Coming Home

That Saturday we arrived before eight so as to be there to give Bean his morning dose Lantus.  The pharmacist said we could always practice with saline on him if it was too early, but why give him more pokes then absolutely necessary, we figured.  

I gave him his shot.  Not my favorite thing to do, but I was glad to have the nurse there to supervise at least once.  Since confidence in drawing up insulin and giving shots was a necessary prerequisite to Bean coming home, we were prepared to do it.  

The discharge process was quite long and Jay had to leave to speak at a conference part way through.  When he got back, the pharmacist showed us how to use glucogen.  Eeep.  We were really hoping to never need that... the problems with hypoglycemia seemed terribly frightening.  She gave us some more information on Lantus and Humalog (the quick acting insulin to be used to correct highs).  Bean's Humalog had to be specially diluted twenty times by the pharmacy so we could actually draw it up in a syringe.  Still he didn't need very much, so that is where the 1/2 unit markings on the syringe came in handy.  

In addition to the diabetes education, we went through the standard NICU discharge education.  This included an infant CPR video with a doll to practice on.  It was actually pretty well done, and we got to keep the doll and video.  The "purple crying" video was pretty disturbing though.  I just can't wrap my head around someone hurting a baby due to crying, and we had two very colicy babies prior to Bean.  Yikes.  The rest of the education was given Reader's Digest style by the nurse.  This is our third baby after all- we've picked up on a few things by this point.  :)

Then there was some confusion with the pharmacy so we had to wait for them to mix up Bean's insulin to take home.  This took several hours.  Jay and I just rocked Bean, took some pictures, and waited.

Around six that evening we finally got the green light to head out.  Bean's nurse walked us to the car with all of his supplies.  Hooray!  We drove home just ecstatic to have him with us.  The weight of responsibility hit shortly after we arrived home- just in time to check his glucose and administer his evening dose of Lantus.  We were now in charge of monitoring his blood glucose at least every three hours around the clock.  On top of that we were to give him sodium four times a day mixed with fresh milk to get it down.  

Daunting?  You bet.

Introduction of Lantus and a Glucometer

I wrote:

Bean Update

Yesterday afternoon, the doctors decided to try the long acting insulin, Lantus. As it was described to me, the long acting insulin acts kind of in 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 Bean 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!

Jay wrote:

Short update

I went back to the office yesterday so this is second-hand via Fay. I'll just give a summary and Fay can fill in details later if she likes.

The doctors decided that the short-term insulin just wasn't working on its own, and gave Isaac a dose of slow-release insulin as kind of a baseline. Then they supplemented that with additional short-term doses. His glucose reading was in the 100s and low 200s all day and night, and at least once he didn't need the extra short-term shot.

They also got Bean a glucometer that just needs a small drop of blood to read instead of a pipette's worth. A pipette is already pretty small but this should make things just a little easier on him.

Bean continues to eat well.