Cold, ear infection, diabetes....

What a week Scarlet is having! :(  She started getting sick with a cold this last week and it has now turned into an ear infection. Erika took her to the doctor today and they gave her an antibiotic. Unfortunately Amoxicillin apparently has a fair amount of sugar since her sugar levels are now around 300! On top of that she's had ketones all day ranging from small to large. Large is NOT good! Her breathing started getting rapid and she was getting the beginning signs of ketoacidosis. Erika has to give her short lasting insulin shots every two hours until the ketones are gone. It's going to be a long, long night!  So much for diabetes doing well! We sure are hoping that she has the temporary and not permanent diabetes!

For those that don't know, ketones happen when the body is breaking down it's own fat for energy instead of using insulin. Ketoacidosis is the beginning signs of the diabetic coma coming on. So it's been a pretty scary day for Blake and Erika! Last I heard the ketones were still fluctuating quite a bit but the ketoacidosis signs went away.

We believe part of the issue with Scarlet getting ketones so easily is that she's so small. She's a year old and 18 lbs. That's in the +/-20%, her height (26") is in the 1% range and head in the 38% range. She's really nicely proportioned but has obviously got the small size of my family!  She seems to get ketones if she's teething, gets her shots or is sick or a combination there of. Unfortunately she just got her shots last week so that may have made her more vulnerable.

Scarlet Update #2

We finally got the results for what type of diabetes that Scarlet has. It took 10 weeks and is indeed neonatal, she has a gene mutation that has led to it. Everything pointed to that but they needed to do the genetic testing to make sure. Next to no weight gain the last month in the womb, urinating A LOT, somewhat cranky over all but not horrible. The one thing that I would say sticks out is that she didn't smile real easy. She'd give a twitch of the lip but to REALLY smile and laugh, she rarely did that. She was sick almost all the time, she might have went a week at time without being sick. Her body just got to the point that it couldn't handle it anymore and when she got the flu from Teagan at 7 months it caused her ketones to build and sent her into a diabetic coma. I'm going to take a guess that it took so long due to the type of neonatal diabetes that she has. There is a 1 in 300,000 to 500,000 chance of neonatal happening so it's very rare and for being so rare there are 5 different types! She has the type that could possibly be temporary, but it's rare that it is temporary. I guess the typical age is around 18 months to 2 years that it goes away if it is temporary. But it could possibly come back when she gets older; it would act as type 2 diabetes. So it sounds like to me her body may still be making some insulin, unlike type 1 diabetics. If she were to ever get pregnant she would have gestational diabetes, of course that's only if it were temporary. She could possibly end up on an insulin pump if it doesn't go away. Even if it is temporary she will need to keep track of blood sugar her whole life.

She is such a happy little girl now! The only time she really has issues is when she's teething and sick, or gets her shots and is teething. Those two instances have triggered ketones. Then she's pretty cranky. Erika and Blake have done an absolute wonderful job with managing the diabetes. You learn to play with the long lasting insulin a bit if you know it's going to be an active day the next day. Give a little less so there's sugar to burn and then the sugar doesn't get near as low as it would have otherwise. Scarlet went to the babysitter at 160 the other day but by the time her morning nap came and went she was down to mid 50's! The babysitter then gives her food that will bump her sugar back up. It really doesn't take a lot though! Except, as in instances mentioned above, she rarely even needs the short lasting insulin. Probably because of the type of neonatal diabetes that it is.  Below is one of my favorite pictures so far! She is so HAPPY!!! (She's the black and white dress)

Scarlet's update

As many of you know Scarlet really gave us a scare late Sunday night! Teagan and Scarlet had both been sick with the flu (para influenza type 3 to be exact thanks to hospital testing), so Erika didn't really think much of it when she threw up and starting getting dehydrated. But when she tried to do something about the dehydration it just got worse and she got listless and started becoming unresponsive Erika took her into Mt. Hood. I believe she reached coma stage right about the time that they reached the hospital. When they did a brain scan they saw 2 spots but no swelling. Then they took her by ambulance to Randal's Children's Hospital. Her blood sugar levels were at 566 when she went in! A test that helps them determine what past levels have been showed that she's been over 300 for AT LEAST 2 months! She's only 7 months (8 the 26th of May). It's no wonder she hasn't smiled as much as Teagan did, she's probably been feeling awful for a long time! There is a chance that she was actually born with the diabetes and it's not Type 1. We actually hope that's the case since there's a good chance she'd grow out of it and not need insulin when she's an adult. But their fairly sure that it is Type 1. We have to wait 10 days for that test to come back and somewhere around 6 weeks for the test results of the other type. As of now Scarlet is on 2 units of long lasting insulin once a day in the evening. (It has to be administered at the exact same time every day) and then on the quick working insulin as needed. Blood sugars get checked before each feeding if it has been over 3 hours since the last insulin shot. But blood sugars do not need to be checked if she eats and it's only been 2 hours since the last insulin shot. At this point sometimes she needs the insulin shot before eating and sometimes not. She's went a couple of feedings at times without needing it. Target range is 100-200 for blood sugar readings.

She technically came out of her coma Monday afternoon, however her levels needed a lot of work needless to say. Interestingly enough the one they had the most trouble with was the ionized calcium, it kept dropping. That one finally stayed at acceptable levels yesterday. That is the free floating calcium in the blood stream. She started off pretty listless but has quickly gained strength. I honestly think this is the best she has felt her whole short life! Yesterday she got moved from ICU and today (Friday) she got to go home. They were saying Saturday just yesterday but I think since Erika did such an awesome job of stepping to the plate and taking care of blood sugar readings and giving the shots they realized she was in very competent hands and let her out early!

There was an MRI done to check the spots on the brain and they believe that it is bleeding due to lack of oxygen when she went into the coma but they aren't absolutely positive if there was bleeding. The spots were in the same spot an each side of her brain on the frontal lobe. They don't think at this point it will affect her long term since she's doing so well, however only time will tell. They told them to keep an eye on her development. She's been very interactive. Apparently it's far enough back that the doctor can't say for sure if there will be issues. If it was further forward she could have said what we'd notice so the doctor said that is actually good news that she doesn't know! She does have a spot of calcification on her brain stem that they found while doing the MRI and that is totally unrelated to what happen this week. The neurologist has no clue why it's there or what caused it and is going to research it. In four months they'll do another scan to make sure that it hasn't grown. Who knows maybe this calcification is why the whole thing happened this way! She had to have the MRI to find that spot of calcification.

Here's the thing though, Erika has said all along that she urinated A LOT more then Teagan ever did and has said that multiple times to the doctor. She also has been sick a lot. It seems like she gets every single virus that comes along and that she takes forever to get over the illnesses. Her last month in the womb she really didn't gain weight and they've never been able to figure out why since that's when most weight is put on. However she did gain weight fairly quickly after she was born. But still she's not near as 'chunky' as Teagan was. She's right around 15 lbs. Another sign was how often she ate. Erika said she seemed to be a bottomless pit. Teagan was sleeping through the night by now and Scarlet very rarely has done that. It seems like every two or three hours she's ready to eat again. Erika has nursed her this whole time although she has started getting some baby food the last month and half. Another sign was her breathing, when she gets sick she has problems with her breathing, in reality she's had problems since birth with her breathing. She was in NICU her first week due to that. Looking back all of those are signs of diabetes but since it only happens to less then 1% of babies it just never occured to the doctors.

Lots of detail here and quite frankly I'm typing the detail so if my missing husband ever decides to look for the blog what's going on with his granddaughter is here! I'm so thankful for the out pouring of love and care that everyone has shown. I'm sure there was lots of prayers going up for Scarlet this week! I've been very thankful for my faith and for a Father that can give so much comfort in times of turmoil.

Here's some of my favorite pictures: