Saturday, June 2, 2012

Ketotic Hypoglycemia...the saga


  • Whew, what an ordeal! When Bailey woke up on Thursday, May 24, she was sort of out of it, her entire head was soaking wet from sweat, she was cold, and she would drift in and out of sleep. By the time we realized we had an emergency on our hands, her temperature registered at 93.7 and she was increasingly becoming more and more unresponsive. When I put her in her carseat for Nick to take her to the hospital, she was very hard to rouse. We were really, really scared. Nick rushed her to Moses Cone and they took good care of her, once they got some glucose in her system, her sugar levels rose as did her temp. They think it is because she was sick (back to back Hand Foot Mouth, Pneumonia (which also required a trip to the ER 2 weeks prior but no hospital stay), and lastly Fifths Disease, which can be devastating to pregnant women and sickle cell patients, which is why we were quarantined to our room for the entire 5 day hospital stay...) and not eating well for over 2 weeks, she depleted all of her sugar stores and couldn't build them back up. SO SCARY! While it may happen again, it should only be in the event of a GI bug where she can't keep anything down, and we should be able to prevent it, or at least keep our eye on it so it never gets that bad. Her sugar level was 13!! (I had no idea what that meant until they told us, normal is somewhere around 100. Bailey tends to read in the 70s and 80s.) Anyway, we updated Facebook frequently throughout those 5 days and received a lot of support from our friends and family. Via Facebook, here are our accounts of the ordeal:


    Bailey about to be moved to the Pediatric ICU. Hope the doctors can figure out what is wrong.
     ·  · May 24 at 10:50am via mobile

    Poor little Bailey, we had a very scary morning, but she's doing better, now the search is on for what caused it...

     ·  ·  · May 24 at 11:01am near Greensboro
    Jennifer Oxenfeld Aceves was tagged in Nick Aceves's photo.


    Jenn doing the best she can. Lunch underneath our sleeping Bailey, get it while you can. Still no diagnosis.
     ·  · May 24 at 4:11pm

    Better spirits, still no news or diagnosis. Still a bit sluggish but enjoying mommy reading her books, some laughs and giggles included. The endocrinologist will be in tomorrow morning, hopefully to shed some light
     ·  · May 24 at 6:57pm via mobile

    Having mommy feed me french fries and chips while laying down in bed at 8:30 at night...hmmm, how can I make sure this continues even after I get outta here? — with Nick Aceves.

     ·  ·  · May 24 at 9:09pm near Greensboro 
    Bailey slept through the night, from 10pm-6am. Me...not so much. But i'd rather be the one that woke up every time the nurse came in rather than Bailey. Broken record, maybe we'll get some news today.
     ·  · May 25 at 6:24am via mobile
    Jennifer Oxenfeld Aceves was tagged in Nick Aceves's photo.


    Good morning Facebook friends, that is her goofy smile. Camera was not quick enough!
     ·  · May 25 at 6:35am · 

    Got moved out of icu but will be here at least another night. Just had to endure the traumatic experience of Bailey having to have her iv site moved. Poor thing. Still don't know what's wrong with her but they think she still needs the glucose drip to keep her levels up. I think they're going to fast her tonight to see what happens. We're supposed to see an endocrinologist later.
     ·  ·  · May 25 at 10:39am near Greensboro

    Bummer, she has now been restricted to her room because of the pregnant nurses on the floor as well as the sickle cell patients on the floor. We were told this while in the playroom, which left her asking to go back. It stinks, at least our nurse went and got some toys and brought them to her room.
     ·  · May 25 at 12:06pm via mobile

    Feeling better, still on glucose, either because she hasn't built back up her store or because she can't keep it up herself, not sure which. Expecting the endocrinologist to come later this evening, and it sounds like the hospital staff is going to rely on him for a diagnosis/plan. Don't you wish you looked that cute in a hospital gown? ;)

     ·  ·  · May 25 at 4:20pm near Greensboro
Jennifer Oxenfeld Aceves was tagged in Nick Aceves's photo.


End of another day. Circumstances are tough but we'll make it. Love my ladies.
 ·  · May 25 at 9:06pm 

Good morning! Bailey had another good night last night. We are incredibly fortunate that she is doing so well, but frustrated that we have to wait for answers (and by wait I also mean stay in the hospital). There is a really good chance that it was all just caused by two illnesses back to back plus the fact that she hasn't been eating well. So her body could have been completely depleted of sugar and its ability to make more. But they are also trying to rule out anything else, like a metabolic or hormone disorder. Trying to have patience and keep our heads up while we're stuck in this room for the next few days! Thanks to everyone for all of your love, support, and prayers. — with Nick Aceves.

 ·  ·  · May 26 at 7:55am near Greensboro ·

Playing the waiting game...at least she's back to her silly Bailey self! I think they're going to start decreasing the glucose today to see how she does. — with Nick Aceves.

 ·  ·  · May 26 at 9:52am near Greensboro 

Looking for "football". — with Annie Oxenfeld and 3 others.
 ·  ·  · May 26 at 10:46am · 

  • Aunt Annie reading me books — with Robert Oxenfeld and 3 others.
     ·  ·  · May 26 at 10:35am · 

  • Her sugar levels have been good so they've started decreasing the glucose. Let's hope her body responds well. If it does, they'll take her off of it tomorrow night to see if she can make it through ok.So we've got our fingers crossed for a Monday release if all goes well. They're also waiting on a few more blood test results. — with Nick Aceves.
     ·  ·  · Tag Friends · May 26 at 1:31pm near Greensboro

    This is what they think Bailey has.

    www.riversideonline.com
    Ketotic hypoglycemia is a rare but serious form of low blood sugar in young children.
     ·  · May 26 at 2:21pm via mobile

    Before I left for the night, Bailey's sugar had dropped lower than "the plan" allowed, so they were thinking about increasing her glucose. But Nick just informed me that after we convinced her to eat, she was able to get it back up, so they kept on with "the plan" and dropped it again! Her cortisol levels from this morning were normal (yesterday they were a tad low). So things are looking good, hopefully we're on track to go glucose free overnight tomorrow!
     ·  ·  · May 26 at 9:46pm near Greensboro 

    ‎11:00pm glucose check....115 — with Jennifer Oxenfeld Aceves.
     ·  · May 27 at 12:12am via mobile · 

    Yay, no I.V.! If her glucose stays above 80, she won't need another one! — withAnnie Oxenfeld and 3 others.
     ·  ·  · May 27 at 10:23am · 

    ‎8:30 pm: have to restrain a kicking, screaming child who wants to get out of bed. Only for 5 minutes tonight, an improvement. 9:00, Bailey finds "food"in my eyebrows, mostly "sandwiches", and decides to help me out by picking them out with her scratchy fingernails. 9:15, nurse comes in to teach me how to use our blood sugar monitor, is quite shocked when the 10 point difference b.t hers and mine turns out to be over 150 points, because hers read a 253, wth!?! 9:45: Bailey reaches as far as she can down my ear canal with her scratchy fingernails. 10:10, asleep at last! — with Nick Aceves at Moses Cone Hospital.
     ·  ·  · Tag Friends · May 27 at 10:25pm in Greensboro · 


      • Jennifer Oxenfeld Aceves I should clarify...her monitor was incorrect! When she took it again it was 99. Hopefully she is able to keep her sugar up all night, but not in the 200s, then we'd have a different set of problems! :)

    Blood sugar 85 this morning! YEAH! We're still on track to go home today :D However, if her insulin levels from the blood draw this morning are high, there is a chance we'll have to stay.
     ·  ·  · May 28 at 6:42am near Greensboro · 


    Last time in this bed? Oh and mommy, even though you are done with that breakfast burrito, and I don't want it either, I don't want you to put down, so please hold it forever! — with Annie Oxenfeld and Jennifer Oxenfeld Aceves.
     ·  ·  · May 28 at 10:42am · 

    Wow, a 2 year old sure requires a lot of stuff for a 5 day hospital stay! — withNick Aceves.

     ·  ·  · May 28 at 2:24pm near Greensboro · 


    She must have known she's going home today, it's the first time since we've been here that she wanted to wear her Crocs. When she wakes up, we're going over the discharge papers and we're homeward bound! — with Nick Aceves at Moses Cone Hospital.

     ·  ·  · May 28 at 2:26pm in Greensboro · 

    SO Happy to be back home! I want to extend a warm thank you to all of our Facebook friends for all of your love, support, thoughts, and prayers. It was quite an ordeal but it made us feel so wonderful knowing what a great support network we have. Special thanks to Libby OxenfeldRobert OxenfeldAnnie Oxenfeld,Guylène Mortier DeasyDavid R DeasyRobyn Harwood, and Ryan Harwood for providing meals, toys, books, snacks and more importantly, for helping take care of Isabella, who also was a real trooper during the past 5 days. Bailey slept through the night last night and had good blood sugar readings at 2am and 7:30 am. We have a follow-up visit to the endocrinologist in a few days but I really think she is going to be just fine and we know how to prevent it from happening again (or at least recognize it sooner). She is perfectly back to her silly Bailey self, it is so bizarre that she spent the past 5 days in the hospital! Speaking of the hospital, we received such wonderful care at Moses Cone. I feel very lucky that we have such an excellent hospital here in town.
     — with Nick Aceves.

     ·  ·  · May 29 at 12:52pm · 



    She has been home 5 days now, and has been doing great! We kept her out of school Tuesday, sent her half days on Wednesday and Thursday, and a full day Friday (which I think tired her out). She has been sleeping well, eating well, and having good sugar readings (we have to take it at 2am and b/f breakfast for 2 weeks, then 2x per week for 3 months until we return to the endocrinologist). We saw him the day after we were released from the hospital and he thinks she'll be just fine. She was SUCH a trooper while in the hospital! When the nurses would come in to check her finger, she would just hold her hand out and let them do it. She let them do all their checks and everything, though didn't like having her blood drawn (duh!), but would at least lay still for it. She also hates having any kind of tape or stickers taken off. So when we left the hospital, she still had 5 stickers on her chest and belly from the monitors, plus a piece of gauze taped onto each arm. At least she allowed a nurse to take the bandaids off of each of her fingers, because she wouldn't use that hand while the bandaids were on there! She was also really tolerant of being "locked down" in the hospital room, although she did "want to go home" several times. We allowed way more paci usage than we wanted to, but surprisingly that didn't backfire on us when we got home. She has been sleeping well and napping well ever since she got home, and hasn't expected her paci out of her crib. She has returned to her silly Bailey self, oh, also her stubborn, moody 2 year old self, but we'll take it! Sweet girl! We feel incredibly fortunate that she doesn't have anything long-term or life-threatening. Wow, just wow.

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