I am so very grateful to have my friend, Brittan Gotbeter, guest posting for the Medical Momma Toolkit. This amazing mom and I have become friends over the past year, as we've encouraged each other, answered questions and prayed for each other. We've both been on a ride with our medically complex girls, and I'm grateful to have a friend who gets the bumps and the triumphs, the hard and the beautiful. She and I have exchanged many, many messages filled with advice and questions as we've processed through this new world we've stepped into. Brittan is brave, vulnerable and generous with her encouragement, and is loved by many in our adoption community.
This amazing mom has much hard earned medical wisdom, and I really appreciate her willingness to share some of what she has learned about ER visits and advocating for your child. She is the mom of four, and is in journeying back to China to add another son to her family.
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I had been around the ER block a few times before we adopted Molly in 2014. Our children don’t do “easy” things, toxic ingestions, serious cases of croup and more...
Now that we have Molly home though, I do feel as if I have mastered the good ole ER visit.
In early January of 2014, my husband and I embarked on a journey around the world to adopt Molly. Molly was a 2 1/2 year old living in rural China with an unrepaired form of lipomyelomeningocele (Spinabifida) and a club foot. We had fallen head over heals in love with her, and couldn’t get to her fast enough. Thankfully, our process was fast and, from start to finish, we had her home in less
then eleven months.
Gotcha day couldn’t have gone any better, and we were off to a great start. We knew pretty quickly her urine smelled awful, and she was leaking urine often, but we didn’t know the full extent of what that meant for some time. Daily in China we would bath her when she woke up because the smell was so awful. Her diaper hadn’t leaked at night, but the smell permeated her skin. Even as a seasoned momma of three, I had never seen anything like this.
Once home, we hit the ground running with more testing and appointments then I knew was humanly possible. Our first stop to our beloved pediatrician told us what we suspected. Molly had a very serious and drug resistant UTI. On antibiotics we went and it cleared up. A few weeks later another and a few weeks later another, and another, and another, and another! After thorough testing and better understanding of her condition, we came to understand that Molly’s greatest area that is affected is her bowls and bladder. Molly has a neurogenic bladder and bowls, along with reflux in one of her kidneys.
We began catheterizing Molly every four hours during the day several months after coming home. In addition, she takes daily meds to relax her bladder and to help prevent these UTIs. The name of the game became how do we save and protect her kidneys. Cathing is #1, but also we must act quickly when she gets a fever over 102.5. That means that no matter where we are or what we are doing when she hits 102.5, our world stops. Literature shows that if you start antibiotics within 24 hours of fever with UTI, you can prevent long term kidney damage. Often times kids don’t throw fever with UTI, and if they do it means it’s headed to their kidneys or is already there.
Recently, we had been admitted for a high fever, very sick little girl and awful looking urine. Molly was not only brewing normal old ecoli, but also ESBL that had moved in her kidneys. ESBL is an antibiotic eating ecoli that can be very serious.
After a week in the hospital on Zoysn, she got a PICC line and we came home for 10 days of Merapinum. Shortly after her PICC line was removed, she was 104 again. Back to the ER we went. Thankfully, we came home. A few weeks later 103, so back we went.
When we go to the ER now, I know what we need, and what to say.
“Hi, this is Molly and she is slightly complex. Molly has spina bifda and although she does great, she does have some bladder issues, was recently admitted for a week, she has a high fever and we need to get a urine culture going ASAP.” It’s super helpful to go ahead and tell them what you can. I would also strongly urge you to go to your local children's emergency room. If possible, try to go to the same place each time.
We have gotten to know our staff there and they know Molly. Most of her records are there and it just makes life easier. This last time though, we had some issues that I want to share in hopes that it will help you when you are in this situation with your little one. Remember how I said we were there a few weeks before, after her PICC was removed? That trip was different. Her urine was clear and her PICC site was red and she was guarding it. That time we swabbed her for the flu, and when that was negative, we drew blood cultures fearing she had a serious infection.
Fast forward to our last time. I told the staff her urine was yucky and we needed to get some urine and a culture asap. That.was.all.we needed. The sweet nurse came in a few minutes later wanting to put a numbing patch on Molly for an IV and blood cultures, as well as swab her for the flu. I kindly said I didn’t quite understand, and that we only really needed urine as I was sure her urine was infected. The nurse left and returned to say that the resident really wanted to start an IV.
At this juncture, I asked her if she could please send the resident in. We had a nice chat and the resident said to me that she had looked back and this was what they had done for Molly last time. Remember, last time was a different story, a totally different situation. I thanked her for her concern and told her I would be the first to agree to any procedure that Molly truly needed, but that she was asleep on the bed and that last time we blew two veins trying to get an IV, that she was just admitted a month ago and ended up with a PICC, had spent 40 days at Boston Children's, and that although I appreciated her concern, I try at all costs to protect her from things that she doesn’t need.
The urine came back awful ya’ll. Worse then in December when she was admitted. Terrible! Still though my sweet new friend really wanted to swab her for the flu and get cultures! Still, smiling(that's important), I ask her who was coming on at 11pm. Score! One of our favorite doctors who knows Molly well. As soon as she got there she came in to see us and agreed, no flu swab, and no blood cultures. After some antibiotic shots, we were thankfully able to go home that night.
The experience that night got me thinking about new parents and how much trust we put in our medical professionals. Let me say we love our doctors. Really.love.them. Our surgeon in Boston and our team there are some of our favorite people in the world. With medically complex children we need teams around us who can communicate with us quickly and effectively. Weekdays or
weekends, our team responds when we need them. We are so thankful for the care that Molly receives in Charleston, Boston and St. Louis. Without her amazing team put together of people all over the country, our sweet Molly wouldn’t be where she is today.
Doctors are human though, and each child is different. Trust that you know your child and is something is wrong, speak up!
Molly gave us such a run for our money in Boston, and each time I knew before anyone else. The team there grew to trust my thoughts on her condition and we moved forward together to care for her. The same goes for the ER, listen to your intuition. You know your child. If something doesn’t sit quit right, ask for an attending, get a second opinion. You are your child’s advocate, especially these medically complex ones, please don’t be afraid to share your thoughts with those doctors and nurses and tell them exactly what you and your child need.
I’ve also learned that whatever momma can do, the better. They need urine, and you're used to cathing your child, so it’s better for momma to do it. Blood pressure cuff on, better if momma straps it on and takes it off. Molly doesn’t like to wear the hospital gown, no worries, they can lift her shirt to listen to her heart and lungs. Whatever you can do to help the nurses and elevate the fear for your little one, the better.
Remember always that the Lord has called you to be momma and daddy to this little treasure. Although at times it may seem overwhelming, and like you're just barely surviving, take heart the Lord has gone before you, he has paved the way. He has and will continue to equip you to be the best parents you can for your little one.
May it be at home, school, or the ER you know your child best, please don’t be afraid to ask questions and stand your ground, with a smile on your face, when you feel like something isn’t warranted or if your child needs more.
Lastly, the one thing I always grab before heading into the ER. My car charger and a cube to plug into an outlet. ERs can be near radiology that can drain your battery quickly. Staying in touch via text and social media always helps me to feel connected to the outside world and helps to pass the time. A special lovey or blanket for your little one is a good idea as well.
Here's hoping you don’t have any ER visits in your future, but if you do, I know you are equipped and will do just fine!
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1 comment:
This is an immensely helpful post - Thank you!!!!
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