I love talking about Temen. She’s fun, funny, smart, sassy, stubborn, curious, happy, and strong. She’s everything, and who doesn’t love to sing the praises of someone they love with every fiber of their being? What I didn’t say, but you already know, is that Temen is also sick. I don’t like that it’s something I have to write about (for myself, for others). But here we are anyways. It’s long, so buckle up.
Temen is going to get surgery again on Tuesday.
Another infection
It started with yet another infection. She’s had a few since her last surgery. The first time everyone just figured it was kind of just “leftover” from her last surgery. Ya know, there’s foreign objects opening her up and moving things around. Something like that. To be honest, I’m not sure how many infections there were in between the first one after surgery and her last one. All of the infections (both before and after her surgeries) blur together. All of the hospital trips blur together too, with a few exceptions. What I do know is that at the end of February she had a fever and was throwing up. We brought her to the ER and was told that yes, it was another infection. We were sent home on antibiotics. I remember being frustrated because something wasn’t right, I felt like the ER doctors weren’t understanding that the infection had to be a symptom of a larger problem still looming over her. I wanted an ultrasound. I wanted more for her, but I trust the doctors who make it their life’s work to make decisions like this for families like mine.
We got antibiotics and were on our way. The last infection she had I remember it took her about 48 hours to really feel better after starting antibiotics. I tried to remind myself of that every time I got worried because her fever wasn’t going away, or she was still lethargic. Something wasn’t right, but it hadn’t been 48 hours yet so surely I just needed to calm down.
Resistant to Oral Antibiotics
I think it was a Saturday night. I had put Temen to bed, she was cranky, kind of lethargic, but she went to sleep. I ran to Target to get groceries. On my way home, and this I remember very clearly, I got a call from Children’s. My heart sank because I knew something was wrong. Immediately, before I even answered the phone, I knew something was wrong. I answered.
It was a doctor from Temen’s urology team that I’ve never spoken with. She asked me how Temen was. I told her she was still lethargic, she was still off, and she hadn’t really ate since Thursday. She asked me a few more questions, and my answers left me feeling ashamed. Should we have gone back to the ER? Should I have called? With every answer I gave, I apologized. To her, and to Temen. I felt awful. I knew something was wrong, and each of my answers were confirming it.
Then she told me Temen’s urine culture from the ER came back and it showed she was growing a new bacteria – a pretty severe bacteria that’s resistant to most oral antibiotics. I’m the mother of a chronic kid that has spent a lot of time in the hospital and a lot of time on antibiotics, so I knew that meant that the medication she was on right now wasn’t treating her. I knew that meant that her infection was only getting worse. I knew that meant we had to go back to the hospital immediately. And, that’s what she told me. She told me I needed to go home, get Temen and go back to the emergency room immediately. Do not pass go. She had already called the hospital to tell them we would be on our way. I asked her how long she thought we would be there and her response was “Oh, I would be surprised if you were there less than a week. This is a pretty bad infection.”
I called Ryan, crying. I tried not to cry. I tried to keep it together. I don’t want to say I tried to keep it together for him, because that sounds like I’m trying to be this hero for him and I’m not. But I did try to keep it together for him. I didn’t want to worry him. I knew what it meant, but he didn’t. I knew about sepsis and how quickly that can happen. He didn’t. So I tried to be calm about it, but he’s my safe haven and the only person who loves Temen as much as I do — so I cried.
And when I got home I cried some more. I put all the things that needed to be refrigerated in the fridge, we grabbed Temen and left.
The entire drive there was a battle between two parts of me. The part that wants to think positively, and the other part that wants to “manage expectations“. So every time I thought “this is okay, we are going where we need to be, this will all be figured out” another part of me thought of all the people in stories who say “I just thought it would be okay, I figured she’d get some medicine and be fine” only to have everything not be fine and then I just spun. I spun the entire car ride there.
The Hospital Stay
We got in pretty quickly, and Temen’s vitals were taken. Her temperature was just over 96 degrees. That’s when the nurse mentioned sepsis and blood infection. She noted her feet were a little purple, but they always are. That’s when I panicked. That’s when I kicked myself for any sort of positivity I had. You see, it’s one thing for me to jump to the worst case scenario, it’s another to hear it from the ER nurse taking care of my child. They wanted to get an IV placed and blood drawn ASAP to make sure the infection hadn’t gotten into her blood and to start her on antibiotics.
Waiting to find out if your child’s infection has gone into their blood is hell, in case you are wondering. I spent the entire time thinking it was my fault. I should’ve listened to my gut. We should have gone back in. It wasn’t normal that she wasn’t feeling better. It wasn’t normal that it was taking so long. I knew it wasn’t normal, I knew something was wrong, I knew and I didn’t take her back in. It was my fault.
Thankfully her original blood tests did not show that it had traveled to her blood stream. That didn’t mean that the culture wouldn’t come back with something weird later. That didn’t mean that she couldn’t become septic, but for now she was okay. They checked her throughout her hospital stay, and thankfully she never did develop sepsis.
She was started on antibiotics while we waited for the pseudomonas sensitivities to come back, just hoping the IV antibiotics covered it. And – then we spent six days in the hospital. Every day we would hear another story about how long we would be there. Discharged the next day, discharged in a few days, maybe another week.
Over the course of the time we were in the hospital, we met with her urologist and an infectious disease specialist. Urology wanted to make sure nothing was going on with Temen’s immune system that was making her so prone to these infections. As it turns out, Temen has a great immune system. We also needed infectious disease’s input on the antibiotics she was taking.
Then, we did a few tests ordered by urology. It was during her VCUG test that we learned she has grade 4 kidney reflux. It was another moment I haven’t yet forgotten. Ryan and I were holding her down while they took the images, she was screaming and crying while we sang to her and played sesame street for her. But the entire time I was watching the screen and I could see her right ureter and kidney lighting up almost as soon as her bladder was filled. I did not need to be a doctor or technician to see it or know what it meant. Of course I asked, “I know this will be sent to her urologist, but this is reflux right? This is pretty bad reflux.” She just replied, yes. I cried again, but this time it was mostly relief. We knew what was happening. Surely we could fix it.
The Plan
Temen’s urologist is, what I like to call, our medical security blanket. He’s been with us since I was pregnant. Every time we’re in the hospital, he makes a point to stop by. He takes care of Temen, and seems to truly care for her and looked heartbroken that she was back in the hospital with this infection. He lets me ask all my ridiculous questions, and understands my frustrations. Whenever that man walks into the hospital room I breathe a sigh of relief because he knows her.
So, when we talked to him about her VCUG he walked us through a few options, but at the end of it was very honest and said “I don’t know what I’d recommend right now.” Typically the surgery she previously had would take care of any reflux. At least that was the plan. So now that that failed, we had to think about what it meant. We were discharged from the hospital on some really gnarly antibiotics and the understanding we would check in with her doctor in a few days to think some more about next steps.
One option was less invasive and included some sort of gel that is injected into her ureter. It’s typically one of the first things tried when treating reflux, and doesn’t have as good of a success rate as Temen’s first surgery that failed. Another option was just redoing her first surgery and trying again. And another option was removing her right ureter from the bladder and attaching it, permanently, to her left ureter. After doing our own bit of research and talking with her doctor, we’re all in agreement that the last option is the best for now.
So – on Tuesday they’ll remove her right ureter from her bladder and attach it to her left ureter. It’s called a transureteroureterostomy if you’re interested. It’s a mouthful, and if you must know it’s a lot less common than her last surgery so my googling of other people’s experiences isn’t coming up with a whole lot. I think that’s one of the reasons I am writing this. 1) To update everyone, 2) to put everything into words, and 3) in hopes that someone else out their googling finds someone going through the same thing as them.
So that’s where we’re at. All the thoughts and prayers and positive vibes and rain dances, I don’t know. Send it all. Send any vibe you can.
xxoo,
Samm
