I do know a lot of April was spent with me taking care of sick kids. When there is 5 of them it goes around fast and seems like just when 1 gets healthy another is going down. Ear infections, terrible colds, and strep throat made their rounds at our house.
Our little Ella was put in the hospital for strep throat. Yes, strep throat. No, it wasn't even that bad and her blood count only showed a very mild infection. Our Littlest Princess was born with SCAD. SCAD is a metabolic disorder and stands for Short Chain Acyl-CoA Dehydrogenase Deficiency. You can read a bit more about what SCAD is here. During her testing we also found she had an unclassified mitochondrial defect. It is unclassified because she didn't fit any of the mitochondrial defects that were listed. There is still so many new things that doctors don't know much about. What we did find out was that many babies died of these MITO defects and Metabolic disorders and were classified as SIDS cases. Scary thought. I know with out a doubt in my heart had we not known about these defects / diseases / deficiencies shortly after Ella was born we would not have her with us today. She slept with a monitor that alarmed when she stopped breathing at night. It could go off many times a night, to once a night to not happening at all for weeks at a time. Her first 6 months of life I had to nurse her every 2 hours around the clock. We got bumped up to 3 hours from 6 to 9 months and then every 4 until she hit the one year mark. From 1 - 2 years we had to do a night feed, which she got a cup of breast milk. She self weaned from nursing at 15 months but we had a good freezer stash that got us to the 2 year mark.
We have been VERY fortunate that our Ella has been pretty healthy. She has gotten ill a few times but it was mild and we were able to keep her eating and / or drinking enough to keep her glucose levels up. Two weeks ago her little body was just to far down and couldn't get her sugars back up even with all the apple juice I was giving her and she refused to eat, which with strep throat that is a given.
I knew it was time to go in and thankfully have had years of practice runs going through my head if / when the time came. We spent a lot of time in the hospital with our oldest daughter with all her kidney problems so I had that as experience too sadly. I threw some extra clothes, a favorite blanket & baby of Ella's, books, my cell & charger, and cash in a bag. Then the small bag of Ella's letter, phone numbers, instructions to Doctors, meds, and glucose meter in with the rest of our stuff and out the door we went.
When leaving home her glucose level was at 82. She had been drinking and it was not rising. Her temp. was high despite me giving her Motrin. Due to her SCAD she can't have Tylenol. Something with the fact that her body can't fully break it down to get rid of it out of her body. Therefore it would build up and cause problems down the road. I couldn't even do the normal rotation of pain meds / fever reducers that you would do with normal kids.
I was VERY impressed with our ER department at the hospital and how quickly they took action. I didn't even get her form filled all out after giving them her letter & instructions from the Metabolic Specialist we see, DR. Rizzo as we were being called back to a room. Glucose levels were down to 41 in just a mere 30 minutes so it was a good thing we came in. Her heart rate was very high and O2 levels very low. Just two hours after having motrin she had a fever of 106.2. An IV was put in right away, blood taken, & x-rays by the on call doctor at the ER. Soon after the on call doctor for our doctors office arrived. He is new and looked a tad nervous when he was reading her letter. He even called our doctor that we usually see to make sure he was doing everything right. He just told him to do what the letter says and to listen to me - I knew what I was talking about! LOL He did a quick strep swab and checked for the flu. Flu came back - but strep +. Ella just needed her mixture of fluids, higher doses of motrin, some L-carnitine, and antibiotics did the trick! After 12 hours of all this she was dancing for the nurses and saying she wanted to go home! Huge compared to just 12 hours before when she could hardly move.
Here is a picture of my Littest Princess feeling better at the hospital. Sorry for the bad quality but it is a cell picture. Isabella managed to get ever Dora sticker she could from nurses & doctors and was happy to stick them all over her!
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