As another testament to God's grace, I was able to talk to the one person I knew that could help me go through this as a mother. Even after everything that had taken place between myself and the co-worker, I was able to call his wife. She understood more than anyone what it meant to have a child with a serious medical issue. I tried to convey my most sincere apologies in what happened. She listened, she was kind and she prayed for my little girl to be ok. Amazingly strong.....
When Emily was born, a heart murmur was detected. As she got older she would tell people she had a broken heart.
Our pediatrician kept an eye on it and we started to see a pediatric cardiologist. I kept a log of events on MySpace so I've just copied on to here.
2007:
Josh and I took Emmy to UAB for her annual check up on her heart murmur. We thought, along with the doctor, that at age 3 we could move on with the plan of doing the heart cath (balloon) and fix her murmur.
Turns out, its worse than the doctor thought. In addition to having the bicuspid valve, she also has a subaortic ridge. Basically, she has tissue inside the aortic valve that's preventing free flow of blood. Her heart is working overtime to push this blood through. Because of that, her heart is becoming enlarged. The measurement from last year to this year is going on double (from 30mm to over 50mm).
We either do this surgery now, or 2-3 years from now she'll have to have a complete valve replacement. Obviously, we opted to do this now.
Basically, what Im getting to......our 3 year old daughter will undergo open heart surgery sometime within the next few weeks. We should get a surgery date scheduled next week and we'll start rolling from there.
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Trinity Learning Center is where The E's go to daycare. We have loved this place since we started. On Emmy's last day before she left for surgery, all of the kids and teachers created this HUGE banner that hung from one wall to the other. They also gave her a white stuffed bear with a beautiful silver cross on it. They promised to keep the banner hanging until she returned......
Update 1
So we're here in B'ham. Emmy walked in dressed up like a Queen, thanks to Mrs. Eddie Farnham. She has a wand, crown, ring and robe. In a day, she's driven a race car wheelchair, gotten a teddy bear, 2 bracelets and a baby doll full of medical supplies to practice on.
She's gotten her IV and her chest XRAY already. The doctor just made his rounds and we're all set for tomorrow. Her Aunt Whitey drove up to be with her as well.
They're taking her from her room at 7:00am to a holding area. Surgery begins at 8:30am and will last for about two hours. From there, we will be able to see her right when she goes into ICU. She'll spend the day there and if all goes well, she'll come to a regular room on Thursday.
Update 2
The worst part is over.....
Emmy went into surgery this morning crying......not because of the surgery but because she wanted her Daddy to go get her a pizza from Walmart. *lol* When we got to the holding area, we discussed in length the type of pizza, toppings, size etc she wanted. She wasn't worried a bit about what was going on around her. However, she wouldn't calm down about the pizza so the doc ordered some Versed. Gooooooooood stuff. Within minutes, she didn't give a flip about pizza. She was HILARIOUS!!!!!
They started surgery around 8:30am. Initially when we checked in at the desk, the attendant said to keep an eye on the board for updates and if there was an emergency or something, they would call us back to talk to the doctor. At 9:52a we got a call that the roughest part of surgery was over. By 11:05a, she was in recovery and we were waiting to see her. And waiting. And waiting. The attendant called us to the front and said the doctor needed to see us. I was a WRECK. As I sat in the consultation room, my mind thought of the worse possible scenario for what we were about to hear. It seemed like forever before the doctor came in.
Turns out, Emily got a little bit of my granny in her. :) When Emmy was coming to, she decided she didnt want her breathing tube in anymore and just pulled it out herself!!!!!!! That little turd. They had to reintubate her and give her more meds to knock her back out. Everything's fine though.......they just forgot who they were dealing with. She tried to warn them with her Queen stuff.....they just didn't listen. :)
Update 3
Emmy is moving to a room this morning!
We'll remain in that room until they release us to go home, whenever that will be.
We got a call this morning around 5am that Emmy had been a perfect angel all night. She had been up watching cartoons, eating some jello, asking for bubba and purple juice (and mommy and daddy too obviously). The nurse said someone had obviously spoken to Emmy about the hospital because once she came off anesthesia and became herself, she was the sweetest little girl. They talked about Water World and school and all kinds of things. So, she's fine. :)
Now WE get to take care of her and that's a little scary. Good thing she has Dr. Daddy. She's already talking about going on another cruise as soon as she's fully recovered.
I'll update again later today when she gets in her room...
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| 2 days post surgery |
Update 4
It's Saturday and we're waiting on our discharge papers! My friend Crissy that lives here in B'ham came to see us yesterday and she nearly fell out when she saw Emmy. At the time of her visit, Em was in the midst of a chase with her daddy down the hall.....Emmy on her tricycle and daddy trying to catch up. NOTHING what Crissy (or anyone else for that matter) expected just 2 days post op.
So we're heading home today. the van is packed, Emmy had her bath this morning and is dressed in regular clothes. She's having some lunch right now and then wants to hit the tricycle again. *lol* There's no stopping her now......
Update 5
On Sunday, Emily developed some sort of neurological issue that was severe enough for Josh and I to take her to the ER at SAMC. She had a cat scan to make sure she had not had a stroke, which came out negative. However, her condition still can not be explained. Therefore, we have to take Emily back to B'ham to be checked out by a neurologist there. At this point, we're not sure if what's she's experiencing is permanent or temporary, considering they don't even know what it is.
As of right now, they're looking at two factors: one is the lack of oxygen for 3 minutes when she removed her breathing tube in recovery and the second is a rare occurrence of acquiring a post op neurological disorder from being on the by-pass machine. Hopefully, her condition will be temporary but at this point we just don't have any clue.
Any of you see any interviews with Michael J Fox while he's had Parkinsons? That's what Emmy's going through. She's somewhat confused, uncoordinated, clumsy, slurred speech mildly and CONSTANT movement with her arms, legs, head and facial gestures. It seemed to come in waves on Saturday, being intense during the day, easing early evening and back to intense late last night.
9/11/07
We're heading to Birmingham tonight. We have an appointment with a Pediatric Neurologist at 8:30am at Childrens Hospital on Wednesday the 12th. Im stumped on what else to say.....Im just at a loss right now. Sorry.
Thursday, September 13, 2007
Update On Emmy....
Our visit with the Neurologist went really well. Emily has pulled ahead with her recovery tremendously. As Miss Eddie said today, this new neurological issue far overshadows her heart surgery. Heart surgery was a breeze for Em. This "unknown" neuro condition is what's so scary. Anoxic Chorea or Post Pump Chorea is what we've been told. It has hardly been seen since the early 90s and even then, it was rare. The only thing to do right now is to wait and see if she gets better each day.
"Don't tell God how big your storm is. Tell your storm how big your God is."
Wednesday, September 26, 2007
Emily’s Check-Up With Her Surgeon 092407
The four of us drove up to B'ham on Monday the 24th for Emily's check-up with Dr. Kirklin.
Dr. Kirklin didn't have a clue about Emily's problem with chorea. He was shocked when we told him everything we had been through with her, the trip to the neuro, the ER, etc...... He said in his 30+ years of surgery, he had never had a patient experience chorea. He was baffled. Then we reminded him that Emily was the one that extubated herself. THEN it all came back to him. He remembered the day very clearly then and said that was the reason for her condition. He explained what happened and why she went without oxygen for so long. They were trying their best to put the breathing tube back in, but she was fighting it and thrashing her head back and forth and they couldn't get it in with ease. They were busy fighting with her and trying not to hurt her trachea. Her blood pressure dropped and she gave everyone quite a scare. They bagged her to help with the air as they tried to get the tube reinserted, but the amount of saturation isn't the same so it only helps a little.
Anyway, she showed no signs of chorea at the appointment and appears as normal as can be now. The doctor gave us his cell phone number and said to make sure we call him directly if we have any other problems with her at all. He also cleared her to go back to school on Monday and she can't be more excited. She said "I get to go see my friends???" Her friends have missed her too. When I called the school to tell them she was coming back, the kids all screamed and some even said "Praise the Lord"! They all say a prayer for Emily every morning and the banner they hung for Emily the day she left is still hanging, waiting for her to come back. (As promised)
Our next appointment is in October and is a follow up with her Pediatric Cardiologist. Luckily, they're having a clinic at SAMC so we don't have to drive back to B'ham.
2008: April. After everything Emily went through, we ALL needed a vacation. Our favorite? Another cruise. Don't sit there and think we're some hoity toity family that runs off on vacations all the time. I research everything and go as cheap as possible. Our cruise tickets don't usually cost more than $200 (plus port fees) and the kids are usually $50-$100. You can hardly go on a beach vacation for 5 days for those prices AND you get treated like royalty! On this trip we visited St. Maarten, St Thomas and San Juan, Puerto Rico.
Now, about that Devil.......
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