Good News!

But first more glucometer woes:

Glucometer Saga Part ??

After lunch I came back up to feed Bean. His nurse swapped with another nurse at 1:00 because the NICU had some new admits and the nurses got shuffled around. I found her with the phlembotomist using the ISTAT reader (lab reader) to test his glucose. I asked what was going on...his sugar was supposed to be read by his glucometer throughout the day and 1x in the morning compared with the ISTAT. She'd been led to believe that his sugar was supposed to be read with the ISTAT throughout the day and the glucometer used once in the morning.

So she tracked down Bean's nurse practitioner who clarified things and wrote a clear (I hope!) order in his charts. Bean's bedside nurse apologized up and down. Really it wasn't her fault, I understood. I sure was glad to be there to correct this, though. The ISTAT requires so much more blood, and to have it done 8 times a day would have Bean terribly anemic in no time. The ISTAT lab reader ended up erroring out, so it didn't even get a glucose reading. I showed his nurse how to use the glucometer (she'd never used this type before) and got his glucose number. His nurse in turn made a very clear sign in large letters explaining how and when Isaac's sugars were to be tested and hung it on his crib.

I'm hoping that this is the end of the glucometer saga...

By Thursday August 28th the news was looking very good:

6 lbs 13 ounces

His blood glucoses are much more stable, and they are starting to talk about a going home time line!

Bean is off of the glyburide and has been for 24 hours. The doctors (and Jay, who put the data in a spreadsheet and graphed it) didm't think it was affecting his sugar levels much. Going to keep an eye on him during the day today, and if his sugars shoot back up then perhaps the glyburide was playing a role...(but personally I doubt it.)

He's on Lantus twice a day, and none of the regular quick acting insulin. This morning his sugars were actually a little on the low side, so there's still some tweaking still going on. His doctor commented that in a week he will likely need the current higher dose with the rate he is eating and growing. They aren't used to such great eaters, but this is a typical Ellis kid for me.

Things are looking very good. I am a happy mama!

Saying Goodnight

Saying goodbye to Bean each night was very difficult.  Friends of ours who'd had a premie frankly told us that they cried as they left their baby every time.  They are not super sentimental people either.  It is startling how fast you fall in love with a baby.  Right from the get-go Bean was an important part of the family, and it was heart wrenching to leave him, even though we knew he was in the best possible place for getting well.

August 22nd:

When Bean Comes Home...
I intend to rock him all through that first night. Just the two of us.

In the hospital, we rocked, nursed, and snuggled then I had to say goodnight and walk away. Not to complain, but this is very hard.

It was made even more challenging because we had two little ones still at home who needed their mother and father's attention as well.  

Jay wrote on August 24th:

Quick update

Bean does well on the Lantus, but at rounds yesterday they said they were taking him off of it to see how the glyburide (the sulfonylureas) affects him without the Lantus muddying the waters. This week's neonatologist (a new guy, not Dr. C) pointed out that even if the glyburide just reduces the amount of insulin he needs, it's still worth it.

He was up to 6 lb 5 oz.

Yesterday morning was the first time I've fed any of our newborns. Fay took the older kids for some Mommy Time so I went up with Grandma to see Bean and bottle-fed him. He was very alert afterwards, just looking around and chilling with me in the rocking chair. He fell asleep just before it was time to check his glucose again. At least at 11 he didn't need more insulin, so he just got a shallow poke. Then Grandma took a turn feeding him and he fell right asleep. In the evening, it was Fay's turn to go up.

Fay pointed out the other day that little Bean's already had far more needles in him in his two weeks of life than she has had in almost thirty. Poor kid.

Life got busy

But I am back and will continue with Bean's story where I left off.  

That Friday Bean turned 2 weeks old.  His blood glucose continued to swing rather wildly so he was still far too unstable to take home.  Rarely, rarely neonatal diabetes is associated with neurological problems and heart defects, depending upon what specifically caused the diabetes in the first place.  At this point we didn't know so the neonatologist leaned on the side of caution and ordered the ultrasounds just in case.  

At two weeks of age I wrote:

Two Weeks Old

Hard to believe, it seems so much longer...

Glucose levels are all over the place ranging from the mid 200s to over 500. A normal baby's glucose ranges from 50-100. The doctors are trying get it around 100-200. Going to start the long acting insulin Lantus again, which seemed to work pretty well. One of the docs said he's going through insulin like water. On the bright side they now have a pre-diluted solution of insulin upstairs that the nurses can draw from rather than waiting for the pharmacy. So much faster! They've bumped up the sulfonylureas (glyburide) to the maximum dose today...so far nothing. Sigh.

He had a head ultrasound yesterday to rule out very rare Bad Things sometimes associated with NDM (I didn't ask and I didn't want to know). I asked about the radiologists report during rounds today. Dr. Z said reassuringly that it looked perfectly normal. Dr. C, with a gleam in his eye deadpanned, "Well, normal for your family anyways." Wasn't expecting that one, so I didn't have a good retort at the tip of my tongue. I just shook my head while everyone else had a good chuckle.

Bean graduated to a crib since he doesn't need a warmer. He still eats very well, downing 3 to 4+ ounces at a time or however much he nurses. For once having an overabundant supply of milk is a blessing. The refrigerator and freezer at the hospital are well supplied for Bean.

Later I delved into some research and read about the "Very Bad" things that could happen.  I was glad to learn about it after the normal results came back and not before.  Most of the time though neonatal diabetes presents alone or with minor things like macroglossia (big tongue) or an umbilical hernia.  

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.