"We live with life and death drama EVERY SINGLE DAY".
You see, every single day our son survives, it is a VICTORY. We don't throw a daily party or make a daily social post to celebrate. We thank our God that we are given another day. And we thank our God that we too, have survived.
We all struggle with PTSD. We don't talk about it much because societal acceptance of understanding PTSD doesn't lend beyond battlefield trauma or surviving an incident where someone was trying to take our life.
Our battlefield is truly, daily human survival. With and without assistance from medical professionals, WE ARE BATTLEFIELD MEDICS. Daily, we try to survive through another day. Usually we have the supports we need in our medical tents at home, sometimes with nursing assistance and with all the necessary tools to keep our loved ones alive. But some days, we take a chance to move outside of this little PICU bubble we have created for them to keep them safe, in the name of quality of life for the entire family, and it is a gamble. Every doctor's visit and family trip is a calculated risk. Usually we survive. But sometimes, we are injured in this battle.
When Braden was younger, we would travel home twice a year to see our extended family. A few times, a piece of his supply equipment would break, and we were always lucky to find a Durable Medical Equipment (DME) company to help us and we could purchase whatever had broken. Our list includes a heated humidifier chamber, air filters for the portable nebulizer, and other small needs. And when he was about 8 years old, we had to change up this plan of annual visits. His body was tolerating cold temperatures less and less. The ability to stabilize him in the cold became a near impossible feat. And that year, following our wintery Christmas trip home, we drove straight to the hospital. Braden would spend almost a week there recovering from the domino affect that happens when he becomes hypothermic and other organ systems and autonomic functions quit working properly. We had to decide to end our Christmas holiday travel home. The risks got higher, so we had to reduce the risk by only traveling once a year, during the summer.
This trip would be different. Braden is now thirteen, and his sister is almost four. Now usually we travel in July to enjoy the Fourth of July holiday with our family, and we are very certain it will be warm. This year we had to travel in May to accommodate work travel and other planned activities. This trip, my PTSD would be triggered more than once. And I am still struggling to rebound from it. It's taken me several days to even be able to talk about it without bursting into tears either during the conversation, or holding the emotion in and immediately breaking down as soon as the conversation was over.
On our second full day home, Braden's pulse-ox, the machine that tells us when:
a) his oxygen levels have dropped too low indicating his airway needs to be cleared
b) his heart rate is too low due to hypothermia
b) his heart rate is too high due to a seizure, severe agitation or pain
...decided to immediately retire itself with no notification at 9am in the morning. Panic sets in. Tears begin.
When this machine goes down we are not left with many options. The considerations were to admit him to an unfamiliar hospital to be hooked up for monitoring on their machine or find a local DME company to rent us a machine. We chose to call around to find a machine to rent, until we could get back home and could ship the rental machine back. The first company said they had one but had to check with another location in about an hour. Once the other location called back to say their inventory says they have one in stock, but will have to pull it from storage. Daddy drives to that location to rent the machine, but when they turn it on, it malfunctions much in the same fashion our current one did. So I began calling another DME company to locate a machine. I found another company who has a machine in stock, they need a doctor to write a script. 6 more phone calls back and forth to Braden's home doctor, they agree to let us come pick up the machine. The tears come, but I can BREATHE again.
Over 30 phone calls from 9am to 3:30pm, Braden has a loaner machine to get us through an interim period. Our home DME company overnight ships Braden a NEW machine. 5 more calls back and forth with theDME company and the vendor company the next day because the NEW machine won't function properly... and finally we are back in business. NEW machine is working, and we will return the loaner tomorrow (just to be 100% sure the new one will work right).
But this would not be the end.
I'm sharing this next part, not for sympathy, but to build empathy for those you know who are trying to raise a medically-fragile and medically complex child. There is nothing ordinary about our days. You may not see it in our facial expressions or hear it in the words we choose to share. Every day we are battle-weary.
As we made our way back home at the end of our trip, we made plans to relax at the hotel. Little sister and daddy would go relax at the pool. After a long day in the car and one more ahead, we all needed a little respite. Mommy would spend time bathing our sweet Braden, cleaning him up from the long day in the car and another on the horizon the next day. The plan would be to rise early the next day to get home, unpack and recover from the earlier trip trauma. Little did we know the trip trauma was about to kick in high gear.
After dinner we settle into nighttime routines. For Braden this means we do a nighttime nebulizer treatment and then cough assist while we suction all the built up secretions and clear his airway for a good night's rest. As I went to turn on the suction machine to use with cough assist... it won't turn on. I try several times again. Nothing. And the panic comes on again. The tears come again as my husband emerges from putting the toddler to bed. We have NO idea what we are going to do.
I call our respiratory DME company. They didn't offer much hope, except that they would try in the morning. I phone another trach momma for ideas. We have a back-up plan now, but we aren't sure it's the most efficient possibility. We call a local Emergency Room for advice and to get ideas on what equipment they have there. They spend the next 20 minutes essentially convincing us to NOT head to them in an emergency situation, even though they have the right equipment we could use. Instead they want us to use a hospital another 8 miles down the road. My PTSD kicks in from the time we were turned away from medical help from the special needs emergency shelter during Gustav, and the hospital also could not take us. Again, we are in the middle of civilization, turned away by medical professionals who took an oath. We were on our own - and that time it meant resuscitating our own child 16 times while huddled in a closet in a hurricane in a building a tornado had taken parts of the roof off of. Anxiety is in overdrive.
My husband and I decide I will head to the 24-7 WalMart and pick up supplies we think we can use to rig our own suction device. Bicycle pump to pull back and create suction on the canister - it doesn't work. We bought an inflatable inflator/deflator and try to rig it up as suction - it doesn't work. I try attaching silicone straws to the end of a feeding tube - it only kind of works. In the end, we default to the delee trap, designed to capture a mucus culture (think of a nose frida, only with a tube collector in the middle). I try it at midnight, and almost fill it and get a nasty headache trying to manually suction too thick snot through a too small tube. But it's something. I clean it out and have it ready for when his machines go off in the middle of the night. While I was out shopping for a rescue kit, Brad was busy direct messaging DME's in the area trying to find a suction machine.
I decide I must get some sleep so we can drive out of here as soon as we can get our hands on a new suction machine in the morning. I sleep with my contacts in and the same clothes, in case we have to head to an ER in the middle of the night. And we would be racing to get that new machine as soon as humanly possible.
BEEP-BEEP-BEEP, BEEP-BEEP.
It's 4 am. Braden's machines go off, his oxygen is dropping and his airway needs to be cleared. I'm trying our back-up plan but it' doesn't seem to be working. I'm crying and asking Brad to have 911 ready to call. I honestly didn't know if we would figure something out good enough to bring his numbers back up. I'm shaking and working as fast as I can.
Finally, after minutes and minutes and minutes of attempts to clear his airway, in the middle of it all, I wasn't sure we could stabilize him. I was able to use the delee trap and a feeding syringe to suction out every snotty orifice my son was leaking mucus from.
I FELT LIKE I WAS A BATTLEFIELD MEDIC, WITH ONLY A FIRST AID KIT AND A SHOELACE TRYING TO SAVE A LIFE. And this life was my son's. I cried out to Jesus to help us. He gave my mind sharpness and hands quickness to stabilize him.
Exhausted, I fell back asleep for a nap until my husband woke me up with good news. An early rising local DME company worker said they had a suction machine, they reserved it with our name for when they open, but we needed to get a doctor's script for it.
Another 5 or 6 phone calls and we had the script and were on our way to get the suction machine. SOON we would have the relief we needed because we would have the right tools to save his life. We load up in the car and start making our way there.
Then, I see it. The gas tank is on EMPTY. The "distance to empty" says "0 miles". I begin to sob loudly. I cannot believe that in all the midnight run craziness that I didn't check the gas. My van does not blink or beep when gas or low. A light simply comes on. And now, because I have been so distracted and panicked, I cannot believe what I have done. I'm sobbing louder slamming my fists into the steering wheel asking my husband where the next nearest gas station is, in this foreign city, on a freeway, in morning rush hour traffic. He guides me there, we see it, and we are about to pull in, realizing it's all shut down and no pumps are on. More panic, more tears, more please to JESUS PLEASE HELP US!! We see a Costco up ahead and decide to drive in hoping the gas station is open although the store is not. I hold my breath, praying for Braden to keep his oxygen levels as we drive in on fumes, praying too that the gas station will appear as we drive around the corner. Praise God, the pumps are there, and they are open.
I rifle through my wallet for my Costco card and hand it to my husband. And then I completely break down, hunched over the wheel, sobbing like I've nearly never before. Here is where men and women deal with things differently. He tells me to calm down. I tell him that this is what I was holding in, and that I needed to get it out so I can compose myself and make it to our next important stop, the DME company!
I wipe my tears, compose myself, and we head to our next destination. We walk in, get the suction machine, and immediately run out to the car to administer cough assist and suction out everything that was building up in Braden overnight. We can breathe again. We can head home. Battered, bruised, broken, and blessed.
THIS IS THE REALITY WE HIDE.
One hour it's literally pins and needles and a life hangs in the balance.
The next hour we pretend our life is back to normal, because we have to, and because this IS normal for us. Fine one minute, terrified the next. So we don't take people on the roller coaster with us. All we can do is survive it. To get through the current crisis and put the oxygen mask back on ourselves and breathe.
It is LITERALLY life and death and that fine balance in our home. EVERY. SINGLE. DAY.
Social graces dictate we tell you everything is "fine" even when it's not. Frankly, "fine" is just the easy answer. It's too hard to relive the terrors we've recently survived. It's too much to expect you to hop on the roller coaster with us. And our real answer would only define how things are in that moment, for that hour, for that day. The only thing constant is change.
So hug your people. Thank heavens your life maybe doesn't look so hard now. And try to soak in the little moments you get. And try not to sweat the small stuff. At our last gas stop, the high-end sandals I bought only a year ago decided to break apart on me. It wasn't the last straw to break, but I was certainly able to keep perspective when it happened. We made it home, and all of us are alive. For most that may not seem like an accomplishment, just an every day status. But for us, it was a major victory won.
Laila got this little heart from her Papa's gift shop. It's all in one piece, shiny and glittery on the outside like I believe my personality is. But if you look closer, you will see this crack that had to be filled up to keep the heart together. This flaw that makes it look less than "perfect", but the binding agent that filled up that crack in my heart was Jesus. Making my heart stronger than it was before. Ready for the next battle and for what lies ahead.
Bee blessed.
Kodi (mom), Brad (dad), Braden, and Laila (the little sister)
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