August 30, 2016
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!
August 23, 2016
It's incredibly frustrating to have different Neonatologists constantly switching each other out. I understand why it happens; doctors can't be living in the NICU 24/7/365. But on the other hand, because said doctors have a home to go to each night, wouldn't it make sense to stick to the plan established by the previous doctor if it's working well?
I don't understand the mindset of most of these doctors. It's as if their own personal egos and opinions get in the way of the individual child they are caring for. They have little regard for what the previous doctor set up. And instead of reading notes and the patient's history, they just look at the past day and willy-nilly go from there.
For a perfect example of this, let me begin telling you of our battle of the week:
Aiden has been doing fantastic. Truly. He hasn't needed a PRN sedative in nearly a month, his oxygen needs have been consistently low (his sweet spot is 30%), and he has been having less desat and bradycardia spells. He handles his c-collar being put on and off all day, with him frequently being moved to and from his bed as well. He has been happy, content, and for the first time since he was born, behaving like a normal baby. He still passes out when he poops - but that's something that seems fairly common with kids that have SEDc. And he can recover himself after passing out without needing extra help. Our primary nurses know him so well that as he bears down and turns purple, they don't turn up his oxygen or give him manual breaths. They know that he'll bear down, pass out, poop, then pops his eyes open and will come right back. For him this is amazing.
We had made a plan with his medical team that we were going to let him be. "No changes is a good change" was our motto. Because he is finally happy and comfortable, we want to keep him that way so that he may continue to grow and be healthy.
But alas, that medical team switched out for the next rotation of doctors. Our previous Neonatologist wrote in his chart that we weren't going to make any changes at this time. So naturally you would think we would continue the same course of action - right? ...RIGHT???? Wrong.
This new doc walked in and basically said, "Oh, let's stop his diuretics.". And just like that, took my diuretic-dependent-since-day-one, five month old baby completely off his Lasixs. Didn't wean it slowly, didn't even cut the dose in half first, just put a complete stop to it.
I have two big problems with this.
First - it was clearly written in his chart that we were going to continue his "no changes is a good change" plan. Is your ego and personal ideals really worth more then following that? Obviously.
And second - we have already tried taking him off diuretics three times in the past, and all three of those times lead to a whole slew of other problems. One of the times they tried that, it almost killed him.
If you bothered doing some research on my child before walking to his bedside, you would have found evidence of that. Maybe it would have led you to think about trying to wean a little of his dosage first and see what he did. Or maybe if you bothered reading his chart, you would have seen that our plan was no changes for the next little bit so that we may continue to promote healthy lung growth. But no, this doctor waltzed in and didn't bother taking a look at any of that. Or maybe he did, and just didn't care? Either way, that's a big no-no in my book. Either situation, and the result points to the same conclusion. It shows a general lack of care and concern for my baby - and you need to get over yourself.
So when David and I found out this happened, we protested. The doctor argued Lasixs has side affects that mess up your potassium and sodium levels. We argued back that we'd much rather focus on lung development and supplement potassium and sodium with meds. After all, a big reason he needs diuretics is because he doesn't have healthy lungs. Breathing is much more important then low sodium levels - especially when you can easily make up for low sodium in other ways. But the doc insisted on giving it a try.
So Aiden got super puffy again. His oxygen needs went up into the 50's, he was uncomfortable, his ventilator support was going higher, and he was starting to have more desat spells as well. All because he was retaining fluid and his lungs were getting wet. After a few days of back and forth, I finally called the doctor to his bedside, looked him straight in the eye, and said, "I'm not asking you, I am telling you to give him his Lasix back. We are following the same exact path when we tried taking him off diuretics before, and I'm not going to risk losing him again because of it." His response to me? "Oh? We tried doing this before...?"
...have we tried doing this before?! So you mean to tell me that you are a few days into your rotation, and you STILL haven't read my child's chart or history? Believe me, this is one example, but it's quite a novel theme around there.
He agreed to give Aiden his Lasix back after that, but only on half the does he had before. It helped a little, his vent needs went down slightly, and his oxygen dipped a tiny bit. But he still had wet lungs and was hugely puffy.
The next day was David's turn at the hospital, and he went in geared up for a fight. But he quickly found out it was that doctor's last day for his shift. It was very obvious to David and I at this point that this specific doctor had very little regard for our requests, opinions, and our child's needs. So we let it be for the day, and we returned the next day ready to fight with the next doctor about Aiden's diuretics.
However, much to our delight, the first thing this new Neonatologist did was take one look at Aiden and his chart, and said, "Wow, uhm... why did we get rid of Lasixs? He's dependent on it, he has lung problems!", and ordered for him to get his full dose of Lasix back. Amen.
Everyone that works in the NICU or has experienced the NICU will probably echo the same theme; "it's a rollercoaster ride". And it certainly is. You experience consistent ups and downs, and you never know what to expect when you walk into your baby's room. Each time you make a little progress forward, you will also take a few steps back.
Certainly the NICU rollercoaster is largely dependent upon the health of the baby, but when you've been at the NICU for as long as we have, you start to notice that the rollercoaster is rarely started by the baby. It's doctors and NPs that don't pay attention to details and rely on their own opinion rather than the individual needs of the child. And when the life of that child is in your hands, you better look at every detail and leave your arrogance at the door.
I understand that this doctor was concerned for Aiden and the side affects his diuretics present. I don't understand having so much pride in yourself that you can't see past your own nose and hear the countless nurses that tell you he needs it, or the parents that question why we aren't focusing on lung growth first. If you can't listen and see what that child truly needs, then maybe you are in the wrong field.
It's interesting, the PR people at Primary Children's Hospital try to make you feel real warm and fuzzy about "the hospital on the mountainside". And we are blessed to have some fantastic resources there with some equally fantastic doctors. But they also have a lot of issues they don't like to mention, and their NICU is ran very sloppily. Another doctor actually said to David's face once, "You have to remember who the medical professionals here are." You may be a doctor, but I am his parent and have spent every single day by his bedside. If you feel like you need to waive your degree in my face and insult me when we are telling you something needs to change, then there are greater issues that need to be addressed. And much to these doctors surprise - every time David and I have been right. It just takes for Aiden to be near death for those doctors to drop their ego and do something for him.
Recently when talking to the manager of nursing about a few concerns we had, she told us, "You are one of the savviest set of parent's we've ever had at the NICU. Nothing gets past you two." - and you better believe it! It won't continue to get past us either. Looking back, I can honestly say at least half of the issues Aiden has had were not caused immediately by his own health, they were created by the doctors and NPs. It makes me wonder how much further along we would be in his care if they stopped treating him like a medical experiment.