The Endocrinologist

Saturday was a busy day.  I also met one of the pediatric endocrinologists following his case.  I wrote about the experience, but keep in mind I'd only just learned about his diagnosis and didn't know much in the way of details yet...

It is not good when your case interests the edocrinologist...
I saw the endocrinologist today. She started discussing the case with the nurse practitioner. I asked a question, and she gave me a long look.

"And you are?..."

"Fay." I replied not quite getting what she was asking.

"His mother?!"

"Yes!"

"Oh! You looked too good to have just had a baby."

It is silly, but that made me feel a little bit better.

She was quite friendly and more than happy to discuss the case with me and help me understand a bit more on what was going on. Unfortunately some of it went over my head, but I'm trying to pick up what I can. She has cared for infants in the past with neonatal diabetes. From what I gathered, there are numerous reasons a newborn could have transient or permanent diabetes. It could be a goof up on chromosome 6, or it could be a problem somewhere along the line with the sulfonylurea channel in which the insulin is made, but can't be excreted by the cell. She's planning to start him on sulfonylureas to see if that improves the situation. There is a genetic lab in England that follows cases like these, but they want more information on Bean before they get involved.

On a good note, the endocrinologist seemed optimistic that Bean has transient diabetes rather than permanent. She was also pleased that he came out a good size for a baby with diabetes.

Apparently Bean's sugar numbers while very, very high are not in the upper bracket of blood sugars. She's seen kids with sugars as high as 1500, numbers that would basically take out an adult. "These kids (diabetic newborns) are very, very resilient." She is most concerned with his numbers getting too low and causing seizures and shock, so they are carefully monitoring his sugar levels and insulin. Another primary concern is keeping him well hydrated, because just as in type I or II diabetes, these kids pee constantly. This is why keeping track of wet and messy diapers (he made a lot of those too), wasn't a good indicator of Bean's health before we brought him in to the (regional children's hospital). He couldn't make use of the milk he was eating, it was just going right through him. Basically his organs were starving.

As far as long term consequences, the endocrinologist called that a "loaded question." There are a number of possibilities depending on what exactly is going wrong. For one, if the diabetes does go into remission, he's more likely to develop diabetes later in life...

From what I gathered, there are still lots of questions, but the focus right now is to control Bean's sugar and have him gain some weight. The hope is that it is transient diabetes and it will go away over time.

Currently the endocrinologist is optimistic about Isaac. She says she doesn't sugar coat news or give false hope in order to make the parents feel better, because that isn't fair to the parents.

This is all brand new to me, so I may have misheard or misunderstood some things. As I learn more I will write more. For those that are interested, here is one of the articles the endocrinologist referenced, published in The Orphanet Journal of Rare Diseases. http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1847805
It goes into a lot more detail than I have. My brain is tired right now and I haven't been able to digest it all yet. I plan to delve into some more articles, read up some so I can ask more intelligent questions.

Friday and 1 week old

We drove home with an empty car seat in the back seat. 

Mom took the other two kids and kept them busy so Jay and I could rest for a few hours.  We explained to them that their baby brother got sick and was in the hospital, but he was there so he could get better and come home.  They took the news pretty matter-of-factly, and weren't too concerned.  

I wrote:

Update
Called the NICU, Bean's blood sugar is finally dropping significantly. When it gets below 200 they will be able to feed him and see how he responds.

When Jay wakes up, we will head back, and I will pump some more for Bean.

Jay wrote:

Progress 2

Came home from the hospital from 9 to 1 to rest a bit. Checked in by phone and his sugar was down to the high 300s. Normal is around 80-150 in a newborn. Got back to the ICU and it went down to 280 260 240 208. They check it hourly. So it looks like next reading it will be under 200, at which point they are going to stop the insulin, wait an hour, and let Fay nurse him and see what happens to his sugar level.

Best case scenario, the insulin he's already had will be the jump start his body needed to get things figured out and he'll be all set. More likely, the endocrineologist thinks he will need insulin shots for a few months. "Transient neonatal diabetes." They need to switch him to shots so we can take him home. Actually there will be two transitions, the first to "normal" insulin shots and a second to "long duration" insulin after they're sure he's not going to swing the other way into low blood sugar from the insulin, "which is where you get the siezures" and other Bad Things so we are all for taking things slow and steady.

The just wheeled in an ultrasound machine to see how his pancreas looks. "I'll take the images, and the radiologist will review them and dictate a report." So we'll have to keep you posted on that.

Actually the doctors were hopeful it would turn out to be transient neonatal diabetes, but we had a roughly 50/50 chance.  Unfortunately there isn't a way to determine clinically which it is.  That's where the genetic testing comes in...

More Jay:

A couple things I haven't mentioned

Little Bean's oxygen was a little low when we arrived at the ER, so first they put a little oxygen blower by his face, then put a more serious-looking set of nasal tubes around his head. He's been on it since.

When we got back to the NICU this afternoon, they told us that they've postponed the PICC indefinitely since he's responding so well to the IV insulin. He probably won't need the PICC after all, which is good because there's a long list of things that can (rarely) go wrong with that.

His last two glucose measurements were 163, then they stopped the insulin, and just now 106. Now Fay gets to feed him.

Unfortunately after feeding him his glucose jumped up to 280, the nurses gave him a shot of insulin, but it shot up to over 400.  I think because he didn't have enough subcutaneous fat to disperse the insulin properly.  This kid had no fat to speak of.   

Jay:

Some negative progress

Baby Bean's next reading after nursing was 280. They gave him an insulin shot, but the next reading after that was in the 400s. So they started the intravenous insulin again.

They're going to stick with the IV insulin for a while now but they're going to let Fay continue to feed him. I don't know when they want to try the shots again.

I can feel a sore throat coming on. I gargled with salt water but Rachel's mom will be going up with her for a midnight nursing run.

Fortunately Bean was able to latch on and nurse right where we'd left off without any difficulty.  He was placed on a three hour feeding schedule with glucose checks before eating.  It was so nice to rock and nurse him.  It brought a smidgeon of normalcy despite all of the tubes, wiring, and worry.