Another First

Today Julia had her first visit to the emergency room. She is OK, but has an infection in her left eye, so they are going to give her IV antibiotics.

Thursday her left eye became swollen. We put some prescribed eye cream on it and it seemed better at the end of the day. When she woke up Friday morning everything seemed fine, but after breakfast she started rubbing it and her eye became very swollen. I put a call in to her ophthalmologist at MUSC, but quickly grew impatient when nobody called me back.

Next up was the pediatrician. I gave them a call and was able to be seen in 30 minutes. The pediatrician checked everything out and recommended I take Julia to the Emergency Room. One of the main reasons was because she is already on two prescription medications – good ones at that – and she still got an infection in her eye. The pediatrician said they may want to do some imaging to make sure the infection didn’t spread to behind her eye. So off we went.

Now in case anyone is living in a cave, it’s flu season. An emergency room waiting area is the last place I want to bring an otherwise healthy child. Thankfully we were checked in pretty quickly and I opted to sit in a bed in the hallway of the ER to expedite being seen (we were called back in 5 minutes).

After explaining her symptoms and some history of everything related to Julia to a medical student and resident, I was told Ophthalmology had been told we were here and someone would be by to check her out. A couple of hours later the ER attending doctor came by and took a look at her. We were then told we could go home and just take another prescribed medication.

I again mentioned that Julia’s pediatrician sent me here because she is already on two really good medications and felt Ophthalmology would want some imaging done to check her eye. We were then offered to have someone from Ophthalmology come take a look at Julia and see if they agreed with the attending doctor’s plan. *Now didn’t I say someone from Ophthalmology was already supposed to be coming to see her?! Apparently no matter what state you are in, this department is very hard to see (no pun intended).

Finally someone from Ophthalmology came to see Julia. After a thorough examination it was determined that Julia should be admitted overnight for IV antibiotics and to monitor her eye to make sure the infection does not spread. So we are hanging out at MUSC Children’s Hospital tonight. Our fingers are crossed that the antibiotics will kick in and we can go home sometime tomorrow. For those of you who like the medical terms, we were told she has preseptal cellulitis. Thank you for keeping Julia in your thoughts and prayers! xoxo, Tori

6 months


Half a year. I cannot believe our little princess is 6 months old today! She loves to smile, be held, grab your necklace or hat or glasses, play with her big sisters, sleep on her side, take showers, talk, jump, and dance. She has a little tooth making its way on the bottom, and is getting the hang of eating baby food. 

Since my last post we have seen a few more specialists here in Charleston. We met the dermatologist that came so highly recommended, and we love her. We also saw the local ENT doctor, and ophthalmologist. So far Julia is doing great. 

Later this month we will be heading back to Boston. It’s going to be a busy couple of days for Julia. We’ll start our trip off with a visit to three different plastic surgeons, a maxillofacial doctor, have some imaging done, meet with the orthopedic doctor, and finally wrap up our visit with our favorite urologist. We will update you all on how everything goes. 

Thank you for following along with Julia’s story, and of course for keeping her in your thoughts and prayers. 

If you have Instagram, feel free to follow me for pictures of my little family (torisc). 

Superstar

Did you hear? Boston Children’s Hospital was ranked #1 again by U.S. News & World Report. Not only that, but the Urology team was ranked #1 too! We certainly aren’t surprised. In case you can’t tell from our posts, we may have fallen in love with Boston Children’s Hospital. There are some great superstars providing outstanding care to families just like ours.

Speaking of superstars. We have our very own superstar living with us. After Julia’s surgery Dr. Borer approached us about being interviewed for their website to help inform other families about bladder exstrophy, and hopefully help parents make a decision about care for their child. Sean and I of course said yes. Well the story was just published today. You can view it in two different places on Boston Children’s Hospital website. The more in depth story is underĀ Patients’ Stories, and the other is under their Greatest Children’s Stories. Feel free to share these stories on your social media sites. The more we share them the more informed people will be, and hopefully parents like us will feel a little better knowing that they are not alone.