From SC to the ED

We went on our second family vacation with Hannah a few weeks ago. We ventured to Myrtle Beach, South Carolina and stopped in Gatlinburg/Pigeon Forge, Tennessee (a family favorite) on our way back home. We had such a great time, and were reminded yet again, that an extra chromosome changes very little. It was also great to have the opportunity to spend quality time with my in-laws who generously invited us to come with them!

Hannah loved the ocean! Her favorite part was eating sand…

Our physical therapist gave us the idea to take a blow up pool to the beach and fill it with water for Hannah to play in. She loved it, but of course, leaned over the side to eat the sand anyway! She spent a lot of time in the hotel’s pools as well, and worked on her swimming skills. She is definitely a little water baby!

William had a great time at the beach as well! It was his first time there, and it was a lot of fun to see his excitement. He loved learning how to boogie board, and the pools and slides at the hotel as well.

Hannah enjoyed hanging out by the pool and her afternoon sun naps!

We spent eight nights in South Carolina and then headed to the Smokies. We planned on spending three nights there, but ended up only getting two nights since Hannah got sick early Sunday morning. We visited Ripley’s Aquarium of the Smokies when we arrived in Gatlinburg. It was a highlight of the trip for William.

We spent our Saturday at the Island in Pigeon Forge where Hannah discovered her love of Bluegrass! She loved the live music and the fountain show they have there. It was a great last night before heading back to reality and straight to the hospital.

Hannah was very restless on Saturday evening when she was going to sleep. She woke up around 1am and I noticed she was very warm. We waited until about 6am when I decided she was too warm to not take her temperature. Unfortunately, I am not a seasoned packer, so I didn’t think to bring a thermometer with us. Josh ran to the Walgreens down the road and picked up a cheap one. Hannah had a temperature of 102. I decided to give her some Tylenol to try to bring her fever down. Due to her temperature, and that she had a patechia rash and a couple UTIs recently, we decided to head home early. William was able to stay with my in-laws and enjoy another day in Tennessee. On our way home, I noticed Hannah was breathing rapidly, and we made the decision to head straight to the ED at children’s.

When we got to the ED, she was tachypnic, had a high BP, and her temperature was 104.2. They gave her another dose of Tylenol, but it didn’t bring her fever down at all. They decided to get a CBC, blood culture, and collect a urine sample. An hour later, after the Tylenol hadn’t brought her fever down, they gave her a dose of ibuprofen. That brought her temp down to 100, so they diagnosed her with an upper respiratory infection and sent us home. I was very uncomfortable with this, since she had no other symptoms of a URI. When we got home, Hannah was playing like her usual self. Her fever was gone, and we thought we were out of the woods.

Around 5am, I woke up and saw that Children’s had tried to call several times. Half asleep, I started listening to one of their voicemails, but was interrupted by another call from Children’s. We were told Hannah’s blood culture had grown and that it was critical we took her back to the ED right away. It was without a doubt, the scariest phone call I have ever received. I woke Josh up, grabbed Hannah, and we were on our way back to the hospital within minutes.

When we arrived, they placed an IV and took another blood sample for another culture and CBC. They started her on IV antibiotics, and we waited to be admitted. We later found out that she had E. Coli in her bloodstream. We were told it had come from the UTI she had two weeks prior, but her urinalysis and urine culture both came back clean. When we finally saw infectious disease, they said it wasn’t possible for the E. Coli to have come from her urine, and they firmly believed her positive blood culture was a true positive because of her symptoms, and the fact that they don’t consider E. Coli a logical contaminate since it doesn’t live on our skin.

We spent eight days in the hospital, but they were never able to determine where the E. Coli came from. She was officially diagnosed with E.Coli bacteremia with an unknown source. She spent five days on IV antibiotics, and an additional nine days on high dose oral antibiotics. The two repeat blood cultures they did came back negative, and she never spiked another fever, so they felt it was safe to say the antibiotics had taken care of the E. Coli.

It’s hard not knowing where the bacteria came from, and makes me worried she will get another infection, but hopefully it was just a random occurrence that we won’t have to deal with again.

While she was inpatient, Hannah had an ultrasound of her bladder and kidneys to try to determine why she had gotten two UTIs within a couple of weeks. Her ultrasound came back normal, so we are following up with Urology, and will probably have a VCUG done soon to determine if reflux is the cause of her UTIs.

Overall, it was a fairly relaxing vacation, followed by a scary hospital stay. We are so thankful to be home now, and are looking forward to our next vacation. Hopefully without a hospital stay directly afterward next time!

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