the balance of life

Anyone who has ever had a bad cold knows there are a few days when you simply feel like you were hit by a freight train and you may even utter the words “I feel like I’m dying”. Any parents knows that watching your child suffer from a bad cold is simply torture even if it is the best snuggle time in the world. Now imagine the possibility of dying from a simple cold to be very real and the person affected is your 10month old child. That’s the cards we’ve been dealt here. The last week, and especially the last three days, has been nothing short of hell. It’s bad enough when your child has a rare genetic disorder that makes him dependent on a life support machine because his own breathing capabilities are simply not sufficient enough when awake and are lacking completely when sleeping. Having a bad cold however drives that fact home just a bit more as if we needed a reminder how fragile he can be with any minor illness. This cold is taking away his awake spontaneous breathing altogether. The simple action of adding water to the ventilator’s humidification chamber, which requires us to temporarily disconnect him from the ventilator for just a few seconds, makes him turn blue so quickly that even the pulse oximeter can’t catch up and get an accurate timely reading. He is so miserable and in so much pain thanks to a nasty cough and sore throat that he constantly tenses his body up. Crying or not, that overall body tension even causes his airway to tighten up so that the breaths provided by the ventilator are sometimes insufficient and we have had to ambu bag him for hours to get enough volume into his lungs to keep the co2 down and the blood oxygen level up. Despite holding him continuously, he was so uncomfortable two days ago that he just couldn’t take daytime naps and we had to give him Ativan, a sedative, to allow him to get somewhat of a restful night’s sleep. Yesterday, nothing would calm him down and the ambu bagging was going on for hours. And since our nurse was out sick too, picture me sitting on the sofa with Wyatt lying on my chest. I’m holding him with my left arm and ambu bagging him with my right arm while timing out each manual breath so that I can still silence alarms and turn on his feeding pump. In the mean time, my three year old is bouncing around on the sofa next to me begging for my attention and all he wants to do is play with Wyatt. Priorities, ensure your 10month old keeps breathing or making your three year old a sandwich? You learn how to multitask very quickly and thankfully we have plenty of handy snacks around fulfilling the three year old’s need for independence… We were running out of options quickly with Wyatt because he was already on 3L O2, increase ventilator settings and still he kept desatting and throwing episodes.  We knew that if we have him admitted to the hospital they would just stick him with an IV which requires several attempts since he is a very hard stick and then they’d sedate him for a few days until he’s better. Well, we practically have a home PICU, are now thoroughly trained in all sorts of emergencies regarding Wyatt, know more about Wyatt’s specific needs than I could ever explain to a doctor in just one day,  and we can administer sedation through his G-tube without getting him more stressed out being surrounded by doctors and nurses. So as much of a guilt trip as this is, we knew we had to basically knock him out with sedation for a few days to let his body rest and not compromise his breathing/oxygenation any further. Since Ativan has shown mixed results with Wyatt when given more than one day in a row and we used up our last dose the previous night, Pulmonology called in a script for Chloral Hydrate. Supposedly the drowsiness side effects wouldn’t be as long lasting with Chloral Hydrate vs. the Ativan and it would only take the edge of and make him a bit more relaxed. So we gave Chloral Hydrate a try hoping it would work better than Ativan with less side effects. Holy Coconuts, what a messed up drug that is. You could definitely tell when it was starting to kick in because his eyes were losing focus. But then imagine the incredible hunk stuck in a 10month old body without any control or coordination over his arms or legs. He was fighting the drugs so bad and getting so angry. He wanted to cry but the sedation wouldn’t let him. It took over 15 minutes for him to finally give up fighting but he still managed to throw a few episodes before then. Even after he fell asleep though, he was restless. And when he woke up after only 1 ½ hours of sleep, he was frantically grabbing things to chew on. It was insane. While I don’t like Ativan either, I think I definitely prefer it over Chloral Hydrate. Either way, it seems so wrong to be putting your own child through all this even when you know, the alternative would be worse. How I wish Wyatt would just be able to cry all day like you and me can. I would pay for that annoyance over this life or death scenario.