This week my Facebook and iPhone memories are causing a flurry of emotion. I’m eternally grateful for God’s miraculous healing power, the team of doctors, nurses and Child Life staff that took care of all of us for those 10 grueling days in the hospital, and the 1,000+ blood plasma donors it took to give my little Parkibear the treatment he needed to recover from Kawasaki Disease without heart damage. However, the photos and my daily Parker updates on my Facebook memories still trigger a very real, lingering PTSD from the whole experience. The photos in my iPhone memories I couldn’tshare at the time are even worse.
Since Parker’s discharge, I’ve read horror story after horror story of misdiagnosis, children having heart attacks and parents trying to recover from unthinkably bad outcomes. We were lucky to land in a Children’s hospital with a doctor familiar with KD, but unfortunately a lot of doctors just don’t know much about it.
With extreme gratitude for a happy ending and passion to raise awareness for Kawasaki Disease, here is our story…
Day 1 - Friday
It all started the morning after Thanksgiving when Parker woke up with a fever. “Eeeh. It’s a fever of 101—He’s fine”, I told myself. He didn’t seem uncomfortable at all, just really tired and a bit lethargic, but he hadn’t slept well all night, so it seemed logical. I ran out to Wal-Mart with my sister-in-law to get some more infant Tylenol and a few Black Friday deals—again, his fever was 101… its November… kids get fevers of 101 from little viruses all the time. Boy did I underestimate this one.
On the way home, RJ called to say Parker’s fever was up to 103-104! I had only been gone an hour—how could it possibly have spiked up so quickly?! Naturally, I assumed he was doing it wrong, but when I walked in the door and took one look at Parker, it was clear things really hadescalated that quickly.
Parker was limp across RJ’s lap with his clothes unbuttoned to try to cool his body and RJ was trying to convince him to take a drink of his water. No reaction. He didn’t reach for me or even notice I was home. He was sick. I took his temperature, hoping RJ was wrong, but it was 104. I dosed him with Tylenol and went upstairs trying not to stress over the fact that my husband was about to get on a plane and head out of town for work in just a few short hours.
I walked back down about 20 minutes later and saw a sight I never want to see again—Parker’s beautiful brown eyes were rolled back in his head, twitching excessively while the rest of his body remained motionless. I screamed to RJ asking what was wrong with his eyes and he tried to startle Parker awake without success. I took his temp again. It was now 105.1 (armpit, so potentially up to 106 actual). In less than two hours, his fever went from barely 101 to 105.1+. I began to panic.
With a cool, damp towel draped over his head, we walked into an over-crowded Urgent Care office and were pushed to the front of the line where they did a chest x-ray (normal), strep test (negative) and blood work. The blood work was suspicious. It told us he was beginning to dehydrate and his white count was elevated along with his inflammatory markers.
With this type of blood work it could be a bacterial infection or viral and they couldn’t tell which it was. Two separate doctors came in to look in his ears and throat—everyone wanted to find something simple to blame the blood work on, but everything looked perfect. And with that, our angel of a NP told me that she wouldn’t sleep that night unless I took him to the ER to be looked at by another doctor.
I will never be able to thank that sweet doctor enough for that gut feeling she had that someone else needed to look at my baby. I can’t even imagine what would’ve happened if we were sent home. And with that, we were off to the Emergency Room with one sick and sad 15 month-old, one scared momma (dad was on a plane supposed to be headed to work at a football game), 0 answers and a head full of fears and questions.
RJ was able to get off the plane and meet us at the ER. I’ll fast forward through this part because it was not a pretty experience for any of us… and we also got no answers. After many hours of refused food and water, an IV, several painful tests and labs, and a few doses of fever reducing medicine that wasn’t helping, and a momma that was about to lose it, we were admitted to the hospital.
Parker was traumatized and afraid and would do nothing but clingto my body and lay his head on my chest. So that’s what we did. I slept in the chair holding my baby—whose 104+-degree body doubled as my heated blanket – and tried to keep him comfortable. I was hoping after a night of fluids, we would be sent home in the morning. Boy was I wrong.
Day 2 – Saturday
The first overnight was rough with very little sleep for either of us. The way Parker clungto my body is a feeling I still can’t shake. He was terrified and in so much pain. He couldn’t handle noise or voices and every time the door opened he started to cry. It was heartbreaking.
An intern came in and took away my hope of going home that day… we still had no answers and Parker was still refusing food and water. When the Doctor came around, he repeated the flu/viral panel done in the ER.
The results were in: Parker tested positive for Adenovirus.
We had an answer. I spent the next several hours researching Adenovirus and felt prepared for anything that could come along with it. At this point, all the symptoms Parker was experiencing could be blamed on the virus. The doctor ordered supportive care and we tried to manage his fever (that was still in the upper 103s-104s) and symptoms to keep him comfortable while he the virus ran its course.
By the afternoon, Parker’s eyelids were becoming puffy. It was clear he was beginning to retain fluids, but I hoped maybe it was due to the lack of sleep and all the crying. I pointed it out to the doctor on his last visit before he left for the day and to RJ when he got back from preaching in Kansas to take over. I went home to snuggle the other kiddos and get some actual sleep in an actual bed. I had no idea I wouldn’t see those sweet brown eyes again for several days.
Day 3 – Sunday
I was not prepared for what I would see when I walked back into the hospital room Sunday morning. The sweet baby with slightly puffy eyes I had left only hours before, was now almost unrecognizable. His eyes were completely swollen shut, his little lips were huge and when I held his tiny body, he was so heavy and stiff; it was hard to hold him. And the pain he was experiencing was abundantly clear. It was hard to witness.
As I leaned down to kiss his swollen face, I noticed a very distinct odor coming from his whole body. I don’t know how to describe it, other than to say it was distinct. It wasn’t what you’d think of as an adult body odor, or even sweaty kids. It didn’t smell like diapers or like a kid that needs a bath. This smell is in a category of its own and I had smelled it before. When my dad was in hospice care, his skin smelled the exact same way. I didn’t think much of the smell of dad’s skin at that time, but it was clearly memorable.
I begged for the nurses to bathe him and to wash his hair. The smell was coming from everywhere! They couldn’t bathe him because he was connected to the IV, but they offered me some wipes. It didn’t work. The smell I remember so clearly, I now realize isn’t a smell that can be cured by a bath… it’s the smell of sick.
It was at this point we stopped sharing photos with family for a few days. The reality and fear we were facing was too much for us to handle being there with him; we knew it would be too much for our family that couldn’t be there. There were absolutely no angles or amount of lighting that could hide the fact that Parker was very sick— all photos simply looked too scary.
Parker was still refusing food and water and despite all the IV fluids, he was not passing much urine at all. The results of his morning blood draw work showed a lot of inflammation, elevated levels of bilirubin and low Albumin, which is basically the proteins in your blood that keep the fluids within the blood vessels.
With low albumin, Parker was experiencing a phenomenon called Third- Spacing, which was causing the horrifying swelling—his blood vessels were essentially leakingthe fluid into the rest of his body, never processing through to be passed as urine. We had an answer. Not a pretty one… but an answer we could attempt to treat.
The rash that came a few hours later was awful. His body was covered and his lips and tongue were red. He began refusing his beloved Wubba-Nub pacifier on day 3 which brought me to tears. There was so much I couldn’t help with and now the one steady piece of comfort I could give my baby, he didn’t even want. It was just too much.
They started a feeding tube and gave him a dose of Albumin to try to stop the leaking and a dose of Lasix (essentially a diuretic) to try to pass the fluids, with little success.
By this point I was basically an expert in Adenovirus and knew the symptoms we were experiencing had exceeded what would be considered normal and my mommy instincts told me there was something wrong. Parker’s doctor confirmed his state was escalating beyond typical Adenovirus, but had no answers for why.
The formerly squishy, kissable little baby belly I was used to was now firm and extended at all times, his cute little umbilical hernia that normally only extends when he flexes, was now protruding constantly. The doctor ordered a belly ultrasound to ensure there wasn’t something else going on inside his belly or bowels causing the swelling. Aside from an inflamed gallbladder, his belly looked normal.
It was during the ultrasound when the tech slipped up and mentioned he was looking signs of Kawasakis Disease, where my thoughts of there being more to this medical case than they were telling me were confirmed.
Day 4 – Monday
Just when I didn’t think a tiny body could possibly hold any more fluid, Parker’s swelling was getting worse. His poor eyes were still completely swollen shut and his entire body was stiff and heavy. This was the beginning of the third day in a row little Parker was in so much pain we sat in the dark and whispered at all times to keep him as comfortable as possible. Anytime a noise or voice was much louder than a whisper or a door opened/closed, it brought Parker to tears. He would still do nothing other than hold tight and cling to our bodies and press his head into our chests, while still refusing his pacifier. He was miserable.
The morning blood draw told us his Albumin levels were still getting worse, despite the Albumin treatment the day before. He was up over 5 lbs. since we were admitted due to all the swelling and his inflammation and platelet levels were still bad. His fever was a bit more controlled, but still lingering between 101 and 102. We weren’t making much progress.
When Parker’s new doctor came around, I was already drained and short tempered and felt like I wasn’t getting to full story. Ultimately, I asked her very directly if she had ever seen a child this sick with Adenovirus before and she confirmed she had not. When kids are as sick as Parker, they start thinking about Kawasaki Disease, she explained. There it was.
She explained they would bring in Infections Disease from Blank Children’s Hospital the next day to evaluate Parker who would ultimately make the call on whether or not to call this Kawasaki Disease and what we should expect if it was. We were overwhelmed.
A new, stronger pain medication provided Parker with a lot more comfort. Another dose of Albumin and Lasix to try to help with the swelling worked slightly better than the first and by evening, his swelling had improved ever so slightly. His rash was going down and a
ppeared much less inflamed, while the yellow tint to his skin began to fade. We were so grateful that Parker was experiencing longer moments of peace!
Day 5 – Tuesday
I woke to a text from RJ that the night had been rough, but Parker could open his eyes! I rushed to the hospital to see him!
The moment I walked in, I could see his swelling had improved. Although still very swollen, his face was beginning to look like his face again and his eyes were open about half way. The room was dark because the light was still uncomfortable for him, but I slowly approached him and put my face in front of his and in my softest excited voice said “Hi Buddy!”
No response. No expression. No recognition. Nothing.
My excitement quickly transitioned to sadness when I realized even though his eyes were open, he wasn’t there. He didn’t see me at all. The eyes I was seeing were not Parker’s eyes and they couldn’t seem to focus and he definitely couldn’t see.
This was the day of our much-anticipated Infections Disease appointment and it did not disappoint. Dr. Moodley from Blank came over and sat down with us for an entire hour going through everything from what got us here, looking at the photos I had taken thus far, evaluating Parker and answering every. single. one. of my 4 million questions.
On physical exam, by day 5 he was still experiencing fevers in the 101s, his rash was essentially gone and his swelling had improved quite a bit in his face. He was unable sit up, support his own head or move on his own. With his belly so big and swollen, his most comfortable position was now flat on his back on my chest, with his head supported at all times. His ears, throat and the skin on his hands/feet were clear, but his body was still very stiff and when the doctor tried to move his neck, Parker lost his mind. The pain must’ve been excruciating, which absolutely broke my heart. This poor boy had been through so much already!
At this point, essentially what we knew is thatParker definitely had Adenovirus, which would clear on its own with time. What we didn’t know is what was causing the excessive inflammation and low Albumin (protein that keeps fluid in the vessels) and low platelets, because those don’t typically present with Adenovirus. So he was leaning toward Kawasaki Disease.But because Parker’s case was so unusual, Dr. Moodley wanted to give it 24 more hours to see what symptoms and labs would change and see if it would bring more clarity.
There was no clear answer –No obvious diagnosis and I needed some hope! I had been trying to convince myself I was being dramatic and he wasn’t really as sick as I thought, so at the end of our conversation I was looking for some reassurance.
“He’s going to be okay though, right?” I asked.
I so badly needed someone to tell me he was going to be fine. Sure, he was sick, but we were going to get through this and he was going to get better. I needed his reassurance to terminate my fear that I may not ever leave here with my baby… but I didn’t get it.
He paused for a moment and looked at me with very empathetic and sincere eyes; He inhaled slowly and simply said, “he’s really sick”.
These words would haunt me for the next several days. He wasreally sick. This really washappening. I was so afraid and all we could do was wait.
Day 6- Wednesday
We waited around all morning for the Infectious Disease Doc to come back and see Parker and suddenly everything was moving fast and our heads were spinning with information, questions and fear. As excited as I had been about Parkers little improvements, the ID Doc was not impressed. He was still just so, so sick.
Ultimately, He was still not convinced Parker had Kawasaki Disease, but it was close enough and we were running out of time to start treatment to avoid potentially fatal heart damage, so he made the call that we would start treatment for "Atypical Kawasaki Disease" regardless. They would do IVIG, which is essentially a blood antibody transfusion to go in and “kick some ass”, to use our doctor’s words.
If it was in fact Atypical Kawasaki Disease, we were told to expect improvement in Parker’s awareness and ability to interact in the next 24 hours. I now had a timeline and I was clutching to it ever so tightly. Hope.
We would start treatment soon, but because we weren’t dealing with typical Kawasaki disease, Dr. Moodley didn’t want to miss another root cause if his inflammation and neck/body pain, so Parker would need a spinal tap and more blood work to check for other potential causes, such as meningitis etc.
I was still processing this news, when the tech showed up to ultrasound his heart to get our baseline from which to monitor any change over the next several weeks. I sat in the tiny crib hospital bed, trying to keep Parker still and calm for his echo, trying to catch my breath while they made plans for his spinal tap and blood work.
After his spinal tap, Parker was so nauseous from the anesthesia, he couldn’t tolerate being moved so I wasn’t able to carry him back to the room or hold him when we got back, which was really hard on me. As they began the IVIG treatments, I stood at the foot of his hospital bed and just stared at him in complete disbelief. His tiny body was lifeless and I was completely helpless and still in complete shock that this was really happening. I was so broken.
It had been just under 3 hours since they started the IVIG treatment and out of nowhere, we literally watched our almighty God put the life back into his tiny, swollen body. His whole body startled like he used to as a newborn and he began to whimper, immediately trying to sit up and reach for us, nearly jumping out of the bed.
I scooped him out of bed and for the first time in 6 days he was fully aware of all the tubes and monitors he was connected to and he wasn’t happy about it. His eyes were still visibly unfocused and wondered, but when tried to distract him with a toy and he actually reached for it! HE COULD SEE!!
We were watching God perform a miracle before our eyes and my heart that had been full of fear and sadness was now replaced with hope and happiness!
Day 7 – Thursday
Watching those antibodies work overnight was nothing short of miraculous. For the first time in 7 days, Parker was finally fever free! And we finally got some answers.
Because the IVIG treatment was working so beautifully, Dr. Moodley was feeling more confident in the Atypical Kawasaki Disease diagnosis. His spinal tap results, however, indicated he was also suffering from Aseptic (non-bacterial) Meningitis. Because it was non-bacterial, there wasn’t any treatment required, but explained some of his severe pain, inability to move his body parts, head, severe headaches etc. We were seeing improvements throughout the day, but still had a ways to go.
The most amazing part of the day was that Parker was actually grabbing for toys, was super thirsty and even took a little food by mouth, although he still had his feeding tube in for meds. He still wasn’t able to sit up on his own and was only comfortable in a reclined position with his head supported. He also still wouldn’t put any weight on his legs and was having trouble focusing his eyes to really engage with us, which as a mom, was tough to process. I really thought that once the swelling came out of his eyes and he could physically open them, he’d be there just like normal, but that is taking a little longer to recover from. The doctors felt these were all related to the Kawasaki Disease and would get better in the coming days, but they were watching him close and planned to do a brain scan if we didn’t see improvement.
Overall, his swelling had come down a ton, but he was still up 5.28 lbs (from just 22 tiny little pounds) since he was admitted to the hospital from the severe swelling.
The highlight of this day was when we were playing peek-a-boo, I finally got a little tiny grin out of Parker! A grin I hadn’t seen now in over a week! It was beautiful.
Day 8 – Friday
We started taking baby steps of improvement this day. Physical Therapy was able to get Parker to take two steps on his own, but he was just so exhausted and was clearly still in pain. The doctor explained his improvement now will be gradual and that we shouldn’t expect to have our normal Parker back for at least 2 more weeks.
His blood work showed a great improvement in his inflammation, but it was still high. His beautiful brown eyes were gaining more focus and he was down almost 3 lbs of swelling from the night before!! (Which probably reduced his joint swelling / pain enough to allow him some more movement). We still had about 2 lbs. of swelling to go, but his little belly actually felt like a squishy baby belly again!
Today marked 48 hours fever-free post IVIG treatment—a huge milestone for Kawasaki patients. He was switched to low dose aspirin (which he would have to be on for a couple months) from his high dose aspirin for those first 48 hours. He was still getting most of his nutrients from his feeding tube because he just wouldn’t eat or drink enough.
Day 9 – Saturday
We didn’t see a significant change in Parker’s condition... still taking those little baby steps. He spent most of the day sleeping and not wanting to engage in much activity. However, he did have one period of higher energy in the late afternoon, which was glorious because for the first time in 10 days I got to see a big, classic, cheesy Parker smile! It was even accompanied by a quick little giggle!
His doctors really wanted to see more activity though. Parker though, would much rather rest his head on me than hold it himself and if he sat up for very long (with support), he kept turning back to me and laying his head on my chest for quite a while. It was almost like something was making him dizzy. The doctors were looking for improvement in that by Monday or they were planning to do an MRI of his brain and spinal cord. What we know now is the meningitis and swelling around his brain was putting pressure on his optic nerve and was likely causing dizziness and double vision, which would improve on its own as the swelling continued to improve.
Although he was still dependent on his feeding tube for nutrients, the highlight of the day was the doctor allowed Parker out of his room for a wagon ride! It was so great to get out of that room for the first time in 9 days!
Day 10 – Sunday
Parker’s lab work and physical strength continued to make small improvements! We were beginning to feel like Parker was failing to thrive within the hospital because he was traumatized. We begged the doctor to allow us to take him outside and she gave us 30 minutes. It was the most exciting 30 minutes we had had in a long time!
We took the boys for a walk in the stroller and enjoyed a rooftop commons area where Parker actually walked around for a little! We knew we needed to get him home and let him begin to heal emotionally as well as physically. With our promise that we would bring him back if he was refusing food or water, by late afternoon the doctor finally agreed to discharge us and we went HOME!!!!
The weeks / months to come…
It took a full week after discharge for the dizziness to wear off, two weeks for him to completely regain his eye control and close to 8 weeks for him to fully regain his strength. He spent 6 weeks on aspirin therapy and under the care of Pediatric Cardiology and Infections Disease until his platelet levels finally returned to normal at his 6 week follow up.
Looking back at the last year, I cannot believe how far he has come. Although he still struggles with occasional, severe joint pain, he has made a full recovery! He’s doing all the crazy, hilarious and naughty things any two year old should be doing and we are so blessed!
While I hope nobody ever has to go through a similar experience, I hope sharing Parker’s story will bring a little more awareness to what Kawasaki Disease is and what it can look like. Please, please remember that sometimes a fever is not just a fever.