Happy MothER's Day
photo by scott simon
It never fails. A weekend or holiday comes, and that is exactly when your medically complex kid gets sick. Last time, it was New Year's Day and a respiratory virus sent us to the ER for breathing treatments. Today, on Mother's Day, it was a suspected hernia.
Mother's Day was actually going really great, almost too great. In the back of my head, I had a feeling something would kick our butts, so I proceeded to enjoy myself while it all lasted. I slept in, had pancakes and coffee for breakfast - not made by me- finished a book, lounged on my patio, blew up a mini pool for my kid (he was scared of it), chased after my son in his SpongeBob car, started another book, indulged in a couple glasses of prosecco, and hosted a visit with grandparents. For dinner, my husband grilled some steaks, and even set the table. It was a dream. Until it wasn't. After dinner, during a FaceTime call with my sister, I noticed a huge lump in my son's abdomen. Huge, as in bigger than a golf ball.
Inside, I was panicking and holding back tears. All I could think of was: hernia. surgery. surgery. surgery. surgery. I thought we were out of the woods for surgery for a few years. surgery. I don't think I can handle another surgery. not now. not tonight. not tomorrow. oh god, oh god, oh god. My sister must have sensed my anxiousness, because she immediately says in a soft, sweet, calming voice, "don't panic."
She talks me through what would be the normal course of action in the case of a hernia.(She's a doctor). My one year old surely senses my nerves and starts screaming crying. I try to listen to my sister's advice, but it's hard to keep a straight face. I hang up with her knowing that I won't be able to sleep while there is a giant lump of God only knows what in his belly. I run upstairs to consult with my husband, i.e. tell him we are going to the Emergency Room. It's not our first rodeo, so we take our time to pack a bag for the evening. Medically complex kids tend to get a room rather quickly, but are usually the last ones to leave. Everything must be ruled out, and we now know to bring books, toys, laptops, and phone chargers, anything we need to get comfortable. Off we go to the ER, where I maintain my composure as much as humanly possible.
We are called in to triage for a nurse to take vitals and get a medical history. I hand over a two page document loaded with information on his medications, surgeries, feeding schedules, etc.* She marks it all down. She proceeds to take his blood pressure, where I make sure to remind her that he normally has high blood pressure. I've forgotten to do this in the past, sending some nurses into a complete panic when they see how high it is. She takes it all in stride, and then refers back to me as to why we came in tonight.
"So the mass on the abdomen is why you are here?" She asks.
"Yes," I say lifting up his shirt. I continue to explain my story but am quickly interrupted by an
"Oh my God."
F*&!. I think to myself. Better mentally prepare myself for surgery.
We finally get a room where a doctor greets us. I take her through his medical history. She seems impressed with the information I am giving her, and takes a look at his bulging belly. Because of his complicated history, she seems convinced that it's an issue related to his kidney cysts. I try not to panic. Again. My kid, unphased by his surroundings, starts straining to poop -- I should point out that my kid has constipation issues, and always will. Straining, for him, is an everyday occurrence and we've grown quite used to it. -- The doctor chimes in with her course of action. We head off to ultrasound to see what's going on in that little belly.
At this point it's definitely past my son's 10pm bedtime, which is already quite late to being with. He takes after his dad and likes to stay up late, and sleep in. The ultrasound tech goes about her business, but she can't see anything because my son is filled with so much gas she's basically looking at a cloud on her screen. Luckily, the act of her attempting to get an image serves as a belly massage, and my son farts some of said gas out of his system. I ask her if she has any idea what this ball could be, and she responds that she's never seen anything like it. *Great*.
At this point, I've surrendered to the fact that we are going to need unexpected surgery. The ultrasound was basically useless, so the doctor orders an x-ray. An hour or so later, we go in for imaging. My son is deliriously tired, and every time he's about to fall asleep, we're summoned for another test, or to fix an IV, or to check a diaper. I remember these facts about the NICU and do NOT miss them at all. The x-ray was inconclusive due to the amount of gas clouding the imaging. Ugh. Next course of action is a CT scan with contrast.
My son has fallen asleep at this point, and for this test, it's actually better if he stays asleep. (Of course, he didn't.) The CT technician has me sign a consent form, and pauses when he sees I've checked off "kidney disease" in the list of diagnoses. He looks at me squarely and asks,
"Your son has kidney disease?"
"Yes, multicystic dysplastic...." yada yada yada...
"Ok, well how is the kidney function?"
"Well one works, one doesn't"
"Did they do any tests tonight?"
"They took blood and urine."
"Ok, I need to call and check his kidney function before I give him contrast."
Are you f*&%!ing kidding me?! I think to myself. Now what?! Now we might not be able to get a test he needs because of a potential problem with his kidneys because he has a problem with his kidneys?!?! It's somewhere around 1:00am, and I'm a ball of confusion and sleep deprivation. I'm nervous thinking what the test results will be, meanwhile, I've apparently given consent for a test that's going to affect kidney function, and I feel like one big failure of a mother. After a long pause while our technician calls in for test results, we finally have an answer.
Kidney function is fine, and we may proceed. I strap my son onto the table (never fun), and try to keep him calm. After a few whirrs of the machine and a few tears (the baby's, not mine), it's back to our room we go. We wait. I charge my phone. My husband is studying for the bar exam on his laptop. The doctor comes in and gives a look that I can't really read.
"Do you want to come see the scans?"
"Oh God, what is it?"
"I think your husband was actually right on this one."
My husband was convinced that our son just had a big old ball of poop stuck in there. Both the doctor, and myself, were sure that there was no way that bulge could just be poop. Tonight, I want my husband to be right. We walk out into the office area to check the screens.
"Oh my God. That's poop?!"
That big ball in the upper left corner -- that's poop.
"Yes," the doctor chuckles. "Our radiologist said he's never seen a piece of poop that big before."
Apparently, my son now holds the record for largest piece of poop ever imaged in the hospital.
"How is he supposed to get that out," I ask, convinced it will require surgery.
"You'll give him some Miralax to help it along, and follow up with your GI doctor."
Oh, how I wish I could have done this for him. I felt so bad that he would just have to get it out himself, but also relieved that we had dodged surgery.
I walk back into the room to pack up for the night, shaking my head at myself for getting so worked up and panicked about what turned out to be poop. POOP. I totally over-complicated the situation. I'm still glad we went to the ER to get it checked out. I'd rather be safe than sorry. But, POOP! Of all things.
We left on a note of slight comic relief. Until they took out his IV. It seemed the nurse did an amazing job at finding a vein, so much so that my son looked like he was going to bleed out when the needle was removed. There was blood everywhere. I open the door and yell, "we've got a lot of blood!" -- trying to stay calm of course, in the midst of reminding myself to not over complicate things in my head. The doctor runs in and takes Oscar in her arms, quickly applying pressure to stop the hemorrhaging. Of course. Of course, we can't just walk out of the ER without a dramatic exit.
In the past, ER visits have been really stressful for me, as they are for most people I would think. With the history my son has, I tend to be on edge and err on the side of caution when I think something is wrong. I really have to practice maintaining composure in stressful scenarios. After two or three ER visits, I've learned how to keep calm under pressure, and know what signs of distress to look for in my kid. Chances are, tests will need to be done and we will have to wait a while to know answers no matter what. So it's best not to royally freak out, and if the staff isn't panicking, I probably shouldn't either. At the end of the day, we usually work ourselves up thinking of the worst possible scenarios. But hey, it could be as simple as poop.
So, follow your intuition, try to stay calm, and don't make things more complicated or serious than they actually are. Our kids can sense our emotions, so if you freak out, they will, too. After all, they are the ones actually experiencing the medical issues, so the last thing they need is emotional stress on top of it! As a mom, I feel like it's my job to be the source of calm. As my son gets older, and will need another surgery, and more follow ups, he might be the nervous one. What good will I be if I'm a nervous wreck, too? Now is the time for me to practice being his rock, so that when he's old enough to understand what's going on, he can look to me for strength and comfort. I want him to know that we feel he is in good hands with us and with the medical staff, and that we will always advocate for him. I want him to feel safe in these otherwise sterile and scary looking hospital rooms. And most of all, I want him to know that, yes, he has obstacles to overcome, but they are not impossible, that life will be complicated, but only as complicated as we make it.