Birds flyin' high, you know how I feel
Sun in the sky, you know how I feel
Breeze drfting on by, and you know how I feel
It's a new dawn
It's a new day
It's a new life for me
And I'm feelin' good
Fish in the sea, you know how I feel
River runnin' free, you know how I feel
Blossom on the tree, you know how I feel
It's a new dawn
It's a new day
It's a new life for me
And I'm feelin' good
Dragonfly in the sun, you know what I mean
Butterflies havin' fun, you know what I mean
Sleeping peace when the day is done, that's what I mean
It's an old world
It's a new world
It's a bold world
For me
Stars when you shine, you know how I feel
Scent of a pine, you know how I feel
Oh, freedom is mine, and I know how I feel
It's a new dawn
It's a new day
It's a new life for me
And I'm feelin' good
~ perfect words courtesy of Joe B.
Wednesday, August 24, 2011
Sunday, August 14, 2011
"All that music waiting inside....."
One week post-op and Mercy is doing remarkably well!
Thursday night, we both got the best sleep we'd had since being in ICU. Part of that is due to the amazing nurse we had (Superhero Aimee!! Thank YOU!) and the fact that Mercy is healing quickly, responding quickly and in great spirits. Daddy came down for the weekend!!, and is thrilled to see her progress. It feels soooo good to see her feel good. She deserves it. Each day is one step forward filled with big smiles, laughter, new gestures, smirks, bright eyes and stinky, BROWN poop!!! (Now, that's some good shit! LOL)
Her second JP drain has also been removed as well as her IJ in her neck. We are looking at possible discharge early this week already.
Over the last few days, her labs have normalized which Dr. Narkewicz gave the"double~thumbs~up" (a rare display of personality coming from him, nice to see). Her pain control is much better, and she is well on her way to recovery. Upon observation and coming from experience with other transplant patients, our nurse Robyn (enter another Superhero...Thanks, you were great!!) said Mercy was making a "miraculous recovery".
Mercy has been showered with gifts. A "Bag of Fun" came, stuffed with toys, a wagonful of goodies for us both came from Aimee's mom and her friends, Superhero Alan stopped by to check on his little 'girlfriend'....the amount of support we have is amazing. The people we have met will be friends for a lifetime. Everybody turns HEROES.....THANK YOU
Tonight Mercy was finally free of any IV hook-up so we enjoyed a celebratory pizza party in the cafeteria with good friends. Tomorrow, Rod and I will celebrate our anniversary. There is no better present than seeing MercyMay happy and healthy.
Thursday night, we both got the best sleep we'd had since being in ICU. Part of that is due to the amazing nurse we had (Superhero Aimee!! Thank YOU!) and the fact that Mercy is healing quickly, responding quickly and in great spirits. Daddy came down for the weekend!!, and is thrilled to see her progress. It feels soooo good to see her feel good. She deserves it. Each day is one step forward filled with big smiles, laughter, new gestures, smirks, bright eyes and stinky, BROWN poop!!! (Now, that's some good shit! LOL)
Her second JP drain has also been removed as well as her IJ in her neck. We are looking at possible discharge early this week already.
Over the last few days, her labs have normalized which Dr. Narkewicz gave the"double~thumbs~up" (a rare display of personality coming from him, nice to see). Her pain control is much better, and she is well on her way to recovery. Upon observation and coming from experience with other transplant patients, our nurse Robyn (enter another Superhero...Thanks, you were great!!) said Mercy was making a "miraculous recovery".
Mercy has been showered with gifts. A "Bag of Fun" came, stuffed with toys, a wagonful of goodies for us both came from Aimee's mom and her friends, Superhero Alan stopped by to check on his little 'girlfriend'....the amount of support we have is amazing. The people we have met will be friends for a lifetime. Everybody turns HEROES.....THANK YOU
Tonight Mercy was finally free of any IV hook-up so we enjoyed a celebratory pizza party in the cafeteria with good friends. Tomorrow, Rod and I will celebrate our anniversary. There is no better present than seeing MercyMay happy and healthy.
Tuesday, August 9, 2011
Look at all the souls shakin' LIFE......
Going into the second surgery following transplant was obviously stressful but it was the best decision made. The procedure proved to be beneficial and we, along with Dr. Wachs, feel comfortable knowing that it was taken care of immediately. She spent the entire day and evening resting and healing with no major issues.
Today, Dr. Wachs removed her feeding tube, one of her JP drains and an arterial IV. She still has a JP drain on the left side as well as her broviac and catheter. Many of her medications will now be given to her by mouth, which she seems to really enjoy (for the time being). The hard part now (for me) is maintaining her pain since her pain meds will start to be weaned from her IV and given orally. She has been a little fussier than normal for most of today so I assume pain is what she is fussing about.
She has been allowed to breast feed and has tolerated her feeding very well, of course.
We are hopeful that tomorrow we will be discharged out of the PICU and heading upstairs. We have been moved to a different room in the PICU that does not require a single nurse to tend to us so that means her "needs" have become less and monitoring is not as critical. Great signs we are moving forward.
Earlier today, I was able to meet two families that have gone through the transplant process and share a bit of our stories with each other..
Lela, a beautiful little girl, is celebrating her 3~year anniversary of liver transplant later this month and is doing very well. She was also born with biliary atresia and was transplanted at 7 months old.
Evora, a beautiful, blessed 10 month old, just had her transplant last week, days before Mercy. She had a different, very rare liver disease other than biliary atresia. Due to complications with the donor liver, it did not "accept" so Evora had to endure a second transplant. My heart hurt for this family when they shared this. What they and many others don't know is that we were called that Tuesday to potentially receive that organ and were prepared to be on "back-up". Both Mercy and Evora share the same blood type. After what we have been through, I probably would have suffered an emotional breakdown if that would have happened to us after all we have been through. Thankfully, that was not part of our journey, very unfortunately it was part of theirs. Sharing that with the family was not important. What was important, was that they got a second chance to make it right and Evora is doing great so far. For this, they called Dr. Wachs a HERO (he was their surgeon also)....I smiled, and agreed wholeheartedly. Definitely another Superhero on our list :)
Thank you, Mikey ;)
Today, Dr. Wachs removed her feeding tube, one of her JP drains and an arterial IV. She still has a JP drain on the left side as well as her broviac and catheter. Many of her medications will now be given to her by mouth, which she seems to really enjoy (for the time being). The hard part now (for me) is maintaining her pain since her pain meds will start to be weaned from her IV and given orally. She has been a little fussier than normal for most of today so I assume pain is what she is fussing about.
She has been allowed to breast feed and has tolerated her feeding very well, of course.
We are hopeful that tomorrow we will be discharged out of the PICU and heading upstairs. We have been moved to a different room in the PICU that does not require a single nurse to tend to us so that means her "needs" have become less and monitoring is not as critical. Great signs we are moving forward.
Earlier today, I was able to meet two families that have gone through the transplant process and share a bit of our stories with each other..
Lela, a beautiful little girl, is celebrating her 3~year anniversary of liver transplant later this month and is doing very well. She was also born with biliary atresia and was transplanted at 7 months old.
Evora, a beautiful, blessed 10 month old, just had her transplant last week, days before Mercy. She had a different, very rare liver disease other than biliary atresia. Due to complications with the donor liver, it did not "accept" so Evora had to endure a second transplant. My heart hurt for this family when they shared this. What they and many others don't know is that we were called that Tuesday to potentially receive that organ and were prepared to be on "back-up". Both Mercy and Evora share the same blood type. After what we have been through, I probably would have suffered an emotional breakdown if that would have happened to us after all we have been through. Thankfully, that was not part of our journey, very unfortunately it was part of theirs. Sharing that with the family was not important. What was important, was that they got a second chance to make it right and Evora is doing great so far. For this, they called Dr. Wachs a HERO (he was their surgeon also)....I smiled, and agreed wholeheartedly. Definitely another Superhero on our list :)
Thank you, Mikey ;)
Monday, August 8, 2011
Big City Doctor, fix me up and make me right....
Alot has happened in the last 48 hours so I will do my best to catch up to speed. We are currently in the Pediatric ICU (picu) which allows Mercy to have constant, undivided attention.
Transplant surgery went really well, Dr. Wachs was very pleased with the results. I was able to finally see her around 3:00 pm. She was bright~eyed and feisty as ever. She IS a rockstar.
The new liver did not have to be 'cut' to fit which can help present fewer issues with bleeding and other things. Sweet.
Because the liver was donated from a child twice Mercy's weight, it can tend to be a little big at first (more on that to follow). Immediately following surgery, the medical team pays very close attention to fluid retention, glucose levels, electrolytes, blood pressure, pain management, etc. (There are too many "etc.'s" to list)
The first night out of surgery was a little rough. There was constant traffic in the room. Many hours of comforting and soothing her on my part, all hours of intensive care on the medical team's part. She experienced a "3rd degree heart block" about 3am that scared me (and our nurse) tremendously. She was immediately hooked up to an EKG, which ended up being "normal". Positive. They performed 2 ultrasounds on her to monitor her blood flow through her portal vein and elsewhere. The blood flow was evident in most areas but didn't have a strong signal in others.
The following morning (yesterday), another ultrasound was ordered, this time Dr. Wach's observed. He was concerned with blood flow through the portal vein which has been an underlying issue for Mercy since the beginning. (Portal vein thrombosis) Very important because obviously the new organ needs to have the blood supply it needs to function.
We were told that Mercy would more than likely end up in the OR again following transplant so the news to follow was not unexpected but never easy to swallow.
Dr. Wachs was "on the fence" about taking her in to OR. I had came in the room and mentioned that Mercy's belly looked much more distended today and was much firmer to the touch. Her girth was measured and indeed it showed an increase in size. Being very in tune to mother's intuition and following his own intuition (the sign of a GREAT doctor, in our opinion...huge respect for that), he decided to take her in. Bitter: gotta open her up again...Sweet: by looking inside, not at a machine's view (ultrasound), we would know FOR SURE what was happening . If things are looking great, awesome, sew her up and don't touch a thing. If things are not great, we take care of them now and not wait til "later" and have more issues. We will take this scenario any day over 'Rejection' of the new liver. Dr. Wachs can unclog portal veins, he can't force the body to accept it's new gift........
So, it was agreed....we were on our way to another surgery.....1:00 pm Sunday 08/07/2011
"You can sit in the grass if it feels good....
You don't even need to say a word....
You don't have to worry................at all"
Transplant surgery went really well, Dr. Wachs was very pleased with the results. I was able to finally see her around 3:00 pm. She was bright~eyed and feisty as ever. She IS a rockstar.
The new liver did not have to be 'cut' to fit which can help present fewer issues with bleeding and other things. Sweet.
Because the liver was donated from a child twice Mercy's weight, it can tend to be a little big at first (more on that to follow). Immediately following surgery, the medical team pays very close attention to fluid retention, glucose levels, electrolytes, blood pressure, pain management, etc. (There are too many "etc.'s" to list)
The first night out of surgery was a little rough. There was constant traffic in the room. Many hours of comforting and soothing her on my part, all hours of intensive care on the medical team's part. She experienced a "3rd degree heart block" about 3am that scared me (and our nurse) tremendously. She was immediately hooked up to an EKG, which ended up being "normal". Positive. They performed 2 ultrasounds on her to monitor her blood flow through her portal vein and elsewhere. The blood flow was evident in most areas but didn't have a strong signal in others.
The following morning (yesterday), another ultrasound was ordered, this time Dr. Wach's observed. He was concerned with blood flow through the portal vein which has been an underlying issue for Mercy since the beginning. (Portal vein thrombosis) Very important because obviously the new organ needs to have the blood supply it needs to function.
We were told that Mercy would more than likely end up in the OR again following transplant so the news to follow was not unexpected but never easy to swallow.
Dr. Wachs was "on the fence" about taking her in to OR. I had came in the room and mentioned that Mercy's belly looked much more distended today and was much firmer to the touch. Her girth was measured and indeed it showed an increase in size. Being very in tune to mother's intuition and following his own intuition (the sign of a GREAT doctor, in our opinion...huge respect for that), he decided to take her in. Bitter: gotta open her up again...Sweet: by looking inside, not at a machine's view (ultrasound), we would know FOR SURE what was happening . If things are looking great, awesome, sew her up and don't touch a thing. If things are not great, we take care of them now and not wait til "later" and have more issues. We will take this scenario any day over 'Rejection' of the new liver. Dr. Wachs can unclog portal veins, he can't force the body to accept it's new gift........
So, it was agreed....we were on our way to another surgery.....1:00 pm Sunday 08/07/2011
"You can sit in the grass if it feels good....
You don't even need to say a word....
You don't have to worry................at all"
Saturday, August 6, 2011
I love you since before the day you were born, child.....
After staring at the computer screen for quite some time now, I'm trying to figure out how to begin this blog entry. I have experienced every emotion possible. Fear, joy, excitement, anxiety, sorrow, guilt, fulfillment, empathy and others I cannot find a word for.....the tears tend to come and go. Thinking about our little girl and about the family of a little girl who was lost in order to give Mercy her gift.......that is HEAVY.
Almost three months on the list. TIME is a crazy thing.
"The call" we have so anxiously waited for came yesterday afternoon. A double rainbow was shining bright in the warm Colorado sky later that afternoon.
We were admitted to the hospital last night at 7:00pm. Once here, they took her labs, vitals and a chest x~ray to prepare for her transplant surgery. The liver was recovered and inspected by surgeons in the midwest and flown here early this morning. Surgery was scheduled at 7am today, they took her from my arms shortly after.
So far I have received one update. Diane, the transplant coordinator, will call every hour to tell me how she is doing. She was sleeping (anesthesia) peacefully while placing her lines (IV) and the breathing tube. Her incision had not been made yet. The donor was around 15 kg, about twice Mercy's size. We figure she was about 2 years old or somewhere close but due to confidentiality of both parties involved, we do not know specifics. Dr. Wachs was hopeful that the new liver would not have to be cut to fit into Mercy which will be determined when they are ready to place the new organ.
I have been asked "how long will surgery take?" I was told that TIME is of no concern. If they tell us it will take 8 hours and it takes 10, then as parents we're like "something went wrong". If they tell us it will take 7 hours and it takes 5, we will be like "what did they skip".....again, something out of my control. The surgeons are in the driving seat. My seatbelt is fastened.
Sidenote for PanicKin:
Dr. Wachs took his kids to the Saturday and Sunday show and has a steal~your~face tat on his upper arm. He likes to listen to jam bands during surgery so I told him Mercy was named after a song and he said..."I know that song"..... we have made plans to attend next year's Sunday show with him :)
Aint Life Grand is my listening choice at the present moment...this experience has shed a whole new light on how I hear the music. Music IS the therapy (Kammerer family <3). I encourage you to take a listen also.
I'm not alone...I'm just Blue
xoxo
Almost three months on the list. TIME is a crazy thing.
"The call" we have so anxiously waited for came yesterday afternoon. A double rainbow was shining bright in the warm Colorado sky later that afternoon.
We were admitted to the hospital last night at 7:00pm. Once here, they took her labs, vitals and a chest x~ray to prepare for her transplant surgery. The liver was recovered and inspected by surgeons in the midwest and flown here early this morning. Surgery was scheduled at 7am today, they took her from my arms shortly after.
So far I have received one update. Diane, the transplant coordinator, will call every hour to tell me how she is doing. She was sleeping (anesthesia) peacefully while placing her lines (IV) and the breathing tube. Her incision had not been made yet. The donor was around 15 kg, about twice Mercy's size. We figure she was about 2 years old or somewhere close but due to confidentiality of both parties involved, we do not know specifics. Dr. Wachs was hopeful that the new liver would not have to be cut to fit into Mercy which will be determined when they are ready to place the new organ.
I have been asked "how long will surgery take?" I was told that TIME is of no concern. If they tell us it will take 8 hours and it takes 10, then as parents we're like "something went wrong". If they tell us it will take 7 hours and it takes 5, we will be like "what did they skip".....again, something out of my control. The surgeons are in the driving seat. My seatbelt is fastened.
Sidenote for PanicKin:
Dr. Wachs took his kids to the Saturday and Sunday show and has a steal~your~face tat on his upper arm. He likes to listen to jam bands during surgery so I told him Mercy was named after a song and he said..."I know that song"..... we have made plans to attend next year's Sunday show with him :)
Aint Life Grand is my listening choice at the present moment...this experience has shed a whole new light on how I hear the music. Music IS the therapy (Kammerer family <3). I encourage you to take a listen also.
I'm not alone...I'm just Blue
xoxo
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