I know it sounds like a motorcycle or jet ski... but Kawasaki Syndrome is a serious condition that affects 1 in 271,440 in the United States... and Khyri had it.
Back in April, when I picked up Khyri from Pre-K he wasn't his normal jovial self. I asked him what was wrong and he said he was tired and just needed to rest. Now that is a big No-No for Khyri; he hasn't taken a nap since he was 2.5 years old. I knew he was a little sick so I just took it easy that afternoon and went by the old townhouse to get some things fixed for future tenants. Now Khyri swears he is Bob the Builder in real life, so when he declined helping me unscrew the electrical outlets I knew this ailment was something I needed to keep an eye on.
I asked him if he had eaten anything new or if he was really thirsty. He just said, "I want to sleep." So off to the house we went. This was Thursday afternoon. He slept all day and didn't eat any dinner. His temperature was high, but during the move we lost our thermometer so I didn't know exactly how high it was. I decided to give him a cool bath and tried to get him to increase his liquids. I called hubby and asked him to pick up a thermometer from CVS on the way home. Good thing - Khyri's temperature was 104. Now my mommy-sense told me to take him to the ER right away, but hubby said that we should just watch him and see what happens overnight. So I did.
Friday morning I woke Khyri up for school and he was still burning up - now 104.4 and he had red splotches all over his chest. So right after hubby leaves for work with Kielle, I snatch up Khyri and head to the closest ER, Emory Adventist at Smyrna. My first mind was to go to the primary children's hospital in Atlanta, Children's Helathcare of Atlanta at Scottish Rite, but hubby insisted the whole night that I was exaggerating, so I just went over to Emory. BIG MISTAKE.
First off Emory Adventist of Smyrna (EAS) is not a children's hospital. The doctor said that Khyri had a UTI. what!?!? Since when do UTIs come with rashes?!?! ummmm Sir even I know that much! C'mon now. They ran a whole bunch of tests and this is when I started to get nervous because no one knew what Khyri had. Everybody looked clueless. They took chest xrays and Khyri was a champ. He said to the technician, "when do you want me to smile?" hahahhahahaha. I think he was ok with the hospital and doctors because I told him on the ride over that the doctors would fix him and make him feel better. After being at EAS for close to 3 hours, I suggested that they do a phone consult with Children's Healthcare of Atlanta (CHOA). Smart thinking mommy! Khyri's blood test came back with elevated white blood cells so they knew he was fighting off an infection, we just needed to know which infection he was trying to ward off. What I did know, was that it was not a daggone UTI. Send us to CHOA please.
After the phone consult, the doctor came back and told us that we needed to be transported to CHOA immediately. I'm silently freaking out; I wasn't showing and I hadn't told anyone I was pregnant. I didn't want to say anything, because they might make me leave him and I didn't want to do that. So away we went... into an ambulance, which Khyri loved, and went straight to the ER at CHOA. Now this is where I messed up, again, not following my first mind. When we got into the ambulance, the paramedics were like,"Let's give him Benedryl; this just looks like an allergy." Now here's the thing - I know I was a little skeptical of the folks over at EAS, but something as simple as Benedryl... I think they could've figured that out. But I didn't' speak up; I didn't say anything. So they pumped my baby with an IV of Benedryl.
Weeeellllllll... my sweet little Khyri turned into a straight terror. Once we got to CHOA, he started yelling at the orderlies and being real ornery. When I told the pediatrician that the paramedics gave him IV Benedryl, he was so angry. He said that a lot of kids have a bad reaction to Benedryl intravenously. It makes them very irate. Great. Just Great. So here I am four months pregnant with an irate child with some unknown ailment in a hospital. It was not a good Friday at all...
So we roll into the ER and as soon as Doctor Ogelsby saw him, she said; "Well I don't think its a UTI, I think it might be something called Kawasaki." So you know my face screwed up like HUH?!?! I had never heard of this AT ALL and my phone was dead so I couldn't even google it. By this time, Khyri's whole face had turned red and his tongue was starting to swell up, they call this a strawberry tongue. When they moved us up to the inpatient floor, the nurses came in with the hazmat suits on because they still had not definitively determined what Khyri had. CHOA called over an infectious disease specialist, Dr. Shore, and he gave his diagnosis. Yup it was Kawasaki alright. He said it was good that we brought him in so early because basically Kawasaki only shows symptoms for 10 days and then after that it vanishes and people think they're ok. What they don't realize, however, is that their heart and blood have been affected and may lead to adolescent heart disease or failure. You know how every summer we hear about teenagers trying out for sports teams and falling out on the court or on the field?!!? They now think that these instances are due to Kawasaki not being detected. So strange!...and scary!
Here are the symptoms and phases for Kawasaki from the Mayo Clinic:
Kawasaki disease symptoms appear in phases.
First phase
Signs and symptoms of the first phase may include:
- Fever which often is higher than 102.2 F (39 C) and lasts more than five days
- Extremely red eyes (conjunctivitis) without a thick discharge
- A rash on the main part of the body (trunk) and in the genital area
- Red, dry, cracked lips and an extremely red, swollen tongue (strawberry tongue)
- Swollen, red skin on the palms of the hands and the soles of the feet
- Swollen lymph nodes in the neck and perhaps elsewhere
- Irritability
Second phase
In the second phase of the disease, your child may develop:
- Peeling of the skin on the hands and feet, especially the tips of the fingers and toes, often in large sheets
- Joint pain
- Diarrhea
- Vomiting
- Abdominal pain
Third phase
In the third phase of the disease, signs and symptoms slowly go away
unless complications develop. It may be as long as eight weeks before
energy levels seem normal again.
Khyri had ALL of the symptoms by the time we arrived at CHOA.
Luckily we got to the hospital during Phase 1; so we caught it early. To treat the infection, Khyri had to receive two rounds of Immunoglobin which reduced the inflammation of his blood vessels and he was also put on a high dosage of aspirin. We had to stay in the hospital for 6 days; it was horrible. Every hour or so the nurse would come in and take his temperature and blood pressure, so he couldn't get good sleep. He had to have 2 echocardiograms while we were there also. Once his symptoms subsided around day 4, Khyri was ready to go. Because he could not see the rash he assumed he was ok. It was very difficult to explain to him that he needed to stay a little longer to make sure his insides were ok too.
I must say, though, that I absolutely love CHOA. The staff there is wonderful and the doctor's keep you fully informed. I've told my friend Jennifer that I always keep a Tufts sweatshirt in my car in case I have to go to the doctor or hospital. I find that when they know I'm educated they treat me differently. I could be completely wrong, but I tell you every nurse or doctor that saw my Tufts jacket was like,"oh you went to Tufts?!?" sure did... now tell me the whole truth about this disease please...
Anyway, while we were at the hospital, I kept in contact with Khyri's school to let them know what was happening. They were very understanding and supportive. Kielle and daddy came by every night to visit and stay for awhile. At first Kielle was scared, but after 10 minutes or so they were back to their normal bantering. At one point Khyri was raising his hospital bed higher and I asked him what he was doing. His reply, "I'm raising the bed so Kielle can't get on." Yeah... he was starting to feel better for sure :-) After 6 days in the hospital we finally checked out and were cleared to go home. Khyri was given a prescription for an antibiotic and high dose aspirin. We had about 6 or 7 follow up visits with the infectious disease pediatrician and two additional echocardiograms. Khyri has had enough of doctors and nurses. Its really bad. We were in the grocery store and saw a nurse in scrubs and Khyri pointed to her and said, " I don't like nurses." poor girl was just getting some zucchini. eeeekkks. I explained that we had just had a rough bout in CHOA and she said she understood. This fear of doctors and nurses went on for about 2 months; its was horrible. He had truly been traumatized. Anyway, Khyri went into the hospital on April 11, 2014 and I kept him out of school until May 1st. They said that he woudln't be back to 100% energy, so I didn't want to rush it.
The month following his hospital stay, Khyri's whole body peeled. I'm talking head, toes, face, hands, lips, everything. This was completely normal, but it looked very painful and odd to people not in the know. As he shed we just talked about how Dr. Shore said that the peeling means that he was getting better. This seemed to satisfy him and when he returned to class this is what he told his friends.
The first day back was difficult for him. When we got to the door the kids were so excited that they rushed to the door and, I think, overwhelmed him. He started crying and saying he didn't want to go back yet. I said ok. He had been talking about going to see his friends the week before so I knew he was ready, I just think it was a little too much. I took him out to lunch and said,"Well maybe we can try again later." He agreed and this time I had daddy take him to class. I think Ms. Princess and Ms. Wakiaa must have talked to the students because daddy said the kids didn't rush the door this time, they just kinda calmly welcomed him back :-) I gotta admit it was scary leaving him there. Its nerve wrecking to think of what can go wrong and how quickly it can go wrong; but he was happy to be back to "normal" Khyri :-)
I have to take this time to thank everyone that provided calming words for us during this time. I tell you guys I was a wreck. For Real. Khyri has never taken medication or anything so this was just like huh!?!? what!?!? I guess we had 5 good years drama free so this was in the pipeline...We couldn't have made it through without the visits, gifts, and smiles. Lloyd, thanks for being the one to get Khyri to finally eat after 3 days. Jennifer, thanks so much for just sitting with me in the room; it was a good break from the obvious. Soror and Brother Carter, as always you guys support and rescue us in our times (yes multiple times) of need. Thank you so much for watching Kielle and introducing her to tea parties :-) Marcus, Erica, and Vonetta thanks for dropping by and making sure we hadn't lost our minds. And then there are those who aren't in Atlanta but your good wishes reached us via AT&T :-) Jamila, Khyri LOVED his balloon and teddy bear! Who knew you could order gifts from the hospital gift shop like that!!? ahahahahah Thank you! Thank you! Thank you! My family and friends are absolutely AMAZING!
Between Kielle opening up the year 2014 by putting a battery up her nose, Khyri's Kawasaki, and Cinco's arrival in September, I can honestly say the Mosleys are SO over hospitals!
