what the heck happened 2 weeks ago?
What happened + what's coming for Gideon and our family! It has been a wild (if you will) past few weeks for our family. I feel like I've been stretched pretty far mentally, physically, spiritually, and emotionally over the past 3 years, but I think 2 weeks ago was one of the hardest. Maybe partly because we felt like we were "past" the hard stuff and thought we were done with these kinds of things. Or maybe because while we're just trucking along with the medical things and advocating and organizing, I am also raising 2 teenagers, school has just started, and the juggling act, although is not impossible, is difficult. My own stress has been higher than normal and we definitely have our good and bad days.
So about 3 weeks ago, Evelyn came home with a fever and wound up staying home from school the next day and spent the weekend at home instead of her dads. 2 days later, Daniel is horribly sick to his stomach. I'm thinking it's food poisoning and had hopes he'd feel better after expelling anything left in his stomach. Well that afternoon, he was white as a sheet and also passed out briefly. I no longer suspected this was food poisoning or man flu (sorry babe). But then after some time spent 🤢, he actually felt a little better and ate some food. We decided to NOT go to the ER at that point (I had everything packed and ready to go). So we waited. And then I got the babes in bed and he was in 8/10 pain again and could not get comfortable. It was at that time I called my parents to come stay with Evelyn & Gideon so I could take him to the ER. 2 hours later, along with some morphine and IV fluids and antibiotics, it was confirmed Daniel had appendicitis and his appendix was 4 times the size it should be (but praise the Lord it had not ruptured!). Surgery happened the next morning and we were on our way with instructions that he can not lift anything over 10lbs for 4 weeks (aka Gideon).
3 days post-op, Daniel and the kids and Gideon and I were hanging out, getting ready to send the kiddos to Wednesday night church and playing with Gideon. when all of a sudden Gideon started seemed to have some sort of episode. He was unresponsive and not breathing - we pulled his trach out thinking it was blocked but this did not help anything. We began bagging him trying to figure out what was happening since he was not responding and this looked so much different than his "normal" breathing episodes.
By the time EMS arrived he was starting to come to a little and on the ride to the ER with them, he was worn out but hanging out. He seemed to be a lot bette when we were there, got his IV and we were eventually moved to a smaller ER room. He remained stable (though grumpy because it was well past his bedtime at this point) and eventually got settled in the PICU so we could watch his lung cultures grow/ change. We decided to NOT monitor his temp overnight or start antibiotics since he wasn't visibly sick, although we still did not know what was happening. In all honest, we thought he had tissue overgrowth in his trach that we would need to fast track having removed.
He had 2 more (short) events overnight. He required some bagging but then was fine within seconds. This is all very unlike Gideon.
The next morning, we decided to have a bedside bronch to see what is going on with his airway. Well turns out, Gideon's airway looked AMAZING! The malacia wasn't bad/ his trachea itself looked so strong and BIG! He has had SO much growth in his body this year! So this was a huge praise BUT it left us with more questions.
About 45 minutes after his scope, he was asleep in my arms when he started to have another episode. I keep calling them episodes because did he stop breathing first? Did he start having a seizure first? What is it?
So we get him on the bed, call for help, and this one lasted a long time. I couldn't tell you how long. They started tracking his temperature and it climbed quickly to 40 celsius. He was issued meds and a cooling blanket to bring the fever down. Spiking a fever is not uncommon with a scope of any sort / coming out of sedation. He did also show 4000 counts (as opposed to a few hundred counts) of psuedomonas which almost everyone with a trach always has some of.
The conclusion was that he had a febrile seizure. He had an EEG for 24hrs after that, which did not show any more activity which is good but also we never caught anything. We did however get to talk to a new neurologist who was so kind and knowledgeable. She said that his delta waves were not as high as they should be for his age, and this isn't anything to be super concerned with, but it can make him a higher risk for seizures. Our pulmonologist also wanted to test his ferritin levels and low and behold they were pretty low as well. This can also cause seizures. So we have a little homework to do - perhaps mineralizing his food and water more, working on his iron absorption (not just throwing iron at him), and we also have some rescue meds should he have a seizure again.
It was a very long week to say the least. We were in the PICU from Wednesday evening through Saturday around lunch time. Daniel was still recovering although he did stay Friday night in the PICU with Gideon so I could get a little more solid rest after spending the other days and nights in the hospitals with each of them.
Gideon came home with an antibiotic that we wound up using for 8 days instead of 10 to knock out all the things. Now that he's a few days off of it, we are doing all the things to rebuild his gut and immune system, and also praying a lot that this was just a one off.
And to finish this, Gideon will be having his fistula repaired in 2 weeks! Our surgeon thought it was a really good idea and appropriate to ask to try to fix it now instead of waiting a year! He wanted to take advantage of having the trach and because when Gideon gets a cold the fistula makes things more difficult for him breathing wise. We will more than likely be having a VERY early morning and staying the night in the hospital to monitor him the next day.
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