I can't begin to express how wonderful it is to say that I've gone three days without blogging and there is absolutely no rushed hospital admittance to blame. Things have settled down quite a bit, and I'm happy to report that I completed my first (and full) week of work, Elisa survived taking care of three kids at home, and Sam had no major relapse. Okay, fine. I know we didn't go to the Neuro team or Cardiologist this week, but I can be happy with small, measured progress right? Sam's still breathing quicker than normal. He still is on oxygen. I haven't forgotten that he has a major fistula in his brain that is going to require surgery/embolization. But we have traversed 7 days of home life. And I couldn't be more grateful.
That's not to say that things haven't been happening. On the contrary, Sam did finally express his true feelings about that darn multivitamin, Dr. Pete saved the day again, and Dr. Doom made a return visit to my cell phone. Oh, and we got our first medical bill...is it bad that my first reaction was to slam the counter and say "big bucks, big bucks, no whammies!"?
But let's start with Sam and his continued progress. Beyond the visit to Dr. Pete on Tuesday, we don't have a lot to measure against. All we know is this - Sam continues to be on 1/4 liter of oxygen, and we can polish a large tank of that off in just about 8 days. We place the pulse oximeter on his foot throughout the night, and have found that his oxygen saturations generally stay between 95-100%, which is normal. Yes, I know it's the oxygen. But we aren't getting beeping alarms like we did when Sam was at home on the 1/16 liter. It gives me hope that if we ever get good news at the Cardiologist (that Sam is improving rather than staying the course), maybe we can start to responsibly fiddle with his oxygen. That's not to say we haven't adjusted. I think Elisa and I are getting very good at trekking around the house with the 50 foot oxygen cord. We have also "almost" remembered to connect to the backpack on the first time, without forgetting to turn it on, string the cord through the backpack, or turn off the main tank at home.
Sam did finally speak to us, albeit non-verbally. You see, when we were at St. Mark's, Sam was prescribed a multivitamin with iron. Remember how I talked about how kid's medicines were just nastiness covered with bubble gum flavor? Well, apparently they don't extend this common courtesy to infant multivitamins. The smell is enough to make me reconsider the value of Flinstone vitamins. Get the multivitamin on anything and you may as well just throw it away. The smell doesn't leave. And woe to the person that gets the blast of a Sam burp after the stuff. You struggle to stay on your feet. Whoa. Sam clearly agreed. Whenever he would be forced (and it was once daily) to have the multivitamin, he'd made those faces. He clearly hated it. But the kid stomached it. He put up with it. And I speak about this in the past tense. Because yesterday, Sam had enough. And I realized that I've still got the gift of catch.
We were a bit late yesterday on giving him the meds, so it was just after dinner when Elisa started to torment the child with the foul smelling nasty. Sam's face contorted. He arched his back. He pushed away. He ran from the house. Okay, maybe not but he was thinking about it. And then, I saw the look. It's the look only a father resigned to vomit duty can understand. I grabbed a burp cloth, and did my best baseball catcher routine. I was just in time. Sam brought forth the yellow goo of hell from his stomach. I'm almost positive that he got every ounce of multivitamin out of his stomach. I was amazed to see just how much he could fit in his stomach at once, but I was also proud. Not a drop on the floor. Or the table. Yep, I still had it. Granted, it is nothing as exciting as Lukas took me through. My first experience with him involved vomiting onto my bare chest all manner of spaghetti (try getting that out of the carpet). The second was more memorable.
When our family was just three, Elisa, Lukas, and I had pulled up to Costa Vida for dinner one evening. Lukas had seemed fine, and never experienced any manner of sickness in the car before. So I wasn't really worried when I heard him cough (he was situated right behind the passenger seat, and Elisa was driving). One cough. Two coughs. Wet. Well, I didn't know that it was wet. I just felt something hit the back of my head. Did he throw something? Kick my head? Maybe I had an overactive imagination? Oh, no. All I had to do was feel the back of my head. Warm awfulness. Lukas projectiled right on Daddy's head. As I think back, I'm suddenly grateful that Sam gave me the look and the courtesy to catch it in the burp cloth. We'll have to wait until Sam's older before he starts his creative vomit stage. For now, I'll take this.
Anyway, I placed a call to Dr. Pete today. I was afraid that Sam was finally in open rebellion about the horrible tasting vitamin, and was confused anyway because Lukas and Miles had never been prescribed a multivitamin. I called and spoke to the nurse. I told her about neon yellow nastiness. She put me on hold, came back not 2 minutes later, and told me that Sam could stop the carnage. The multivitamin could be retired. Thank God. Because I was starting to eye the multivitamin and our daily attempts to feed it to Sam as more dangerous than his hypertension or fistula. We dreaded it. He dreaded it. We retired it. A happy family, once again.
I even got a call from Dr. Doom yesterday. I was expecting the call - I just didn't expect it to take the better part of the week. When we had called the Cardio fellow on Saturday night about Sam's 3 hours of crabby (and possible acid reflux), she had mentioned that she would be passing a note onto Dr. Day. I only feared that he'd want to back off the Sildenafil, and it's my favorite drug right now (right, Elisa? Wink, wink). I was pleased to say that the last week hadn't changed his bedside manner. Just as weird as ever. And a little overreactive. He was ready to prescribe Zantac for the acide reflux before I informed him that we had only that one isolated incident. He backed away and told me to keep him posted. While I had him on the phone, I did ask ask about the administration of the Sildenafil. Because when we were at the hospital, they were giving it to him 4 times a day QID - it didn't follow a rigid every 6 hours kind of schedule. Sam got the meds at 8:00am, 12:00pm, 4:00pm, and 8:00pm. Yet we were sent home on a "every 8 hours" prescription. So we had routinely given it to him at 6:00am, 2:00pm, and 10:00pm. What this meant, however, was that we were waking Sam up as much as 3 times a day to stuff this goop down his throat. And giving it to a sleeping kid is just begging for a gagging episode. So I asked Dr. Doom - and he told me that our OCD about the every 8 hours (silly us, following the instructions!) was unnecessary. He just cared that Sam had at least 6 hours between servings. Suddenly, I was celebrating the fact that I wouldn't have to put him through the 10:00pm and 6:00am feedings, but we could just feed him at his last feeding of the day and his first of the morning. I was so excited - maybe this would mean more sleep! And then Sam stayed awake until 10:00pm and was awake at 6:00am. Okay, then. Something tells me Sam knows a bit more about what's going on than we think. He's already toying with us and we're helpless to resist.
You'd think that would be enough for our first week of home life, right? Almost. We had to get a reminder of just how much Sam is worth. Okay, not really but it was a stark reminder of what it costs to have a sick baby. We got our first couple bills from St. Mark's. Sam was in NICU for 17 days. He was on oxygen, antibiotics, IV fluids, and Nitrous Oxide. Oh, and that multivitamin. Would you believe that his medications came to an astounding $52,000? Me neither, until I saw it. All told, Sam's St. Mark's facility bill (oh, don't worry - the physician bills are to come!) came to a mind blowing $131,000. Wrap your head around that. We still don't know what numbers will be coming from Primary Children's. I shudder to think what the cost of brain surgery might be. But it just goes to show, that when Elisa and I invest, we go for the luxury model. We begrudgingly had to upgrade our car when we knew Sam was on the way, and we gave in to the bane of our existence (in terms of cars). We got a.....sorry, it's almost too painful to say....a minivan. But when we got one, we weren't going to be cheap. We had to have something to look forward to when we were driving the minivan around. So we got the luxury model. It has every upgrade you can think of. Trust me, I've experienced them. This car runs the wipers for you. It beeps when you're going to hit something, or when someone walks behind your car. You don't need to put in an actual key. Heated seats. DVD player. Everything. Hey, we did it right.
I guess you could say that we unknowingly bought the luxury model of baby. This isn't the base model. This is the one that comes with all the bells and whistles. 50 foot oxygen cords. Brain fistulas. and an opening volley of $131,000 in medical charges. Hey, what can I say? I'm the luxury kind of guy. I won't got to Disneyland without staying in a Disney hotel. We have chair back seats at University of Utah football games. I rebel by shopping at an actual grocery store as opposed to Walmart.
And our latest luxury purchase is worth every penny. Because don't we deserve the best? We certainly got it. In spades.
Brad
1 comment:
Brad,
Please know that Angels Hands can help with bills!! We can get you in contact with the right people, give us a call! :)
Lacy
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