His sugars are much more stable, and they are starting to talk about a going home time line!
Isaac is off of the glyburide and has been for 24 hours. The doctors (and Jonathan, who put the data in a spreadsheet and graphed it) didn'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 I don't think it will.
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!
Showing posts with label blood glucose. Show all posts
Showing posts with label blood glucose. Show all posts
Thursday, August 28, 2008
Friday, August 22, 2008
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.
Isaac 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 Isaac.
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.
Isaac 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 Isaac.
Wednesday, August 20, 2008
Short update
I went back to the office yesterday so this is second-hand via Rachel. I'll just give a summary and Rachel 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 Isaac 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.
Isaac continues to eat well.
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 Isaac 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.
Isaac continues to eat well.
Saturday, August 16, 2008
The Good, the Bad, and the Terrific
And a view from the NICU...
And actually he's looking much better than he was.
First the terrific:
Isaac's blood sugar continued to yo-yo through the night. This morning they tried taking him off of the insulin again to see how he'd respond. 25 minutes after eating his sugar was 135! An hour and 10 minutes it was 165. He hasn't had such low numbers after eating while off of insulin. His sodium and potassium levels were likewise good. His blood sugar went up again to the 200s several hours later, but for a brief time he didn't need the insulin. They are now going to try shots of insulin to see if they are able to control his sugar that way. He doesn't have much in the way of fat to disperse the insulin so it's an iffy proposition. All those blood draws leads into....
The Bad:
Even though they draw tiny amounts of blood, he's a small fellow to begin with and can't spare a whole lot of blood. The phlebotomist (she tests the blood) ran a hematocrit. He's a bit anemic and somewhat dehydrated. The doctor recommended either more saline or a blood transfusion, while strongly recommending a transfusion. Eek! I truly wish I could give him blood (he only needs a few teaspoons and we share the same blood type), but there's a delay with screening it, plus they probably wouldn't let me since I gave birth so recently. In all the times I have given blood, I never thought it was something one of my children would need. It's kind of a mixed feeling; I'm grateful, and I'm a little leery. I went ahead and authorized it though, because I do think it is something he needs. Since he has a low RBC his oxygen levels have been on the low side, so they've put him back on oxygen. Darn.
The Good:
Isaac is a very good eater. When I'm not there they do bottle feed him the expressed milk, but he still knows how to nurse well. I asked if they could cup feed, but apparently that isn't something the nurses at Primary's are trained in and they aren't comfortable with it. The only other option is tube feedings, and I can't imagine Isaac being happy with another tube down his body. Plus, he seems to relish eating and I don't want to take that pleasure away from him.
Since he is eating so well now, they removed his artery line that ran through his umbilical stump. I guess there is a higher risk of infection and complications with leaving the line in place now that he's eating regularly. Instead the line is now through his wrist (not pictured because this was taken earlier). This way he doesn't have to be poked in the heel every time they want some blood from him. He's also much, much more alert. I got to hold him for about an hour while he looked around, gazed at the lights, me, anything that moved... I think he is feeling a little better.
And actually he's looking much better than he was.First the terrific:
Isaac's blood sugar continued to yo-yo through the night. This morning they tried taking him off of the insulin again to see how he'd respond. 25 minutes after eating his sugar was 135! An hour and 10 minutes it was 165. He hasn't had such low numbers after eating while off of insulin. His sodium and potassium levels were likewise good. His blood sugar went up again to the 200s several hours later, but for a brief time he didn't need the insulin. They are now going to try shots of insulin to see if they are able to control his sugar that way. He doesn't have much in the way of fat to disperse the insulin so it's an iffy proposition. All those blood draws leads into....
The Bad:
Even though they draw tiny amounts of blood, he's a small fellow to begin with and can't spare a whole lot of blood. The phlebotomist (she tests the blood) ran a hematocrit. He's a bit anemic and somewhat dehydrated. The doctor recommended either more saline or a blood transfusion, while strongly recommending a transfusion. Eek! I truly wish I could give him blood (he only needs a few teaspoons and we share the same blood type), but there's a delay with screening it, plus they probably wouldn't let me since I gave birth so recently. In all the times I have given blood, I never thought it was something one of my children would need. It's kind of a mixed feeling; I'm grateful, and I'm a little leery. I went ahead and authorized it though, because I do think it is something he needs. Since he has a low RBC his oxygen levels have been on the low side, so they've put him back on oxygen. Darn.
The Good:
Isaac is a very good eater. When I'm not there they do bottle feed him the expressed milk, but he still knows how to nurse well. I asked if they could cup feed, but apparently that isn't something the nurses at Primary's are trained in and they aren't comfortable with it. The only other option is tube feedings, and I can't imagine Isaac being happy with another tube down his body. Plus, he seems to relish eating and I don't want to take that pleasure away from him.
Since he is eating so well now, they removed his artery line that ran through his umbilical stump. I guess there is a higher risk of infection and complications with leaving the line in place now that he's eating regularly. Instead the line is now through his wrist (not pictured because this was taken earlier). This way he doesn't have to be poked in the heel every time they want some blood from him. He's also much, much more alert. I got to hold him for about an hour while he looked around, gazed at the lights, me, anything that moved... I think he is feeling a little better.
"Little Chow Hound"
That's how Isaac's nurse described him after she fed him at 9 pm last night. He downed 3 oz easily and probably would have eaten more if she'd warmed it up. I came in at midnight and he nursed enthusiastically on one side. Probably got about 3 oz then too, judging by how little I was able to pump on that side afterward compared to the other.
His color looks fantastic! Even just 6 hours earlier when I had left him he was pale, pale. He is now a lovely rosy color. They took the oxygen off of him too, because he's able to maintain good levels on his own. An hour after his midnight eating, his sugar level was 195 which for him is pretty good! The results of the pancreas ultrasound came back normal. At least his pancreas looks normal, if only it would act normal!
I'll return in a few hours and hopefully catch his doctors during the morning bedside rounds so I can listen in on their ideas and game plan for him.
His color looks fantastic! Even just 6 hours earlier when I had left him he was pale, pale. He is now a lovely rosy color. They took the oxygen off of him too, because he's able to maintain good levels on his own. An hour after his midnight eating, his sugar level was 195 which for him is pretty good! The results of the pancreas ultrasound came back normal. At least his pancreas looks normal, if only it would act normal!
I'll return in a few hours and hopefully catch his doctors during the morning bedside rounds so I can listen in on their ideas and game plan for him.
Friday, August 15, 2008
Some negative progress
Baby Rygg'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 Rachel 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.
They're going to stick with the IV insulin for a while now but they're going to let Rachel 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.
A couple things I haven't mentioned
Little Rygg'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 Rachel gets to feed him.
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 Rachel gets to feed him.
Update
Called the NICU, Isaac'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 Jonathan wakes up, we will head back, and I will pump some more for Isaac.
When Jonathan wakes up, we will head back, and I will pump some more for Isaac.
Progress
Slept a couple hours in the waiting room. They are giving him insulin through an IV and checking his blood sugar hourly. The last check (or two?) it's been under 700, so it's going in the right direction now. They weren't able to get a veinal IV through his navel so they are going to have to do a PICC line, basically an IV catheter through a vein in his arm into his chest near his heart. IVs near the surface like the one in his hand tend to get dislodged and start dripping into tissue instead of the vein in kids his age.
Funny -- as sick as he is, in the NICU, surrounded by preemies, Isaac is the big one of the group.
Funny -- as sick as he is, in the NICU, surrounded by preemies, Isaac is the big one of the group.
Second test results
Sodium, potassium, glucose the same. "It's going to be really interesting figuring out what's going on. Unfortunately that means more blood draws." Endocrinologist and neonatologist don't know what's going on. "I've never seen sugar this high in a newborn." Maybe get the geneticist involved. "That will be tomorrow, we're done with tests for tonight."
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