Today's report brought to you from 6th Floor Children's Hospital, Colorado....
Mercy was scheduled yesterday to have her Broviac procedure with Dr. Somme. As usual in surgery, she was a champ and did really well. We also got to see Superhero Alan and a few other favorite people here at the hospital. It's kinda weird to be back, it's been 9 weeks this time, but is also quite comfortable since Mercy tends to be quite a "celebrity". Nice to see all of her friends again from surgery and the 6th floor :)
The plan is to keep her here this week to monitor her new feeding through IV and get her to "goal'. She has a small incision on her upper left chest with a single catheter that goes through her vein to her heart to administer nutrition through her blood. Her first night being hooked up went great. Hopefully this will help her gain weight and give her that extra 'ooumph' she needs to grow and develop physically. She no longer has her feeding tube for nutrition which was (I will admit) nice for medication administration (not so fun to put in as you know from past posts). Back to tasting the yucky stuff, sorry nugget.... :(
After discharge, Home Health will assist us with weekly dressing changes, blood draws and overall maintenance of the line. Not too scary after dealing with the PICC line from before. I keep thinking.."wouldn't it be great if we got "the call" while here already?" Wait, that would be too convenient...lol.
Wednesday, July 27, 2011
Wednesday, July 20, 2011
Mark your calendar
Please Join Us
By helping friends and neighbors raise funds for Mercy and her family.
Your Donations will make a Difference!
WHAT: Garage Sale
WHEN: Saturday, August 13th 7:30 am ~ 4:00 pm
WHERE: 302 Meagher, Bozeman Montana
Your $$ donations or sellable items in good condition will be so helpful. Your items can be received beginning now, until August 1st at these locations:
302 Meagher, Bozeman OR 133 West Mendenhall, Bozeman
Call with questions: 406-581-6533
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Dance Your Socks Off!!
Appearing 60 times on the Grand Ole Opry, Wylie and the Wild West will be performing with additional entertainment by Don Elliot.
Come on down for an evening of fun and dance!
WHAT: Music Benefit for MercyMay
WHEN: Saturday, September 3rd @ 7:00 pm
WHERE: Music Ranch Montana ~ Paradise Valley ~ Livingston, Montana
Tickets are $25 each Call 406-222-2255 Concessions will be available
www.musicranchmontana.net
ALL Proceeds will benefit MercyMay
See you there!
By helping friends and neighbors raise funds for Mercy and her family.
Your Donations will make a Difference!
WHAT: Garage Sale
WHEN: Saturday, August 13th 7:30 am ~ 4:00 pm
WHERE: 302 Meagher, Bozeman Montana
Your $$ donations or sellable items in good condition will be so helpful. Your items can be received beginning now, until August 1st at these locations:
302 Meagher, Bozeman OR 133 West Mendenhall, Bozeman
Call with questions: 406-581-6533
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
Dance Your Socks Off!!
Appearing 60 times on the Grand Ole Opry, Wylie and the Wild West will be performing with additional entertainment by Don Elliot.
Come on down for an evening of fun and dance!
WHAT: Music Benefit for MercyMay
WHEN: Saturday, September 3rd @ 7:00 pm
WHERE: Music Ranch Montana ~ Paradise Valley ~ Livingston, Montana
Tickets are $25 each Call 406-222-2255 Concessions will be available
www.musicranchmontana.net
ALL Proceeds will benefit MercyMay
See you there!
"Tell me brother, can you see the sun where you're standing now?" ....
8th week on the transplant waiting list, 10th week of being away from home and can't believe we are in the 7th month of what has been our most challenging year ever. The little nugget will be celebrating her 9th month of life this week and it's looking like we will be spending her first birthday with her in Colorado rather than at home.
We had an appointment with Dr. Narkewicz on Monday. Mercy's "growth curve" has hit a plateau in several weekly visits which means she is not developing as well as she should (length, weight, head circumference, etc.). Her weight has not increased OR decreased in several weeks now, even with the feeding tube and added nutrition. If she has not gained significantly before Monday (7/25), she will be admitted to the hospital (now called Children's Colorado) to have a "broviac" placed. I don't know much about it other than it is IV nutrition. It is similar to the feeding tube but requires minor surgery because it is placed into the skin. As with ANY invasion of the skin, there is possibility of infection so my focus will switch to that home care routine rather than worrying about placing the feeding tube if and when she would pull it out (which btw, I got pretty good at and comfortable with!...Mercy, probably not so much ;) As with every scenario in this adventure, it is bitter-sweet. We will remain in the hospital for several days to make sure she is stable to return home (to RMH) and is adjusted to the broviac supplementation. My wish everyday is that the process would get started and her liver would "come", then we could maybe skip all this in-between stuff. But the reality is....wait, wait, wait. Alot of people ask "have ya heard anything yet?"......I say to them, "trust me, the text will go out as soon as that call happens." The Dr. did say that a few livers have come in but they weren't the "right fit". Damn, there's that bitter-sweet undertone again. But like he said, there are going to be issues with a liver transplant no matter what (bitter) so let's try to keep the issues to a minimum (sweet). Agreed.
We had an appointment with Dr. Narkewicz on Monday. Mercy's "growth curve" has hit a plateau in several weekly visits which means she is not developing as well as she should (length, weight, head circumference, etc.). Her weight has not increased OR decreased in several weeks now, even with the feeding tube and added nutrition. If she has not gained significantly before Monday (7/25), she will be admitted to the hospital (now called Children's Colorado) to have a "broviac" placed. I don't know much about it other than it is IV nutrition. It is similar to the feeding tube but requires minor surgery because it is placed into the skin. As with ANY invasion of the skin, there is possibility of infection so my focus will switch to that home care routine rather than worrying about placing the feeding tube if and when she would pull it out (which btw, I got pretty good at and comfortable with!...Mercy, probably not so much ;) As with every scenario in this adventure, it is bitter-sweet. We will remain in the hospital for several days to make sure she is stable to return home (to RMH) and is adjusted to the broviac supplementation. My wish everyday is that the process would get started and her liver would "come", then we could maybe skip all this in-between stuff. But the reality is....wait, wait, wait. Alot of people ask "have ya heard anything yet?"......I say to them, "trust me, the text will go out as soon as that call happens." The Dr. did say that a few livers have come in but they weren't the "right fit". Damn, there's that bitter-sweet undertone again. But like he said, there are going to be issues with a liver transplant no matter what (bitter) so let's try to keep the issues to a minimum (sweet). Agreed.
Tuesday, July 5, 2011
WEEK 6......waiting....patiently
This Friday will mark the 6th week of Mercy being on the transplant list. We are more than ready to get this game started. The fundraisers were a great time filled with family, old friends as well as making many new friends. We really appreciate the hospitality that Highland Pacific and its employees provided for us. Mama actually got to stay out, sans baby, for a few hours of fun!
Thank you to all who came and supported us.
My 13 year old neice came and stayed with me for a few weeks to help pass some time. She was a huge help and sure loves her (only) baby cousin.
Can't believe it's July already. The entire weekend of the 4th was spent with friends while on Independence Day, Mercy and I watched fireworks out our RMH window.
Looks like we might even catch a Rockies game this week.
Mercy has been stable. She popped another bottom tooth and is certainly talking and babbling alot more. Won't be long 'til she figures out how to wave hello/goodbye...the fingers are movin' but don't quite know where they want to go yet :)
Thank you to all who came and supported us.
My 13 year old neice came and stayed with me for a few weeks to help pass some time. She was a huge help and sure loves her (only) baby cousin.
Can't believe it's July already. The entire weekend of the 4th was spent with friends while on Independence Day, Mercy and I watched fireworks out our RMH window.
Looks like we might even catch a Rockies game this week.
Mercy has been stable. She popped another bottom tooth and is certainly talking and babbling alot more. Won't be long 'til she figures out how to wave hello/goodbye...the fingers are movin' but don't quite know where they want to go yet :)
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