A mother's intuition should never be ignored. I learned the hard way. This story is lengthy. But it could be important for those of you who have small children. After my last post, Madeline woke up with the same high fever on Thursday. She was extremely cranky and it seemed no matter how much Tylenol or Advil we dosed her up with, she never seemed to get rid of the fever. We headed out to St. Louis knowing she would be able to be checked out by Caroline (our friend and amazing pediatrician!). At our first stop, I noticed her cheeks had a red rash on them and the parts around her mouth were pale. I quickly googled those symptoms and Scarlet Fever popped up. I made her stick out her tongue and she had the same strawberry bumps the images showed as well for Scarlet Fever. Tom told me to stop being Dr. Google and leave it to the professionals...so I did.
When we arrived in St. Louis, Caroline checked her out and prescribed an antibiotic. I think we all hoped it was just an ear infection gone crazy or something that could be treated with an antibiotic, but I never got an answer and deep down I knew we needed to get her throat swabbed or ears scoped. I'm an answer kind of girl. All day Thursday Madeline wasn't herself. She got her first dose of meds, but I kept telling Tom we needed to take her to the ER or a walk-in clinic because I just wasn't comfortable not knowing what exactly was wrong with her. Tom couldn't understand my need to "know". But for any parent it's important to know your child's medical history and this sickness will play a role in it.
That night Madeline crawled into our bed and she was burning up again. She couldn't sleep. I barely slept. Tom left the bed because Madeline was tossing and turning. I was losing my patience with Tom because as a male, he just kept thinking she would be fine and the antibiotic that Caroline prescribed would kick in soon. It never did, and while everyone went out to dinner that night I stayed home with an extremely lethargic baby girl and Sam...and did what any grown woman would do: called my mom. And cried. I cried because I couldn't sit there anymore and see Madeline so sick. I cried because nobody around me seemed to see what I was seeing or was listening to what I wanted to do. I felt like I was the crazy one for thinking my kid was even sick. I didn't want to step on Caroline's toes because she is our friend and a doctor, but my usual VERY spunky, energetic, smiling, happy two-year old was a complete mess. Her eyes had red rings around them. The whites of her eyes were red. Her eyelids and the skin below her eyes started to peel. Her lips were blood red and cracking and peeling. The bumps on her tongue were profound. She had a rash on various parts of her body. She wasn't eating or drinking. This fever had been going on since Monday night. I had had enough and after my mom listened to me cry for a bit, she said trust your instincts and do what you have been wanting to do for days. So I did. When everyone came home, I didn't ask for anyone's opinion nor did I ask Tom what he wanted to do. I simply let them know I was taking Madeline to the ER. Luckily, Caroline agreed and drove us there. Thank goodness, too because I had absolutely no idea where I was going and she was so helpful and informative when the ER doctors were talking to me. Tom stayed with Sam and Ella since we didn't want Sam around the germs of the ER.
We got to St. Louis Children's Hospital and they dosed her up with some Tylenol since her temp was 101.5. We were brought back to a room right away. (Maybe it's a good thing Caroline is a pediatrician at this hospital?) When the dr saw her he almost immediately started referring to Kawasaki Disease. Now, this wasn't the first time I had heard of this. I saw it listed under Scarlet Fever on google the day before, and Tom's mom mentioned he had it as a child, too a few hours prior. I just figured there was no way she would have that because 1. WHAT THE HECK is that disease? And 2. It just sounded too ridiculous to even look at the symptoms. But I should have read further on google darn it.
He ordered a blood panel, nose swab, and throat swab to rule out other known viruses or streps. Her heart rate was so high that he detected a murmur as well, but it turned out to be from dehydration and nothing to worry about. Whew;) The nose swab was difficult to watch. It was as if the nurse was trying to reach Madeline's brain through her nasal passage. I had to turn my head. And then she was gagged with the throat swab. AND then, they put the IV in her. My poor, sweet child. Her screams were just too much for me. I literally just laid my head against her back because I couldn't bear to watch it all. Somewhere in between all of this mess I promised her an iPad. Don't judge. (Note: She later accepted a Minnie Mouse toy instead)
The Dr. let me know they would be admitting her because he was pretty certain it was Kawasaki Disease. They needed to watch for the 5th day of a fever and then they treat KD on the 7th day. I'm pretty sure I stopped listening after a certain point because I just couldn't believe we would have to stay in a hospital. In a city we didn't know, in a hospital we didn't know, to be treated for a disease we knew nothing about. Our roadtrip to Newport just became nonexistent for a moment.
When Caroline left the room to meet Tom outside to show him the way up, I broke down in tears. I had such mom guilt for not getting her to the ER sooner. I hated myself for it. Looking at her so very sick broke my heart in a million pieces. Seeing me cry, Madeline picked her head up, looked right at me and said "It's ok, mama. You're beautiful." She smiled, and put her head back down. I leaned over and gave her a big kiss on her heated forehead and said "You're more beautiful, but thank you, sweet girl." Not until she reads this blog in twenty years will she ever realize how much I needed that moment. Here she was trying to make me feel better when all I wanted more than anything else was to make her feel better.
And so began Madeline's hospital stay. The team of doctors explained to us about Kawasaki Disease and how her blood panels were consistent with it (turns out her liver numbers were triple the norm) and she had every symptom minus the 5th day of a fever. They talked about the treatment for it and how they would monitor her all night and see if the fever returned. I crawled into bed with my baby girl (it was almost 2am by then) and Tom went back to Luke and Caroline's house to be with Sam and Ella. Madeline woke up on Saturday and had to have an echocardiogram and ultrasound of her heart. After everyone came to visit her that morning, she slept for the rest of the day. By the evening her mood was better. She was smiling and talking again and the doctors all fell in love with her personality and big brown eyes. They laughed when she let them know the hospital gown with fish on it wasn't pretty and she preferred the dress her daddy packed for her instead. Madeline's fever never returned high enough for the doctors to be 100% certain it was Kawasaki Disease (even though she continued to show more signs...swollen fingers and toes, swollen lymph nodes, rash on her inner thighs.) We were all thrilled that she was getting "better" without any medicinal interventions. One doctor told me she only hoped for such drastic improvements, but didn't always see them. After 36 hours of being fever free (100.4 and below), the doctors felt comfortable discharging her on Sunday knowing we were staying one last night in town just in case. They did one last blood draw and her liver numbers were improving so I felt comfortable knowing she was slowly, but surely, on the mend from whatever "virus" it was that crazily took over her small body.
In the end, we left with no specific answers. I absolutely hate not knowing what "it" was, but I am happy and grateful we took her to the ER. God gives every mom that special little intuition power when she has babies, and I will never push it aside again. Her hospital stay made me realize so many things...but mainly, just how much I absolutely love my children and how I can't begin to fathom how parents deal with their really sick babies on a daily basis. We are so very lucky this was just a virus and nothing more permanent. Madeline is getting better everyday...still not her usual self and it's hard for me to see that, but they say it might take weeks for her to completely heal. Let's just hope it's sooner, rather than later, because I truly miss my sweet, vibrant, lively little girl! We will need to follow up with a pediatrician here in Newport to make sure everything is going well so please keep her in your thoughts and prayers:)
Checking out her lunch
When we arrived in St. Louis, Caroline checked her out and prescribed an antibiotic. I think we all hoped it was just an ear infection gone crazy or something that could be treated with an antibiotic, but I never got an answer and deep down I knew we needed to get her throat swabbed or ears scoped. I'm an answer kind of girl. All day Thursday Madeline wasn't herself. She got her first dose of meds, but I kept telling Tom we needed to take her to the ER or a walk-in clinic because I just wasn't comfortable not knowing what exactly was wrong with her. Tom couldn't understand my need to "know". But for any parent it's important to know your child's medical history and this sickness will play a role in it.
That night Madeline crawled into our bed and she was burning up again. She couldn't sleep. I barely slept. Tom left the bed because Madeline was tossing and turning. I was losing my patience with Tom because as a male, he just kept thinking she would be fine and the antibiotic that Caroline prescribed would kick in soon. It never did, and while everyone went out to dinner that night I stayed home with an extremely lethargic baby girl and Sam...and did what any grown woman would do: called my mom. And cried. I cried because I couldn't sit there anymore and see Madeline so sick. I cried because nobody around me seemed to see what I was seeing or was listening to what I wanted to do. I felt like I was the crazy one for thinking my kid was even sick. I didn't want to step on Caroline's toes because she is our friend and a doctor, but my usual VERY spunky, energetic, smiling, happy two-year old was a complete mess. Her eyes had red rings around them. The whites of her eyes were red. Her eyelids and the skin below her eyes started to peel. Her lips were blood red and cracking and peeling. The bumps on her tongue were profound. She had a rash on various parts of her body. She wasn't eating or drinking. This fever had been going on since Monday night. I had had enough and after my mom listened to me cry for a bit, she said trust your instincts and do what you have been wanting to do for days. So I did. When everyone came home, I didn't ask for anyone's opinion nor did I ask Tom what he wanted to do. I simply let them know I was taking Madeline to the ER. Luckily, Caroline agreed and drove us there. Thank goodness, too because I had absolutely no idea where I was going and she was so helpful and informative when the ER doctors were talking to me. Tom stayed with Sam and Ella since we didn't want Sam around the germs of the ER.
We got to St. Louis Children's Hospital and they dosed her up with some Tylenol since her temp was 101.5. We were brought back to a room right away. (Maybe it's a good thing Caroline is a pediatrician at this hospital?) When the dr saw her he almost immediately started referring to Kawasaki Disease. Now, this wasn't the first time I had heard of this. I saw it listed under Scarlet Fever on google the day before, and Tom's mom mentioned he had it as a child, too a few hours prior. I just figured there was no way she would have that because 1. WHAT THE HECK is that disease? And 2. It just sounded too ridiculous to even look at the symptoms. But I should have read further on google darn it.
He ordered a blood panel, nose swab, and throat swab to rule out other known viruses or streps. Her heart rate was so high that he detected a murmur as well, but it turned out to be from dehydration and nothing to worry about. Whew;) The nose swab was difficult to watch. It was as if the nurse was trying to reach Madeline's brain through her nasal passage. I had to turn my head. And then she was gagged with the throat swab. AND then, they put the IV in her. My poor, sweet child. Her screams were just too much for me. I literally just laid my head against her back because I couldn't bear to watch it all. Somewhere in between all of this mess I promised her an iPad. Don't judge. (Note: She later accepted a Minnie Mouse toy instead)
The Dr. let me know they would be admitting her because he was pretty certain it was Kawasaki Disease. They needed to watch for the 5th day of a fever and then they treat KD on the 7th day. I'm pretty sure I stopped listening after a certain point because I just couldn't believe we would have to stay in a hospital. In a city we didn't know, in a hospital we didn't know, to be treated for a disease we knew nothing about. Our roadtrip to Newport just became nonexistent for a moment.
When Caroline left the room to meet Tom outside to show him the way up, I broke down in tears. I had such mom guilt for not getting her to the ER sooner. I hated myself for it. Looking at her so very sick broke my heart in a million pieces. Seeing me cry, Madeline picked her head up, looked right at me and said "It's ok, mama. You're beautiful." She smiled, and put her head back down. I leaned over and gave her a big kiss on her heated forehead and said "You're more beautiful, but thank you, sweet girl." Not until she reads this blog in twenty years will she ever realize how much I needed that moment. Here she was trying to make me feel better when all I wanted more than anything else was to make her feel better.
And so began Madeline's hospital stay. The team of doctors explained to us about Kawasaki Disease and how her blood panels were consistent with it (turns out her liver numbers were triple the norm) and she had every symptom minus the 5th day of a fever. They talked about the treatment for it and how they would monitor her all night and see if the fever returned. I crawled into bed with my baby girl (it was almost 2am by then) and Tom went back to Luke and Caroline's house to be with Sam and Ella. Madeline woke up on Saturday and had to have an echocardiogram and ultrasound of her heart. After everyone came to visit her that morning, she slept for the rest of the day. By the evening her mood was better. She was smiling and talking again and the doctors all fell in love with her personality and big brown eyes. They laughed when she let them know the hospital gown with fish on it wasn't pretty and she preferred the dress her daddy packed for her instead. Madeline's fever never returned high enough for the doctors to be 100% certain it was Kawasaki Disease (even though she continued to show more signs...swollen fingers and toes, swollen lymph nodes, rash on her inner thighs.) We were all thrilled that she was getting "better" without any medicinal interventions. One doctor told me she only hoped for such drastic improvements, but didn't always see them. After 36 hours of being fever free (100.4 and below), the doctors felt comfortable discharging her on Sunday knowing we were staying one last night in town just in case. They did one last blood draw and her liver numbers were improving so I felt comfortable knowing she was slowly, but surely, on the mend from whatever "virus" it was that crazily took over her small body.
In the end, we left with no specific answers. I absolutely hate not knowing what "it" was, but I am happy and grateful we took her to the ER. God gives every mom that special little intuition power when she has babies, and I will never push it aside again. Her hospital stay made me realize so many things...but mainly, just how much I absolutely love my children and how I can't begin to fathom how parents deal with their really sick babies on a daily basis. We are so very lucky this was just a virus and nothing more permanent. Madeline is getting better everyday...still not her usual self and it's hard for me to see that, but they say it might take weeks for her to completely heal. Let's just hope it's sooner, rather than later, because I truly miss my sweet, vibrant, lively little girl! We will need to follow up with a pediatrician here in Newport to make sure everything is going well so please keep her in your thoughts and prayers:)
My poor sick baby before the ER
Bumpy tongue
Bumpy tongue
At the ER
Right after the IV (thank god for the numbing cream they applied and for Caroline helping me to hold her...makes my stomach hurt thinking about it)
She was finally eating animal cookies and she made her evil eye face for her grandpa
Checked in to her room holding daddy's hand
Her view of the Arch!
Saturday morning getting the u/s and echocardiogram. She had to wear a mask because we left the isolated room she was in. Anyone who came into our room wore a mask, full scrubs and gloves. Like a biohazard scene from 24. Just missing Jack Bauer.
Making bubbles with her chocolate milk (anything to get this kid to hydrate herself!)
She literally slept the whole day away.
See her pointer finger? So red and inflamed and skin cracking. This was Saturday night.
Bathtime on Sunday...interesting with the IV
Yay! She gets to leave! Thank you granny P for her bear:)
St. Louis Children's had the most beautiful garden on our floor for the kids to play in. Unfortunately, Madeline couldn't visit it until she was discharged because she was on isolation:(
Ella found the sun dial!
And home. She fell asleep right away. On me. That never ever happens.
5 comments:
Your poor baby! I hope she's feeling better.
We went through a similar experience with one of my girls. Luckily, it ended up being something else!
Poor baby. I was so sad to hear this because I know you have your hands full with the move and everything. I hope she is doing much better now and you guys are getting settled in. That is so scary and yes a mother knows her child.
Poor M and POOR mama...that must have been so scary :( :( I'm glad she is better now!!
So scary, Melissa! I hope she is feeling better? Prayers for you all that life calms down a little bit!
I am so thankful that she is now on the road to recovery! xoxo Miss you all!
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