Thursday, October 10, 2013

Kawasaki syndrome

There we were, me and Aylaroo, trying to help dr lund get to the bottom of what was causing my precious girl to feel so miserable.  dr lunds brow was furrowed as she asked about ayla's chapped lips.  the little lovey had been licking them frequently yesterday,  but she didnt seem dehydrated. And her red eyes? I thought a result of the ongoing whiny cry of a sick prinpress.

Well, dr lund says, I am concerned she may have Kawasaki syndrome.

We dont own a motorcycle,  I replied.

Kawasaki presents with 5 symptoms : strawberry mouth and tongue, red eyes, high fever for a minimum of 5 days, swollen hands and feet, and swollen lymph nodes. Ayla for sures had 3. Dr lund ordered a strep test to rule out that. Negative. A urine sample to rule out a bladder infection,  I got to take those tools home as sweet ayla was not super cooperative.  And some bloodwork testing for Kawasaki syndrome indicators.

Baby blue and I headed to the lab for the longest wait I have ever experienced at zeeland hospital. Still it was not bad, just anxiety filled knowing the poke will be awful and the results unknown.  two lab techs were on hand to assist in the blood draw, making the experience as smooth as possible.  First try and they got the blood they needed to read Kawasaki syndrome charcteristics.

We went home and baby blue went to sleep while I processed and halfheartedly prepared for a possible hospital stay.  After a quick Google search, I really felt quite confident that we were not dealing with this rare disease most common in korean children under the age of 2. I kept checking aylas temp by hand and thought maybe it was improving.

The waiting is so hard.

 three hours later, after conferring with a specialist at the center for disease control, reading the urine sample and conferring with a cardiologist at helen devos children's hospital,  dr lund called with the results. Kawasaki syndrome. I quickly called brad and reported the findings. He was also in a state of shock, but wrapped things up at work and heqded for home where I met him and began throwing things together for a hospital overnight.  Cupcakes things, my things, activities,  clothes, toiletries.  In the meantime, devos called, they were expecting us at 6.

We made arrangements with grandparents and I tried to explain what I really didnt understand to the boys. Bear was excited about the adventure and max was concerned.  Saying goodbye was sad and scary, but the boys remembered to tell me that they knew I loved them and Jesus was in their hearts.

We arrived to the devos complex completely overwhelmed and were directed to our room. Already the room had a welcome ayla sign and nurses began a tour and rundown until two residents arrived. They checked over a very anxious ayla and promised to discuss all her results and symptoms with a hospitaist. He arrived shortly  to confirm the diagnosis and try to explain the condition better.

Basically,  baby got a virus and for random reasons her immune system got confused and began attacking the lining of her own blood vessels rather than the virus itself. The main concern is that her coronary arteries will develop aneurysms.  obviously something real bad. Most children,  when they catch the syndrome within the first 10 days have no long-term affects. Ayla was on day 4. A very good thing. Kawasaki syndrome is not contagious,  just a random disease  they do  not know from where. there is a part of the blood that drs use to measure body ache, like when your whole body hurts from a bad case of influenza.  A healthy persons is at around 10. A person battling influenza is at 100. Ayla's was at 340. Cupcake was miserable.

The treatment, which is relatively new, consists of administering ivig intravenously.  this is a component of blood that somehow corrects the attack of the wrong thing inside a body. This procedure must be carefully monitored to ensure the patient does not reject the meds.  an intense aspirin therapy accompanies the ivig. An echocardiogram is performed to ensure no damage has occured to the coronary arteries.  The echo is repeated in 2 weeks, 8 weeks and a year later just to validate the hearts health.

During this informative lecture,  ayla whimpered and slept off and on. Her temp at that point was 103.8. brad and I were desperate to get some treatment underway.  while mixing the ivig, the nurses started prepping baby blue. Hooking her up to a pulse monitor on her toe, three stickers on her chest, a blood pressure cuff and the iv. Even with the use of some numbing cream, the iv was torturous.  Two tries, and lots of cries later, the nurse found a vein. Brad and I were astounded as those teeny tiny cupcake veins were so hard to see. The staff surely was experienced and caring with our daughter,  but the process was still excruciating for Aylaroo and her parents.

Around 10 pm, she was starting the dosage.  Her vitals were taken every 15 minutes to monitor how her body was dealing with the drugs. Translation: every 15 minutes the little girl freaked the freak out. She would yell, no more hugs! Thats how they referred to the blood pressue cuff.  Awful to witness her pain and fear,  especially when she would look up at me and scream mommy! I stayed right in bed with her, trying  make my pregnant body accommodating for all the nurses and the  little lovey. At one point, her fever spiked and we had to reduce the flow of the iv. Soon her body adjusted and she got the full allotment through the night and morning.

Taking her potty was such an ordeal.  Disconnecting some things, carrying the prinpress and pulling the iv behind me. Brad stayed with his girls until we were confident her body would accept the ivig, then took off for the boys. We decided it sucks to be the parent at home, and it sucks to be the parent in the hospital.  It just sucks.

Every 6 hours, sister needed 3.25 baby aspirin.  These are chewable and bitter and ayla jo was not a fan. At the 6am dosing, after sleeping since only midnight,  and getting woken every hour for vitals  baby blue put up a fight. She yelled at me, she squirmed as much as she could while connected to so many wires. She cried and cried a pathetic cry. So finally my resolve and strength crumbled. I also had the same sleep schedule as cupcake,  resulting in exhaustion.  Not sure who was crying harder at that point.

I checked in with Bradley.  All was well at home. And truly all was well in the hospital.  Things could not have been going more smoothly. It just still was super bad to endure. The morning flee by with visits from nurses, residents,  hospitalists and echocardiogram techs. Ayla did as well as could be expected.  So thankful for the on deand disney movies.

Grandma visited around lunch, and auntie debbie stopped in to witness the correction of darlings jarred iv. So sore and so scary. Ayla sweated and screamed and pleaded mommy and stop and your hurtling me! Aylaroo fell asleep for a couple hours on my lap on the couch. Uncle alex and auntie coki dropped in. When grandma and debbie left, my dad came. Alex and coco made a food run for mama since the hospital only provided the patient with food and not the pregnant mommy. Auntie beans and uncle austin stopped by. And finally daddy came with the brothers.  That was the most animated and excited.  Using her real voice insteax of the whiny whimper to tell the boys about all the treasures she had been receiving.  Aw.

dog therapy. Not so enthused

bear was disappointed he could not go to the play room because there was neither time nor opportunity.  I took the boys for dinner while brad cuddled with the darling.  I cherished those moments alone though the boys were wild. Too soon, the fam left for home and ayla and  I grieved for ourselves that we had to stay. Auntie amber and briella popped in with a beautiful distraction.  Aylaroo began to fade and I tried to soothe her asleep. Around 9 she dozed off. Around 9 :15 the nurses were back to check her vitals. Boo. Back to sleep finally,  I snuck off to shower. Aspirin again at midnight.  This time she threw it at me. More vitals and tears and aspirin at 6. Well, I flagged down a nurse and discussed the plan. We were on target to be discharged that day. Echocardiogram looked normal and no fever since 10 pm Monday.  Hallelujah.  I packed everything up and waited impatiently for the residents.  They confirmed the discharge order at 9 ish. I called brad with the good news and helped the little girl while they disconnected her. Her first words that morning when she awoke were, are we done? Almost there prinpress.

Daddy came to our rescue and we hightailed it out of there as fast as possible, dodging elevator and going for stairs as brad tried to recall where he parked.

Finally loaded up, little hawks called. Wes threw up at school. Awesome.  Here we come.

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