Tuesday, March 29, 2011
Saturday, March 26, 2011
FUNdraisers happenin' for Miss MercyMay....
Saturday April 2nd
Cut-a-thon Academy of Cosmetology
133 west Mendenhall
Bozeman, MT
(406) 587-1265 or 1264
Wednesday June 22
Live music benefit
Highland Pacific Restaurant
Denver, CO
www.highlandpacific.net
Donations can also be made at:
Wells Fargo (any branch)
Mercy May McCullough Foundation
Acct #2655768204
Cut-a-thon Academy of Cosmetology
133 west Mendenhall
Bozeman, MT
(406) 587-1265 or 1264
Wednesday June 22
Live music benefit
Highland Pacific Restaurant
Denver, CO
www.highlandpacific.net
Donations can also be made at:
Wells Fargo (any branch)
Mercy May McCullough Foundation
Acct #2655768204
Thursday, March 24, 2011
Today we are thankful for...
No tubes attached to our baby, successful surgeries, great friends and family, WSP, safe flights, sleeping babies on safe flights, home and everything that comes in it.
Just got home from Denver for what we hope was the last visit (fingers crossed no transplant) with her surgeon, Dr. Somme (pronounced SO-MAH). She was scheduled for a minor surgery to remove her external drain that was still attached to her gall bladder. We were on the early morning flight which meant we would leave the house by 5am. and land at 8:00 am. Because it was surgery and she would be put under, Mercy was not able to eat after 10 am. With a 1:00 pm surgery scheduled, this can be a very long three hours for the little nugget. She did really well.
Brent (our super-hero great Panic friend from Denver) picked us up from the airport and we headed to the The Children's Hospital (TCH). We ran into Dr. Karrer (pronounced like CAR) on the way to surgery and he was excited to see us. Dr. Karrer is considered to be one of the world's best for Biliary Atresia patients and actually traiwith ned Dr. Somme. Dr. Karrer said Mercy looked "fantastic" and "perfect". He told us that as hard as it was to do two kasai procedures on her, it was worth it and he was glad they did. We thanked him and proceeded to the operating room.
Her procedure took less than 30 minutes. Dr. Somme was very pleased with the results of her gall bladder kasai (it was his first one ever performed under Dr. Karrer's supervision) and said that she was looking really healthy. He said that from a surgery standpoint, he was done seeing her as a patient unless a transplant is necessary down the road. What a bitter sweet feeling.
After the surgery, Mercy was experiencing a little discomfort with gas and bloating. She was put under with gas this time which we hadn't had before (before was epidural and morphine) so it seemed to make her a bit more fussy than normal. She is also teething (never a fun deal) which added to her issues. The next day (Wednesday 3/23) she woke up still a little fussy, but luckily no signs of infection from her surgical site or anywhere else. Between the surgery the day before and the disease itself, we decided to take her temperature. From a surgery standpoint, the nurse was not concerned with a low grade fever but with the liver disease we always have to watch to make sure it does not exceed 100* F because of bacterial infection. Her temperature was 100.1 degrees F when we took it the first time.....
Of course we take a few more readings to "make sure" she indeed has a fever. Yep. Call the nurse. On our way to the Emergency Department. Again. (the first time was after her first surgery....not great memories)
At this point, emotions are running high. It's difficult to make decisions. And all we can think is...."here we go again". We get checked in and wait patiently for the nurse taking vitals to assist us. The nurse takes a look at Mercy and asks us whats wrong (visually she looks fine)......I explain her situation....she takes Mercy's temperature....."her fever is low grade" meaning no concern. I had given her Tylenol so it must have helped bring her down a bit, which the nurse said is a good thing. Hmmm. OK. Now what?
So, we wait to talk to the liver doctor on call just to make sure we are good to go home. In the meantime, Miss Mercy May is off gooin, cooin and gigglin with her Daddy and Uncle Brent! Obviously, she is feeling better so I bring her to the nurse to take her temp again. Still low grade, not exceeding 100 degrees, still haven't seen a liver doc yet.....we're outta here.
So, thankfully it was a false alarm. Always better to be safe than sorry. We figured between the teething, the surgery and the gas trouble ....yeah, she's a little feverish.
We missed our flight home amidst all of the adventure so had to spend one more night in Denver. The flight back was short and sweet, she is a great baby. We are home now, Mercy is well....teeth are still buggin tho ;) Time to rest. Will share more later......
Brent (our super-hero great Panic friend from Denver) picked us up from the airport and we headed to the The Children's Hospital (TCH). We ran into Dr. Karrer (pronounced like CAR) on the way to surgery and he was excited to see us. Dr. Karrer is considered to be one of the world's best for Biliary Atresia patients and actually traiwith ned Dr. Somme. Dr. Karrer said Mercy looked "fantastic" and "perfect". He told us that as hard as it was to do two kasai procedures on her, it was worth it and he was glad they did. We thanked him and proceeded to the operating room.
Her procedure took less than 30 minutes. Dr. Somme was very pleased with the results of her gall bladder kasai (it was his first one ever performed under Dr. Karrer's supervision) and said that she was looking really healthy. He said that from a surgery standpoint, he was done seeing her as a patient unless a transplant is necessary down the road. What a bitter sweet feeling.
After the surgery, Mercy was experiencing a little discomfort with gas and bloating. She was put under with gas this time which we hadn't had before (before was epidural and morphine) so it seemed to make her a bit more fussy than normal. She is also teething (never a fun deal) which added to her issues. The next day (Wednesday 3/23) she woke up still a little fussy, but luckily no signs of infection from her surgical site or anywhere else. Between the surgery the day before and the disease itself, we decided to take her temperature. From a surgery standpoint, the nurse was not concerned with a low grade fever but with the liver disease we always have to watch to make sure it does not exceed 100* F because of bacterial infection. Her temperature was 100.1 degrees F when we took it the first time.....
Of course we take a few more readings to "make sure" she indeed has a fever. Yep. Call the nurse. On our way to the Emergency Department. Again. (the first time was after her first surgery....not great memories)
At this point, emotions are running high. It's difficult to make decisions. And all we can think is...."here we go again". We get checked in and wait patiently for the nurse taking vitals to assist us. The nurse takes a look at Mercy and asks us whats wrong (visually she looks fine)......I explain her situation....she takes Mercy's temperature....."her fever is low grade" meaning no concern. I had given her Tylenol so it must have helped bring her down a bit, which the nurse said is a good thing. Hmmm. OK. Now what?
So, we wait to talk to the liver doctor on call just to make sure we are good to go home. In the meantime, Miss Mercy May is off gooin, cooin and gigglin with her Daddy and Uncle Brent! Obviously, she is feeling better so I bring her to the nurse to take her temp again. Still low grade, not exceeding 100 degrees, still haven't seen a liver doc yet.....we're outta here.
So, thankfully it was a false alarm. Always better to be safe than sorry. We figured between the teething, the surgery and the gas trouble ....yeah, she's a little feverish.
We missed our flight home amidst all of the adventure so had to spend one more night in Denver. The flight back was short and sweet, she is a great baby. We are home now, Mercy is well....teeth are still buggin tho ;) Time to rest. Will share more later......
Wednesday, March 9, 2011
Where there is LOVE, there is HOPE
“Gratitude is an art of painting adversity into a lovely picture.” Kak Sri
As you know, on October 21, 2010, little Miss Mercy May was brought into this wonderful, crazy world we all call life. It is a day we will never forget. From that point on we knew our life was to be filled with immense happiness and smiles, dirty diapers, spilled milk, lots of tears, scraped knees and all the other fun stuff and hard work that we knew came with being a new parent. Never in a million years could we be prepared for the news our doctor presented to us January 13, 2011. Mercy was 84 days old.
“You guys are on a flight tonight to Denver. If Mercy is not treated very soon, the disease is life threatening.” Words and urgency we will never forget. They suspected it was a very rare, congenital illness called Biliary Atresia. We didn’t realize it at the time, but these words and this new term were about to change our lives forever. Rod and I looked at each other in complete disbelief.
That night, I quickly and frantically packed our lives into a suitcase thinking we would be gone for a week, maybe 2 weeks. We were scheduled on a flight the next morning. I thought to myself (with much hope) that surely this could not be THAT serious. Little did we know, I would not sleep in my own bed or Mercy in her own crib for the next 4 weeks.
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