I’ve thought a lot about this next blog post, since it has
clearly been my longest gap in posts since Sam’s story began. I’m not sure what’s held me back…I can only
guess that I am already expecting a specific reaction. I can’t begin to explain (well, in a great
enough way that makes me feel satisfied) that this blog is really for my own
mind. Yes, I want you all to know how
Sam is doing, where he might be struggling, excelling, growing, or meeting
challenges. But I write, not to convey
misery or sadness. It’s to understand
myself, and to cope with what has clearly been the hardest trial of my
life. Whenever I tend to go into
complaint mode, I see countless responses offering condolences, thoughts, or comments
that I need to/should be stronger. I
appreciate everyone’s thoughts, but know that the words that I write are simply
my awkward attempt to categorize what’s happening. I’m in a constant process of trying to make
sense of the nonsensical that is Sam’s journey.
I am not looking for sympathy – no, I’m trying to not lose my mind. While you read this blog as a story, and I’m
delighted that you do, I read it as an illustration of my psyche at a certain
moment. As I sit and write, even now I’m
unsure as to why I needed to send that message out to the universe, but it’s
important to share. I’m inviting you
into the brain and emotions of a crippled man under the weight of a thousand
suns. And I’m a human being at that –
weak, fragile, but trying to come to grips with life after Sam’s arrival. Know that by reading my words, you give me
strength. And as bad as things will ever
sound, I’ll be okay. I’ll make sure that
Elisa is okay. But I have to review my
world in a sometimes stark, cold, or truthful way that I probably wouldn’t do
if I was writing this blog to you. I’m
writing it for me. So that I can be
there for Elisa. And Lukas. And Miles.
And Sam. And not plunge into
insanity, which I feel I’m teetering on the edge of at all times.
There’s much to understand since I last wrote. And the end of it will take us back to Dr.
Doom and our latest and greatest visit with the Doctor full of storm
clouds. But Dr. Doom has been a walk in
the park compared to the last three weeks of our lives. It’s been a cruel world. So cruel that I had a moment where I was
sitting on the edge of our bathtub and I didn’t want to go on. I wanted it to all be over. I wanted it to end. I felt like I couldn’t bear something
else. Ironically, I now look back at
that moment and laugh. I’m sure many
people will laugh. It’s funny. But it wasn’t. It was the low point in a very bad few
weeks.
Friday, November
15, 2013
You’d probably think it was going to be like any other day,
but you’d be wrong. My son was sick,
although I wasn’t yet aware of it. No,
not Sam. Sam was fine. Cranky, not sleeping, and altogether still
battling his cold that had come just on the heels of the MRI/intubation from
hell. But it’s moments like this where I
realize that I have two other children.
Trust me, when you have a sick kid like Sam, it’s almost easy to
forget. As long as they aren’t lighting
the house on fire, the other kids kind of fall by the side. There’s only so much time, emotion, and agony
that you can go through. But on this
day, Elisa noticed it first. Miles just
wasn’t very active. He was lying on the
couch, only wanting to watch shows. No
fever. He said he was fine. He’d get up, have a drink of water, and then
lay back down. Elisa was worried that he
had a cold coming back. I was
dismissive. He was fine…probably tired,
as he had routinely been trying to get through his days without the required 2
hour power nap. It was only until the
evening came around that I started realizing things probably weren’t as happy
and easy as I wanted them to be. Miles
started wanting to go to the bathroom at more frequent intervals. He complained about his tummy hurting. As I continued to try to dismiss the signs,
Miles started making strange noises with his mouth. I instinctively grabbed the garbage can in
our kitchen. I instructed him to throw
up in said can if he felt so inclined. 2
minutes later, he was so inclined.
Barf. A single vomit. He looked at me, proudly exclaimed that he “made
it in the garbage”, and went back to the couch.
Saturday, November
16, 2013
Sam’s cough was clearly starting to bother him a bit
more. It would wake him up, and he’d get
upset enough that I had to pull him out of his bassinette and calm him
down. Nothing overly exhausting, but you
can tell the little guy just doesn’t feel well.
We’re compounding the problem because the oxygen is simply pushing all
of his snot and sickness down his throat – so any relief that you and I would
get from blowing our nose or even a runny nose is just not an option for
Sam. On the plus side, Miles woke up
seemingly fine. We took it easy on his
belly the night before and it looked like this would just be one of those
single throw up incidents that we could move on from. I tried to ignore the fact that Lukas was
laying on the couch, eerily similar to what Miles had been doing the previous
day. Still, it was Saturday and we had
stuff to do. I packed the kids off and
took them to their weekly swimming lessons.
Lukas did great, but once he was dressed and back sitting with us (while
we watched Miles), he seemed quiet. I
glanced down and Lukas was crying. I
inquired as to what was going on. He
said his stomach hurt. We ran down the
stairs to the public restrooms. I was
able to get him into the stall, open the lid, and stand back as Lukas went into
a much larger vomiting incident. The
poor kid. I rubbed the back of his neck
and told him it would be okay. 10
minutes later, when things were finally settled, I got him cleaned up and we
packed into the car to go home.
When we arrived home, it was almost lunch time. I asked Lukas how he was feeling and he said
he felt good. We decided to go pick up
some fast food and Lukas wanted some chicken rings from Arctic Circle. We ate.
He ate. And then he laid
down. Once lunch was cleaned up, I tried
to get Lukas up and playing. He didn’t
want to. I thought he was just
recovering a bit like Miles the day before.
A few minutes later, Lukas was crying.
We raced off to the bathroom and I helplessly watched as Lukas had
another vomiting episode. I rubbed his
neck and told him that he’d be okay.
Clearly, we had pushed too quickly and he was reacting differently to
this than Miles had.
Sunday, November
17, 2013
Another night, another coughing attacks from Sam. Was it me, or was he seeming to get more
cranky with each attack? I’d still have
to pick him up and hold him. It just
seemed to take a couple extra minutes to get him calmed back down. Luckily, singing seemed to help. But did I mention that his poops had started
to smell like the undead? Definitely not
normal for a breastfed baby, but I tried to dismiss it that Elisa probably had
eaten something that his stomach was disagreeing with. Still, it was a bit unnerving that his cranky
episodes were starting to ratchet up.
Lukas woke up without any night time throwing up, but with a
healthy amount of lethargy. Still no
fever. Miles was back to bouncing off
the walls. Lukas lounged around for most
of the day. We spent the afternoon
together watching my Saints beat the 49ers.
He seemed to slowly be recovering.
Elisa’s parents came over and we decided to order some Pizza Hut. I pushed the issue with the pizza. He sat down and ate around the edge of a
piece. Back to the couch. We ate.
He lounged. And I wasn’t
surprised when we were back in the bathroom an hour late. Lukas’ third vomiting episode was clearly his
worst. I rubbed his neck and told him I
loved him. And I vowed to stop pushing
food on the guy. One thing was clear –
Lukas wouldn’t be going to school the next day.
Monday, November
18, 2013
Lukas would be staying home, and I desperately wanted
to. I was so exhausted. Sam had what I could only describe as a freak
out last night before bed. It started
with a case of crying – inconsolable crying.
He’d arch his back so that you were forced to either let him stare at
the ceiling, or holding his head against his will. His cries were so ear piercing, I myself
wanted to cry. His arms would flail, and
he’d claw and scratch at my face.
Singing didn’t make a difference.
The various positions we were holding him didn’t make a difference. It lasted for 15 minutes, at which point he
seemed to lose steam and fall asleep.
It was scary. It reminded me of
Miles and the colic we experienced with him.
For a good month, from 6-8 every night, Miles would cry and cry and cry
and we’d just have to let him get through it.
However, Sam had some symptoms Miles didn’t…I never remember him arching
the way Sam was.
On the other side of the aisle, Miles appeared to be dealing
with diarrhea. His spirits were good and
he was still bouncing off the walls – it just seemed like whatever bug he was
battling had made its way south. Lukas
stayed home, and I was glad to see that he was slowly recovering. We went the “soup” route that night and you
could see that by not pushing the envelope with his eating, he wasn’t throwing
up all over the place. I wondered if he
would be well enough to head back to school.
Thursday, November
21, 2013
I felt like was losing my mind. Sam woke up four times last night, and every
time it immediately led into a 20 minute cryfest. Arching, crying, clawing, and flailing. It’s one thing to see a kid crying and to
tell them to be okay. When Sam’s been
battling this, I’ve been battling with myself not to lose it and start
yelling. When he’s screaming directly
into your ear for 20 minutes, you lose any sense of decorum. I could hear myself (literally) pleading with
Sam to stop crying. And when he finally would,
he would have no energy. It was a chore
to just get him to latch onto Elisa for food, and then he was barely
eating. Mind you, he was pooping all
over the place. We were changing his
diapers 7-8 times a day and the foul smelling poop seemed to flow like water
into the Huggies. But worse than the
poop was the inconsolable crying; I found myself sleeping, but only on the edge
of sleep. Whenever I’d hear him make any
grunt or cry, I’d fly over to the bassinette, hopeful that I could quell the
incident before it started. I wasn’t
successful last night. Not once. We decided that if he was cranky tomorrow, we’d
get in and see Dr. Pete.
Lukas seemed to be all better. Miles seemed to be still battling with diarrhea. He also seemed to be relapsing with the cold
that Sam was fighting as well. He’d need
to get into the doctor as well – we needed a healthy family.
Friday, November
22, 2013
4 more episodes at
night, and I was disappointed to hear from Elisa that the episodes had spread into the day. 3 more instances. You might sit back and think that 7 crying episodes is nothing to complain about. When I think about the fact that they are 20 minutes long, and that 140 minutes (or 2 hours, 40 minutes) of the previous day were spent listening to earsplitting cries, I realize how bad it really was. I remember one particular episode where Elisa was holding him. She asked "why, Sam?" over and over. I couldn't agree with the question more. Why indeed? It was one thing to be exhausted. It was another to be worried about a fistula and persistent pulmonary hypertension. But to just hear and feel him cry, it was almost too much to bear. Interestingly enough, it wasn't the crying that scared me most. It was the clawing. His razor sharp fingernails would dig into my face, chest, or neck. It told me that Sam was in pain. I feared we were talking about pain unrelated to a simple cold. I worried about his heart. We headed to Dr. Pete's Friday afternoon, hopeful that he would find something cold related that could be treated with medicine. Yes, I'm not afraid to admit that I was secretly hoping for an ear infection. Doesn't that make me a great father. Fingers crossed for an ear infection for my little Sam. I guess I was just wanting an explanation that medicine could fix. We were reaching the end of our tethers. Unfortunately (or fortunately), Sam's ears were clean. His lungs sounded clear. He was just sick and would take a few days to get over it. Dr. Pete estimated that he had caught another bug (similar to Miles) and that he was on Day 3. He said one more day and we'd start coming back down off the mountain. I could only hope. So we left Dr. Pete's, now with the goal of restarting the Zantac (perhaps reflux was causing his arching?) and crossing our fingers that improvement was around the corner.
Sunday, November 24, 2013
When I woke up on Sunday morning, I was so bleary eyed that the room looked blurry. 5 episodes on Friday night. 5 more episodes on Saturday night. Countless crying episodes throughout Saturday. On average, we were dealing with about 3 hours of inconsolable crying. The Zantac seemed to make no impact (well, there was perhaps a slight improvement in his arching, but were we making it up?), and Dr. Pete's suggestion of consistent Tylenol hadn't changed the equation either. We were supposed to be seeing improvement. Instead, we kept seeing the same episodes, over and over.
I wish I could say that this blog would detail a couple more bad days of Sam and his crying. But I wasn't at the end of my rope yet. That began today. As I was making breakfast for the family, I couldn't help but notice that I had some chills. I chalked it up to a cold house. As they ate their pancakes, I had no desire to eat. Perhaps I was just exhausted. But deep down, I knew the signs weren't good. Worst of all, I didn't want to stand. When I was holding Sam, I wanted to be sitting. When I was sitting, I wanted to lay down. After a long morning, I asked Elisa if I could go shower. I stayed in his scalding hot water for a half hour, trying to get rid of the chills. I laid around as best I could, but I still had to help around the house and Sam was still dealing with his tantrums. By the evening, we were supposed to head to Elisa's parents and I remember barely being able to stomach the drive out. It didn't help that Sam had consistently had new crying fits whenever he was in his carseat. 25 minutes driving to Elisa's parents while Sam was screaming in the backseat and Lukas and Miles were singing High School Musical songs to try to cover up the crying. My head was pounding.
I was, however, a bit hopeful that my stomach was settling. Elisa's Mom had made soup and when everyone started eating, my stomach seemed to feel up for a little. I ended up getting through a bowl and felt pretty okay. It was that wonderfully disgusting feeling where you're sweaty, sick, but your energy is starting to return. On the way home, I had visions of a good night's sleep and a better morning.
Monday, November 25, 2013
Thanksgiving week, however, didn't start out how I was hoping. Elisa got up twice and I got up twice, as Sam had four more instances of inconsolable crying. I actually had to sit down on the edge of the bed during one episode because my stomach just hurt. Elisa got up to shower in the morning, and I followed soon behind. Where the shower had been my release the day before (as I fought the chills), it seemed to heighten my nausea with each passing moment. Just 3 minutes in, I turned off the water and dried off. I laid down, telling Elisa that I just needed a moment. I wouldn't leave my spot on the bed (besides runs to the restroom and one moment I'll describe below) for 7 hours. The nausea was overwhelming. I had no energy. I was exhausted, but couldn't sleep. I couldn't remember being more miserable. My Mom had come over to watch the kids, as I was supposed to be at work and Elisa had headed into the office. I just heard Sam cry through two episodes and couldn't even lift my head. To make matters worse, I got a text from Elisa in mid afternoon. She wasn't feeling well and was coming home.
It wasn't until after 6pm that I pulled myself out of bed, still feeling worthless but guilty that Elisa, not feeling well herself, was fending for all three kids (with Sam's requisite crying episodes in tow). I came down and helped her feed him some medicine, and got him calmed while I lay on the couch. Knowing that I couldn't continue to let Elisa be a single parent, I decided to try something that had worked a bit on Sunday. When my stomach was upset, Elisa had suggested I try an essential oil called "Digest Zen". It tasted like black licorice, but it seemed to settle the tummy. I needed to help out, so I got the Digest Zen ready and prepared myself for the taste. It took one sniff, and I was running to the upstairs bathroom.
Like Miles and Lukas before, it was my turn to lose my lunch. Having eaten nothing for over a day, I simple dry heaved into the toilet before I lost the small amount of acid in my stomach. Dry heaving, by the way, is the worst. You are throwing up, but without any of the projectile accomplishment. I thought this was my low point. You might be expecting that this would be the moment where I wanted it all to go away. But that was about 30 minutes in the future. And Miles was the willing participant in really pushing me over the edge.
Part of the experience, as I mentioned before, was diarrhea. Just two days before, Miles was clearly still battling it but even that had started to settle. Earlier in the day on Monday, I mentioned my one reason for getting out of bed. At midday, Miles thought he was farting, but had pooped his pants. Sam was screaming for my Mom, so I got him changed. 30 minutes after my vomit episode, Miles again thought he was farting. He pooped his pants. Sam was screaming (with Elisa this time), so I was on duty. I took him up to the bathroom of my throw up incident and took his pants off. Like a launch to the space shuttle, the moment...the worst moment of the experience thus far (well, beyond our first Dr. Doom special) was counting down. Off came Miles' socks. T-minus 5. Off came the pants. T-minus 4. I saw that he had clearly pooped his pants. T-minus 3. I started pulling his pants down. T-minus 2. Miles decided it was time to sit down. T-minus 1. On my arm. Blast off.
Like spreading peanut butter on a piece of bread, Miles poop filled bottom ran down my waiting arm. At that very moment, I was ready to be done. Sam was screaming (with Elisa crying in the background, unable to help me). Miles was crying, clearly embarassed. My stomach was aching from the vomit episode. I had a headache, chills, and my energy level was around 1%. And I wanted it to be done. I couldn't do this. Too much at once. It felt like a landslide of rocks were crushing my soul. Sam's birth, NICU, CICU, oxygen, Sildenafil, MRIs, colds, stomach flu, and crying hit me in the face. My sickness was physically debilitating me. And I had poop spread down my arm.
If you're laughing at the poop, we laugh about it now too. Only Miles would think it a good idea to plop down while I was trying to change him. I still am unsure how I got cleaned up without starting to vomit again (stomach of steel, I tell ya!). And in a year, I'll excitedly share how Miles used me as human toilet paper. But when someone ever says they've had enough, ask them if they've ever been human toilet paper. If they say no, lovingly tell them that rock bottom is still somewhere below.
Up until Thanksgiving, 2013
The next two days, thankfully, started us back up the slope, even if Elisa was starting to get more sick as we went along. I spent Tuesday working from my bed (but I was working!). Elisa worked some and got annoyed by my constant pushing to get some rest. Sam's crying episodes were still continuing, but I had discovered that I could rock him on his side and his episodes didn't seem to last quite as long.
On Wednesday, I tried to get to work and was successful for the morning before Elisa threw in the towel and asked me to come help with a crying Sam. She finally started getting rest and I enjoyed working from home with a kid that only had one freak out. I didn't want to get my hopes up that perhaps even Sam was coming out of this. We headed into Thursday, Thanksgiving, with my stomach just starting to return to semi-normal (Elisa wasn't out of the woods yet). And Sam gave us a gift. A very special gift.
Sam didn't have a crying episode Wednesday night into Thanksgiving. He had one close encounter, but my rocking approach had prevented it from escalating. We got more sleep than we had in three weeks. And when I pulled him out of the bassinet and asked him if he was a happy boy, I got a smile that warmed my heart. I hadn't wanted to mention it, but throughout the last couple weeks, Sam's smile had disappeared. I worried that it was a greater sign of developmental delay due to his fistula. But Sam found his smile on Thanksgiving morning. And he hasn't let go of it since.
Through Monday, December 2, 2013
If the peanut butter poop episode was the low point, the improvement in our lives over the next four days was a sight to behold. We now figure that while the family was battling the stomach flu, so was Sam. Because as his cold symptoms faded, and his poop went back to a decent (well, not atrocious) smell, Super Sam returned to us. 4 straight nights without a crying episode. 2 nights where he didn't cry when he woke up to eat - just fussed a bit. Smiles whenever you can handle them. Wide, gummy smiles that clearly says "I'm feeling better, Mom & Dad!".
Elisa and I finally got better, and any semblance of stomach flu was clearly out of Miles and Lukas. Thanksgiving was a bust (I'm going to make a re-do this weekend since Elisa barely ate and I was picking at my food a lot, hoping that my stomach could handle it). And we geared up for Sam's next milestone - our December appointment with Dr. Doom. What treasures would await?
Human beings are amazing creatures. You often hear about a person being able to lift a car off of someone due to the adrenalin rush, or being able to physically withstand pain that would kill someone in traditional circumstances. What you don't see on a 48 Hours is how someone can survive the emotional romper room that nearly kills your soul, living to blog about it. You don't hear about how someone could somehow survive peanut butter poop spread and live to tell the tale.
But as I blog about it, I realize that we, as human beings, can be put through so much and can come out on the other side. No, we're not nearly through with Sam's journey but I hit my second true wall and I realized that as much as I want it to be over, it won't be. As much as I want to crawl into a hole and make it go away, it won't. And somehow, I'll be okay. I have to be. For everyone involved, yes. But for me most.
Are you listening, Brad? Because I'm writing to you...hoping you'll hear me. You can do this.
Tomorrow, we revisit Dr. Doom, hear him talk about boiling water, and I give you "the best of" his doom like drum roll in bulleted form.
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