The results are in. We have some pieces of good news. We have some pieces of hard news. and We have some bad news.
The good news: We got a great report from the gynecologist. She will need to have c-sections, but she should, with one more possible surgery, be able to have normal intimacy with her husband and conceive children.
Other good news: Their is a urologist in Charlotte who maintains a really good relationship with the one here in Cincinnati. And their is an awesome colorectal doctor in Asheville who used to work here until 2 years ago and has a great relationship with this team as well.
The hard news, part 1: Her bowel management regimen takes 15 minutes a day to administer and 45 minutes of potty time before it is complete. That is every day without fail, with the exact measures and at the same time everyday. And it is not all that easy to administer, so it will have to be Wes and me. We pray God will show us someone who could fill in for us for a long weekend on occasion. It is an effective treatment for complete bowel cleanness in 95% of cases. We would come back in a year for another week of bowel management that might progress to laxatives or require continued daily enemas for another year. They might, two years or so from now, form a belly button port for enemas. There are 30 years of experience to tell this world renowned doctor some indicators that bowel continence can eventually be achieved without daily enemas. Cori is currently considered a good candidate.
Hard news, part 2: We are not near to a solution for the urine. She should have reconstructive surgery for all three systems in the next 6 months or so. It is possible that the reconstruction may return urinary continence. If not, at the same time she might need to belly button port for enemas they would form an abdominal port for urinary cateterizing every 3 to 4 hours.
Her horrible rash should get better without bowel matter involved and we have a new cream that has helped greatly. They have a homemade solution that is less expensive I should hear about soon.
Bad News: The first repair surgery will be in Cincinnati and will require around 14 or more days in the hospital and additional days in the area. She will go 10 days with only fluids through a tube in her nose. Then they will gradually add back fluids by mouth, eventually soft food, etc until she is passing normal stool. During this time she will likely need bladder cathing through her private parts. She will go for a month without enemas but resume that daily regimen.
The worst news: She has reflux or urine back to the kidneys and has already suffered kidney damage. Any fever with vomiting is to be treated as a bladder infection with immediate attention to prevent further and worse damage. The since she is emptying her bladder the most likely explanation is a malformation of the bladder. She needs a nuclear medicine type test in the future for more specific information about her kidneys.
Twice today and nurse stayed in the room and asked me how I was handling the information. Not well. Wes has been chewing on it for about an hour and he is very over whelmed.
Wes, birthday girl Lily, and Jena are speeding towards us even now. We will go to the zoo and the aquarium this weekend. Wes will drive back for work and for Katherine and Grace while us girls do the daily enema and trip to the hospital for the xray.
As you can imagine, Cori and her dazed parents need your prayers.
Friday, October 21, 2011
Thursday, October 20, 2011
Sedated procedures today
Hospital no later than 6 am means up by 5 am, but I woke up around 3 and could not go back to sleep. Yawn...
We met the urologist, Dr. Alam, before the procedure. Yesterday's test showed that she has urine reflux. On a scale of 1 to 5 her left ureter is a level 3. This could do damage to her kidneys. We will hear his plan based on today's scoping and the tests tomorrow.
She was a trooper about having to go without food or drink this morning. By the time we had met our 20th or so staff member and signed enough papers to refinance our house, she was not quite as friendly. She got the giggles when the mask had been on her face for a little while. She was still trying to draw on my Nook. It turned into a purple blob and then she was out.
I headed out for comfort food....scrambled eggs, bacon, and the Chinese White Swan breakfast buffet favorite.............tater tots. OK, so I know it was bad for me, but it was SO good.
After less that 30 minutes I was called to meet with 2/3rds of the team, Dr. Pena and Dr Cocker. It is very reassuring to talk to Dr. Pena. He did cloaca repair in 1982. This team at Cincinnati Children's has seen almost 600 cloaca patients, over 100 of those adopted from China. He knew all of my concerns and has handled them all. I know we are at the right place! I know we will get a workable and hopeful plan tomorrow.
As has been the case before, our spicy Hunan girl wakes up with a hot anger! The nurse said she took out the IV so Cori would not rip it out herself. Unlike last year's reaction, however, she now knows I am her Momma, so she was soothed by my singing and was soon ready to leave.
Early food is supposed to be clear liquids and crackers..........Does she sound like the type of child who would settle for that??? Try yogurt, cheese stick, frosted flakes, and apples dippers.
It is very cold and rainy, but Dora episodes are getting old. We might have to venture out just to insure our sanity.
Thank you for your prayers and notes!
We met the urologist, Dr. Alam, before the procedure. Yesterday's test showed that she has urine reflux. On a scale of 1 to 5 her left ureter is a level 3. This could do damage to her kidneys. We will hear his plan based on today's scoping and the tests tomorrow.
She was a trooper about having to go without food or drink this morning. By the time we had met our 20th or so staff member and signed enough papers to refinance our house, she was not quite as friendly. She got the giggles when the mask had been on her face for a little while. She was still trying to draw on my Nook. It turned into a purple blob and then she was out.
I headed out for comfort food....scrambled eggs, bacon, and the Chinese White Swan breakfast buffet favorite.............tater tots. OK, so I know it was bad for me, but it was SO good.
After less that 30 minutes I was called to meet with 2/3rds of the team, Dr. Pena and Dr Cocker. It is very reassuring to talk to Dr. Pena. He did cloaca repair in 1982. This team at Cincinnati Children's has seen almost 600 cloaca patients, over 100 of those adopted from China. He knew all of my concerns and has handled them all. I know we are at the right place! I know we will get a workable and hopeful plan tomorrow.
As has been the case before, our spicy Hunan girl wakes up with a hot anger! The nurse said she took out the IV so Cori would not rip it out herself. Unlike last year's reaction, however, she now knows I am her Momma, so she was soothed by my singing and was soon ready to leave.
Early food is supposed to be clear liquids and crackers..........Does she sound like the type of child who would settle for that??? Try yogurt, cheese stick, frosted flakes, and apples dippers.
It is very cold and rainy, but Dora episodes are getting old. We might have to venture out just to insure our sanity.
Thank you for your prayers and notes!
Wednesday, October 19, 2011
First Day at Cincinnati Children's Hospital
With 11,000 employees it certainly is a busy place, but we were impressed with everyone we saw. It is so precious to see so many "special" employees working there.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
First Day at Cincinnati Children's Hospital
With 11,000 employees it certainly is a busy place, but we were impressed with everyone we saw. It is so precious to see so many "special" employees working there.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
Our day arrived cold and rainy, with car choked highways, a maze of a parking deck, and a broken stroller. (Thank you for the use of some heavy duty tape, urology department!)
Our first stop was for a Urology Formal Urodynamics study. They placed EMG patches on her connected to wires, had a catheter inserted for and aft (read through the lines), then her bladder was filled with fluid. All of that was emptied and she had an ultrasound.
Off to blood draw in the lab. Lunch, then to Radiology for an extensive abdominal ultrasound. Then she had her longest and hardest procedure. First was a voiding cystogram, a test to take pictures of the urinary system. Once again she had a catheter that filled her up, this time far past her comfort level. She cried quite a bit but settled down once she was able to void. She had many many x-rays at this point. Then she had an enema administered with the same results.....pain and more xrays. She was very uncomfortable at this point.
Finally she was allowed to potty ...and potty...and potty....and, well you get the idea. At least she was watching Cinderella. She is as clean as Cinderella's floor, if you get my drift.
She was asleep in less than 4 minutes in the car and then took a nap while Mommie did the same late afternoon.
She cries during these painful procedures, but she recovers quickly and responds to the toys and all they are showing to distract her. She has been through so much and has much more to go, but she is SO precious and tires so hard to be strong.
The trip up yesterday was beautiful. I could tell many of you were praying for me since my back and jaw really did well.
Tomorrow we are up at 5 am to be at the hospital by 6 for pre op. The Exam under anesthesia, Cystoscopy, and Vaginoscopy are scheduled for 7:30. I do not know how long everything will take, but we have nothing else tomorrow.
We appreciate your prayers for this brave and beautiful child.
Monday, October 17, 2011
No room's available at the Ronald McDonald House
We are going to try for a Residence Inn with a kitchen in it for the first week stay. Anyone with extra Marriott Rewar
ds they want to donate?
Sunday, October 16, 2011
Off to Ohio in about 36 hours.
Six hours to drive up on Tuesday. Wednesday is a gauntlet of painful and invasive procedures that go on all day. Tubes, needles, dyes, catheters, no time for naps or food. This much fluid, no food, no milk, full bladder......are you kidding. Thursday is a 7 am arrival. No food or drink past midnight. Sedated scoping. Friday is 6 hour ordeal. If I was still 25 I know I would need God to sustain. And Cori is just a baby. There is so little of this she can comprehend.
Almost everyday she asks about her huge abdominal scar. Every day she cries for every single diaper change. She knows we are going alone to see doctors who can help.
I am not ashamed that she is ours and we are old people. But I have to fall on God's mercy and His clear voice that this child is ours......And He who began a good work in me will be faithful to complete it.
He will thoroughly equip me for every good work.
And then there is the majority family back in NC. Two kids all wrapped up in high school activities. Two severely speech delayed and abandoned little girls, and two sensitive dachshunds who will deliver while I am gone and provide so much essential income to our family.
No news yet from the Ronald McDonald house.
Hearing this precious baby calling out in fear from her bed. Gotta go.
By the way, we would not have it any other way than this passionate and painful reliance on God.
Almost everyday she asks about her huge abdominal scar. Every day she cries for every single diaper change. She knows we are going alone to see doctors who can help.
I am not ashamed that she is ours and we are old people. But I have to fall on God's mercy and His clear voice that this child is ours......And He who began a good work in me will be faithful to complete it.
He will thoroughly equip me for every good work.
And then there is the majority family back in NC. Two kids all wrapped up in high school activities. Two severely speech delayed and abandoned little girls, and two sensitive dachshunds who will deliver while I am gone and provide so much essential income to our family.
No news yet from the Ronald McDonald house.
Hearing this precious baby calling out in fear from her bed. Gotta go.
By the way, we would not have it any other way than this passionate and painful reliance on God.
Sunday, October 9, 2011
Our October countdown begins
Cori and I will drive to Ohio on the 18th of this month. I am a little overwhelmed by the testing she will have to endure in the first 72 hours of her visit. Some of the preparation is simply impossible. There is no way to insure a full bladder for an incontinent child.
As I change her diaper every day she cries her heart out and calls out to her "Momma". I have told her we are going to a doctor who will fix her so she will not be raw and wet anymore, but I have no reason to believe this visit will include that surgery. We have adoption internet friends whose son has already had these same procedures and tests but they have to wait until March for the surgery. I just cannot imagine waiting that much longer.
As to the rest of Cori, Oh, how glorious and precious she is!She had a photo shoot for the Just Ducky catalog on Thursday and she was a total hit. She punched the photographer in the arm and told him he was a boy, as if that was the worst thing she could say. Now she has announced that no boys can come to her birthday party.....in May!
Friday night, while kissing me before bed, she said I was the best momma. She asked me last week, "You my Momma. You Happy?"
Oh yes, baby girl. I am delirious with happiness. Full to over flowing.
As I change her diaper every day she cries her heart out and calls out to her "Momma". I have told her we are going to a doctor who will fix her so she will not be raw and wet anymore, but I have no reason to believe this visit will include that surgery. We have adoption internet friends whose son has already had these same procedures and tests but they have to wait until March for the surgery. I just cannot imagine waiting that much longer.
As to the rest of Cori, Oh, how glorious and precious she is!She had a photo shoot for the Just Ducky catalog on Thursday and she was a total hit. She punched the photographer in the arm and told him he was a boy, as if that was the worst thing she could say. Now she has announced that no boys can come to her birthday party.....in May!
Friday night, while kissing me before bed, she said I was the best momma. She asked me last week, "You my Momma. You Happy?"
Oh yes, baby girl. I am delirious with happiness. Full to over flowing.
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