Busy Day

Monday was a very busy day. Matt started kindergarten, and we were back and forth to the hospital.  Thanks to Dr. Z who got the ball rolling, we had our blood drawn for genetic testing.  There aren't very many labs that can do the specific testing that we needed, so it was a bit of a trick to find them as well.  I ought to put in links to the labs in the sidebar that deal with testing for transient and permanent neonatal diabetes...

To start with they were going to look for abnormalities on the sixth chromosome, since roughly half of cases are caused by a duplication on the 6q24 region, or a second paternal chromosome (and no maternal chromosome), or rarely an unmethylated maternal allele (so the mom's 6th chromosome is switched on when it should be off).  The other half of cases can be caused by a myriad of genetic glitches.  I'll go into more detail in a future post.  It's really interesting stuff.

August 25th:

At the Hospital

After dropping Matt off at kindergarten, Jay and I headed up to the hospital where we met the Dr. Z and the phlebotomist to draw blood for the genetic testing. I have to say if you ever need blood drawn and happen to be at (the regional children's hospital), request Lou. It took her just a split second to get the needle in Bean's vein- no hesitation, no probing. Then she drew from Jay and me, and I suspect she could have done us blindfolded. That's 20+ years experience poking the tiniest veins. The lady is good!

Since he's had such high sugars, his kidneys have had to work overtime resulting in low sodium in his blood. They are supplementing with sodium now. The day nurse tried to give it to him straight which resulted in a lot of gagging and ultimately upchucking half his lunch. Can't say that I'd blame him, blech.

Starting the Lantus again today. So far the glucose levels have look very good on the Lantus, under 100 even! Bean continues to impress his nurses with his appetite (that's my boy!). Jay graphed Bean's glucose levels and insulin intake while on and off of the glyburide (excluding the times on Lantus); we're not noticing a significant difference...

Back Home

Matt went shoe shopping with Grandma, while I napped on the couch. Grandmas are great!!! They found a pair for school and a pair for church. Grandma said that Matt took to shopping like a typical guy. That is to say, he was bored out of his skull until he got to pick out a treat of oreo cookies. Missy slept while they were gone, so I got a nice nap too. Getting up twice a night to pump is more time consuming and tiring than getting up to feed a baby. Meanwhile, Jay went back to work for a few hours. When he return, he brought beautiful flowers. What a sweet husband. A friend brought dinner by, which was appreciated. Thanks Jenny!

And Back at the Hospital Again

After dinner and dishes, I headed back up to the hospital with Mom to feed Bean once more. (I want to make sure that he doesn't forget how to nurse with all the bottles he receives...) He's looking very good. I warned the night nurse about the sodium incident and advised she put it in some milk first. She did, and down it went without protest. Now it is bedtime. 'Night 'night.

The news continued to look good.  Once Bean was started on the insulin, he rapidly improved and filled out.

Wednesday, August 20th I wrote:

And Odds and Ends

Bean is now dressed in a little onsie since he doesn't have many tubes or wires in the way.

His cord came off yesterday morning. Yay!

There is rumor that they want to transfer him to the children's unit one floor down. On this floor the nurses are trained to handle diabetic children. Also the NICU is getting more sick babies in and want to move the less sick babies out. Currently there are still beds available in the NICU and none on the floor below. Dr. Z and Dr. C are both very much against transferring him, and are fighting to keep him. Dr. Z contends that the doctors on the floor below may not want to continue down the same treatment path using the sulfonylureas (it is new and a there isn't a lot of research on it), they don't know his case history well and have not done the research the docs on the NICU have done and this may delay treatment, plus his blood sugars still are not stable. I think she may want to keep him too, because his case interests her and she would like to see it resolved. I found out that she's read hours of articles each night on his particular condition, and I think she is loathe to not see him through to the end. We'll see what happens. I kind of hope he stays as well.

Since he is doing so much better, he now shares a nurse with another bed and has for the past few days. Just another sign that he is getter more stable, anyways.

His oxygen levels still dip up and down, but not wildly so. He is on a minimal amount of oxygen. They did an echocardiogram yesterday, and the results are a normal looking heart, but one of the fetal shunts hasn't completely closed off yet.

They are still trying to track down a geneticist who would know what labs to draw and where to send them. Either the labs would show what the problem was, or it would eliminate some possibilities...

That evening I returned to the hospital:

Poor Baby!

When I came up to see Bean, he was crying in his bed. I picked him up and bounced and talked to him. His nurse came in and said that the poor little guy was starving. She'd just now received his insulin. Apparently he'd last eaten at 3:00 and it was now 8:00! They are now doing ad-lib feedings (on demand) and he woke up hungry right at shift change so everything took much longer. Poor hungry baby!

He is gaining weight like a champ though. He weighed in at 2710 grams or 5 lbs 15.5 oz. Back to his birth weight!

Tonight I bathed him in the tub. He wasn't too sure what to think of that, but he was pretty sure he didn't like it. Except for washing his head at the end. He did like that.