My Daughter’s Kawasaki Syndrome Saga by Sara Gallor

My Daughter’s Kawasaki Syndrome Saga by Sara Gallor

Day #1 (Chol Hamoed Pesach): My 4-year-old, Menucha, woke up and said to me, “Mommy, in the night I touched my head and it felt boiling hot.” I touched Menucha’s head and, lo and behold, it was boiling hot. The thermometer showed 101. Her fever didn’t budge the whole day, she didn’t eat or drink much but we pushed it aside as a normal random kid-getting-sick thing.

Day#2: When Menucha woke up, the thermometer read 102.5. I picked up Menucha who felt boiling hot at this point and put her into the bath to lower her fever. She played a little bit and said, “Mommy, I’m putting this wet washcloth on my booboo cuz it makes it feel better.” What booboo? I looked and noticed that her left lymph node on the side of her neck was HUMONGOUS! I’ve heard of swollen glands, but not ones so huge that I can see them!

Day #3 (Erev Last-Days of Pesach): Menucha’s fever was at around 103. My Mommy radar was brought up slightly by the fact that the fever was getting higher every day. Also by the fact that none of my other kids were getting sick and no one in the neighborhood had mentioned anything about any viruses running around. Menucha hadn’t eaten in 3 days, and had only taken small sips of water. At around 9am, she went to the bathroom and came out saying, “Mommy there’s a rash on my leg, I need some cream.” I looked and was shocked at the big pink dots all over her leg. “GET HER TO A DOCTOR!” was the consensus of my husband, my parents, and my grandmother (to whom I had been reporting daily).

The doctor’s receptionist took one look at Menucha and were extremely sympathetic. I didn’t feel so concerned about the fever, but rather about her refusal to eat anything.

The doctor did a lot of hemming and hawing and decided to test her for strep. He said that if the test came back negative, we could assume the lymph node was infected and put her on antibiotics. The test was negative. Then, before we left, the doctor said, “If she still has the fever by Saturday, I’d like to see her again.” It was Thursday, and Yom Tov was starting in about 5 hours. I knew my husband would not like me coming home without more information about why we’d have to call the doctor on Shabbos. So I asked the doctor what he was still concerned about. He mentioned mono, and then he mentioned some weird disease called Cow-a-socki or something. I asked if it was serious enough that it couldn’t wait until Monday and he said “Yes, this disease can sometimes affect the heart.” Yikes!

We ran around trying to juggle packing up to go to my in-laws and getting the pharmacy to understand that we needed these antibiotics IMMEDIATELY.

Day #4 (Friday, 7th day of Pesach): The night before, Menucha had started throwing up any little bit of anything that we were able to get her to swallow. She just lay on the couch falling in and out of sleep. We tried giving her the antibiotics, but she vomited up everything she swallowed within the half hour. We were getting nervous. We noticed she developed a bumpy looking rash on her tongue and her eyes were looking extremely bloodshot. Since we were at my in-laws, who also had some other family guests, we got a lot of opinions. My husband kept saying that it wouldn’t make any difference to wait until Motzei Shabbos to contact the doctor. But my father-in-law was all for calling a taxi and taking Menucha to the hospital. Children’s Hospital was a 40 minute walk away.

By evening, about an hour before it was time to light Shabbos candles, the vote was unanimous – get her to a hospital quick.

My husband picked up the phone and sat for 20 minutes trying to get a taxi. There was a huge Mariners game that night and there were no taxis available! So we wrapped Menucha up, stuck her in a stroller, packed up some matza and drinks and did the 40 minute walk. Menucha, all wrapped up, kept saying, “I’m not falling asleep because I’m really curious to see what’s going to happen.” Her sister, who is obsessed with anything medical was extremely jealous that she couldn’t come along.

The nurse listened to our story and made us wait in the waiting room for about an hour. Menucha fell asleep pretty quickly. They finally took us into the Triage room around 9:30 PM. I kept feeling like we were going to look really stupid, coming in with a child who only has a fever. They took her temperature and she was at 105!! Boy, was I glad we were there! They forced her to take some Tylenol which she promptly threw up.

Finally, around 11pm, we got the diagnosis. Menucha probably had Kawasaki Disease and we would not be taking her home that night. What a shocker, I really had thought it was going to turn out to be nothing serious. They printed up lots of articles about Kawasaki Disease for us to read. We learned that this disease causes inflammation in different arteries, and if not treated, it can affect the arteries around the heart, which can be fatal.

The doctors have no clue how Menucha got the disease, as they don’t know too much about it to begin with. It’s more common in Japan and when in America, more common in boys. I look at it as one of those random diseases that Hashem handpicks different people to get. That’s why they can’t find any common denominator for any of it. They told us that Menucha needed to stay in the hospital, but that she can’t be treated until she’s had a fever for 5 days, because that’s one of the leading proofs that she has Kawasaki Disease.

This was the beginning of our long trek towards recovery. Menucha ended up staying in the hospital for 5 days and had to be treated twice. They told us that most kids show a full recovery after the first treatment. However, Menucha continued to have a fever afterwards and wasn’t showing much sign of any recovery, so they decided to treat her again.

My husband and I traded places back and forth. One of us stayed with Menucha and catered to her every need while the other one held the fort back at home, whilst trying to get the house back into chametz mode. Our community and friends just kept offering their help, around the clock.

Menucha was miserable. She hated all the nurses touching her all the time, hated all the medicines that they made her take. We had to hold her down with force and ignore her screams every few hours when they made her take tylenol and aspirin. She was on a very high dosage of aspirin during the treatment to prevent blood clots and aneurysms.

Menucha also had lots and lots of visitors. From her classmates and her sister and other friends and relatives.

Menucha receives a hospital visit from her sister Rochel Miriam


Menucha was finally released from the hospital after 5 days. Everyone was so incredibly happy to have her home! However, she is still on the mend, not fully recovered. This past, Friday we took her to the doctor for a follow-up. The doctor didn’t like what he saw –swollen feet and hands, irritability and no desire to get up and do anything. He said we should take a blood test and if her swelling numbers were above a 6, she’d need to be re-hospitalized.

I sent out a massive text, asking everyone to daven for her (Menucha Leah Bas Sara Chana). I knew this was the big time for tefillos – when Hashem can change the outcome without it having to be a public miracle. My husband and I sat down and decided what to do in our life as a merit for Menucha’s recovery. We decided to try to have a family dinner every night and for all of us to discuss the blessings that we noticed in our day. Our children have been loving this!

5 minutes before Shabbos, we got the answer. Her numbers were low enough that we didn’t have to repeat everything. Thank you, Hashem for all the chessed you’ve done for us throughout our Kawasaki journey! And thanks to all of our friends who were there for us, and still continue to offer their help daily.

Maybe I’ve been in denial, but I’ve never really thought of this journey as a nisayon. I always knew she’d get better and that nothing serious was going to happen. Menucha herself has such wonderful faith in Hashem. Once when the nurses were forcing her to take some medicine, Menucha said, “I don’t need medicine! I’ll just ask Hashem to make me better.” Then she proceeded to daven to Hashem right there in front of everyone.

Yes, it’s hard having to run back and forth between the hospital and home and jumping between two different parenting roles, but because this is such a strange, rare sickness – it almost feels like Hashem just handpicked us to have to deal with this. So now I guess my job is to figure out how I can use this to elevate my mothering.

But first I need to get some sleep, Menucha is still waking up at all hours, and I am exhausted!

Here’s a few things Menucha and I discussed on our last day in the hospital:

Tell me about your hospital visit:

It was good when it first started. Then when I drank medicine I didn’t like it. That’s all I figured out.

What does it feel like to have Kawasaki Disease?

Yucky

What did you miss the most while in the hospital?

Rochel Miriam (her sister and best friend)

What was fun about the hospital?

When I got to go home.

What was the worst part?

Me drinking Kawasaki medicine.

What will you miss the most when you leave the hospital

Nothing of everything.

If you have a friend in the hospital, what would you tell them?

That I love them.

What’s the first thing you’ll do when you get home?

Play with my Polly Pockets.

If you could change one thing about the hospital, what would it be?

NO DRINKING MEDICINE!

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4 comments

  1. Leslie Serkeb

    Wonderful and informative article. Great writing Sara. Hope Menucha is feeling like herself soon.

  2. Sasha Mail

    Thanks for the update Sarah. We were wondering what happened. Glad Menucha is on the mend, may she continue to have a Refuah and such strong faith in Hashem. I look forward to seeing you all healthy soon.

  3. Shoshana M

    Never easy when a kid is sick… Amazing article and parenting! 🙂 we are all still thinking of Menucha daily!
    Shoshana

  4. poor baby…refua shlema!!! she gets her bitachon b’Hashem from her mommy!! All the best!

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