Genetic Defects pt. 7 - Cook's (516 hits)
Category: NoneRating: 1.32 on 19 reviews (Rate this item) (V)
Submitted by SmalltownSally (View user info) at 2009-04-23 14:40:40 EDT
http://www.ubersite.com/m/121803 The Long and Winding Road
Exhausted, I pulled into the parking garage at Cook Children's Hospital in Ft. Worth. I fet like I'd been put through the wringer time and time again. The Starflight pilot that transported Emma was a mother too, so she understood when I started crying as they put my baby into the incubator to keep her warm for the flight. To me, it seemed far too much like a coffin, and it was too much for me. She barely fit, and the nurses had dressed her up in the pretty dress that my mother bought for her homecoming. The dress that would be far too small for her after all of this was done. They'd given me a piece of flannel with knots tied in the corners and told me to wear it close to my skin overnight, so that it would smell like me and help to comfort Emma when I wasn't there.I dutifully shoved it up the bottom of my shirt and wore it there, lumpy and uncomfortable, for the 3 hour drive to Ft. Worth.
I checked in with patient services and made sure they had all our information, and then stood in the hallway with my giant rolling suitcase. I had no idea where she was. This hospital was massively huge, more like a small village than a single building, and deserted at the hour of my arrival. A little old man walked by, smiling a big smile and must have noticed my face, because he stopped to help. He was a Welcome Volunteer on his way home for the night, and he knew exactly what to do. Such a small thing, looking Emma up in the computer and then walking me to her room. Giving me a warm, firm handshake, a pat on the back, and a kindly, crinkled smile. His name was Ken, and in the following 2 months that I'd spend at Cooks, I would never see him again. And while I'd thanked him profusely the whole time he was helping me, I never got the chance to tell him how far that small kindness had gone. How it had helped me hold it together just a little bit longer.
The Pediatric ICU at Cook Children's was nothing like the Neonatal ICU at Dell. It was one large, open floor. No rooms, no door, no privacy. Lights were always on, and you could hear every sound coming from every bed in the unit. All the barfs, all the screams, all the crying. The nurses talking trash about each other, the doctors, the parents. I had a cot pushed into a corner next to Emma's crib. I suffered sleepless nights and the stares of countless strangers walking by. I felt like my daughter was a sideshow freak at the circus. Feeling each long gaze like a smack in the face of my frazzled nerves, I tried pulling the curtains shut, but the nurses kept tugging them back open. This was hard enough - away from home, alone, seriously ill baby - and to make matters worse, Emma was not doing well.
Her breathing had become erratic and labored. The smallest movements bathed her in sweat. She wasn't getting the oxygen she needed, making her little feet slightly blue. I watched her every second, and held her in the rocking chair as often as I could. They were keeping her for observation for a week before deciding if she was well enough to proceed with her surgery, and every day was torture to me. She was such a trooper. She smiled at everyone who came near her, a skill she had only just mastered a few days before her transport. She was cooing softly, still getting the hang of using a voice that she hadn't even known she had until she was 6 weeks old. She was the only joy I had, and I soaked her up like sunshine.
I tried to put on a brave face, get to know the new doctors, but I failed more than once to be nice. They frustrated me. They wouldn't listen. Every day, I saw my brave little girl slip a little bit more, but they wouldn't listen when I told them what her previous careakers had done. At Dell, she'd been getting CPT treatments to keep her lungs clear, as well as various nebulizer treatments. Here, they decided she didn't need them. At Dell, the oxygen saturation had been a very healthy 92-95% on a 20/80 mix of oxygen to regular air. Here, she was at 80% oxygen with sats barely rising above 85.
I knew every setting, every reaction, every nuance of my child. I'd studied her every second I was with her, never knowing if I'd get to see her do it again, and I knew what every sound meant. So in tune were we that it became a nightly game for her new nurse Travis to test me at her bathtime. We'd pull off all her leads and give her a washdown (which she hated), and then, before we reconnected all of her electronics, I'd look at her gums and her tongue and tell him what her saturation level was. I always guessed within 2%. But none of that mattered. I wasn't a nurse or a doctor, so they didn't care what I knew. So, when I held her, I gave her CPT on my own. I couldn't give her a nebulizer, but I could give her those little thumps. One morning at about 3am, I woke to see them bagging her, something that she hadn't needed since she was still on her ventilator. I tried again to tell the doctors that she needed CPT, she needed her nebulizer, needed albuterol. That they were killing her. They didn't listen. They barely spoke to me.
Out of sheer desperation, I called Dell and asked to talk to Emma's night nurse, but their hands were tied, because she was no longer their patient. They couldn't help. Nobody could help. I was alone, and so I did the only thing I could think of to do. I waited until the inevitable stream of looky-loos walked staring past my daughter's bed, and I started asking the doctor of the day when they were going to stop killing her and start listening to me. And I asked very loudly. I took advantage of the lack of privacy and used my most intelligent speech. I rattled off the precise settings that I knew she should be at, the medications, doses, and times. I used every last bit of medical jargon that I had picked up over my long stay, and I made sure that everyone heard. I ended with the melodramatic but effective note of "Oh, and if we don't have a choice but to be in the middle of the high-traffic area while you kill my baby, can we at least keep her curtains closed so she can die without strangers gawking?" Childish, I know, but I was done being polite. It worked. They issued an order for CPT and Albuterol treatements every 8 hours. Her sats began to perk up, and suddenly the nurses were asking me questions about her care. Her curtains stayed shut as long as I was at her bedside.
Dr. Tam came the following Tuesday. He was a stern, cold Korean man, and I disliked him on the spot. But I also knew he was one of the highest-rated surgeons in the nation. That he had an incredible success rate, and that he was so meticulous in his surgical procedures that oftentimes a 6 hour surgery became a 10 hour surgery, because he had to do his absolute best. I didn't like him, but I knew he would do everything humanly possible to give my daughter the best chance she could have. Nobody could fix her as well as he could, so I stepped back and let him do his job. He scheduled Emma's surgery for December 12th, and told me with the flat matter-of-factness that was his bedside manner, that he felt very confident he could repair Emma's heart. The surgery would be 7 hours, but nurses prepped me to wait 10-11 hours. They knew Dr. Tam. They knew his MO. I called my parents to tell them the plan, and then I put my baby in my arms and held her. I had no idea when I would have another chance to see her smile, hear her tiny little voice, kiss her small, pudgy fingers, or even change a diaper. I gave her a pep talk and promised her I would buy her a pony if she could be strong, just a little bit longer. I emailed Shawn and his friend Jurgen and told them the plan. They'd been my emotional shelter so often in the last 6 weeks, the place I went when I just wanted to be normal again, and they were eager to know what was going on.
Morning came. I prayed that my parents would arrive in time to hug and kiss their granddaughter before she was drugged and intubated. The nurses came to prep Emma for surgery, but Dr. Tam was running late, as usual. Just in the nick of time, my parents made it to the hospital. Mother held her, Dad held her, and then we all walked with her to the surgery wing, anxious, silent, and not wanting to let her out of my sight. Who knew what condition she'd be in when they brought her back to me?
9 hours went by. The attending nurse called my phone every couple of hours with updates. Emma was stable, she was doing well. She'd had some irregular heartbeats, but not to worry... this was normal. Dr. Tam was being as meticulous as always, but he seemed in high spirits. Hang in there. We'll call back in a couple more hours.
We sat around and talked, told stories, played cards. I showed Mom and Dad around the hospital campus, and we went down to the cafeteria for some breakfast, then later for lunch. I felt like i was walking in a dream. 11 hours into our long haul, the OR nurse called and said they were attempting to take her off the bypass. This was the test... the real test. So far, so good, but it was all for nothing if her heart couldn't beat on its own. We all sat, tense and pale and silent. My mother prayed. My dad paced. I clutched my cell phone in a white-knuckle grip and stared at it, willing it to ring. The respiratory tech wheeled in a ventilator and began to set it up. When they ran the funtionality tests, my stomach lurched every time I heard the familiar beeps. To this day, when I'm watching House or ER and someone desats or goes into cardiac arrest, I feel the bile rise in my throat. I hope I get over it one day.
Then, without notice, they wheeled my daughter's bed around the corner. She'd come safely off bypass on the second try. For the first time, I saw a smile on Dr. Tam's face. It was exhausted and strained, but he told me that he'd been able to make the repair - to reduce the size of her heart by 20%. Astronomical in terms of her chances at recovery. To cut away the portion of her valve that was fused to the heart wall, and to thin and reshape the part of the valve that was lumpy and curled up on itself. Now all we could do was wait, watch, and hope that she bounced back from the surgery. That she didn't need the ECMO machine. That things, for once, went according to plan.
User Reviews
Submitted by Merlina (user info) at 2009-05-28 06:45:18 EDT (#)
Ranking: 2
*my* neices
Submitted by Merlina (user info) at 2009-05-28 06:38:27 EDT (#)
Ranking: 2
Submitted by sicosemen (user info) at 2009-04-24 09:49:22 EDT (#)
Ranking: -2
What a tart, below! It's not out of order. Are you on the same ubersite that laughs at rape, hassles little babies on public forums, and bashes people willing to post their picture as me? Clearly, you are a tool who doesn't get that this isn't the place to tell us about a failure baby and expect sympathy.
~~~~~~
There are no rules on this website - thats the whole point. Its for all issues and not everyone finds rape etc funny.
I'm personally not interested in babes (I love me neices now they're older!) but I wish people just didn't read stuff they didn't like than make frankly disgusting comments about babies dying.
I really wonder about the human race sometimes..
Submitted by Desz (user info) at 2009-04-27 22:59:41 EDT (#)
Ranking: 2
Captivating, but can't help thinking the last part will finish with a picture of Dr. House....
Submitted by JonnyX (user info) at 2009-04-27 02:13:28 EDT (#)
Ranking: 0
SHOULDA TAKEN THE KID TO PRINCETON-PLAINSBORO
Submitted by RoadSong (user info) at 2009-04-24 18:52:18 EDT (#)
Ranking: 2
"I was alone, and so I did the only thing I could think of to do. I waited until the inevitable stream of looky-loos walked staring past my daughter's bed, and I started asking the doctor of the day when they were going to stop killing her and start listening to me. And I asked very loudly. I took advantage of the lack of privacy and used my most intelligent speech. I rattled off the precise settings that I knew she should be at, the medications, doses, and times. I used every last bit of medical jargon that I had picked up over my long stay, and I made sure that everyone heard. I ended with the melodramatic but effective note of "Oh, and if we don't have a choice but to be in the middle of the high-traffic area while you kill my baby, can we at least keep her curtains closed so she can die without strangers gawking?" Childish, I know, but I was done being polite. It worked. They issued an order for CPT and Albuterol treatements every 8 hours. Her sats began to perk up, and suddenly the nurses were asking me questions about her care. Her curtains stayed shut as long as I was at her bedside.'
~~~~~~~~~~
Being assertive with hospital staff is an art. It can be a vital part of saving the lives of loved ones.You mastered the art.
Many blessings to you and yours.
Submitted by TheStitch (user info) at 2009-04-24 12:46:49 EDT (#)
Ranking: 2
I'm addicted to this series. While Uber is mostly brimming with heartless and disgusting (albeit funny) posts, it's kinda nice as a change to read something that truly makes you hope.
Submitted by BLITZKREIG_BOB (user info) at 2009-04-24 12:41:00 EDT (#)
Ranking: 2
No Comment
Submitted by sicosemen (user info) at 2009-04-24 09:49:22 EDT (#)
Ranking: -2
What a tart, below! It's not out of order. Are you on the same ubersite that laughs at rape, hassles little babies on public forums, and bashes people willing to post their picture as me? Clearly, you are a tool who doesn't get that this isn't the place to tell us about a failure baby and expect sympathy.
NOOB!
Submitted by ChocolateSprinkles (user info) at 2009-04-23 22:20:34 EDT (#)
Ranking: 2
Ignore sico, if ive learned anything from my time at Uber, Its that he's a massive cunt, who only seems to be able to get hard by the relentless and mostly out of order abuse he levers on people.
Good luck to you and yours
Submitted by Lib (user info) at 2009-04-23 18:45:39 EDT (#)
Ranking: 2
: )
Submitted by scourge (user info) at 2009-04-23 17:41:06 EDT (#)
Ranking: 2
89Y4 T34 R4T Y2R Y2R Y2
Submitted by Brdn_Nkd (user info) at 2009-04-23 16:28:50 EDT (#)
Ranking: 2
at least it's a coherently written sotry to read.
Submitted by littledan (user info) at 2009-04-23 15:18:36 EDT (#)
Ranking: 2
I've read every one of the posts in this series. I don't know if this is a true story or not, but if it is, my heart goes out to you.
If it's fiction, it's great. Either way, please keep posting.
Submitted by sicosemen (user info) at 2009-04-23 15:05:05 EDT (#)
Ranking: 0
hahahaha @ EI!
Submitted by EmissionImpossible (user info) at 2009-04-23 15:04:08 EDT (#)
Ranking: 0
so your daughter dead yet?
Submitted by sicosemen (user info) at 2009-04-23 14:58:04 EDT (#)
Ranking: -2
No, I click to give a negative 2 because I care that you are running the ever living shit out of this story about some kid no one cares about. Of course some people will pretend to care but whether or not the failure of life you shat out of your cunt lives or dies is truly, and tragically boring.
Submitted by SgtHartman (user info) at 2009-04-23 14:53:53 EDT (#)
Ranking: 0
Sgthartman feels comfortable posting a zero.
Submitted by SmalltownSally (user info) at 2009-04-23 14:51:14 EDT (#)
Ranking: 0
If you don't care, don't click. Simple as that. Or, click and then talk about how little you care. It's all the same to me.
Submitted by sicosemen (user info) at 2009-04-23 14:44:09 EDT (#)
Ranking: -2
Allow me. Either wrap this the fuck up or tell someone who cares.