Grueling Week

I want to start by expressing my deepest gratitude for each and everyone of you who have been praying for S.  Here's the story as best I could get out in my sleep deprived state.  I'm sure there are many typos but I'm too tired to proof read.

S has had this horrible diaper rash since right around her birthday a little more than 2 months ago.  We've tried everything and she would get maybe 90% better and then it would flare up super bad again.  Then when we went to E's class reunion about 4 weeks ago she ended up breaking out on her legs and stomach.  It didn't look too bad at first but then it kept getting worse.  So last week on Wednesday we took S back to her primary care doc.  The primary care doc was surprised that S wasn't healing like she expected but decided internal anti-fungals were necessary and was sure that would be the trick.  Well by Monday of this week, I knew that it wasn't helping.  S's rash was getting worse and it looked like the rash was starting to bruise her.  We took her to pediatric urgent care that night and were blessed to have a ped from our parish on that night.  He said he thought the bruising was just an abrasion that was not related to the rash and was not concerned.  He was concerned that the internal anti-fungals weren't working and switched her to a stronger one as well as prescribe a steroid cream for the diaper rash.  I knew Monday that something was seriously wrong but I let the ped calm me down and convince me otherwise.

Wednesday morning I heard S call "mama" about 7:45 am.  I was pumping so I just listened on the monitor and kept pumping.  She never said anything else so I figured that she had just said mama as she was rolling over.  After I finished pumping I thought that I should rest until S got up but I just couldn't settle down.  Normally I feel blessed when S sleeps in but there was a different feel to that morning and so I got dressed, ate something and then laid down on the sofa with the monitor in hand.  S woke up grumpy just after 9.  I hardly ever know exactly when she wakes as I rarely look at the clock and think about it until later.  That day for some reason I made sure to know what the time was as I was heading up stairs.  S was grumpier than she usually is when she sleeps until 9 but I didn't think much of it.  She had super soaked her diaper and her p.j. bottoms were damp too.  I asked her if she wanted to get a clean diaper right away or if she wanted a bath first.  She signed "bath" so we headed to her bathroom.  Not too long after she got in the water she got on her hands and knees.  She had been constipated for a couple days so I asked her if she wanted to sit on the toilet.  She reached for the toilet and I helped her onto her potty seat and put a towel around her to keep her warm.  Then she leaned back.  At first I thought that she was just trying a different position to poop in but her eyes went vacant.  I was concerned.  Shortly after I realized that I was concerned, S came out of her stare a bit and kind of threw herself forward with a groan / whimper.  I helped her off the toilet and she curled up on the floor of the bathroom and became non-responsive.  I picked her up and she had no muscle tone. I ran to the phone and called 911.  I had a hard time talking clearly to the 911 operator but I was finally able to get her to understand that we needed an ambulance.  While I was on the phone with 911 I moved S downstairs near the door and unlocked the door.  I'd never seen her so lifeless.

The ambulance guys were great and S perked up a little on the ride but then seemed to be slipping away again.  When we got to the hospital things were kind of a blur.  E was already there as I called him right before we left the house and the hospital is closer to his office than our house.  The doctor bullied us into a spinal tap for S and we consented.  I regret that as it was clear as soon as they took her blood sugar and temp what was wrong...  her blood sugar was 40 and her rectal temp was 96 point something.  They got her a warm blanket to warm her up but I think they didn't get an IV with sugar going until after they did the spinal.  Of course the spinal tap was fine other than low sugar.  The ER nurse didn't look too confident in getting the IV in.  I mentioned getting a NICU nurse and she just smiled and put the IV in the crease of S's dominant arm.  The IV helped and her glucose started inching up.

Finally when the pediatrician at the hospital came in they asked a bunch of questions and decided that he was pretty sure that S had just gotten into some diabetes medication and was going to be fine.  We admitted that while we couldn't be 100% sure that S's grandmother hadn't dropped a pill in our house when she was here for S's birthday in May but that we really thought he was barking up the wrong tree and would like her worked up for other causes.  After being in the ER for what seemed like forever, she was admitted to the peds ward and we started getting settled in.

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The nurses on the pedsmeds.  When E asked about the drop in the night, the doc said that he thought it was consistent with the med idea.  He went so far as to tell E that he wouldn't recommend looking into it any further as it would be too stressful for us.  Needless to say, I told E that I wanted to talk to the doc when I got back.  Hurried back there and had a little coming to Jesus with that doc.  I was polite but I felt like he made his decision in the ER and was not willing to even look for other explanations.

The doc offered to let S stay another night but I told him that since her 5 pm level (which we again had to insist on) was fine that I was okay with being discharged.  Then at some point in the conversation he said something that sounded like he was implying that S hadn't really needed to be in the hospital Wednesday night and that was a favor to us.  Considering that her sugar drastically dropped in the night, I was more than annoyed and just wanted her out of that hospital.

She did well Thursday night at home.  We made sure to get her up and feed her in the night since we have no idea what happened.  Friday was low key. I was so tired that I could barely function but S went easy on me and took a longer nap than she has in a while. S seemed so happy to be home and I know I was.  We are seeing our primary care doc this morning at 9:30 to see about next steps but E and I have already decided that we're taking her to a Pediatric Endocrinologist as soon as we can identify one that we are interested in and can get an appointment.

I'm pretty sure looking back now that S has had some blood sugar issues for a while.  As soon as they got her blood sugar up, her diaper rash started just disappearing and making sure to feed her every 2 hours has helped her be a lot happier.  I feel so guilty that I hadn't put it together before now.  Hopefully this is something that diet can fix.  Please keep praying.  As you can imagine E and I are sleeping with one eye open so to speak.

****  Update *** I just skimmed over this and somehow a chunk is missing where the **** is.  I'll try to fix that as sometime this weekend.