It's official. The minivan has been purchased.....and we are loving it.
Yesterday was a lab day which is always filled with anxiety while waiting for the results. In the meantime we headed to Target (Aimee, I didn't see you there...?) to pick up a highchair for Miss MercyMay. After sitting in one for the first time at Grandma's, she was excited to have her own at home. So cool to watch her get excited about the little things ... like the sound of lips smacking together after eating or drinking something really tasty followed by a satisfied 'aaah'. She got so excited a couple times she was shaking ... so cute and so hilarious! While in Target, we get the phone call....."Mercy's labs are all over the place, so it's probably good you're going to Billings tomorrow to see Dr. Narkewicz".
(Enter: thought process going wild)
(Enter: rational thinking ~ yellow stool + bile = good)
Then we get home to a message from Dr. Narkewicz's nurse in Denver .... "Mercy's labs are much worse". Her liver enzymes were elevated again and her bilirubin had increased a little. You can imagine how we are feeling at this point. Wondering. Now what?
We arrived in Billings around noon today and met Grandpa and Nannie for lunch before the appointment. MercyMay's first restaurant experience was a success. She was a very good baby. After saying goodbye, we headed to our appointment. Nervous, wondering, over-thinking.........
Dr. Narkewicz examined her and said she was looking really good. Still has a little fluid remaining in the abdomen which should subside over time so we will continue the diuretic. Her skin color is normal, eyes are almost completely white and her stool is yellow. All signs of surgery success so far. So why the crazy lab results?? Well, turns out... we were comparing Denver's lab results to Bozeman's lab results and apparently, they are not comparable because each lab tests differently......what??? SO, the whole time we were stressing out about "worse" lab results and labs "all over the place", we were worrying for nothing?? Yep, pretty much. Wow. Would have been nice to know that. (I could probably rant and rave a whole paragraph here, but let's keep it positive :))
Dr. Narkewicz told us that Mercy will always have elevated enzymes and that the "normals" are not HER normal ranges. Basically, we have to start a new "base line" for her labs based on results we take at home since (hopefully) our travels to Denver for surgeries are done. Of course, we still have to watch for signs of cholangitis (which would land us in Denver but does not require surgery), but for now she is healthy and doing great! Dr. Narkewicz was pleased with her progress which made us extremely HAPPY.
We will follow up with labs in 2 weeks, 4 weeks and then see him again in June.
**** Moving forward ~~~~ > ****
We try to maintain an emotional even keel so we don't get too high or too low (which can be difficult at times). We never know what her disease will deliver daily so when we have great day (yellow poop, no fussy, etc.) we really savor it......it is truly like a holiday. Today was a great day :)
Thursday, April 28, 2011
Tuesday, April 26, 2011
"The river is gonna rise....wash our struggles away....the sun is gonna shine....shine down on a brand new day"
Had a great day today. Mercy's sleep schedule has been quite erratic from being in the hospital again so last night was the first night of "normal" sleep. She woke up in a wonderful mood, and we woke up without sandpaper in our eyes! Her skin today is much paler and the whites of her eyes are literally sparkling . It's so nice to see those bright and shiny eyes of hers. Pair those beautiful eyes with her happy smile and wow......life is grand.
All of her steri strips fell off her scar today and it looks like it's healing very nicely. Her stitch from her JP drain also looks good. It's hard to tell that she has been cut open in the same place three times in three months. Ninja. Surgeon. Stig. Somme. Superhero.
Perhaps you are also wondering...."How is her poop?" She will be so embarrassed when she gets older to find out we blogged about and celebrated her stool :) .... it has been bright yellow and stinky. She used to love to get her diaper changed because that's where her "clean-butt friends" are (song sung by Mom included) but lately she seems a little more annoyed by the process. Not sure what that's all about. She's probably a little wiser to the fact that her Mom doesn't have the greatest singing voice (although it usually sounds pretty good in the car with the tunes cranked...?).
Speaking of vehicles.....on our way home from Denver last week, our GMC was making some interesting noises. To spare you the details, we broke down right at the 7th Avenue Exit in Bozeman. Couldn't have been a more ideal situation, thank goodness (and Thank You Grandma for picking us up and calling the tow truck). The repair shop mentioned something about bearings, brakes, potential fires and wheels falling off...? Luckily, we didn't catch on fire or go off the road due to loss of a tire. We did however, make the necessary repairs that (of course) are not cheap. Sometimes it feels like ....life. just. won't. stop.
Needless to say, the GMC will not be around after tomorrow. We went into town today to trade it off for a used Honda minivan. Yes, a minivan. We are now officially....parents. :) (pardon the really silly stereotype) We figure with the necessity of traveling to Denver in comfort, it's the right thing to do.
Tomorrow is a lab day (blood draw). Never a fun time for anyone invloved, especially MercyMay....the one getting poked. We have full confidence (and hope) that her numbers are still down and her liver is functioning properly without any further damage.
Also.... It's time for the nugget to start drinking out of a cup, so that's the new introduction of adventure for this week. She is very interested in the eating process and watches us like a hawk when we consume food or drink. Her first attempt at the cup was a success, she catches on very fast. For being flat on her back in a hospital for a good portion of her short life, her motor skills are sharp and she is very aware.
So, that's the update. Hoping for a great visit with Dr. Narkewicz in Billings on Thursday. We will let you know how it goes. Until then...enjoy the rest of your week.
All of her steri strips fell off her scar today and it looks like it's healing very nicely. Her stitch from her JP drain also looks good. It's hard to tell that she has been cut open in the same place three times in three months. Ninja. Surgeon. Stig. Somme. Superhero.
Perhaps you are also wondering...."How is her poop?" She will be so embarrassed when she gets older to find out we blogged about and celebrated her stool :) .... it has been bright yellow and stinky. She used to love to get her diaper changed because that's where her "clean-butt friends" are (song sung by Mom included) but lately she seems a little more annoyed by the process. Not sure what that's all about. She's probably a little wiser to the fact that her Mom doesn't have the greatest singing voice (although it usually sounds pretty good in the car with the tunes cranked...?).
Speaking of vehicles.....on our way home from Denver last week, our GMC was making some interesting noises. To spare you the details, we broke down right at the 7th Avenue Exit in Bozeman. Couldn't have been a more ideal situation, thank goodness (and Thank You Grandma for picking us up and calling the tow truck). The repair shop mentioned something about bearings, brakes, potential fires and wheels falling off...? Luckily, we didn't catch on fire or go off the road due to loss of a tire. We did however, make the necessary repairs that (of course) are not cheap. Sometimes it feels like ....life. just. won't. stop.
Needless to say, the GMC will not be around after tomorrow. We went into town today to trade it off for a used Honda minivan. Yes, a minivan. We are now officially....parents. :) (pardon the really silly stereotype) We figure with the necessity of traveling to Denver in comfort, it's the right thing to do.
Tomorrow is a lab day (blood draw). Never a fun time for anyone invloved, especially MercyMay....the one getting poked. We have full confidence (and hope) that her numbers are still down and her liver is functioning properly without any further damage.
Also.... It's time for the nugget to start drinking out of a cup, so that's the new introduction of adventure for this week. She is very interested in the eating process and watches us like a hawk when we consume food or drink. Her first attempt at the cup was a success, she catches on very fast. For being flat on her back in a hospital for a good portion of her short life, her motor skills are sharp and she is very aware.
So, that's the update. Hoping for a great visit with Dr. Narkewicz in Billings on Thursday. We will let you know how it goes. Until then...enjoy the rest of your week.
Friday, April 22, 2011
Home sweet home...
After spending two weeks in the hospital, we were discharged Friday afternoon! I would have 'blogged' that day but you wouldn't believe how fast the room and the lap top gets packed once the word "discharged" is uttered.
After her drain was pulled, we needed to make sure she didn't have any issues and there wasn't any reason to stay in the hospital if not necessary. That night into the next day she slept alot but didn't show any signs of discomfort. Dr. Somme checked in with us and agreed that she was ready to go home. She still has some ascites and we have been sent home with a diuretic to treat it. Her body is not as full of fluid but her stomach is still distended, but soft.
She currently takes a liver medication (Ursodiol), a diuretic, Vitamin A, VitD , VitE, VitK as well as a multivitamin (ADEK), all 2x daily. Sometimes it feels like all we do is give her medication. Her diapers have been stinkier and yellower (yes, I said yellow-er) than they ever have been! Now, we can hope that the "classic" kasai procedure will do the trick and create the liver function she needs, all the while preventing any further damage of the liver. Sending strong messages into the universe for NO TRANSPLANT PLEASE.....Of course, there is a strong possibility we will be in Denver again to treat cholangitis when it happens. It is pretty much unavoidable, and we cannot go to our local hospital to treat it. We just don't know 'when' that will be.
Daddy stuck around an extra day so we were able to ride home with him. MercyMay's first road trip! We stayed in Casper last night and finished the drive today. Home. Yes.
Next Thursday, we will see Dr. Narcewitz (sp) in Billings who is one of the liver specialists at TCH to check on Mercy's progress. Meanwhile, we will rest and relax. Try to get back to normalcy as much as we can and enjoy every day, for healthy days are a gift and a blessing.
Where there is love, there is hope. THANK YOU for your continued support.
After her drain was pulled, we needed to make sure she didn't have any issues and there wasn't any reason to stay in the hospital if not necessary. That night into the next day she slept alot but didn't show any signs of discomfort. Dr. Somme checked in with us and agreed that she was ready to go home. She still has some ascites and we have been sent home with a diuretic to treat it. Her body is not as full of fluid but her stomach is still distended, but soft.
She currently takes a liver medication (Ursodiol), a diuretic, Vitamin A, VitD , VitE, VitK as well as a multivitamin (ADEK), all 2x daily. Sometimes it feels like all we do is give her medication. Her diapers have been stinkier and yellower (yes, I said yellow-er) than they ever have been! Now, we can hope that the "classic" kasai procedure will do the trick and create the liver function she needs, all the while preventing any further damage of the liver. Sending strong messages into the universe for NO TRANSPLANT PLEASE.....Of course, there is a strong possibility we will be in Denver again to treat cholangitis when it happens. It is pretty much unavoidable, and we cannot go to our local hospital to treat it. We just don't know 'when' that will be.
Daddy stuck around an extra day so we were able to ride home with him. MercyMay's first road trip! We stayed in Casper last night and finished the drive today. Home. Yes.
Next Thursday, we will see Dr. Narcewitz (sp) in Billings who is one of the liver specialists at TCH to check on Mercy's progress. Meanwhile, we will rest and relax. Try to get back to normalcy as much as we can and enjoy every day, for healthy days are a gift and a blessing.
Where there is love, there is hope. THANK YOU for your continued support.
Wednesday, April 20, 2011
Had another stress free, sleep-filled evening last night. Woke early this morning to news that we would be removing the JP drain today. The amount of fluid and swelling of her body had decreased during the course of the evening and into today. As a result, she looks much more comfortable and has been sleeping alot.
Dr. Somme just gave us the "go, so her drain is currently being removed and stitched up. Yay! One more tube out, YES.
Now, all we have is the PICC line which we wil leave until her last labs are drawn and we are able to go home. Slight discussion of a discharge but don't want to get too excited yet. Tonight, we will watch her to make sure the new plumbing system is working and we have no issues (fever, bloating, etc.).
We did have a great looking poop, nice and stinky! (I won't descibe the color I really saw to spare you some details...but it was a good one!) We are moving forward in positive directions. One day closer.
~ Found out last night that 'Jordan', the nursing student assigned to us the night before Mercy's surgery, has a last name of Elway. Very pleasant, beautiful girl. She politely asked me for permission to stand in and observe Mercy's procedure and I said "of course." Turns out she's the daughter of some dude named John...... ;)
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| Thank you, Aimee!! Xoxo Two Thumbs Up for ....... tasty dinners, scrumptious cupcakes, full bellies and wonderful superheroes! :) |
Dr. Somme just gave us the "go, so her drain is currently being removed and stitched up. Yay! One more tube out, YES.
Now, all we have is the PICC line which we wil leave until her last labs are drawn and we are able to go home. Slight discussion of a discharge but don't want to get too excited yet. Tonight, we will watch her to make sure the new plumbing system is working and we have no issues (fever, bloating, etc.).
We did have a great looking poop, nice and stinky! (I won't descibe the color I really saw to spare you some details...but it was a good one!) We are moving forward in positive directions. One day closer.
~ Found out last night that 'Jordan', the nursing student assigned to us the night before Mercy's surgery, has a last name of Elway. Very pleasant, beautiful girl. She politely asked me for permission to stand in and observe Mercy's procedure and I said "of course." Turns out she's the daughter of some dude named John...... ;)
Tuesday, April 19, 2011
Gimme a kiss on Tuesday........
Woke up to a bright-eyed smile this morning!! Daddy made it in last night after braving blowing snow and traveling 65 mph most of the way. So glad he could make it :)
The past few days, MercyMay has been retaining alot of fluid in her abdomen as well as the rest of her body. Her belly is very distended. It's hard to see her puff up like that. Still no fever which is great. She is dumping quite a bit of fluid into her JP drain still, so yesterday they took a sample to make sure there was no bile present. No news was good news, then this morning during rounds the surgeon team said the percentage was low and that meant the bile is traveling through her blood and not escaping out of the drain. Now if we could also see some evidence in her stool, we would be on our way to victory. She only had one small bowel movement yesterday, and haven't seen much action today. She has been on pain medication that can constipate her too, so it's a constant "wondering" and "guessing" and trying to aleviate any issues she may have, trying not to create more issues....
Last night we had our favorite nurse, Aimee. She takes very good care of this little nugget. We had a pain free, stress free night thanks to her caring spirit and loving heart. She works again tonight, so we will get to see her one more time this week. We both agreee that it would be more pleasant to see each other at Target or the grocery store, but it comes with the territory. Hopefully we will be discharged by Saturday (her next day on) which is so bitter sweet when it comes to saying "goodbye" to the special heroes and friends we have made here at the hospital. Thanks again, Aimee :)
Today has been a great day. My first text this morning was from a very close friend of mine and I feel like sharing :) It read:
"Good morning .... It's a beautiful morning, crisp air, and warm sun. I think it will be a good day for The McCullough's." Right you are my friend, right you are.
Mercy's labs were drawn today and her liver enzyme numbers came back in double digits in the normal range!! She has been in abnormal triple digits since we found out she was ill. Her total bilirubin level has also dropped significantly, although not quite "normal" yet. Any good news is great news and it takes time. So YES, the morning was beautiful and the day is good. :)
The past few days, MercyMay has been retaining alot of fluid in her abdomen as well as the rest of her body. Her belly is very distended. It's hard to see her puff up like that. Still no fever which is great. She is dumping quite a bit of fluid into her JP drain still, so yesterday they took a sample to make sure there was no bile present. No news was good news, then this morning during rounds the surgeon team said the percentage was low and that meant the bile is traveling through her blood and not escaping out of the drain. Now if we could also see some evidence in her stool, we would be on our way to victory. She only had one small bowel movement yesterday, and haven't seen much action today. She has been on pain medication that can constipate her too, so it's a constant "wondering" and "guessing" and trying to aleviate any issues she may have, trying not to create more issues....
Last night we had our favorite nurse, Aimee. She takes very good care of this little nugget. We had a pain free, stress free night thanks to her caring spirit and loving heart. She works again tonight, so we will get to see her one more time this week. We both agreee that it would be more pleasant to see each other at Target or the grocery store, but it comes with the territory. Hopefully we will be discharged by Saturday (her next day on) which is so bitter sweet when it comes to saying "goodbye" to the special heroes and friends we have made here at the hospital. Thanks again, Aimee :)
Today has been a great day. My first text this morning was from a very close friend of mine and I feel like sharing :) It read:
"Good morning .... It's a beautiful morning, crisp air, and warm sun. I think it will be a good day for The McCullough's." Right you are my friend, right you are.
Mercy's labs were drawn today and her liver enzyme numbers came back in double digits in the normal range!! She has been in abnormal triple digits since we found out she was ill. Her total bilirubin level has also dropped significantly, although not quite "normal" yet. Any good news is great news and it takes time. So YES, the morning was beautiful and the day is good. :)
Monday, April 18, 2011
Woke up...it was a Monday morning
Daddy's coming today!! Really excited to see him.
Mercy woke up with a slight fever. She was wrapped up pretty good in blankets last night and got to sleep next to her mama so we are hoping those are the contributing factors. Doctors made rounds this morning and said she's looking good...and happy. She's always happy :) (except when she can't eat - just like her Daddy).
The ultrasound yesterday didnt show any clotting in her PICC line which is awesome. The removal of the Foley (catheter) was a success and her epidural site is looking good. Her JP drain is still putting out quite a bit of fluid, so the goal this week is to see a decrease in the fluid and see some more action in the poop department. Nothing happening yet today.....come on green, stinky poop. What I wouldn't do to see a little diaper rash....that would signify bile flow. She is able to eat "ad-lib" meaning when she wants and as much as she can tolerate.
Today, we will continue to enjoy the lab holiday, continue to root for stinky poop and diaper rash, all while waiting for Daddy to come.
Mercy woke up with a slight fever. She was wrapped up pretty good in blankets last night and got to sleep next to her mama so we are hoping those are the contributing factors. Doctors made rounds this morning and said she's looking good...and happy. She's always happy :) (except when she can't eat - just like her Daddy).
The ultrasound yesterday didnt show any clotting in her PICC line which is awesome. The removal of the Foley (catheter) was a success and her epidural site is looking good. Her JP drain is still putting out quite a bit of fluid, so the goal this week is to see a decrease in the fluid and see some more action in the poop department. Nothing happening yet today.....come on green, stinky poop. What I wouldn't do to see a little diaper rash....that would signify bile flow. She is able to eat "ad-lib" meaning when she wants and as much as she can tolerate.
Today, we will continue to enjoy the lab holiday, continue to root for stinky poop and diaper rash, all while waiting for Daddy to come.
Sunday, April 17, 2011
Baby breathing deeply.......listening to her heartbeat
Over the last 24 hours, Mercy has put out 500 cc of fluid (she has a JP drain attached to her inside). Currently, she is sleeping with her resting heart rate at 160 .... should be 130 -140. Dr. Mack thought she might be a little dehydrated, so we are taking precautions to make sure that doesn't happen. Her stomach is still very swollen and not as soft as it could be. It's a little soon after the surgery to determine whether the swelling is from the surgery or actual fluid in the abdomen called ascites. If this is the case, they will treat it with diuretics.
She had a greenish looking poop this morning...awesome. The not so awesome part is that it traveled up her back a bit and has the potential of contaminating the epidural site. I was told that this could cause menangitis if it sits contaminated longer than 6 hours. Scary. So, her pain will be aleviated with iv medications after it is removed. They will remove her catheter as well. Two more tubes out of the body, done.
So, while we are continuing to rest, heal and enjoy the lab holiday, we will keep an eye on her and hope for positive results in the next coming days.
She had a greenish looking poop this morning...awesome. The not so awesome part is that it traveled up her back a bit and has the potential of contaminating the epidural site. I was told that this could cause menangitis if it sits contaminated longer than 6 hours. Scary. So, her pain will be aleviated with iv medications after it is removed. They will remove her catheter as well. Two more tubes out of the body, done.
So, while we are continuing to rest, heal and enjoy the lab holiday, we will keep an eye on her and hope for positive results in the next coming days.
Saturday, April 16, 2011
ME: "Oh, look! She's holding the bottle (of Pedialyte) all by herself!"
BRANDON (my brother): "Let's see you go without eating for 39 hours and see if you hold your brisket!"
(Enter: laughter and empathy here....we were enjoying some great barbecue in front of hungry Mercy at the time)
My brother and niece drove down from Minnesota, braving the closed, snowy roads of Nebraska early Friday morning. Mercy loves her Uncle B and CuzE.
The little nugget is recovering really well. They performed the "classic" kasai procedure which is the attachment of the small intestine to the liver. The same morning Mercy was in surgery, another little girl we met prior (9 months old) with Biliary Atresia named Ayvrie was having her liver transplant with Dr. Karrer. It was surely a day of blessings. Positive vibrations sent to her and her family for speedy recovery......
In order to manage her pain, Mercy has an epidural placed. SuperheroUncleAlan stopped by to check on us and make sure she was still comfortable. I also requested that a PICC line be placed in order to eliminate as much needle poking and prodding as possible. No need to repeat that nightmare again. Her incision looks fantastic for being cut into three different times. And so we waited......patiently.....for stinky, yellow poop. Or ANY poop for that matter....sorry to be so blunt here). In her previous surgeries, it took a while for her insides to "wake up". So far, we have seen the right color come out since the day after surgery. For some, the diaper changing process can be a drag. For us, we will change those dirty, stinky, nasty, green, yellow magnificent diapers all day, every day.........bring it.
Friday night, we were really excited because one of our favorite superhero nurses would be taking care of us. She was our 'Alan' that evening. We love her. Thank you, Aimee ;)
Today, we managed to get in a wagon ride around the hospital. Anything to take her mind off the fact that she was starving. I learned that some Children's hospitals (Boston), but not all, consider breast milk to be a "clear" similar to Pedialyte. Fortunately, the surgeon on call that came to speak with me about feeding shared this thinking and gave me the green light. Otherwise, she wouldn't be eating until tomorrow when we heard from the surgeon team again. That's brutal for anyone.....
My family leaves tomorrow, very glad they came down. It means alot. Tomorrow, I will still be on the lookout for yellow, green, stinky, etc. Sunday and Monday are "Lab Holidays"...meaning there will not be any blood drawn. She has given her fair share since we got here....a break is necessary.
BRANDON (my brother): "Let's see you go without eating for 39 hours and see if you hold your brisket!"
(Enter: laughter and empathy here....we were enjoying some great barbecue in front of hungry Mercy at the time)
My brother and niece drove down from Minnesota, braving the closed, snowy roads of Nebraska early Friday morning. Mercy loves her Uncle B and CuzE.
The little nugget is recovering really well. They performed the "classic" kasai procedure which is the attachment of the small intestine to the liver. The same morning Mercy was in surgery, another little girl we met prior (9 months old) with Biliary Atresia named Ayvrie was having her liver transplant with Dr. Karrer. It was surely a day of blessings. Positive vibrations sent to her and her family for speedy recovery......
In order to manage her pain, Mercy has an epidural placed. SuperheroUncleAlan stopped by to check on us and make sure she was still comfortable. I also requested that a PICC line be placed in order to eliminate as much needle poking and prodding as possible. No need to repeat that nightmare again. Her incision looks fantastic for being cut into three different times. And so we waited......patiently.....for stinky, yellow poop. Or ANY poop for that matter....sorry to be so blunt here). In her previous surgeries, it took a while for her insides to "wake up". So far, we have seen the right color come out since the day after surgery. For some, the diaper changing process can be a drag. For us, we will change those dirty, stinky, nasty, green, yellow magnificent diapers all day, every day.........bring it.
Friday night, we were really excited because one of our favorite superhero nurses would be taking care of us. She was our 'Alan' that evening. We love her. Thank you, Aimee ;)
Today, we managed to get in a wagon ride around the hospital. Anything to take her mind off the fact that she was starving. I learned that some Children's hospitals (Boston), but not all, consider breast milk to be a "clear" similar to Pedialyte. Fortunately, the surgeon on call that came to speak with me about feeding shared this thinking and gave me the green light. Otherwise, she wouldn't be eating until tomorrow when we heard from the surgeon team again. That's brutal for anyone.....
My family leaves tomorrow, very glad they came down. It means alot. Tomorrow, I will still be on the lookout for yellow, green, stinky, etc. Sunday and Monday are "Lab Holidays"...meaning there will not be any blood drawn. She has given her fair share since we got here....a break is necessary.
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| Good night |
Thursday, April 14, 2011
"There are always flowers for those who want to see them......"
Currently, MercyMay is doing well in surgery. The nurse calls me about every 45 - 60 minutes and updates me on her condition. She couldn't be in better hands. Stay strong little nugget!!!!
Allow me to take a moment and tell you about Alan Bielsky. Alan is one of our heroes here at the hospital, there are many .....
The first time Mercy was admitted for surgery, it was obviously very stressful for Rod and I. It was the first time I had been away from her since her day of birth, and the first time she was left in a stranger's hands. We were taken to a holding room where we met the surgeons, nurses and anesthesiology team (awesome people, all of them). Alan was her anesthesiologist. Mercy was very hungry and clearly upset about not eating....Alan took her in his arms and she stopped crying immediately. The way he held our baby and showed us comfort and empathy in such an emotional and crazy moment was unbelievable. Mercy felt his good energy...he told us he was going to take great care of our baby and followed through with his promise. Not sure who he was comforting more...us or Mercy :)
It's funny being here. I am a people person so it's easy to feel close to those that help you in a time of crisis or change. The flip side is, as an employee of a hospital, that relationship has to stay neutral for obvious reasons. Mercy doesn't allow that to happen. She grabs the heart and tugs and tugs and tugs....therefore it's easy to fall in love with her. So, today I asked who our anesthesiolgist would be......hoping for Alan.
"Dr. Carter will be taking care of Mercy today." Ok, cool. So I proceed to tell the nurse how special Alan is and about our first experience with him. He IS The Baby Whisperer (at least ours anyway).
Alan (dressed in professional attire) saw us in the holding room today. He came in to say hello and asked to hold "The Merc".....yep, you guessed it. She stopped crying immediately and instantly felt his good, positive energy. I looked at the nurse like "...see, told ya so!"
Every bit of anxiety, doubt or fear I had was now diminished. Every little thing is going to be alright. Alan passed her back to me, peaceful and asleep. Next thing I know, Alan returns in full scrubs. He switched his schedule to take care of Mercy today...... :) Thank you, Dr. Bielsky.
So now, I sit in the room.....waiting. Waiting for our precious little girl to wake up from surgery and start the healing process. The next few days will be intense as she is recovering from a pretty heavy duty organ revision. Will keep you all posted as best I can. Thank you for your positive vibrations....((((MUCH LOVE))))
Wednesday, April 13, 2011
Dear Daddy,
I know it is hard to be away from Mama and me (we miss a zoooooo), but I want you to know that you are doing a great job. While Mama is here taking care of me, you also have a big job......taking care of our house, Nesta, Rivers, CeeCee. It is important to our family to have that sacred space that you are protecting for us. I will be strong and brave for you tomorrow, don't worry about a thing. Because, every little thing is gonna be alright.
Thank you for being so strong. I love you.
Love,
MercyMay
Thank you for being so strong. I love you.
Love,
MercyMay
".......my strength lies solely in my tenacity”
Surgery is scheduled at 7:30 am tomorrow with Dr. Karrer and Dr. Somme for a "kasai revision".
She had labs drawn at 4:30 this morning which showed a significant increase in her total bilirubin level..... 8.9 (normal range is 0.2 - 1.2).
No solid foods, formula or breast milk after 1:30 am tonight....clear liquids until 5:30 am.....then we're on our way.
MercyMay wants you all to know that she is in good hands. She is healthy, happy and ready to be well. .
Thank you for your support, positive vibrations and LOVE........she is a hero.
"Inside every child lives a superhero who is SWIFT and STRONG." TCH Denver
She had labs drawn at 4:30 this morning which showed a significant increase in her total bilirubin level..... 8.9 (normal range is 0.2 - 1.2).
No solid foods, formula or breast milk after 1:30 am tonight....clear liquids until 5:30 am.....then we're on our way.
MercyMay wants you all to know that she is in good hands. She is healthy, happy and ready to be well. .
Thank you for your support, positive vibrations and LOVE........she is a hero.
"Inside every child lives a superhero who is SWIFT and STRONG." TCH Denver
Tuesday, April 12, 2011
“Tragedy is a tool for the living to gain wisdom, not a guide by which to live.”
Spoke with Dr. Karrer this afternoon and it looks like we're headed to surgery on Thursday or Friday(TBA). Twelve days of acholic stool, elevated liver fuctions, swollen abdomen, jaundice re-appearing in eyes and skin, failed attempts with steroids and no sign of cholangitis are all factors pointing us in that direction. In her previous surgeries, her gall bladder was attached to her liver. This time they will perform the full kasai procedure by attaching the small intestine instead.
Monday, April 11, 2011
Well, after 4 solid hours of "clear liquids" only, my baby is finally able to eat. The good news is, she is not on her way to surgery (yet). Since this morning she has had two bowel movements. Dr. Karrer just stopped in, checked her diapers and saw a little bit of color in one and the other still acholic. Promising .... but not quite where we wanna be.
So, the plan is to watch her for the next few days, continue the antibiotic and re-assess on Wednesday.
So, the plan is to watch her for the next few days, continue the antibiotic and re-assess on Wednesday.
Patience is a virtue.....
Spent the weekend waiting patiently for yellow, stinky poop. The stinkier and more yellow it is, the more things are going in the right direction. Needless to say, we didn't see yellow poop, much less stinky, all weekend. Her steroid burst was started on Friday, yesterday (4/10) was the final dose. Last night, she was scheduled for lab draw to see where her liver numbers were. Blood draws on Mercy are very difficult due to her tiny veins and very slow flow. In order to keep things on a more positive note and to make a long story short, her labs were due at 6:00 pm, but were not actually (completely) drawn until 10:00 pm. The results came back showing very little change in the numbers. We were told to prepare for an "exploratory" procedure meaning they may want to "look around" to see what the issue is. There is a chance that she will need another surgery, this time attaching the intestine to the liver rather than the gall bladder.
So, in preparation, she has not been able to eat since 6:00 this morning.
So, in preparation, she has not been able to eat since 6:00 this morning.
Saturday, April 9, 2011
Friday, April 8, 2011
....she's got wings.....she's got wings
We arrived at TCH around 4:00 am. Thursday (4/7). We both were very tired, it had been another long evening without much rest. Her labs were drawn and came back with a high bilirubin count (bile build-up) as well as elevated liver enzymes. The diagnosis so far is one of three, but not quite sure yet:
1. Bile duct obstruction......basically just a build up of "stuff" (blood, plasma, fluids, etc.). Dr. Karrrer says this is the most likely but we can't be sure yet. It is treated with antibiotics and a much heavier dose of steroids, perhaps intravenously (IV) rather than oral.
2. Cholangitis.....infection of the bile ducts. Symptoms include fever, abdominal pain and dark urine. Mercy has not experienced any of these as of yet. However, other symptoms include acholic stool and jaundice, both of which she currently has.
3. Surgery was unsuccessful.....meaning the connection between her gall bladder and liver is failing. Treatment would mean another surgery, this time attaching the intestine to the liver rather than the gall bladder. Considering HOW LONG we went post surgery without any issues, this is the most unlikely answer....thank goodness.
So, where are we at today, right now?
We are waiting to get her labs drawn again which will tell us which direction to go based on what I desribed above. She will have a new IV placed also since the one placed at home was not very comfortable for Mercy. This will allow administration of the steroid if necessary.
1. Bile duct obstruction......basically just a build up of "stuff" (blood, plasma, fluids, etc.). Dr. Karrrer says this is the most likely but we can't be sure yet. It is treated with antibiotics and a much heavier dose of steroids, perhaps intravenously (IV) rather than oral.
2. Cholangitis.....infection of the bile ducts. Symptoms include fever, abdominal pain and dark urine. Mercy has not experienced any of these as of yet. However, other symptoms include acholic stool and jaundice, both of which she currently has.
3. Surgery was unsuccessful.....meaning the connection between her gall bladder and liver is failing. Treatment would mean another surgery, this time attaching the intestine to the liver rather than the gall bladder. Considering HOW LONG we went post surgery without any issues, this is the most unlikely answer....thank goodness.
So, where are we at today, right now?
We are waiting to get her labs drawn again which will tell us which direction to go based on what I desribed above. She will have a new IV placed also since the one placed at home was not very comfortable for Mercy. This will allow administration of the steroid if necessary.
Sitting around, waiting for an airplane.....
Well folks, wish I had something better to blog about but unfortunately I do not.
The morning of the cut-a-thon, Mercy woke with an acholic (white or pale gray) stool. This usually signifies a lack of bile drainage which, as you know, is the core problem of her disease (biliary atresia). We placed a call to our doctor and later that evening, we found ourselves in the ER. Not the exact place we wanted to be after such a fantastic day. She was given a broad spectrum antibiotic shot to cover our bases if any bacteria (cholangitis) had developed. Cholangitis is an infection in the bile ducts and should be taken care of ASAP as to not damage the liver any further. On Sunday (4/3) we met our Doctor at her office and she administered another shot of antibiotic. Mercy was also put on what they call a "steroid burst" for the following three days. The steroid is supposed to help with any inflammation, perhaps due to getting her drain taken out or maybe the surgery itself was experiencing some swelling. At this point, we were trying anything and everything to cover all bases.
By Wednesday, her stool had not gone back to normal, blood tests were elevated and we were starting to see the jaundice building in her eyes. We placed another call to our doctor. Long story short, Mercy and I were life flighted from Bozeman to Denver in a small jet plane at midnight on Wednesday (4/6).
The morning of the cut-a-thon, Mercy woke with an acholic (white or pale gray) stool. This usually signifies a lack of bile drainage which, as you know, is the core problem of her disease (biliary atresia). We placed a call to our doctor and later that evening, we found ourselves in the ER. Not the exact place we wanted to be after such a fantastic day. She was given a broad spectrum antibiotic shot to cover our bases if any bacteria (cholangitis) had developed. Cholangitis is an infection in the bile ducts and should be taken care of ASAP as to not damage the liver any further. On Sunday (4/3) we met our Doctor at her office and she administered another shot of antibiotic. Mercy was also put on what they call a "steroid burst" for the following three days. The steroid is supposed to help with any inflammation, perhaps due to getting her drain taken out or maybe the surgery itself was experiencing some swelling. At this point, we were trying anything and everything to cover all bases.
By Wednesday, her stool had not gone back to normal, blood tests were elevated and we were starting to see the jaundice building in her eyes. We placed another call to our doctor. Long story short, Mercy and I were life flighted from Bozeman to Denver in a small jet plane at midnight on Wednesday (4/6).
Sunday, April 3, 2011
"Only in darkness can we see the stars...."
On Saturday April 2, the staff and students of The Academy of Cosmetology held a cut-a-thon which they dubbed........"Have a heart for Mercy". And boy, do they!
A friend of ours recently expressed our feelings perfectly....she said that words tend to diminish the feelings of gratitude and appreciation a person feels when someone else has gone above and beyond for them. Above and beyond is an understatement for the hard work everybody put into making the cut-a-thon a huge success. Planning started months ago when Mercy and I were still in the hospital.
The Academy has sponsored a cut-a-thon every year for the last 4 years with all proceeds going toward The National Center for Missing and Exploited Children. It's a pretty big deal around the school, so it was decided this year that the fundraiser would be held for Mercy May to help our family offset medical and travel expenses.
Several businesses around town, current students and graduates of the school donated prizes for the raffle that was held. (Good luck to those of you that bought tickets!! Prizes will be drawn this Tuesday morning in theory class. Winners will be notified immediately.)
Each student donated their "tips" for the day as well as performed services on the public.
Everyone was dressed in pink to honor MercyMay and they even made her a custom outfit that they all signed.
Needless to say...they had fun, did a great job and raised alot of money in the meantime. SYNERGY
THANK YOU
You are all fabulous, fantastic, first-class people and may all you do for others be returned to you in the same unsurpassed manner it was given to us.
A friend of ours recently expressed our feelings perfectly....she said that words tend to diminish the feelings of gratitude and appreciation a person feels when someone else has gone above and beyond for them. Above and beyond is an understatement for the hard work everybody put into making the cut-a-thon a huge success. Planning started months ago when Mercy and I were still in the hospital.
The Academy has sponsored a cut-a-thon every year for the last 4 years with all proceeds going toward The National Center for Missing and Exploited Children. It's a pretty big deal around the school, so it was decided this year that the fundraiser would be held for Mercy May to help our family offset medical and travel expenses.
Several businesses around town, current students and graduates of the school donated prizes for the raffle that was held. (Good luck to those of you that bought tickets!! Prizes will be drawn this Tuesday morning in theory class. Winners will be notified immediately.)
Each student donated their "tips" for the day as well as performed services on the public.
Everyone was dressed in pink to honor MercyMay and they even made her a custom outfit that they all signed.
Needless to say...they had fun, did a great job and raised alot of money in the meantime. SYNERGY
THANK YOU
You are all fabulous, fantastic, first-class people and may all you do for others be returned to you in the same unsurpassed manner it was given to us.
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