Never Prepared

A little over a year ago my family and I faced a situation that we never saw coming. A situation that statistically is very low and that “only” happens to medically compromised adults or children. You are never prepared for situations like the one we were in last January. You are never prepared to watch your child struggle and labor to breath. His eyes rolling in the back of his head when he wakes up coughing in his sleep. You are never prepared. Not then and not ever.

Last January Owen was 11 months old. I remember the winter being such a difficult time for him. Anytime he got a cold it would be really bad. He would have it for weeks and it almost always turned into a sinus infection, ear infection, or like last January, respiratory distress and pneumonia.

I constantly had him at the doctors, I kept telling them that he can’t ride out colds like normal children. I just continued to be told that there is no research that shows that colds are worse for children with Beckwith-Wiedemann syndrome. Every time, I was told to let him ride it out and come back in a few weeks if it wasn’t gone. I was ALWAYS back.

Owen – one of the “only”

If you are new to our family and our story you might not know that Owen was born with Beckwith-Wiedemann Syndrome, a rare genetic disease that causes him to be much larger than the average child. His rate of growth is affected and certain areas of his body. He also has an increased risk of developing cancer. You can read more about our journey with BWS here.

BWS also causes Owen’s tongue to be extremely large. His tongue was so big when he was born that it obstructed his airway, causing issues with breathing and feeding. When he was 7 weeks old it was decided that he needed to undergo a tongue reduction surgery, where they removed over two inches of his tongue to help him safely breathe.

Owen’s tongue has since grown. It interferes with his airway and his ability to breath or clear things out of his lungs when he is sick. Whenever he gets even the common cold it more than likely ends with a hospital visit and or hospital stay. In January of last year, Owen went into respiratory distress and I was never prepared for it.

Owen had been sick for a few weeks. He was seen multiple times by pediatricians who all told me the same thing. It’s a viral virus. There is not much they can do. Let him ride it out. So despite my frustration that is what we did. It only took about 12 hours for him to decline from viral cold to emergent hospitalization.

Always remembering Sunday

It was a Sunday. I was on call for work and was in all night. By the time I got home I had about an hour left before I needed to wake Owen up and take him to his routine cancer scans. I decided to stay awake and pour myself a cup of coffee. I smelled it and immediately felt better about the fact that I hadn’t slept in over 24 hours. Coffee can do amazing things!

I was sitting sipping my coffee, when our yellow lab, Maci, started acting erratically. It was like she was trying to tell us something. Owen started to cough very loud and violently. So loud that he woke my husband up. We both went into his room and he was having trouble breathing. He was so congested. So much more than he was before we put him to bed. He started coughing again and wound up vomiting all over. My husband and I turned the light on in the bathroom and put him in the tub. It was then that I realized he needed to go to a hospital ASAP.

I’m not sure why I made the decision to drive him that day. Maybe it was panic, maybe it was exhaustion, or maybe it was survival mode. Either way I grabbed him, got his clothes on, and got him in the car. As I raced out of our driveway I started to think about where I would take him. In my mind I thought Children’s Hospital of Philadelphia would be the best place. He goes there, all of his doctors are there, and his syndrome is known there. The problem was, CHOP would have taken at least 35 minutes and it didn’t seem like he had 35 to spare.

I decided that I would go to the nearest hospital and then we would most likely get transferred to CHOP once they had Owen more stable. In hindsight I should have called an ambulance, but hind site is always 20/20. When I got to the hospital I came in and told them he was having a hard time breathing. When he finally got onto a pulse ox his blood oxygen level was in the 80’s and his breathing was really labored. Normal is 95-100%, and they prefer babies to be in the 98% range. I knew just by looking at Owen that this was not good. When I looked at him he could barely keep his eyes open. I knew this was no longer “just a cold”

Every ounce of strength to fight

Owen was transported to CHOP because he was only 11 months old, needed to be on Bipap, and all of his specialists for BWS are there. The fight Owen gave the transport team was impressive but horrible to watch as a mother. Imagine watching your child who is so sick he can’t even keep his eyes open, fight with every ounce of energy he has when the transport team tried to strap him down in the stretcher. He was 7 months old and it took two grown men to restrain him. I don’t have a word that can accurately describe how watching that felt. There isn’t any way to describe what it is like to watch your child fight so hard for something, all while knowing that fight won’t change the outcome. Hopeless comes close, but I can promise you the feeling is much worse than hopelessness.

Owen’s common cold turned into pneumonia which he could not tolerate. Thankfully over the next day he responded really well to breathing treatments, steroids, antibiotics, and IV fluids. They agreed that if he did not drop his oxygen levels while sleeping we could take him home. We luckily were able to go home on our second day in the hospital.

Going back in time for the future

There is a reason I decided to go back a year in time and re-live those awful two days. Those two days that felt like weeks. I relived it so that you can see what common colds and mild viruses do to children who are compromised. They don’t just bounce back like a healthy child would. That is what makes this whole situation with COVID-19, terrifying for mothers like me. We know that a virus like this could kill our child. How do we know? Because we have lived similar situations.

I can assure you no one likes being “that” mom. The mom of a medically complex child who has to break out the hand sanitizer and the masks. It sucks being that mom. But if being “that mom” is what it takes to keep my child from getting sick, then nice to meet you my name is THATMOM.

Share the world not germs

What we are being asked to do right now is to band together for the good of everyone. Those categories of people who this virus can be deadly too are part of the everyone. It’s our social responsibility to take proper measures to keep ourselves and others safe. Why? Because we don’t live on this earth with just ourselves.

We share it. We share it with the healthy, the young, the sick, the poor, the elderly, the rare disease fighters, the chronically ill. WE SHARE IT! So as the mother of a high risk child please share the world with my family without sharing your germs. Stay inside. Wash your hands. Be smart. No life is worth the beer you would have had on Saint Patrick’s day. Make decisions regarding those who can’t help the category that they fall in. Think of those that are in the “only” category. One of those “only’s” is my son, and he has a name. His name is Owen. Think of him.

🤟🏻 -tt

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