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!

A Tough Day

By Tuesday, August 26th Bean had been in the hospital for 11 days.  Emotionally and physically it'd become very draining.  Add that to some changes that occurred Tuesday night, and it was just overwhelming.

Unhappy Mama

This is a pity post; you have been forewarned.

Took the kids to see Bean tonight, and went to his room only to learn he'd been moved. I get to his new location and the phlebotomist is there using the lab reader to check his glucose. I ask his bedside nurse what was going on, why weren't they using the glucometer? Apparently someone is in a tizzy again about the glucometer being used because there isn't a protocol written for it for the NICU and the nurses aren't trained in how to use it. What the?!? Aren't trained??? It takes less than 5 minutes to be "trained" to use this device. I look around the room and see pumps, drips, lines, ventilators, and other complicated pieces of equipment, and a glucometer is out of the realm for training!?! ARHHHH! The bedside nurses who have used it with Bean have had no problem, and the lab reader requires much more blood than the glucometer. Bean has already had 2 blood transfusions due to all the blood they've needed to take out of him; I'd like to avoid a 3rd, thank you very much. Plus, when we go home, we will be using a glucometer, not a high end lab reader. Later that evening I spoke with the NP when she finally got out of a meeting. She agreed to allow the glucometer for the evening, but it looks like we may be in for round 3 in this fight tomorrow. I don't get the bureaucracy, his doctors have approved it for his use. They've gone all the way to the head of the NICU. Why, oh why does this keep coming up?

I looked at Bean's poor heal this evening. It seems the nurses favor his right heal, and it is dark purple and scabbed over with pokes. His other heal is not bad, and neither are his fingers. Tomorrow I'm going to talk with the nurses about using other parts of his anatomy to stick.

The room we were in was an isolation room. Bean was placed there because he came from home. It was quiet and somewhat private. Now he's in a big open room with lots of other babies. It is incredibly loud. Nearly every baby was crying, and we seemed to be right next to the nurses' gossip station and they were quite loud too. It was yak, yak, yak, amid the wailings, and beeping of the monitors. Poor Bean. I'm also concerned because he is right next to another baby with the same name (though spelled slightly differently). What if someone isn't paying attention or gets careless with medication or procedures?

Bean is also sharing a nurse with a baby on the opposite side of the room that has many wires and tubings. This has me concerned that little attention will afforded to him because it's just not possible. I know his basic needs will be met, but no one will hold and rock him when I'm not there. And he needs to be held! Who will comfort him when he cries? No one will be there to love him, when I'm gone. I hate, hate, hate this situation!!!!!!!

It just rends my heart to leave him, and now I am very worried. My heart is torn in two. I worry and miss Isaac when I'm home, and I feel terrible about missing out on time with Matt and Missy when I'm at the hospital. I should be there to pick Matt up from kindergarten and hear all about his day when it is fresh on his mind. I should be snuggling more with Missy and taking her to story time at the library. Instead I am a tired, sometimes cranky Mama, who is insufficient for any of my children.

[Jay's postscript: when we called at 4 AM during a pumping wake, his nurse said she'd found the authorization for the NICU head for the glucometer and was printing a sign to hang on his crib to let everyone know that It Was Approved Thank You Very Much.]

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.