July 31st. A day Ill never forget. A day that changed our lives.
We had just come off of a week VBS every evening at church when she got a summer virus. Kocksaki was going around the church nursery and it could have been that. We know now that this illness was her body's 'trigger'. Trigger to attack her pancreas and start this disease. She had a low grade fever for 6 days when I decided to bring her in to our family practice doctor.something wasn't right. Couldn't put my finger on it, but she was much to sick appearing for a temp of 99 degrees. I thought she was getting better because she still had energy, was drinking alot and still had wet diapers...too many wet diapers and too much drinking in fact. Now that I have looked back all the signs were there! But on day 6 of her illness she seemed to take a turn for the worst. Her breathing in particular bothered me. It was a huffing and puffing pattern that was rapid, about 60 breaths a minute. Normal is half that amount. Her energy seemed to disappear and was practically limp in my arms. I would try to nurse her and she would just let the nipple fall out of her mouth! I truly was concerned but her fever was only 99 still so I thought the doctor would laugh me out of the office. I brought her in anyway and told him all my concerns. He wasn't concerned about her fever, or her hydration status. She was still drinking lots of water and having lots of wet diapers. He checked her lungs and said they were clear and that she was breathing fast because it was hot outside and she has a fever. Ummm. No. I wasn't happy with that answer. You don't tell an ex-PICU nurse that her baby is breathing 60 because its hot outside! Hello- we were in air conditioning and live in AC as well. Even a mom who isn't a nurse should see that as red flag! He dismissed us as her having a virus and call if she gets worse.
Over the next few hours she took a nap in my ERGO and woke up vomiting green. Bright green toxic looking and the same came from below! So I was seriously looking at what was coming out of my baby and thinking it looked metabolic. So I'm pacing my house cradling her trying to sense of all this. OK. So I knew she was metabolic and was breathing way too fast so as to try to burn off extra carbon dioxide...Then It started to all come back to me. My years as a peds nurse in the ED and PICU. She was acidotic! Now why?? Why was my daughter acidotic? This part is funny...
Laptop in one hand on my bed, baby in the other, kids downstairs creating havoc, and I'm googling metabolic acidosis! what am I doing?? If I'm even thinking this is what she has, I need to get her to the ED! I slammed down the cover, called Mike and told told him to meet me there. He had taken the boys to Darien Lake and was still an hour away. ( it was the last day to use our free passes)
Erik was also gone! ( at camp) Thank the Lord! Sarah ( Erik's BF) was home 3 doors down and she came to watch the kids while her mom drove us to the ED. It was the worst thunderstorm of the summer and I was worried about our safety, I almost called the ambulance.
I sat in the backseat with her and watched her go in and out, talking to her, asking her to stay with me, I was afraid that if she fell asleep she might not wake up. Her lips looked so dry and she was so pale. I was wondering why hadn't I seen this before? 3 hours before I was in the doctors office and he hadn't noticed either! I prayed Dear God! Please keep her safe! Please keep her with me! Guide Roseanne as she drives. I was also trying to keep a clear head in case I needed to do CPR on my baby...
Once we were in the ED I felt relief wash over me. I knew we'd be safe now and taken care of. I used to work there and I recognized the nurses and staff. It was a good feeling! They rushed us back and began working on her immediately. Her breast milk baby fat wasn't an advantage when it came time to get an IV in her...plus she was dehydrated in spite of the excessive drinking. They had to turn off the lights and use a special light to see thru her skin and locate a vein that way. Ive done all this on other children, but its so very different when Its your baby laying on the bed crying for you while they do their job!
They just finished putting a catheter in (on the second try) when someone yelled out her blood glucose number they tested at the bedside....538!
It took me a minute to register. I couldn't process what they were implying, what the NP was trying to tell me. My baby was in Diabetic Keto Acidosis! what? no way?'
The next few hours were a blur with Chest xrays, more attempts at a second IV, and staff coming in and out... At times Ive judged moms and couldn't understand why they left the rooms when their baby needed them... now I know. Mike had arrived to comfort her and I used that opportunity to call my mom.
I couldn't leave that cubicle fast enough! Standing in the hall looking outside I rang mom and as soon as I heard her voice I broke down sobbing as Ive never done before!
It wasn't just because she was diagnosed with Diabetes, but an accumulation of emotions over the past few days came to the surface... I was mainly feeling guilt. Although false was real at the time.
We didn't stay long in the ED because the transport team from the PICU came for us. How bizarre it was to be riding in the back of the ambulance. When I worked, I received transports from the ED. Weird moment for me.
We spent the next 2 days in the PICU and she was on an Insulin drip. Ill try to paint the picture...
There she was now with a second IV, one in each arm, straightened and boarded down so the IVs don't bend in her arms. Laying on the metal crib inconsolable as she was not allowed to nurse or have anything by mouth. Her body ached from the high glucose- a side effect. I tried putting her the ERGO to sleep, as she liked that at home. Wires, tubes and all! We were tethered by a 3 foot radius, so that was difficult... And she was being poked for blood every half hour to an hour, either by finger prick or blood draw from her IV. The IV draw involved putting the tourniquet on tight so the blood would flow back into the syringe. Even though there wasn't any needles involved she still screamed. To top it all off they were worried about brain swelling from possibly bringing down her sugar too fast, so the nurse did neurological checks every hour. Just as she would get back to sleep she'd be awakened by someone prying her eyes open and flashing a light in her eyes! Oh lovely! And there I am pumping my breast milk in the corner while she is moaning in the crib. No matter what I did she kept crying. It's an awful feeling when you can't comfort your child.
All this went on for a good 12 hours.
She stabilized and her blood levels were reaching their goal marks so they backed off on the every half hour blood draws and went to every hour, then every 2 hours.
Finally I convinced them to let me nurse her...or at least I feel like I did the convincing.
I felt more human when we were finally able to leave the PICUs close watch and spend the next 2 days on a regular peds unit. One IV came out, she was only getting finger pricks every 3 hours, they brought her toys, her nursing had picked up, and she was getting back to her regular self! Smiling even! I hadn't seen that in over a week.
The Lord was with us the whole time. I truly felt that! He has a purpose for her life and mine.
