What a weekend plan we had!! We were going to go to Hudson Falls, spend time with family, maybe do some shopping, and go to an aquarium!
That is not the weekend we had.
As many of you fellow Down Syndrome parents know, there are many possible medical risks that we have to look out for. However, nothing prepares you for when they come up.
Friday afternoon, when I picked Nicholas up from his sitter, he was experiencing labored breathing, coughing, and little red specks on his upper body and face.
I immediately drove him to the pediatrician, and called my husband to meet me there. When the doctor spotted Nicholas’ labored breathing through the glass at the check-in window, he put us in a room immediately. Shortly after, he was calling an ambulance.
Hearing that your son needs medical attention for a short ride to the next city is, in a word, terrifying. I myself had never ridden in an ambulance before, and didn’t even know what to expect. Days later I heard that Nicholas’ regular pediatrician wished us luck in the waiting room, and I had no idea he was even there! I must have blacked out with fear by then…
Soon, a stretcher was rolled into the room, and they strapped Nicholas’s tiny body to it. They wheeled him outside and the medics told me to sit where Nicholas could see me so that he wasn’t afraid.
While in the ambulance Nicholas was hooked to an oxygen mask. As I helped him support his head, I kept checking out of the back window for my husband, who was right on our tail. He was made for that task, the man likes to drive fast.
Before I knew it, the paramedic was handing me a mask to go over my face. The breathing treatment that Nicholas was about to get would have raised my heart rate, which isn’t safe for me or my growing baby girl.
I knew seeing the masks on our faces would freak my husband out, and when I looked out of the back window to give him the “ok” symbol, he was gone. I was so worried, because it wasn’t like him to care much about the speed limit in an emergency.
When we pulled up to the hospital, Nick was already standing there. Apparently he sped ahead of us so that he could park and walk to the ambulance and wouldn’t miss anything. Smart.
The paramedics communicated with the hospital staff and before we knew it, we were in a room where, we had learned later, really sick and possibly contagious children are examined before making an assessment on whether or not to admit them.
As Nicholas was being evaluated the hospital really started filling up. Every time I went to use the bathroom, and we all know how frequently a nervous pregnant lady goes, I noticed more and more kiddos joining the ER ranks. Kids and their parents were lined up in beds in the hallway. I felt lucky to at least be in a space with just Nicholas and Nick.
Since it was getting crowded, we were left in the exam room for a while, and were warned that it would be a long time before we were in a room. So, we took turns snuggling Nicholas on the bed and watched AMC, just in time for a Tom Hanks movie marathon. Castaway, The Green Mile, then the Da Vinci Code. These three movies acted as my clock for the night to come, because I had lost all track of time at this point.
After Nicholas was given medicine to reduce his fever and was done getting hooked to all of his monitors, the Fedex plane crashed, leaving Hanks alone on the island with no one but a volleyball to talk to. Something about this movie being on struck a chord with everyone who was working there.
All of the doctors who were on duty had to examine him, and we got really good at telling our “so when did this all start” story. I would tell my part, Nick would jump in and explain what happened when he was with him, then I would jump back in. It turned into a rehearsed skit with how many times we had to recite it. Each time we recited it, the doctors looked up at the TV and made some comment about the movie.
When the doctors who were deciding whether or not to admit us to the hospital upstairs were able to talk to us, it was the end of the movie where the wife has to choose between the newly-skinny Tom Hanks and her new husband. Each one of them were having trouble concentrating because they were upset with the result of that choice. Even the guy who was supposed to move us to our new location was said “oh no, I hate this part. I can’t believe she didn’t wait for him.”
Until this point, we were pretty comfortable in the large, private exam room. When you are with your child in an ER, it makes you feel safe to be quarantined in the corner room. So, when we were told we were moving we assumed it could only get better from there.
Oh boy were we wrong.
Just as Castaway ended, so did our luck. We got the news that we were going to be moved to another room. We were staying positive, but when we got to the new room, I knew that positivity did live there.
“This is fucking disgusting. No wonder babies fucking die.”
These were the first words we heard from the mother of the other child when we walked in. Such a warm welcome. Not a good sign for the night ahead, and what a long night it was.
Sure, her frustrations were not completely crazy. You should have seen this hospital room. It was a room made for one patient, but there were two beds, two cribs, and just a thin curtain in between. The crib on our side and the bed on their side we’re almost touching.
When we realized we would have to stay there overnight, we knew that things were going to get a little uncomfortable.
The space between the crib and the bed we had on our side was not even big enough for both me and my pregnant belly. When I walked between the two, my belly button would slide along the bars of the crib. Whenever we hit the call button, the poor nurses had trouble moving by us to turn it off, and we had to get on the bed so that they could fit.
Our roommates had a little girl with asthma, but you would never know it. She was bouncing off of the walls. I won’t talk too much about them, but I will say to all ER nurses who may be reading this that about 90% of the complaints that the mother made to the charge nurse were just made up. We were there, and saw all of it. The staff treated them well, just as they treated us. They were just frustrated at our circumstance, and a little delusional.
Nick and I, on the other side of the curtain, tried to just suffer in silence and watch The Green Mile. While Tom Hanks was suffering from a UTI or bladder infection or whatever it was, we had to listen to the other mother on the phone with someone saying that if her kid gets sick from the sick kid across the curtain she was going to “flip the fuck out.” She even told someone on the phone that the “sick kid” was kicking her though the curtain all night long! Nicholas slept like a rock the entire night and even if he wanted to kick them, he couldn’t fit his chubby legs through the crib slats. However, I wouldn’t be surprised if it were my husband who kicked them… but I didn’t sleep all night and probably would have seen that.
Anyway, I am getting side tracked. The moral of the first night was that Nicholas had a bunch of tests run on him, was hooked to an IV all night, and slept well. We watched the Tom Hanks movie marathon, and didn’t sleep a wink. The end.
It wasn’t until around noon that a doctor saw us and started telling us what was up with Nicholas. He had the Corona virus, an ear infection, bronchiolitis, and what they think are the early stages os asthma. All of this was causing him to have a rash on his whole body, and lots of boogers, so my poor babe was not looking good.
Our lovely neighbors, who thought they were at a Marriott and not a hospital, were finally moved upstairs at noon-ish the next day. They credited their complaining to their ‘speedy” move, but we later learned that the nurses felt bad for us for having to deal with them so they got them out of there first and had us waiting for an awesome corner room upstairs. The nurses could see that we were just as miserable as them, but didn’t choose to make their shifts miserable, and it paid off. Be good to your nurses, people!
And we were off! Making the move to the deluxe apartment in the sky! Nick and a member of the hospital staff wheeled this cutie on a fun ride to our new spot. When we got there, we were so relieved that we didn’t care that we had to stay another night. Anything was better than the torture chamber we were in the night before.
Notice a really round and solid belly in this picture? So did we, and we were nervous about it. As it turned out, we were so focused on his symptoms that we hadn’t noticed that he didn’t poop all day long, and for most of the next day. Poor backed up little guy!
The nurse who checked us in was just getting to the end of her shift. She told us about what our stay would be like. She listened to our sob story about how we were supposed to be going to an aquarium and having a fun weekend but got stuck at the hospital. She was very welcoming.
Now, we were able to snuggle up with Nicholas on the couch, order food out, and relax. Side note, shoutout to my awesome father-in-law who brought us food multiple times during this experience!
We settled in for another long night. Nicholas needed breathing treatments and his vitals checked every four hours, so we didn’t expect to sleep much. We searched the channels for a movie to watch. Castaway was on, but we couldn’t bear to watch it again, so Jurassic Park won. We played some Rummy, entertained Nicholas until his bedtime, and unfolded the couch to go to bed. Poor Nicholas wanted to romp around and play so bad, but since he was hooked up to so many monitors, his choices were to be held or play in the crib, so we tried to have as much fun with him as we could.
The nurses were hilarious the next morning, because they couldn’t believe what we had slept through. At one point, apparently Nicholas had pooped and peed so much in the night from all of the extra fluids that the nurse had to change his clothes AND his bedding. We slept through all of that, and many nebulizer treatments. At one point I did wake up while Nicholas was getting his boogers slurped out by a machine, but as soon as the nurse laid him back down he went right back to sleep and so did I. I guess not sleeping for two days really got to us by that point! The only evidence that we had of Nicholas’ wild night was the hospital sleep sack he woke up in, which my husband called his “muscle tee.”
Here is where nurses make the most difference, in my opinion. All of the nurses took really great care of us, but the nurse that we had only seen briefly the day before remembered that Nicholas was supposed to go to his first aquarium this weekend, and brought him his own little personal fish tank to look at. He loved it and it as so cool that she remembered that little fact about us! It really made us feel special.
Around noon the doctor came in to re-examine Nicholas, and could see that he was doing a lot better and decided that we could continue caring for him from home. Thank goodness! My super-organized husband already had us packed up and we were ready to get out of there!
Nicholas and I were wheeled out in a wheelchair and of course the nurse stopped so Nicholas could look at the big fish tank before we left!
Alright, so I learned a few things during this experience that I need to share with my fellow DS mammas and readers in general.
Kiddos with Down Syndrome tend to have small bronchial tubes. This can cause illnesses to go from bad to worse really quickly. In hindsight, I should have acted faster on some of the signs Nicholas was showing, like rosy cheeks and a runny nose, because I know it is likely for his sickness to spiral out of control. I am way more prepared for next time now! I swear, his Down Syndrome affects me so little at this stage that I forget that he has it, and treat him like any other kid. But this is a case where I could be way more cautious.
The other thing that I learned is that if you are choosing someone to raise kids with, make sure it is someone who can make the best out of being trapped in a hospital for two days. Nick didn’t leave our side for a second, and actually made the experience fun. Sure, I could have done that alone, and Nick could have too, but why would we? Everything is better when we are together, and I am so thankful for that! Thank you for being the best dad ever, Nick!
As I write this, we are back home and Nicholas is having a blast playing with his toys. He is coughing up the remains of his illness, and his rash is almost all gone. Yay! Thank you all for the well wishes we received this weekend.
Here’s to hoping we won’t be admitted into the hospital again any time soon!