August 30, 2016
UTI Gone Horribly Wrong
The past few days we've had some incredibly scary things happen. I feel before having Aiden, I was very naive and lived in a little bubble. Aiden has shown me just how serious the tiniest of things can be. Got a cold? No big deal! Feel like I've got a UTI? I'll just call my doctor! Before him, I never thought a simple, "normal" illness could escalate into something life threatening, Who knew a UTI could be catastrophic?
It all started with a small fever, and Aiden being very fussy last Wednesday. He wasn't acting like himself, and you could tell he didn't feel good. So we ran a series of tests to see what could be going on, and his urine sample came back positive for E coli.
I know this is one of those "hot internet topics"; and I don't want to get any debates going. But a lot of people have been asking me, "Boys can get a UTI?". So for the sake of informing; yes, Aiden isn't circumcised - when have we had a moment to even think about that!? And yes, it's fairly common for baby boys that are uncircumcised to get UTI's. So theoretically, a UTI isn't too big of a deal and almost to be expected. We started an IV of antibiotics, and started giving him Tylenol and Ibuprofen intermittently to help him with the fever.
We all thought he was doing ok. He was obviously very grouchy, and didn't feel well. But he was still having moments of being perky. He was, all in all, acting how you would expect a baby to act. On Sunday we thought we were getting him over the hump of it... Until 4 am that Monday morning.
Aiden suddenly took a turn for the worse. He spiked a fever of 107, had a heart rate in the high 230's, a CO2 level in the 100's, blood pressure all over the place, and oxygen needs at 100% as well. He was unresponsive, sweating bullets, and his body wasn't functioning well.
The NP called me as I was on my way to take Melodie to school, and told me I needed to come in right away. They were worried about him as he was clearly septic, and at the time being, they didn't know why.
Hearing the term "your child is going septic and we don't know why" is terrifying. Your body goes through three stages of Sepsis, and if you can't intervene medically in time, your body will shut down and you will pass away. This happens when a bacteria or virus your body is fighting starts to take over. There isn't a specific illness that turns into sepsis, it all falls on that specific illness getting out of hand.
The first stage is a very high fever, and a high heart rate and high respiratory rate. Aiden had a fever of 107, heart rate around the 230's (baseline is 130's), and I can't remember his respiratory rate, but he was panting.
Next your body goes into severe sepsis, in which case your body starts to shut down. You are unresponsive, you can go into seizures because of the high fever, if you don't get liquids in your body your blood pressure could decrease rapidly, and your kidneys and bowels start to stop working. Aiden was completely unresponsive - just staring off in space as if he was already gone. He hadn't pooped or peed almost the entire day and so they had to catheter him. We believe he didn't have any seizures during the time of his high fever, but I'll get more into that later.
The next stage is septic shock, which is basically when each organ begins to shut down - and by that time it's only a matter of time.
When I heard he was going septic, I fell into a panic attack. I felt completely helpless as I sat in the carpool line to drop off Melodie and quietly cried. I couldn't move anywhere, and sat there terrified he was going to pass away as I took Melodie to school.Thankfully David was able to leave work to go to him, and what he walked in to was terrifying.
When you are in between the second and third stages of sepsis, it's a matter of minutes to bring the person back before you lose them. I know Heavenly Father watches out for us, because Aiden happened to have one of his best primary nurses that day. She's an amazing nurse, very good at what she does and incredibly knowledgeable. And she always tells me she loves Aiden like one of her own sons, and is always proactive and watching out for him. Between her and David, they put multiple fans around his bed and covered him in wet burp cloths to cool his fever quickly. She stopped his feeds, replaced breast milk with straight fluids, and in one try started an IV with more fluids to help his blood pressure. They ordered even more tests to find out what was causing this, and concentrated on his fever as we waited for the results.
It took half of the day Monday, but they were able to bring his temperature down slowly. And as his fever cooled off, his heart rate and respiratory rate slowly came down as well. The catheter helped him pee, and our nurse literally squeezed his stomach and forced poop to come out to get his bowels working again.
They were able to save him, but this was another incredibly close moment where we were on the doorstep of losing him. And what a horrible way to have almost lost him.
The test results came back positive for E coli in his bloodstream. We aren't exactly sure how it happened, but it seems the stream of E coli in his bladder wasn't responding well to the first antibiotic, and so it spread throughout his body until it entered his bloodstream and gave him septicemia (blood poisoning). It's rare, but it can happen. And who knew a UTI can get to the point of killing you.
We have been able to get Aiden stable again, although he's once again on a lot of sedatives to allow his body to recover. David says he is slightly more responsive today. He still only stares blankly at the ceiling when he's awake, but he has started to blink more and has given David a few eyebrow raises. As he's awake and stares, he's been chewing on his tongue rhythmically, so he is going to have an EEG tonight to make sure going septic hasn't caused him to have seizures. And we are going to monitor and follow up to make sure this didn't cause any damage to his kidneys.
The medical team has been assuring us he's under control now, but I'm feeling like I've been in a consistent anxiety attack since Monday. I can't believe how quickly Aiden's body started to shut down on him, and how close he just came to death. If it wasn't for his nurse and medical team acting as quickly as they did, we would have lost him. We had minutes to spare before his organs would have started to shut down. And at that point, there isn't much else you can do.
I'm so worried about him and his recovery. David has advised me to stay away from the hospital for a few days to protect me from seeing him the way he is right now. I'm so worried this will have long-term affects on him. And I'm worried how much this may have set us back again. David has been at the hospital around the clock to stay with him, and I'm doing my best to keep the girls going on a normal schedule at home. But for some reason, out of all the close calls we have had, this one is affecting me the most.
Please keep us in your prayers. The stress is starting to take a toll on all members of our family. Lydia's seizures have started up again, we've put Melodie in counseling, and David and I are completely exhausted and feel like we are walking around in a state of panic all the time. We are blessed to have been at the right place when this happened. But I'd really like for these things to stop happening.
The miracles we keep receiving astound me. The mere fact that his nurse was able to get him an IV with one poke is a miracle that helped save him. Usually it takes an IV team 5-8 tries to give him an IV. And I can't believe the willpower and strength he has. If this were to happen even a month ago, he wouldn't have made it through something like this. But once again, he's still here!