The decision to come to the hospital is never made lightly. While it’s easy to sit here after the fact and say how much safer Liam was in the hospital with all of their heat and electricity and oxygen supply. There’s a significant case to be made that Liam can be much more UNSAFE in the hospital with all their Flu patients, and MRSA cases, and over-eager interns and residents. So while it looks like a no brainer on the outside, finally making the call to head to the hospital was scary not only for the ride but also for all of the very real and ever-present risks that we would face while we were there.
The ride was uneventful. We took it slow and took the route that we knew had the least amount of hills. “The Plan”, which we would spend the next 13 hours amending on a minute-to-minute basis, was at this point just get to my hospital. The hospital I work in. Once there, we would be able to find a power outlet and some warmth in my office at least, and I would have a few hours at least to try to find an oxygen tank. While I know pretty much everyone in our little hospital, including all of the respiratory therapists, you really can’t just ask for bottled oxygen if you’re not a patient. They don’t just give the stuff away.
Wait, wait, wait. I think I forgot to mention something. You see, this all happened on a weekend. My weekend. My weekend to work. Our three person management team rotates to work every third weekend, and so regardless of how things had worked out with the power at my house during the storm I was going to be driving to the hospital anyway. I had hoped I would be leaving Karin and Liam in a warm and well-lit house to do it but you can’t always get what you want. That day, we just had to try to get what we needed.
I dropped Liam and Karin off at the front door so that they could get their temporary visitor badges at security while I moved the car to the staff parking lot. They were met with enthusiasm and smiles by people who remember his own hospital stay there 4 years ago as if it were the day before. My own boss met us and had arranged with the NICU department manager to set us up in an unoccupied family room for a while. For a few hours at least we had a place that Liam could lay down. Only minutes after getting Liam comfortable it was time for me to put on my other hat and go manage the department, so I did to Karin what I had been doing to her the whole night long every time I went outside to shovel snow, I left her and Liam alone. Over and over again.
For the next 6 hours Karin and Liam stayed warm and dry in that family room. Watching the local news coverage continue to plead with people to stay in their homes despite the now bright sunshine since roads all over the state were still impassable. It was obvious that this oasis of sorts was only a temporary solution to a greater problem as the reports now were of the possibility that our power would not be restored for days. A new plan had to be made as we tried to figure out where we would be able to sleep for the night.
Trying to coordinate with family and friends to decide on shelter for my family while at the same time trying to staff and manage the food and nutrition department of the hospital I was near breaking at around 4pm. We’ve been through some hairy medical moments and situations but this was the most frazzled I can ever remember being. I closed my office door. I put my head in my hands and I cried.
The temporary shelter became even more so when a family of 6 who had every right (if not more right) to that family room all came in. The family of a patient in the unit at the time it was us intruding on them and not the other way around, but it was their coughing and sneezing that made co-existing there impossible. Last august we took a healthy Liam into a hospital to adjust his diet of all things and when he caught a bug we didn’t end up leaving for 37 days. I’ll be damned if I was going to let something like that happen again. Karin called my office to let me know what was going on and had Liam packed into his chair and downstairs back in my office before the words could get out of my mouth.
Karin was at her breaking point too by then. With tears in both of our eyes, I tucked our little family into my department’s bookkeeper’s office which I knew wouldn’t be used by anyone until at least monday. Fold up canvas cots were readily available for staff all over the hospital since so many had been snowed in and I grabbed one of them for Liam. It was less than ideal and not nearly the solution we were looking for. It really was time to throw in the towel. We knew at that moment what we had to do.
“Hi. This is our son Liam he is a frequent flyer here and as you can see he is on a ventilator. He is not in distress, he is not sick, he does not have any symptoms of anything and does not need treatment but we have no power and no heat and more than anything now we need an inline humidifier because after about 16 hours on his HME we are going to dry out all of his lung tissue on his portable equipment. He needs a half liter of oxygen and our portable tank is now empty. Is there any way we can be admitted for the night to keep him safe?” Karin has game when it comes to breaking down a situation for an ER nurse.
Whisked away and into an ER room we only had to repeat the story a few more times. Once to the nurse who was awesome, both at getting us whatever Liam needed and at telling us what we wanted to hear. Specifically that we weren’t being a burden or getting in anybody’s way of more deserving medical cases. I know when Liam is admitted long-term we jokingly refer to it as the Hasbro Hilton but it is The Hasbro Children’s Hospital and most certainly not a hotel.
Confident that Both Liam and Karin were at least somewhat comfortable I made my way back to work (about a block away) to finish out the shift and ensure staffing for the early morning responsibilities. With transportation around the city completely shut down there were plans to be made and contingencies to be set up.
I mentioned over-eager residents at the start of this post. They just can’t help themselves. If a patient is in a bed there must be something they need to do, and so only minutes after having our whole ordeal explained, including multiple mentions of his robust health and significant lack of symptoms of ANY KIND (!!!!!!!!) promptly ordered a sputum culture when she spied Karin wiping a little drool and snot from his face and mouth. Drool and snot are ever-present in our lives here and should alarm no one, most of all an MD, but despite Karin’s protests a few minutes later a CNA left the culture kit on the counter for the nurse to administer the test on her next visit to the room.
So Karin swiped it.
Knowing that simply the lack of the kit in the room could easily delay the test being sent off for hours and hours, Karin grabbed the jar and the applicator and catheter and threw them in her bag. Just the act of taking a sputum culture will without a shadow of a doubt keep us here at least 3-5 days while we await growth only to be positive for his colonization of Pseudomonas. (trach and vent people will know) Then we try and treat a gram-negative colonization and who the hell knows how long this hospital stay lasts? Before you know it, a month has gone by. Nuts to that, we’ll figure a way out of that no matter what it takes.
The ER doctor made her way back into the room and Karin explained everything I just put into that last paragraph. They agreed that she would stop ordering tests provided that nothing that Liam did seemed out of the ordinary. Crisis averted.
At about 9pm, and now going on 24 hours since the lights went out at home, I closed up shop at work and made my way back to the ER for the night. Trying my hardest to keep a smile on my face I had Karin take a picture of my message to our good friend Nemo for putting us in this position. Thanks Nemo! Here’s my salute to you.
Once I got there, the news that we were being admitted to the hospital onto the 5th floor was welcome news and an hour later we were moving all the things we carry onto the elevator to our new digs for the night. A big double room that had no other occupant at the time but also afforded us enough space for his wheelchair, a vent table and two recliners(!) it would do for the night, and in the morning we’d figure out the next step. Hopefully someone we knew nearby would have power and a clear enough road to get there.
Liam was now snug as a bug in a big boy hospital bed. His ventilator puffing away alongside him and his own fluffy blankets we had carried with us all day atop. He had handled this whole ordeal better than both Karin and I did. He handled the day better than I ever could have hoped he would. The kid’s a trooper I tell you.
The attending doctor on the floors just got it. She got it in a way that most docs don’t and after assuring us that we were probably the most worthy admission she had had all night, explained that her own treatment plan for Liam was to close the door behind her and not see any of us until the morning when she would help us by calling the power company to explain why my house needed power immediately. Knowing that a call like that when close to 200,000 people were without power would be fairly silly we thanked her anyway and said that just giving us this room for the night was more than enough. She made a joke on her way out of the room that she just knew that 10 minutes after she filled out all of her admission notes and paperwork we’d probably get word that the power was back on. Thinking it impossible we all had a good laugh with that.
It wasn’t exactly 10 minutes. More like 20 but when I got the grainy, blurry, and dark picture message from my father’s outdated flip phone I recognized what it was immediately.
WE HAD POWER!
Only about 6 blocks away, when my parent’s power came back my dad (literally) ran over to our house to check it out for us.
After hugging each other and smiling enough that if we had any left there probably would have been tears, I ran to the nurses station to catch the doctor. On another floor already the nurses could already tell why we needed her.
“Do I have to fill out discharge paperwork now?” Our assigned nurse asked half-joking and half annoyed that she would have to get all that paper work done this late at night.
“You have to do what you have to do but I am going to go get Liam’s van and we are getting out of here to go home!” I said with a smile.
That’s when Liam had had it. That’s when it all caught up with him. That’s when Liam decided that he was tired of the cold, and tired of his chair, and tired of his parents, and tired of being anywhere other than his bed or his couch. That’s when this kid of ours who has been through some of the most painful medical situations I have ever witnessed and done so without even shedding a tear, had his longest, loudest, and most severe toddler-temper-tantrum ever. From the moment Karin pulled the blankets off of him in that hospital room until we got him inside our house and lay him down in his crib 45 minutes later Liam cried. Not from pain. Not from sickness. For the first time I saw my boy reach his breaking point on being over-tired, and overwhelmed by it all. Luckily for us he cried himself into exhaustion and by the time his twenty-minute nebulizer treatment was finished he had drifted into a calm and peaceful and most important -a comfortably warm, sleep.
Liam was overwhelmed, Karin was overwhelmed and I was most certainly overwhelmed, but we made it. We made it together just as we make it through everything else life throws at us.
It may not be pretty at times but we’ll always make it through. There we were, stressed out, drained, and unable to fully comprehend what we had been through until days later. 26 hours Hell but all we needed to get through it was each other.
And so it ended just as it had begun, with a sleeping boy, Karin and I huddled together on the couch, only on this night, I didn’t even have those delicious brownies around to comfort me. With chocolate chips in them dammit!
And that’s our story. There’s not much more to say than that. Like I said when I started this tale, I have been living in the shadow of Blizzard stories my whole life. Now I have my own to share. Man, my grandkids are going to get bored hearing this one over and over and over again.
Thanks again for hanging in there.