulin every 4h.  For now they just increased his next dose (right now) by 10%.
Dr. Chan, the neonatologist, added that they'd be presenting his case at a meeting of doctors and professors from the university at 3 this afternoon to see if anyone has any useful suggestions.  After that Dr. Z has another meeting at 4, but we should be able to grab her in the evening to see if anything came from that.
I have to say that, having seen the rounds process, where the fellow and nurse consulted their three-ring binders frequently, I'm a little surprised at how low-tech a lot of the NICU is.  The vital signs monitors are electronic but everything else is just a paper record.  While the doctors were trying to correlate insulin times with blood sugar readings and feeding times in their heads I couldn't believe there wasn't a way to just chart those numbers on a graph on the station's computer.  It would be trivial if these records were digital but apparently they are not.  To someone in my line of work that's a little scandalous.  Not to mention that there's just that much more of a factor for human error that could be avoided with modern tools.

NICU

The doctor at the Newborn Intensive Care Unit says that she has never seen this before either but she found some papers describing similar cases, and it's likely that it's a temporary hyperglycemic condition that he will grow out of on his own within a few months.  They will put tubes in his bellybutton and give him insulin to stabilize him, which should take 12-24h.  Then Rachel can start breastfeeding him again, and after a couple days of stability we can take him home and start doing the blood test and insulin shot thing.  Then eventually he won't need the shots any more.  That is the plan, anyway.
Unlike in the ER they won't let us back until they are done putting tubes in his tummy and catheterizing him.  Rachel heard him crying on the intercom when they talked to the nurse; a fresh stab through her heart.
They have "parent rooms" for parents to sleep in overnight but they ran out.  Couch time.  And floor time, because there is only one couch.