Monday, December 31, 2007

Bringer of Death

One morning, I was running a few hours late on a daily chore I call "feeding the barn." We have a cat, a rabbit and some fish. It was late morning by the time I got around to feeding the fish. My daughter noticed me grab the fish food from an upper bookshelf, pinch a few flakes into the tank and I went about feeding the other animals.

After the others had been fed, I walked back into the front room where my aquarium sits and I noticed my daughter standing on her little foot stool she uses at bathroom sinks to reach the faucet for washing, brushing, etc. Nothing looked out of the ordinary, just her standing on the stool next to the fish tank, nothing in her hands, her looking at me. No particular expression.

It was at this moment, I had a thought. She's two going on three and she has started mimicking things we do, repeating certain phrases too. I had a thought that since she just saw me feed the fish a few minutes before, she might like to try that too. I checked the fish food canister, it was still on the bookshelf where I left it, lid on and everything. Normally out of reach for a three foot little girl, but I did notice that thanks to her plastic height supplement, she was now tall enough to reach it. So I checked the tank.

Time stopped.

What I saw, or rather what I didn't see in that aquarium was unbelievable. There was so much fish food floating in my 30 gallon tank, I could no longer see the fish, the plants, the miniature roman ruins, fake rocks; nothing but floating fish food occupying every cubic inch of my tank.

I grabbed the fish food canister that didn't look out of place and I ripped off the lid. It was completely empty. I had just bought the food a few weeks ago, it was pretty full last time I checked and now I was staring at the bottom of an emptied yellow canister, awed by what my two year old daughter had accomplished.

I leaped to action. Emergency extraction from the tank into a breathable water to try and save my fish. The hard part was that I couldn't find them, the tank was so cluttered. I shoveled out as much fish food as I could, like ski patrol digging for survivors in an avalanche to get a location on the life inside. Eventually I spotted them.

They didn't want to go willingly. They hadn't been in the net since I cleaned the tank over a year ago but after a lot of chasing around, I was able to get them out and into a miniature tank I had ready.

They were finally out and in clear water while I worked on cleaning the tank.

The next day, the catfish died. Unfortunate, but I happen to know this particular breed does not deal with excitement very well. I figured the transference to the new environment was too much for it. So I flushed him and hoped for the best on his roommates.

A couple of days went by and the Black Skirt was swimming on his side. That's not good. I knew he didn't have much time left. The next day, he was still on his side but on the bottom of the temporary tank, no gill movement. Flushed. Also not a good sign as generally Black Skirts are very hearty fish. Nothing kills them unless they're on dry land.

Over the next couple of days, the remaining fish begin to swim crippled as well and eventually they all died.

The number one killer of fish is over feeding. All that excess food they had temporary access too and the excitement of the transference must have been too hard on them. The last three fish died in the same day so I had a 3-way toilet funeral for them. The executioner of these fish was standing beside me in the bathroom during my send off. She thought it was neat to see the fish corpses floating around in the toilet bowl. When I pulled the lever to send them to the great beyond, she said, "Bye fish!"

Monday, December 17, 2007

Handicapped

You never realize how much you use the back of your index finger until you remove a layer of the skin from it.

Thursday, December 13, 2007

Hirschsprung

My second child is finally here but not without some excitement. And I'm not even talking about the excitement of the delivery which you can read about in the last post.

He has a condition called Hirschsprung's Disease that makes a portion of his colon (the tail end, pun intended) not function. Which means he can't pass waste properly. If nothing's coming out, nothing can go in (no room) which was the first symptom we noticed. He wasn't holding anything down when we fed him.

On day two of my son's new life, the doctors sent him to Riley Children Hospital for diagnosis, which conveniently sat next door to the hospital he was born in. He was checked into the NICU for observation and hopefully a diagnosis, hooked up to IV's (one coming out of his head) and a suction tube down his throat to remove whatever he hasn't already vomited.

Our hearts were broken.

Before we knew he had Hirschsprung's, most cases of newborns vomiting green fluid indicates a blockage somewhere in the digestion system, usually somewhere between the stomach and end. The green is the bile in the stomach used in digestion. Since he wasn't eating anything, all that was present in the stomach was this stuff and since there's no way else out of the body, the stomach sends it back up. A blockage in the intestines is much more common than Hirschsprung but it is also more of an emergency to deal with. It can be a twist in the intestines somewhere or an actual obstruction, both of which require immediate surgery to correct.

In Hirschsprung's, the temporary solution is to install an ostomy bag while the infant grows a bit stronger and bigger, then brought back at a convenient time (convenient for the patient) to correct the deficiency with surgery. It might be several months (up to nine) after diagnosis before the big surgery is done to correct it. There's no real hurry.

The surgeons discovered he had Hirschsprung's by performing a test done with a biopsy of his colon, sent to a lab and tested for a genetic defect where the nerves of the colon that function to push the waste out don't develop during gestation. The gene responsible for this is also a gene responsible for certain types of pheos, which is a condition his mother has. But it's the wrong kind of pheo. My wife's genetic defeciency is called SDHB. The Hirschsprung's gene creates pheos of MEN type. The surgeon wanted to make this connection, but the odds of a mother and son having pheos of differing types is more astronomical then any of the lottery systems in the world. It's rare enough to have a pheo. For 2 people in the same immediate family to have unrelated (non-inherited) pheos is just virtually impossible.

The one funny thing about this whole ordeal is that this hospital deals mostly with premature babies. After hauling our 10 pound full-term baby in there, he was Goliath among many David's. The wonderful nursing staff there had to readjust their expectation when picking up their newest patient and maybe their stance a little to steady themselves. Getting themselves checked for hernias after their shift was probably something they considered, I imagine.

My son was in the NICU from Tuesday December 4th until early Saturday December 8th, after which he was upgraded to the Infant Unit part of the hospital. Besides not being able to poop, the boy was too healthy to remain in NICU even though he still hadn't eaten anything since being born. During this time, Mrs. Lock was discharged from the hospital, deemed fit to return to society after her C-section. That was on Thursday the 6th.

The two hospitals are actually connected by an underground tunnel. While Mrs. Lock was in her hospital, we'd run over to visit our son in the neighboring hospital. I say run, it was actually wheel since Mrs. Lock was still recovering from C-section surgery. Imagine navigating old, smelly, creepy, dank tunnels with a patient in the wheelchair. We did some late night crossings to pay him visits. I don't know how far it was, felt like a mile of walking (pushing), but realistically it was probably closer to a quarter of a mile. Since we've been discharged though, the visits would have to be by car now.

It occurred to me at this point that for most of my son's life, all one week of it, he knows nothing other than IV's and feeding tubes and beeps and alarms and strange people dressed in blue catering to his every need. For most of his life so far, he's been in a sterile environment, laid up in a steel cage they call a bed, with little or not contact with his parents. They say bonding with your newborn, that physical close contact has an effect on a child's development, and yet we can only hold him for a few minutes a day. His first impression of life must be a strange one. Any situation for a newborn, sick or healthy is a strange one after incubating in a dark womb for nine months. This is what his cells are going to remember.

On Tuesday the 11th, my son had minor surgery (is any surgery minor?) to have a colostomy bag installed to remove from his body what his body couldn't. We were fearful and dejected to consent to this but he was a week old and still had nothing to eat. We knew it wasn't a good thing and we were starting to feel desperate.

After the ostomy procedure, they wanted to give our son about 12 hours for his system to flush out any fluid which was now going into this clear plastic pouch attached on a hole (hole = stoma) on his gut before they tried to feed him. We went home for the night, hoping for the best. We knew they'd be feeding him at some point on the midnight shift. We went to bed that night hoping for good news in the morning.

Wednesday morning came. We were anxious. My wife handed me the phone, asked me to call to get the news because she was too nervous about what they might say. I don't remember if I had any expectations. I think I was thinking that whatever the result, we would deal with it... somehow. So I called and listened to the nurse explain to me what happened. I'm sure my wife wanted to listen too but she didn't. She waited for a sign from me.

We got the news. For the first time in his life, our son ate.

I gave my wife the nod, whispered "He kept it down." Much relief. Actually, we were giddy to hear the news. Clapping in the bed. Eyes swelling up. We couldn't wait to go in to see him.

We got to the hospital and we continued to feed him every few hours with little to no problems. They even decided to give him some breast milk his mother had been pumping and refrigerating since he was born. We were happy to see he was keeping that down too.

He was doing so well after the surgery, that on Thursday the 13th, they decided to discharge him and send our little boy home with us. We were surprised to be taking him home two days after the ostomy surgery but we were also happy to get out of there.

We got home. My mother was watching our daughter for us. I sent Mrs. Lock into the house ahead of me and I quietly brought Baby Lock in behind her. I set him on the floor (still in his car seat I should point out), out of view and I walked in behind my wife. We greeted my mom and our daughter as we have been doing every day for the past week and as expected, my mom asked, "So how's he doing?"

I said, "Well..." and then I disappeared back into the hallway where I had set him down, picked him up, brought him into plain view and said, "You can ask him yourself."

If we were surprised to be taking our boy home today, my mom must have been triple surprised to see him. She was ecstatic that her grandson was home for the first time and she flocked to him like a grandmother would. She asked a million questions about how we were able to bring him home so soon, all the while not taking her eyes off of him. Maybe she thought if she looked away, he would disappear.

After getting situated, everyone de-coated and sitting down, my mom called my dad to tell him the good news. It was welcome news for all of us.

So now our family is finally home. Me, Mrs. Lock, Daughter Lock, Newborn Son Lock. And we couldn't be happier. We just wait for the day when they can do the surgery to fix him for good. The prognosis for infants with Hirschsprung's is very encouraging too. He should lead a very normal life after it's all said and done and he won't remember a thing.

That's a good reason to write about it.


Monday, December 03, 2007

My Son Arrives

Today, my second child, my son, was born.

What a day. Mrs. Lock was scheduled for a c-section. When I first arrived this morning, the surgery staff informed me that I could not be present for the operation. This bit of news was like being stabbed. I was there for our daughter's c-section almost three years ago but I was going to miss my son's? Who was going to explain to him that I have pictures of his sister's birth but not his?

I decided to fight the decision.

First, I registered my complaint with the RN assigned to my wife. She said she would ask.

Next, we were paid a visit by the anesthesiologist (one of them anyway). After he went over his plan and asked for any questions, I brought up my plea with him. He said he did not see a problem with it and would check with his staff.

After him, the surgeon who would be performing the operation came to our room. I did not hesitate to let her know my desire but she said it wasn't up to her. Not up to the surgeon!? Clearly, a higher power didn't want me there.

I brought up my OR experience (I worked six months in the surgery department of a hospital to make money for school). I was told by the anesthesiologist that would help my case. I was told by the surgeon that didn't matter. She said that if there were to be an issue with the procedure, I interrupted her and said, "then I would leave." I don't think they expected this because they didn't seem to have a reply to it.

After everyone left, a surgical tech came to get my wife for surgery. I was told that if my presence was approved, they would come get me in about a half hour.

So I'm in my bunny suit that the OB gave me. If you've never seen one, it's a light cloth full body suit with a zipper in the front. It's called a bunny suit because it's completely white. It's like wearing a mosquito net. I'm dressed in it up to my neck with my head cover and cloth slippers that cover my shoes. I wait patiently in Mrs. Lock's room for them to come get me... if they come and get me.

Forty five minutes went by and I started to get worried. I turned my focus to wishing all was going well and that I would get to see my new son soon. A few minutes later, a nurse showed up and offered to escort me to the OR. I jumped at the offer.

We get down to the OR, downstairs on a lower level (I don't think we walked fast enough) and the woman at the front desk says I can't come in with that on. They don't like my bunny suit! I looked at her. The nurse escorting me looks at her. She tells me that I'm going to need OR scrubs instead.

"Well, let's make it quick then," I said.

She reaches into the desk drawer and hands me a set of keys and directs me to the men's locker room upstairs above the OR.

This is where my apprehension starts to escalate. They're waiting for me in the OR, and now I have to make a change of wardrobe.

I fly up the steps to the men's locker room. It's locked. The set of keys that were handed to me has 3 key cards on it. I try all 3, none of them work. I scanned them too fast. I went through them again a little slower, and I got one of them to work. I'm in.

My OR experience comes in handy here. Many OR changing rooms are alike so I'm feeling confident I'll find my way around this one. At the OR I worked at, the scrubs sat on a shelf, categorized by size. You just pulled what you wanted off the shelf, stuff your street clothes in a locker and off you go. I started looking for this shelf as soon as I stepped inside the locker room. I went up and down the aisles a couple of times. No shelf! Eventually I noticed this large metal box sitting in the middle of the room. It's about as tall as I am (6 feet), has an LCD screen on it and a keypad. It also has some lettering on it that I am now forgetting. But it had the word scrubs in it. Scrubs o Matic or something slogan like. It's a giant scrubs vending machine! No shelf, indeed! I don't know how to work this? You need a degree to operate this thing.

I start pressing buttons randomly, choosing options on the screen that I hope will net me my prize. Why not just install a grappling hook, a joystick and let me fish the scrubs out for a quarter?

It asks for a keycard. I start scanning in the three on my keychain. It beeps at me a lot. I'm getting lots of errors since I am an amateur scrubs vending machine operator. There's nothing else I can do but keep scanning my key cards and randomly push buttons. Eventually I get something to work. I hear a click. A door down near my legs swings open and crammed inside a small metal shelf is a scrubs suit.

I yank it out of there, slam the door shut, rip off my bunny suit and I do mean rip, take my street clothes off as fast as they'll drop and try on my new blue uniform.

What I neglected to notice while I was randomly hitting buttons to have my scrubs dispensed was the size. I don't know if this is the default setting or the last setting used, but apparently, my new suit, according to the tag, is X Small. It wouldn't fit a pixie! And not just small mind you, EXTRA small. I'm over 6 foot, 200 lbs plus.

Tiny scrubbles. I'm in a huge hurry so with a deep breath, I yank and pull on the pants that were made for an Olympic gymnast. With no room at the crotch area, I was going to sound like one too.

Result? Not even close. They don't even make it past my thighs, so the hips were out of the question. Since I'm pretty sure washcloth-sized shirts and pants dropped to your thighs isn't accepted dress code in hospital operating rooms, I have to go back and figure out how to get something closer to my size.

I spend a couple more frantic minutes at the machine trying to figure it out. In my off hours when I'm not waiting on my children to be delivered, I maintain multi-billion dollar computer infrastructures and networks for a federal administration. Very technical stuff that doesn't scare me. Machines are fun. As for this contraption that needs to dress me, surely I can figure this out. I HAVE to figure this out.

I can't figure this out.

During my fiddling, another guy walked in the locker room getting ready to leave for the day. I swallowed my pride and asked for help. I approach the guy in my underwear (remember I couldn't put those pants on and I wasn't about to waste precious seconds getting my own jeans back on) asking him for help. He politely escorts me back to the scrubs machine to show me how it's operated. He gets me to scan my card in and shows me where I can pick my size. I select large and thank him for his help. My new suit opens in a different door. I rip that out and with much success and sweat, finally don them.

I'd say 15 minutes has passed from the time I've left the room until now. It has felt like hours.

I cram my street clothes and the tiny dancer scrubs into some random unlocked locker. Steal my clothes, I don't care. I rush downstairs to get to my wife.

I return the keys to the OR front desk and ask them where OR 4 is located. She tells me down the hall, make a right.

That's where I go, down the hall, made a right. I start looking at the room numbers: OR 10, OR 11, OR 16. I'm going the wrong way! I am getting frantic now. Maybe I'll just lie in a fetal position on the floor until someone finds me. That sounded pretty good about then.

I turned around and started heading back. I stopped a nurse in the hallway to ask where OR 4. By this point, I'm thinking they've already delivered, I've missed everything, she's probably out of surgery, through recovery and back in her hospital room. Forget that. She's probably already packed and gone home with the baby. They're at home watching TV wondering where I'm at. All of this was for nothing. The nurse gladly escorts me to OR 4.

As we approach the room, she asks me to wait outside for a minute to find out if I am allowed to enter. She returns after a few seconds to tell me I'm too early and they will let me in shortly. Early?! I just spent a fortnight trying to get down here! Fortunately though, I didn't miss anything.

After a few minutes, a nurse comes out and lets me into the room. There are no less than 16 people in this room now. It could've been more like 20 but it's hard to count that many people moving around in one room. We are delivering at a med school hospital, so I imagine some are students. Some are on the c-section team, the anesthesiologists (plural), the nursery staff, some are here to intervene if Mrs. Lock's tumors start acting up. Some are just here to witness the surgery of a patient with pheochromocytoma tumors, being as rare as it is.

They gave me a stool and let me sit next to my wife at the head of the operating table. They've got a tent of sterile paper covering her upper body. Patients who are awake during surgery aren't allowed to see what's going on down there. She acknowledged me, seemed a bit pale and nervous. Given the amount of drugs in her system, this could just be a physical reaction. The room was packed. I was crammed in between the nursery team, the anesthesiologist team and my wife. It was a love triangle.

I managed to snake my hand into the paper tent and close it around hers. She had the pulse meter clipped to that hand so it was an awkward union but just the touch of the flesh was enough for me to say 'I'm here with you.'

The anesthesiologists were chatting it up with me. They asked me what hospital I worked at, what I did there. We were just shooting the breeze while the surgery team excavated my wife. And excavate is a good term. They even have miner helmets with a little light on top.

Spelunking anyone?

I found out later from my wife, the person who did not want me in the OR during the procedure was standing right behind me with the anesthesiologists. She was in charge of the room. My wife knows this because as they were wheeling her to the OR, she asked her if I could attend the procedure. The woman sighed, got very serious and told her that she guessed I could attend but that she was not going to talk to me and at any time during the procedure, she could eject me from the room and also added that she would not hesitate to call security to enforce her will.

Ok lady!

It's hard to believe that this is the same woman who was talking my ear off the whole time. She was very friendly, very inquisitive about my background. Very forthcoming about medical knowledge. She was talking so much, I wanted to tell her to pipe down so I could visit with my wife and watch the procedure. Maybe I'm just that charming. Or maybe she's bipolar. I didn't care. I got what I wanted.

I heard someone say here we go. That was my cue to stand up and start filming. I didn't ask anyone if I could film. I wasn't even allowed to be here. I was just going to start shooting and if someone objected, first I'd stall as long as I could but eventually I'd oblige. Better to ask for forgiveness than permission.

No one objected. I got the whole thing on tape (old man term for SD card). They pulled my son from his mother, yelled out a warning to the nursery crew that a giant was being born and quickly put him in the warmer bed to be cleaned up and weighed. I'm still filming at this point and did so until they weighed him. It was several minutes at least, then I turned off the camera to soak in what just happened. He was born at 11:20am (give or take 3 minutes) on 12/3/07.

I smelled something caustic. They've turned on the wood burner tool to begin the procedure of fixing my wife. I kept my attention on my new son.

The way the warmer bed was positioned, my wife couldn't get a good look at him. The bed sat on her left and down a little so that the paper draped over her blocked the view, that paper and the 20 people in the room. I took some pictures with the camera, and showed them to her on the digital screen.

After they got him weighed (10 pounds) and cleaned up, they asked me if I wanted to hold him. I checked with my wife for the okay, which she gave, and enthusiastically summoned the nurse to put him in my arms. We didn't get to do this with our daughter. I was holding my son minutes after he was born. With him in my arms, I was able to show him to his mother, up close, face to face. Tears of joy start flowing. She's happy to see him alive and well.

I return our son to the nursery team. They need to run him up to special care nursery to be checked out. After a few minutes, my wife starts to complain about something. I don't remember what she said, she was getting too cold or she felt really really bad. The anesthesiologists check the displays and acknowledged something was going on. Someone else was ripping open IV bags and getting them hung as quickly as they could. The RN who tended to my wife in her hospital room who was also in the OR, told me it was time to go.

I understood and went willingly with a bit of nervousness. I had complete faith in the doctors that were caring for my wife. I knew all would be well. I just wanted someone to tell me when.

I went back up to the room and by this time, all of the parents were there. They wanted to see the baby. I was under explicit orders from the Mom that no one was to hold the baby until she had the opportunity herself. I was going to enforce this rule with military command. But that didn't stop me from going to visit him in the nursery. I left the family behind in the room and spent some time with my son. I was still waiting word from my wife so I kind of had my thoughts split while I sat with my son who was passed out in the warmer bed in front of me. I talked to him, played with his tiny fingers a little. I was there for about 20 minutes, then decided to go back to the room and wait on my wife.

I don't remember how much time had passed. Probably an hour or so after I left her in the OR. They finally wheeled my wife back to her room. She was groggy from recovery but was in good spirits knowing she and her son came through the procedure successfully. We visited with all the parents in the room for some time and eventually they wheeled our new arrival into the room. Finally, mom got to see her son and hold him close. We all stood around watching as he was placed on her chest. My wife was very glad to see him and hold him.

That's it. The kid got passed around to everyone, lots of photos taken.

Little did we know at that time though, the hospital wasn't going to let us go so easily. Something was very wrong with our son.

Part II: Hirschsprung