Genetic Defects, pt. 6 The Long and Winding Road (406 hits)
Category: NoneRating: 1 on 9 reviews (Rate this item) (V)
Submitted by SmalltownSally (View user info) at 2009-04-09 16:34:11 EDT
http://www.ubersite.com/m/121612 Chest Tubes and Ventilators
The next 2 weeks were a blur. Emma was progressing daily; growing stronger, developing her own personality, charming everyone who came near her. When they said that it was time to wean her off the pain medication, I let go of a breath that I didn't realize I'd been holding for the better part of 6 weeks. I started allowing myself to sleep a little longer. To go over to Shawn's on my way home from the hospital at night to watch movies or DVR'd episodes of Trueblood with him and his best friend Jurgen.
The physical therapy nurses came by and taught me massage therapy techniques to help soften and diminish her scars, and stretch her little muscles that went so long unused. Occupational therapy nurses came by to work on her feedings. Because she'd been on a ventilator so long, she'd lost her suck reflex and needed daily stimulation to try and regain it. Just in case, Thuy taught me how to insert her nasogastral feeding tube, and how to work her pump. One of her heart team, Dr. Shapiro, came in during one training exercize and gave me the best news of Emma's short life. She was well enough to come home by Thanksgiving.
I floated home on that sparkly cloud that night. Stopped off at Shawn's to have a little "hooray!" celebration with him and with Jurgen, and to warn them that neither of them would be seeing me much after she came home. I'd be too busy playing catchup with my wonderful little girl. And I felt like we had so much to catch up on! I burst with happiness to tell my mother casually over breakfast the following morning that I'd gotten her something special for her birthday, which happened to fall on Thanksgiving that year. I drove back to the hospital on the same sparkly cloud, singing and with a perk in my step that I thought I'd lost forever.
"So, I hear you guys are taking a little trip this coming week," said Kirby, as she drew smiley faces on Emma's whiteboard.
I grinned, "Yep! The whole family is excited to have her home, finally. We even got brave this morning and bought some diapers!"
The paleness of her face told me that somebody was saying something wrong. "Home?" She said quietly. "Dr. Holt said you were being transported to Ft. Worth for her valve repair... he said that home has never been an option pre-op..."
The floor fell out from under me, and I was falling... falling... falling. The previous 7 weeks stretched out behind me. Who knows how much longer now stretching before me, when 5 minutes earlier, we were counting down the days. "I could be wrong!" she tried to backpedal. "I could have heard wrong! You know how that happens here..."
She was right, to a point. There were 2 other Emma's in the NICU at Dell Children's. The Emma in pod 4 had a heart defect as well, due to being 8 weeks premature. More than one time during our stay, orderlies and care partners had brought the wrong meds to "Emma, in Four" when they should have taken them to my daughter, Emma-whose-last-name-sounds-like-four. Maybe it was Emma in Four that was being transported! But I knew I was hoping for nothing.
"I can get the doctor... do you want the doctor?" I looked at her. She knew. She ran off down the hallway to get him for me.
In the entire time I'd been staying with Emma, I hadn't lost it on any of her caregivers. I didn't cry, I didn't yell, I didn't get sarcastic... and I felt a beast rising up inside of me that I knew I couldn't control. It was black, and it had red, evil eyes, and dank horrible breath. Long, needle-like teeth that were thirsting for blood, that lived only to make someone, ANYone, feel as horrible as I felt right then. I was furious. Furious at myself for hoping, for not being good enough to make a fully-functioning child, for not being able to heal her myself. Furious at God for letting ths happen to someone so tiny. Innocent. Helpless. Beautiful. Furious at the doctors for lying to me and telling me she could go home and then taking that away. So mad that every inch of me shook.
Dr. Holt rounded the corner, looking ready to deliver some smug speech as he was wont to do, but I didn't let him deliver it. I closed the pod door and unleashed. To this day, I don't remember exactly what I said. I remember getting so in his face that, for a change, HE had to sit down because his knees wouldn't hold him. I heard them call a code gray over the loudspeakers, which is the "Holy shit! Something's going down!" code. I saw Cynthia, the NICU social worker standing anxiously outside the door, walkie talkie at the ready to call security if need be. Everyone knew that he was my least favorite doctor of the team. The one who talked to me like I didn't know anything. Like I wasn't the one there every day, caring for my child. Changing diapers, giving baths, administering medications, doing her CPT treatments for her pesky right lung that refused to inflate for so long. The one who refused to listen to anyone. Who thought he was the Almighty.
Security never had to be called. They don't care if you raise your voice, so long as you can't be heard in the hallway. So long as you don't throw anything or strike anyone. And I didn't. I wanted to, but I knew better. I'm a grownup.
In the end, my hands were tied. If I wanted, I could check her out of the hospital against medical advice. I could take her home, and I might get a week or two with her before she was back in the hospital... or dead. They needed to send her to Ft. Worth because they had an ECMO machine, which is like a bypass machine, except that it works both your heart and your lungs as you recover from massive reconstructive heart surgery. Dell was too new of a hospital to have that. She may not need it, but they didn't want to risk it without one.
So, one week before Thanksgiving, the Starflight team came to helicopter my daughter to Ft. Worth, and I followed in my $500.00 little junker car, praying that it would make it, and that I would have the strength to support my daughter through this leg of the ordeal, and most of all, that she would be well enough for us to just go home, and be normal. Before my sanity wore out.
User Reviews
Submitted by sicosemen (user info) at 2009-04-23 14:45:18 EDT (#)
Ranking: -2
Seems as though I missed this one.
Submitted by Judgement (user info) at 2009-04-13 16:18:34 EDT (#)
Ranking: 2
No Comment
Submitted by reginajacks (user info) at 2009-04-11 15:08:29 EDT (#)
Ranking: 2
wow.
don't know if i'd post it here, though.
Submitted by MitchTheComic (user info) at 2009-04-11 10:49:11 EDT (#)
Ranking: -1
I really quit caring with part three, stopped reading on part 4, and I now just want to know if the kid lives at the end. Can you just post one with spoiler alerts or something? If you told us everything ends happily ever after in this one I apologize, but I can't bare to read anymore.
Submitted by Ducky (user info) at 2009-04-10 22:36:54 EDT (#)
Ranking: 2
+2
Submitted by Lib (user info) at 2009-04-09 22:31:01 EDT (#)
Ranking: 2
No Comment
Submitted by skrapmetal (user info) at 2009-04-09 20:32:45 EDT (#)
Ranking: 0
Submitted by EmissionImpossible (user info) at 2009-04-09 17:01:19 EDT (#)
Ranking: 2
isnt it time to look on the bright side of life?
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Just before you draw your... nevermind.
Submitted by RoadSong (user info) at 2009-04-09 17:37:25 EDT (#)
Ranking: 2
The stress level here is incredible. Good for you that you let some of it out on that doctor without going over the edge.
Submitted by EmissionImpossible (user info) at 2009-04-09 17:01:19 EDT (#)
Ranking: 2
isnt it time to look on the bright side of life?