Happy 6 month Transplant Birthday Chelsea. You look as beautiful as ever. Keep kicking butt and taking names.
Friday, December 16, 2011
Thursday, October 20, 2011
Free for the holidays
Friends, Chelsea returned to Pittsburgh for check up and rejection scope. She passed all the checkpoints with flying colors. No signs of rejection and everyone was happy with her overall health! Her energy is back, she just looks so healthy that it is hard to believe that just four months ago she was transplanted!
We can have monthly scopes performed locally in Nov and Dec, and then back to Pittsburgh in January for another check-in.
Chelsea, Bryan, and I want to thank you all for the well wishes, prayers and support! We may post an occasional update but we think the blog has definitely served its purpose. Chelsea now has a log of her "new beginning" that she can print out and show to her children one day. And she can see how very loved that she is by everyone!
We are so blessed to have such wonderful friends and family.
Love Stacye and Bryan
We can have monthly scopes performed locally in Nov and Dec, and then back to Pittsburgh in January for another check-in.
Chelsea, Bryan, and I want to thank you all for the well wishes, prayers and support! We may post an occasional update but we think the blog has definitely served its purpose. Chelsea now has a log of her "new beginning" that she can print out and show to her children one day. And she can see how very loved that she is by everyone!
We are so blessed to have such wonderful friends and family.
Love Stacye and Bryan
Friday, October 7, 2011
Almost 4 months down
Hi Friends -
Sorry for lapse in communications but we have been busy returning to "real" life. Chelsea is doing great - she has had good lab reports and another clean scope.
She is taking three online classes through Appalachian and that is keeping her busy. She looks great and has been experiencing minimal issues during recovery. Bryan and I have returned back to work full time so life seems almost normal! We are still keeping a close eye on our girl but we couldnt be prouder of her!
We have another check up back in Pittsburgh in 2 weeks so we hope that we continue on this awesome trend! Chelsea has truly been blessed!!
Thanks to all for the continued prayers for her.
Stacye
Sorry for lapse in communications but we have been busy returning to "real" life. Chelsea is doing great - she has had good lab reports and another clean scope.
She is taking three online classes through Appalachian and that is keeping her busy. She looks great and has been experiencing minimal issues during recovery. Bryan and I have returned back to work full time so life seems almost normal! We are still keeping a close eye on our girl but we couldnt be prouder of her!
We have another check up back in Pittsburgh in 2 weeks so we hope that we continue on this awesome trend! Chelsea has truly been blessed!!
Thanks to all for the continued prayers for her.
Stacye
Thursday, September 8, 2011
Heading Home!
Friends - We had the most awesome news today. Chelsea can go home as long as we return every two weeks for clinic visits and scopes! We are still stunned; we did not expect to be at this point for at least another month. God is so good!
Chelsea's weight is up to 101 lbs; no rejection in sight, and she looks terrific. Dr. Sindhi was very happy with what he saw today!
We will head home tomorrow or Saturday depending on how quickly I can get all of our mess packed up. We have accumulated a lot of stuff in three months!
I want to say a sincere thank you to everyone for all the prayers for Chelsea. It has been a crazy ride but we couldnt have made it without all the thoughts, prayers, care packages, and well wishes.
Chelsea's weight is up to 101 lbs; no rejection in sight, and she looks terrific. Dr. Sindhi was very happy with what he saw today!
We will head home tomorrow or Saturday depending on how quickly I can get all of our mess packed up. We have accumulated a lot of stuff in three months!
I want to say a sincere thank you to everyone for all the prayers for Chelsea. It has been a crazy ride but we couldnt have made it without all the thoughts, prayers, care packages, and well wishes.
Wednesday, September 7, 2011
Back In the 'Burgh
What a super visit home - both Chelsea and I were so glad to be back in our own beds! The house seemed so big compared to our little hotel room. But too quickly it was time to return back to Pittsburgh. We had a great breakfast with Stevie, April, Austin and Carlee then hit the road. What a long and rainy drive! But we made it back safe and sound.
Chelsea had scope on Tuesday; we just got results back and still no signs of rejection! We are so happy that she continues on such a positive path. Because of this, they reduced the steriods further - so that makes Chelsea very happy.
So we continue on the path to recovery! Thanks to everyone for all the notes. Special thanks to Trish, Tom, JT, Kerry and Landon for the care package they sent Chelsea! She loved it!
Chelsea had scope on Tuesday; we just got results back and still no signs of rejection! We are so happy that she continues on such a positive path. Because of this, they reduced the steriods further - so that makes Chelsea very happy.
So we continue on the path to recovery! Thanks to everyone for all the notes. Special thanks to Trish, Tom, JT, Kerry and Landon for the care package they sent Chelsea! She loved it!
Wednesday, August 31, 2011
Jail Break
The warden gave us a "get out of jail free" card! Well at least until Labor Day Monday. Chelsea and I are so excited to be home. It was a really long drive but very worth it to be back home with Bryan and Eric.
Chelsea still has to be careful about being around a lot of people while her immune system is compromised but she was told to do "one fun thing" to report back on. I think she is going to do movie night with her friend Shelly and rent some DVDs. They will make some snack food - and there will be more snacking and talking than movie-watching but I know it will do her so much good to be around her friends again.
This visit home is really a very promising sign that she is recovering well. There has been no mention of when we can go home for good but we are just going to enjoy this long weekend!
Happy Holidays to all!
Stacye
Chelsea still has to be careful about being around a lot of people while her immune system is compromised but she was told to do "one fun thing" to report back on. I think she is going to do movie night with her friend Shelly and rent some DVDs. They will make some snack food - and there will be more snacking and talking than movie-watching but I know it will do her so much good to be around her friends again.
This visit home is really a very promising sign that she is recovering well. There has been no mention of when we can go home for good but we are just going to enjoy this long weekend!
Happy Holidays to all!
Stacye
Wednesday, August 24, 2011
Another Good Scope!
Hi- Great news that this week's scope also shows no signs of rejection! Thank you God! You are so awesome!
Chelsea's steriods were reduced by another 25% as a result and she can now go on a reduced scope schedule starting next week.
Nothing but good news all around. Thanks to all of our friends and family for the prayers!
Love to all, Stacye
Chelsea's steriods were reduced by another 25% as a result and she can now go on a reduced scope schedule starting next week.
Nothing but good news all around. Thanks to all of our friends and family for the prayers!
Love to all, Stacye
Monday, August 22, 2011
99 Lbs!
Hi Friends-
Chelsea had a great clinic visit today. She is up to 99 pounds; which must be a pretty amazing accomplishment because everyone is so happy that she is doing this all on her own without any tube feedings. Apparently it is pretty rare that a transplant patient like Chelsea can adapt to real food so easily. And she is not only maintaining her weight but is posting weekly gains. She has another 5 lbs to gain but they are very happy with her progress so far.
Chelsea also had a completely clean scope last week - no signs of rejection at all. She will have another scope tomorrow, it would be wonderful if this one also comes back clean so we can lessen the steriods and have scopes less often! So tomorrow's scope is an important one.
Will keep you posted!
Chelsea had a great clinic visit today. She is up to 99 pounds; which must be a pretty amazing accomplishment because everyone is so happy that she is doing this all on her own without any tube feedings. Apparently it is pretty rare that a transplant patient like Chelsea can adapt to real food so easily. And she is not only maintaining her weight but is posting weekly gains. She has another 5 lbs to gain but they are very happy with her progress so far.
Chelsea also had a completely clean scope last week - no signs of rejection at all. She will have another scope tomorrow, it would be wonderful if this one also comes back clean so we can lessen the steriods and have scopes less often! So tomorrow's scope is an important one.
Will keep you posted!
Tuesday, August 16, 2011
2 Month Transplant Birthday
Chelsea has her 2 month transplant birthday today and she really has come a very long way during this period. She maintained her weight this week (did not lose further), had a good biopsy last week with no signs of rejection, and continues to improve in exercise and diet every week!
We moved over the weekend to the Residence Inn and that has been a positive thing. We can cook now - which is a blessing for me since I was addicted to the cafeteria onion rings! (Chelsea is not the only one that has stepped up their eating). So I am glad we are away from the hospital for a number of reasons, although they do have breakfast buffet here every morning at the hotel so I may be trading one problem for another :).
Thank you for continuing to pray for Chelsea. God has been so wonderful and deserves all the praise for the healing that Chelsea has experienced. Please pray for the donor family today, these transplant birthdays always bring to mind their loss and we hope that they are in the midst of healing too.
We moved over the weekend to the Residence Inn and that has been a positive thing. We can cook now - which is a blessing for me since I was addicted to the cafeteria onion rings! (Chelsea is not the only one that has stepped up their eating). So I am glad we are away from the hospital for a number of reasons, although they do have breakfast buffet here every morning at the hotel so I may be trading one problem for another :).
Thank you for continuing to pray for Chelsea. God has been so wonderful and deserves all the praise for the healing that Chelsea has experienced. Please pray for the donor family today, these transplant birthdays always bring to mind their loss and we hope that they are in the midst of healing too.
Wednesday, August 10, 2011
First week as Outpatient
Hi Friends- Chelsea has had a pretty great first week as an outpatient. She is sleeping a little better, has been eating more, and getting more exercise. The only downside that she is currently facing is maintaining her weight. Chels is down to 95 lbs which is over a 10# weight loss. Not sure how the doctors plan to address but she is trying very hard to eat every couple of hours. We should have a plan to address next week if she continues to lose weight.
She had her first outpatient scope, still waiting on the results of the biopsy to make sure rejection is still in check. But overall, Chelsea is really doing well. I think she looks so good and her spirits are much better now that we are away from the hospital.
Looking forward to the move this weekend!
She had her first outpatient scope, still waiting on the results of the biopsy to make sure rejection is still in check. But overall, Chelsea is really doing well. I think she looks so good and her spirits are much better now that we are away from the hospital.
Looking forward to the move this weekend!
Sunday, August 7, 2011
Free At Last, Free At Last
Hi - Chelsea moved to outpatient status Thursday evening! That means she left the hospital as an in-patient but has to stay in Pittsburgh for a few months as out-patient. She will go back to the hospital for clinic 3 days a week for labs, check-ups and rejection scopes. But this move is a huge step in the right direction! It is nothing short of miraculous how far she has come in less than 2 months.
We are staying at Ronald McDonald house; but plan to move to the Residence Inn next weekend. We can stay in a suite that will give us more room and a full kitchen. Hoping that cooking again will get Chelsea's appetite back. She is doing great in that respect though - she has hit 1000 calories per day on her own, shooting for 1200 calories.
Michael came up for a quick visit and it was great seeing him.
Special thanks to Jim and Christine for all the help back home. You guys are just the best!
We are staying at Ronald McDonald house; but plan to move to the Residence Inn next weekend. We can stay in a suite that will give us more room and a full kitchen. Hoping that cooking again will get Chelsea's appetite back. She is doing great in that respect though - she has hit 1000 calories per day on her own, shooting for 1200 calories.
Michael came up for a quick visit and it was great seeing him.
Special thanks to Jim and Christine for all the help back home. You guys are just the best!
Tuesday, August 2, 2011
Aug 2 - almost 7 weeks post transplant
Chelsea had a great scope yesterday - no signs of rejection, only of regeneration! If we have another good scope on Thursday, then we can start discussion on outpatient status - woohoo! Maybe as soon as Monday if all goes good.
Chelsea will also be coming off TPN (IV nutrition) today, she will still get IV fluids but they want all of her nutrition to come from eating. Chelsea has really started to step up her eating, she is up to about 800 calories a day on her own. She needs to add another 400 calories to that, which sounds awful to her but sounds like a dream assignment to me ( I wish someone would ask me to add more calories to my diet!).
Missing everyone, thanks for thinking of us and including Chelsea in your prayers!
Chelsea will also be coming off TPN (IV nutrition) today, she will still get IV fluids but they want all of her nutrition to come from eating. Chelsea has really started to step up her eating, she is up to about 800 calories a day on her own. She needs to add another 400 calories to that, which sounds awful to her but sounds like a dream assignment to me ( I wish someone would ask me to add more calories to my diet!).
Missing everyone, thanks for thinking of us and including Chelsea in your prayers!
Friday, July 29, 2011
Good News
We just received word from Dr. Bond that Chelsea's Biopsy from this morning looks much better than what he saw on Wednesday. His exact comment was that he would be hard pressed to actually call what he saw "rejection." It appears the last couple of doses of medication we're exactly what we needed. Our fingers are crossed hoping that we finally have this rejection beat.
Hopefully Chelsea will be able to start to enjoy some of the goodies the staff here at CHP have brought in for her. Today it was Pina Coloda Cup Cakes (non-alcoholic of course!) and Pretzel M&M's. Yesterday it was Rita's Italian Ice. Stacye also enjoyed an Italian ice. (Note to self: Stacye loves Ritas' Chocolate Italian Ice).
Chelsea has really enjoyed seeing her big sister Kelly this week. Even thought she hasn't felt very good, Kelly can always bring a smile to her face. Kelly - Thanks for everything. You are always a big help and we love you.
Tonight the plan is for Chelsea to get some sleep. Sweet Dreams - Sunshine!
Hopefully Chelsea will be able to start to enjoy some of the goodies the staff here at CHP have brought in for her. Today it was Pina Coloda Cup Cakes (non-alcoholic of course!) and Pretzel M&M's. Yesterday it was Rita's Italian Ice. Stacye also enjoyed an Italian ice. (Note to self: Stacye loves Ritas' Chocolate Italian Ice).
Chelsea has really enjoyed seeing her big sister Kelly this week. Even thought she hasn't felt very good, Kelly can always bring a smile to her face. Kelly - Thanks for everything. You are always a big help and we love you.
Tonight the plan is for Chelsea to get some sleep. Sweet Dreams - Sunshine!
Thursday, July 28, 2011
Another round of rejection meds
Hi Everyone-
Looks like we are not quite through with rejection, latest scopes indicate that we need to get back on the anti-rejection meds. Not the news we wanted or needed, but we do want to stay on top of Chelsea's condition and be proactive in addressing any change in status.
Chelsea is staying optimistic and trying to keep her spirits up.Please keep her on your prayer lists and thanks for all the notes and emails!
Stacye
Looks like we are not quite through with rejection, latest scopes indicate that we need to get back on the anti-rejection meds. Not the news we wanted or needed, but we do want to stay on top of Chelsea's condition and be proactive in addressing any change in status.
Chelsea is staying optimistic and trying to keep her spirits up.Please keep her on your prayer lists and thanks for all the notes and emails!
Stacye
Sunday, July 24, 2011
Sunday July 24th
Hi Everyone-
Chelsea is doing much better. Her rejection is under control and in recovery. She is back to regular diet and has been allowed to leave the hospital on day passes for the past several days to get some fresh air and some rest back at Ronald McDonald house.
Chelsea had craving for PF Chang's so we went out to lunch on Friday. It was so fun to go to a restaurant with her again. It is funny how the little things mean so much more now! We also went into Target to pick up some new pjs for her and she seemed just like her old self walking the aisles. Who says shopping isnt great therapy?
We miss everyone and thanks again for all the cards, emails and prayers. Michael, we are looking forward to your visit soon - it will definitely lift her spirits to see you! Six weeks in-patient is a long time for a teenager to handle, but Chelsea is doing so well. She really is one in a million and we are so proud of her.
Stacye
Chelsea is doing much better. Her rejection is under control and in recovery. She is back to regular diet and has been allowed to leave the hospital on day passes for the past several days to get some fresh air and some rest back at Ronald McDonald house.
Chelsea had craving for PF Chang's so we went out to lunch on Friday. It was so fun to go to a restaurant with her again. It is funny how the little things mean so much more now! We also went into Target to pick up some new pjs for her and she seemed just like her old self walking the aisles. Who says shopping isnt great therapy?
We miss everyone and thanks again for all the cards, emails and prayers. Michael, we are looking forward to your visit soon - it will definitely lift her spirits to see you! Six weeks in-patient is a long time for a teenager to handle, but Chelsea is doing so well. She really is one in a million and we are so proud of her.
Stacye
Tuesday, July 19, 2011
Rejection status still good!
Hi Everyone-
Quick update that Chelsea's scan yesterday still showed improvement and Dr Soltys stopped the anti-rejection meds last night. That is great news for Chelsea because she was having a lot of side effects with that medicine - the worst being leg pain and cramps that kept her up all night.
Chelsea and Dr. Soltys are in the midst of a prankster battle. We are writing limericks about him every day on the white board; he has started changing her "status" signs posted on her door. He wrote on her sign yesterday - "Chelsea says do not come in; in fact do not even look at me".
He is so much fun and is definitely keeping us entertained.
Our limerick for him today:
A surgeon, a doctor, a prankster;
Kyle rocks his Converses like a gangster.
Of all the surgeons, he's trendy,
But not as sexy as Dr. Sindhi,
Mazregios says "Kyle is money in the bank, sir"
Quick update that Chelsea's scan yesterday still showed improvement and Dr Soltys stopped the anti-rejection meds last night. That is great news for Chelsea because she was having a lot of side effects with that medicine - the worst being leg pain and cramps that kept her up all night.
Chelsea and Dr. Soltys are in the midst of a prankster battle. We are writing limericks about him every day on the white board; he has started changing her "status" signs posted on her door. He wrote on her sign yesterday - "Chelsea says do not come in; in fact do not even look at me".
He is so much fun and is definitely keeping us entertained.
Our limerick for him today:
A surgeon, a doctor, a prankster;
Kyle rocks his Converses like a gangster.
Of all the surgeons, he's trendy,
But not as sexy as Dr. Sindhi,
Mazregios says "Kyle is money in the bank, sir"
Saturday, July 16, 2011
"Rejection on the Run"
Hi Friends and Family -
Chelsea has her 1 month transplant birthday today! And with it, some amazing news!
To backtrack, the scope on Thursday did not show any improvement in rejection status so we were pretty concerned (scared to death is really more accurate). The doctors continued the steriods and anti-rejection meds and scheduled another scope for this morning. At 2pm Dr. Soltys called and said that of the 3 samples taken, one was the same (not worse, not better), but the other two showed almost normal! His exact words, "we have rejection on the run!". We will stay on the current rejection meds and do another scope Monday. So we arent out of the woods but boy are we encouraged that we are on the right track and that she is responding! Thank you to all who are praying for her. God is so good to us and we are so grateful.
Dr Soltys also gave Chels a four hour pass and we left the hospital and celebrated with a picnic by the river. The weather was perfect and it was incredible to spend some time outside after a month in the hospital. I honestly couldnt keep my eyes off of Chelsea the whole afternoon. I am just so happy to be around her every single day.
July 16 2011 will go down as a wonderful birthday!
Chelsea has her 1 month transplant birthday today! And with it, some amazing news!
To backtrack, the scope on Thursday did not show any improvement in rejection status so we were pretty concerned (scared to death is really more accurate). The doctors continued the steriods and anti-rejection meds and scheduled another scope for this morning. At 2pm Dr. Soltys called and said that of the 3 samples taken, one was the same (not worse, not better), but the other two showed almost normal! His exact words, "we have rejection on the run!". We will stay on the current rejection meds and do another scope Monday. So we arent out of the woods but boy are we encouraged that we are on the right track and that she is responding! Thank you to all who are praying for her. God is so good to us and we are so grateful.
Dr Soltys also gave Chels a four hour pass and we left the hospital and celebrated with a picnic by the river. The weather was perfect and it was incredible to spend some time outside after a month in the hospital. I honestly couldnt keep my eyes off of Chelsea the whole afternoon. I am just so happy to be around her every single day.
July 16 2011 will go down as a wonderful birthday!
Friday, July 15, 2011
A Message From Your Big Sis
Hi Chelsea,
Tonight I am only thinking about happy times with you and hoping that you can
feel all my love and positive thoughts for you- and that somehow it will lift
you up and give you even more strength in this fight. In many ways, you and Eric
were like my "first babies" and I have so many great memories of you two growing
up. God truly blessed me when he brought you into my life. So, here are some fun
memories I have of you and maybe they will make you smile when you read them.
-Going to see you and Eric at the hospital on the day you were born, in my prom
dress! When Eric came out, he sounded like a little cat when he cried. you came
out and didn't make a peep. Your eyes were wide open and you were looking all
around, just taking it all in. The quiet didn't last too long though because
after a few months you were nicknamed "Chelsea Rhyan, a fussin' and a cryin'"!
You both were the cutest babies I'd ever seen.
-You and Eric had your own language as babies and you would sit in your little
"apartment" (playpen) and talk and die laughing and no one could understand you.
Then when you got a little older and no one could understand Eric (sorry buddy,
you know I love you), you were the only person that could translate for him. You
would say "He SAID that he wants a cookie!" and look at us like we were deaf AND
dumb.
- You two took off your diapers and ran around the house like maniacs saying "We
are nakey just like Chucky and Tommy" from the RugrAts.
- You would let me dress you up and do your hair and makeup just like a real
life baby doll. And then you would do a million poses, just like you were on a
photoshoot. You have always been our little model!
-The first time we went to Disney, you drove Stevie crazy in the car on the way
down because you kept singing the song from that show "Party of 5" on full
blast. You were only 5 and you only knew the first line which was "I don't want
to wait for our lives to be over....". Mom and I thought it was pretty funny,
Stevie- not so much.
-Speaking of your singing, you had a very creative interpretation of that tune
"Killing Me Softly". You would sing "Killing me softly wis his finga....
killing me softly wis his fing-a!" I recorded you singing this and used it as my
answer machine for years because it cracked me up so much.
-I still have the picture you made for school of the two of us together when you
you came to Chapel Hill becAuse I was "graduwaiting". We both have side
ponytails and bubbles by our mouths saying "Kelly!!!!" and "Chelsea!!!". It's my
most cherished possession.
-I remember one time mom was fussing at me in the car (yes, I deserved it) and
you were in your car seat and you turned to Mom, shook your finger at her and
said "You need to quit fussing at her!" . You have always had my back even as a
toddler! That's what sisters do!
-Remember when we were in the tram at Disney with our family and other people
and you were sitting on my lap and you said "Kelly, you need to shave your
legs"! The people in the car started dying laughing and then later you said to
Stevie dead serious "Did you pass gas?". You have always been spunky and tell it
like it is! I love that about you.
- Remember that time I surprised you and Eric by showing up Oak Iskand for
vacation? You and mom were on the beach looking at the water and you told her "I
wish that Kelly was here". Mom told you to close your eyes, make a wish, and
maybe I would show up. Right when you opened your eyes, I came up behind you and
you had the most genuine expression of surprise and happiness. See Chelsea- keep
making those wishes and they will come true!!
Well, this post is getting pretty long and I still have 1,000,000 more memories
to post to make you smile. Maybe I will roll them out at different times when
you need a pick-me-up. I love you more than words can say and I know you are in
good hands with mom, Bryan, and all the wonderful docs and nurses in Pittsburgh.
Sweet dreams tonight.
All my love,
Kelly
Tonight I am only thinking about happy times with you and hoping that you can
feel all my love and positive thoughts for you- and that somehow it will lift
you up and give you even more strength in this fight. In many ways, you and Eric
were like my "first babies" and I have so many great memories of you two growing
up. God truly blessed me when he brought you into my life. So, here are some fun
memories I have of you and maybe they will make you smile when you read them.
-Going to see you and Eric at the hospital on the day you were born, in my prom
dress! When Eric came out, he sounded like a little cat when he cried. you came
out and didn't make a peep. Your eyes were wide open and you were looking all
around, just taking it all in. The quiet didn't last too long though because
after a few months you were nicknamed "Chelsea Rhyan, a fussin' and a cryin'"!
You both were the cutest babies I'd ever seen.
-You and Eric had your own language as babies and you would sit in your little
"apartment" (playpen) and talk and die laughing and no one could understand you.
Then when you got a little older and no one could understand Eric (sorry buddy,
you know I love you), you were the only person that could translate for him. You
would say "He SAID that he wants a cookie!" and look at us like we were deaf AND
dumb.
- You two took off your diapers and ran around the house like maniacs saying "We
are nakey just like Chucky and Tommy" from the RugrAts.
- You would let me dress you up and do your hair and makeup just like a real
life baby doll. And then you would do a million poses, just like you were on a
photoshoot. You have always been our little model!
-The first time we went to Disney, you drove Stevie crazy in the car on the way
down because you kept singing the song from that show "Party of 5" on full
blast. You were only 5 and you only knew the first line which was "I don't want
to wait for our lives to be over....". Mom and I thought it was pretty funny,
Stevie- not so much.
-Speaking of your singing, you had a very creative interpretation of that tune
"Killing Me Softly". You would sing "Killing me softly wis his finga....
killing me softly wis his fing-a!" I recorded you singing this and used it as my
answer machine for years because it cracked me up so much.
-I still have the picture you made for school of the two of us together when you
you came to Chapel Hill becAuse I was "graduwaiting". We both have side
ponytails and bubbles by our mouths saying "Kelly!!!!" and "Chelsea!!!". It's my
most cherished possession.
-I remember one time mom was fussing at me in the car (yes, I deserved it) and
you were in your car seat and you turned to Mom, shook your finger at her and
said "You need to quit fussing at her!" . You have always had my back even as a
toddler! That's what sisters do!
-Remember when we were in the tram at Disney with our family and other people
and you were sitting on my lap and you said "Kelly, you need to shave your
legs"! The people in the car started dying laughing and then later you said to
Stevie dead serious "Did you pass gas?". You have always been spunky and tell it
like it is! I love that about you.
- Remember that time I surprised you and Eric by showing up Oak Iskand for
vacation? You and mom were on the beach looking at the water and you told her "I
wish that Kelly was here". Mom told you to close your eyes, make a wish, and
maybe I would show up. Right when you opened your eyes, I came up behind you and
you had the most genuine expression of surprise and happiness. See Chelsea- keep
making those wishes and they will come true!!
Well, this post is getting pretty long and I still have 1,000,000 more memories
to post to make you smile. Maybe I will roll them out at different times when
you need a pick-me-up. I love you more than words can say and I know you are in
good hands with mom, Bryan, and all the wonderful docs and nurses in Pittsburgh.
Sweet dreams tonight.
All my love,
Kelly
Wednesday, July 13, 2011
On the roller coaster
Hi- Some not so good news to share. Chelsea is experiencing a rejection and is currently on steroids to address. The doctors have assured us that this happens in almost half of intestinal transplants, especially at the 4-6 week mark. They are addressing aggressively with IV meds. But needless to say, it is worrisome and the medicines that Chelsea are on are not making her feel too good. But she is hanging in there and is trying to stay positive in attitude. She has another scope tomorrow to see how well the meds are working. Please keep her in your prayers.
The better news to share is that she had the NG tube taken out earlier this week and is now back on regular diet. We ordered some crepes from a local restaurant today and the food was really excellent. Hoping that this helps get her appetite back but it will take some time before she feels like eating back to normal level. Chelsea is doing so well otherwise that she is able to leave the 7th floor each day for a couple of hours. The change in scenery is much needed and does help us realize that this is not forever. We will be at four weeks in-patient tomorrow so cabin fever has definitely set in.
Thanks to everyone for all the cards and letters! Special thank you to Aunt Joy, Uncle Frank and Aunt Margaret. It was so nice to receive your cards today and Chelsea feels the love and prayers!
The better news to share is that she had the NG tube taken out earlier this week and is now back on regular diet. We ordered some crepes from a local restaurant today and the food was really excellent. Hoping that this helps get her appetite back but it will take some time before she feels like eating back to normal level. Chelsea is doing so well otherwise that she is able to leave the 7th floor each day for a couple of hours. The change in scenery is much needed and does help us realize that this is not forever. We will be at four weeks in-patient tomorrow so cabin fever has definitely set in.
Thanks to everyone for all the cards and letters! Special thank you to Aunt Joy, Uncle Frank and Aunt Margaret. It was so nice to receive your cards today and Chelsea feels the love and prayers!
Sunday, July 10, 2011
Sun July 10
Chelsea has had a couple of bad days- her stomach was distended on Friday so they re-placed the NG tube (down her nose and into her stomach) to give her tummy some relief. Chels was not thrilled about this (to say the least) but afterwards felt almost immediately better. Vicrim, the Transplant Fellow who placed the tube, could not believe how tough she is. He said there is no way he could have handled it the way she did. I think she would like to prove that theory (with Vicrim being on the business side of the NG tube next time). I told her that once she gets through all this transplant recovery, there is absolutely nothing that she can't do. Everything else in life will be cake compared to this!
Chels had an x-ray this morning and her tummy is back to normal. She can drink whatever she wants today and then we hope to have the NG tube taken out tomorrow.
Chelsea has increased her activity even with everything going on with her tummy -she did 7 laps yesterday around the 7th floor. We also watched the Chopped marathon last night - which was a welcome diversion. I would not be surprised if Chels says to heck with a undergrad degree and decides to go to culinary school instead. The awesome thing is that once she gets on the other side of this, she can do whatever the heck she wants to do!
We want to thank you all again for the love and prayers. God does deserve all the praise for Chelsea's recovery. Prayer Warriors, please keep her on your prayer lists. And please say a prayer for her doctors, nurses, and donor family - none of this would be possible without them all.
Chels had an x-ray this morning and her tummy is back to normal. She can drink whatever she wants today and then we hope to have the NG tube taken out tomorrow.
Chelsea has increased her activity even with everything going on with her tummy -she did 7 laps yesterday around the 7th floor. We also watched the Chopped marathon last night - which was a welcome diversion. I would not be surprised if Chels says to heck with a undergrad degree and decides to go to culinary school instead. The awesome thing is that once she gets on the other side of this, she can do whatever the heck she wants to do!
We want to thank you all again for the love and prayers. God does deserve all the praise for Chelsea's recovery. Prayer Warriors, please keep her on your prayer lists. And please say a prayer for her doctors, nurses, and donor family - none of this would be possible without them all.
Thursday, July 7, 2011
3 weeks Post-Op
Chelsea has now hit the three week mark post surgery. She didnt have too memorable of a day however. She really hasnt felt too good today so maybe eating regular food will take some time. Chels had a craving for hummus and baklava so we ordered takeout last night. The food was really good but Chelsea was only able to eat a very small amount. Based on how she felt this morning, it may be awhile before we order it again. She has not felt like eating all day today.
The transplant team is still very happy with her progress - it is just going to take time before she fully recovers. This is definitely a marathon, not a race, so we are staying positive and celebrating every day! We have come a long way in just three short weeks.
Thanks to all for the comments, cards, gifts, and prayers! We are so lucky to have such good friends and family.
The transplant team is still very happy with her progress - it is just going to take time before she fully recovers. This is definitely a marathon, not a race, so we are staying positive and celebrating every day! We have come a long way in just three short weeks.
Thanks to all for the comments, cards, gifts, and prayers! We are so lucky to have such good friends and family.
Wednesday, July 6, 2011
20 Days!
Chelsea had another excellent report this morning by Lisa the Transplant PA. Lisa said Chelsea's stomach sounded great and decided to move her to regular diet starting today! This is great news and shows just how much Chelsea is progressing.
Chelsea has to start tracking her calories and writing down everything she eats. She really isnt too hungry yet so it is a challenge to tempt her with anything. She has been mostly interested in Brisk tea and orange sherbet push-ups so far but will have to expand that today. She has to limit fat and stay away from carbonation. Other than that, she can basically try whatever she wants.
She has to continue walking today but other than that, we expect a quiet day. Chelsea wanted to read some cookbooks but the library here doesnt have any so I am going to check out the library at Ronald McDonald house to see if they have any there. It is great to see Chelsea interested in things again and that her energy is starting to return.
One day away from the 3 week mark!
Chelsea has to start tracking her calories and writing down everything she eats. She really isnt too hungry yet so it is a challenge to tempt her with anything. She has been mostly interested in Brisk tea and orange sherbet push-ups so far but will have to expand that today. She has to limit fat and stay away from carbonation. Other than that, she can basically try whatever she wants.
She has to continue walking today but other than that, we expect a quiet day. Chelsea wanted to read some cookbooks but the library here doesnt have any so I am going to check out the library at Ronald McDonald house to see if they have any there. It is great to see Chelsea interested in things again and that her energy is starting to return.
One day away from the 3 week mark!
Tuesday, July 5, 2011
Once around the floor!
Hi Friends - Sorry in lapse in blogging. We have been very busy around here.
Chelsea had a setback at 3am on Saturday when she had trouble breathing. We were sent back to ICU where Chelsea spent an additional day and a half getting breathing treatments. The upside of this trip back to ICU was that Chels finally got some sleep! It also seemed to be the start of a huge improvement cycle!
Chels went back to regular room on Monday evening and has been walking! It was like night and day when she got back to her room. She walked to the couch; she walked to the sunroom, and even went to watch the fireworks Monday night! And she just got back from one time around the whole 7th floor walking with her therapist April.
The doctors have been so impressed with her progress that they accelerated her diet. She basically has skipped the liquid diet steps and has moved straight to soft food. She has had yogurt, sherbert, and cereal so far.
Kelly has been a huge morale booster too! As soon as she came into ICU Saturday afternoon, Chelsea has shown nothing but improvement. I really dont know what we do without Kelly - she is one in a million.
Thanks again to all of our friends who are praying for Chelsea - her progress is truly miraculous and to God goes all the Glory.
Chelsea had a setback at 3am on Saturday when she had trouble breathing. We were sent back to ICU where Chelsea spent an additional day and a half getting breathing treatments. The upside of this trip back to ICU was that Chels finally got some sleep! It also seemed to be the start of a huge improvement cycle!
Chels went back to regular room on Monday evening and has been walking! It was like night and day when she got back to her room. She walked to the couch; she walked to the sunroom, and even went to watch the fireworks Monday night! And she just got back from one time around the whole 7th floor walking with her therapist April.
The doctors have been so impressed with her progress that they accelerated her diet. She basically has skipped the liquid diet steps and has moved straight to soft food. She has had yogurt, sherbert, and cereal so far.
Kelly has been a huge morale booster too! As soon as she came into ICU Saturday afternoon, Chelsea has shown nothing but improvement. I really dont know what we do without Kelly - she is one in a million.
Thanks again to all of our friends who are praying for Chelsea - her progress is truly miraculous and to God goes all the Glory.
Friday, July 1, 2011
Two weeks down!
Chels made great progress yesterday with her physical therapy - she stood on a scale by herself and walked a short distance. She is just moving more freely overall although the pain is still an issue, as expected. She is just so tough and resilient!
So happy that we are at the two week point! Everyone here that has seen previous transplant recoveries states that Chels is doing remarkably well so we are very encouraged!
Chels has been watching some movies on and off. Still very tired so doesnt have energy for much else with all the medical routines around here. She is getting very little sleep, just naps here and there.
Kelly coming in for the holiday weekend so we are psyched about seeing her! That alone should perk us all up! Happy 4th to all!
So happy that we are at the two week point! Everyone here that has seen previous transplant recoveries states that Chels is doing remarkably well so we are very encouraged!
Chels has been watching some movies on and off. Still very tired so doesnt have energy for much else with all the medical routines around here. She is getting very little sleep, just naps here and there.
Kelly coming in for the holiday weekend so we are psyched about seeing her! That alone should perk us all up! Happy 4th to all!
Wednesday, June 29, 2011
Day 13 - Hoping for a better day
Chelsea has had a couple of rough days. The upper GI yesterday showed things moving very slowly. This is not abnormal, doctors says it is common in transplant patients; especially coupled with the amount of medications she has been on. Her gut has just not fully "woke up" yet.
But Chelsea is rocking it out with Physical Therapy - she has had 2 sessions; one yesterday and one today. Both have taken a ton out of her - she is still super weak but she sat up yesterday and actually stood for a minute today. So she is moving in the right direction. I can only imagine where she will be this time next week!
Chelsea also received a special present today from her big sis, Kelly. Kelly had Chelsea's favorite childhood blanket made into a special quilt. Chelsea loved it! Kelly is definitely special in every way - and I am so grateful to have such wonderful daughters.
Thanks to everyone for all the calls, emails and texts! We are missing everyone!
But Chelsea is rocking it out with Physical Therapy - she has had 2 sessions; one yesterday and one today. Both have taken a ton out of her - she is still super weak but she sat up yesterday and actually stood for a minute today. So she is moving in the right direction. I can only imagine where she will be this time next week!
Chelsea also received a special present today from her big sis, Kelly. Kelly had Chelsea's favorite childhood blanket made into a special quilt. Chelsea loved it! Kelly is definitely special in every way - and I am so grateful to have such wonderful daughters.
Thanks to everyone for all the calls, emails and texts! We are missing everyone!
Tuesday, June 28, 2011
Day 12 - Test Day (Worse Than Finals)
Yesterday morning was really tough on Chelsea. The entire morning was full of different tests and procedures that really took everything out of her. She knows these things are necessary but there were so many back to back that she got tired of people constantly messing with her. As usual, Chelsea handled everything like a champ.
Chelsea is still dealing with a lot of pain and discomfort. The nurses have started pushing pillows under her back in order to lean her to one side or the other to help relieve the pressure. This too is painful but once situated it does help make her more comfortable. She has basically been in the same position since we arrived here 12 days ago.
We did have some concern yesterday when a test showed her liver function was not in the normal range. Those results precipitated even more tests. The doctors determined the elevated levels were due to a medication they had been giving her and made the necessary adjustments. The entire team here in Pittsburgh has been wonderful and we really feel confident they are watching every little thing to help care for Chelsea.
We did see some signs of our girl coming out yesterday. Chelsea sent Michael a text message and watched a movie on TV. The text was quite a challenge and she had trouble holding onto the phone and navigating her shaky little hands on the keys but she really wanted to send a message herself. Slowly but surely my Sunshine is breaking through the clouds!
Chelsea is still dealing with a lot of pain and discomfort. The nurses have started pushing pillows under her back in order to lean her to one side or the other to help relieve the pressure. This too is painful but once situated it does help make her more comfortable. She has basically been in the same position since we arrived here 12 days ago.
We did have some concern yesterday when a test showed her liver function was not in the normal range. Those results precipitated even more tests. The doctors determined the elevated levels were due to a medication they had been giving her and made the necessary adjustments. The entire team here in Pittsburgh has been wonderful and we really feel confident they are watching every little thing to help care for Chelsea.
We did see some signs of our girl coming out yesterday. Chelsea sent Michael a text message and watched a movie on TV. The text was quite a challenge and she had trouble holding onto the phone and navigating her shaky little hands on the keys but she really wanted to send a message herself. Slowly but surely my Sunshine is breaking through the clouds!
Monday, June 27, 2011
Day 11
Great news- Chelsea moved to regular room late yesterday! She is progressing ahead of schedule. She is still dealing with pain and stiff muscles from being under the paralysis medicine. And she is still very shaky and a little confused but that is to be expected. She is doing just amazing so far and we are so proud of her! She has had 2 popsicles and is craving Brisk tea (her favorite drink); it may be awhile before she can have that.
Will post more later today as we can but thanks again for all the prayers! God has been so good to us. It is so powerful what prayer can do.
Will post more later today as we can but thanks again for all the prayers! God has been so good to us. It is so powerful what prayer can do.
Sunday, June 26, 2011
Day 10 - June 26
Hi Friends - Chelsea has really had a rough 36 hours coming off the paralytic and dealing with pain. It is so good having Chelsea awake and talking to us again; we missed her so much. The doctors turned off the Paralytic late Friday afternoon. It didn't take long for her to star moving and slowly waking up. Due to the large amounts of medications she was on, it took until this morning for her to get most of it out of her system.
She is dealing with a lot of pain but being the trooper she is, Chelsea is doing amazing handling everything. The doctors are still really impressed with her improvements. It seems like she takes leaps and bounds every day. This morning they said she could have her first request - A Cherry Popsicle. If she keeps improving, she will likely be able to move to a regular room in the next day or two.
We told Chelsea about the blog this morning and she really liked the name. We are almost through the interruption and can see the wonderful future ahead. I can't wait until she feels like reading the blog and all the wonderful comments family and friends have posted.
We will try to keep blogging as we can the next few days but our primary focus is on Chelsea's care so posts may not be as frequent. Keep following and posting comments about Chelsea's amazing journey. I know she will be on reading this in the next few days.
She is dealing with a lot of pain but being the trooper she is, Chelsea is doing amazing handling everything. The doctors are still really impressed with her improvements. It seems like she takes leaps and bounds every day. This morning they said she could have her first request - A Cherry Popsicle. If she keeps improving, she will likely be able to move to a regular room in the next day or two.
We told Chelsea about the blog this morning and she really liked the name. We are almost through the interruption and can see the wonderful future ahead. I can't wait until she feels like reading the blog and all the wonderful comments family and friends have posted.
We will try to keep blogging as we can the next few days but our primary focus is on Chelsea's care so posts may not be as frequent. Keep following and posting comments about Chelsea's amazing journey. I know she will be on reading this in the next few days.
Friday, June 24, 2011
Hayley & David's wedding
Quick note to my niece Hayley who is getting married Saturday. We are so disappointed that we will not see you walk down the aisle this weekend. We know that you will be the most beautiful bride ever. Best wishes to you and David,
Love Stacye, Bryan, Eric and Chels
Love Stacye, Bryan, Eric and Chels
Thursday, June 23, 2011
1 Week Down- Closure
Hi Everyone-
Today is definitely a day for us to celebrate! Chelsea's incision was completely closed today! We have so much to be grateful for. We have made one week into the journey, Chelsea is completely closed, and no complications to date that were unexpected.
Dr. Soltys said that everything still looks great - absolutely no negatives in his report. Praise God for his continued miracles on Chelsea's behalf! And a big thanks to Dr. Soltys as well! He has been more than incredible!
The gameplan is to keep her under paralytic through the night, then in the morning start to wean her off with increased sedation. She hopefully will have the breathing tube removed sometime tomorrow as well. Then if all goes well, we could be on the regular hospital floor by Monday!
Friends & Family, thank you so much for all the prayers, thoughts, and well-wishes. Christine and Jim, thank you for all the extra effort you are extending on our behalf; at home and with having so many people pray for Chelsea. We love you both very much.
Michael, Happy Birthday! I know that you were hoping that Chels would get through her surgery today successfully and you got your wish! We will take you to Cabo Fish Taco when we get back home to celebrate.
In closing, please continue to have the donor family in your thoughts and prayers. I know this one week marker is also significant for them today as well and our hearts hurt for them.
Today is definitely a day for us to celebrate! Chelsea's incision was completely closed today! We have so much to be grateful for. We have made one week into the journey, Chelsea is completely closed, and no complications to date that were unexpected.
Dr. Soltys said that everything still looks great - absolutely no negatives in his report. Praise God for his continued miracles on Chelsea's behalf! And a big thanks to Dr. Soltys as well! He has been more than incredible!
The gameplan is to keep her under paralytic through the night, then in the morning start to wean her off with increased sedation. She hopefully will have the breathing tube removed sometime tomorrow as well. Then if all goes well, we could be on the regular hospital floor by Monday!
Friends & Family, thank you so much for all the prayers, thoughts, and well-wishes. Christine and Jim, thank you for all the extra effort you are extending on our behalf; at home and with having so many people pray for Chelsea. We love you both very much.
Michael, Happy Birthday! I know that you were hoping that Chels would get through her surgery today successfully and you got your wish! We will take you to Cabo Fish Taco when we get back home to celebrate.
In closing, please continue to have the donor family in your thoughts and prayers. I know this one week marker is also significant for them today as well and our hearts hurt for them.
Wednesday, June 22, 2011
Statistics - Chelsea's Favorite Subject (not!)
Being new to blogging we are finding out new things every day. I found statistics about the number of views related to Chelsea's blog and I was really surprised. The Blog has over 1800 views from 7 different countries! It's amazing to think so many people are interested in her story. Chelsea - when you wake up we are going to discuss just who it is you know from Portugal! Thanks for all the interest. I know Chlesea is going to love reading this when she is feeling up to it.
Chelsea is resting peacefully today. Her nurse is Linda. She is very attentive and making every effort to be quiet and let Chelsea rest. Tomorrow the Doctors will finally close Chelsea's incision and start waking her up. We'll have our girl back in less than 24 hours. But for today just rest and heal.
Chelsea is resting peacefully today. Her nurse is Linda. She is very attentive and making every effort to be quiet and let Chelsea rest. Tomorrow the Doctors will finally close Chelsea's incision and start waking her up. We'll have our girl back in less than 24 hours. But for today just rest and heal.
Day 6 - Top Ten List
Things we miss about Chelsea being awake:
1- Her radiant smile - she lights up the room!
2- Her evil laugh - how can someone so angelic have such a devilish laugh?
3- The way she smells - she always smells like a little vanilla cupcake.
4- Her funny stories - especially about her adventures with Amber at ASU (Amber, you are so dear to her)
5- The way she smiles when she talks about Michael (Michael, you know how crazy she is about you -and so are we!!).
6- The way she and Eric talk to each other - twins do have a special way of communicating that doesn't always make sense to anyone else. She does love her Tyrell :)!
7- Her flying fingers when she is texting - I think she could take home the Gold if texting becomes a sport!
8- Her cooking - especially now that we are eating cafeteria food!
9- Watching Food Network and Top Chef with her.
10- Her attitude - you've got to love her spirit!
Especially missing her today, can't believe that we have been here almost a week. It has been a lifetime; and it has been just a moment at the same time. She continues to do great and today should be a quiet one.
1- Her radiant smile - she lights up the room!
2- Her evil laugh - how can someone so angelic have such a devilish laugh?
3- The way she smells - she always smells like a little vanilla cupcake.
4- Her funny stories - especially about her adventures with Amber at ASU (Amber, you are so dear to her)
5- The way she smiles when she talks about Michael (Michael, you know how crazy she is about you -and so are we!!).
6- The way she and Eric talk to each other - twins do have a special way of communicating that doesn't always make sense to anyone else. She does love her Tyrell :)!
7- Her flying fingers when she is texting - I think she could take home the Gold if texting becomes a sport!
8- Her cooking - especially now that we are eating cafeteria food!
9- Watching Food Network and Top Chef with her.
10- Her attitude - you've got to love her spirit!
Especially missing her today, can't believe that we have been here almost a week. It has been a lifetime; and it has been just a moment at the same time. She continues to do great and today should be a quiet one.
Tuesday, June 21, 2011
Beautiful Organs!
Hi Friends -
Your prayers are so helpful and God is definitely acting on them! We had great news from the surgeon today - to use his exact words "everything looks beautiful!".
Dr. Soltys did decide to hold off until Thursday to close the incision completely in order to give Chelsea the smallest incision possible but the main thing was that everything looks great. And that Chelsea's progress is exactly where it needs to be with very little complications.
Chels, you will be asleep for a couple more days and then we expect that they will take you off the paralytic after Thursday's procedure. Although yesterday was a little hectic when you woke up, the doctors have a better game plan for Thursday to keep your pain managed. We are so looking forward to having you awake! It is pretty unnerving to see you so still and for so long; but I am sure it has been a good thing while you are healing.
Love you so much and we will continue to keep everyone updated on all your excellent progress!
Keep kicking it, Chickie!
Love, Mom
Your prayers are so helpful and God is definitely acting on them! We had great news from the surgeon today - to use his exact words "everything looks beautiful!".
Dr. Soltys did decide to hold off until Thursday to close the incision completely in order to give Chelsea the smallest incision possible but the main thing was that everything looks great. And that Chelsea's progress is exactly where it needs to be with very little complications.
Chels, you will be asleep for a couple more days and then we expect that they will take you off the paralytic after Thursday's procedure. Although yesterday was a little hectic when you woke up, the doctors have a better game plan for Thursday to keep your pain managed. We are so looking forward to having you awake! It is pretty unnerving to see you so still and for so long; but I am sure it has been a good thing while you are healing.
Love you so much and we will continue to keep everyone updated on all your excellent progress!
Keep kicking it, Chickie!
Love, Mom
Day 5 - Closure
Dr Soltys came by last night to let us know they would be performing the follow-up surgery to close the incision this morning. I wish Chelsea could have been awake to hear him. He really has quite the personality. Somehow he and Chels must have worked out a plan for him to give her a belly button ring while he was operating. We obviously put a stop to that!
Chelsea's nurse today is Diane. Again, we are fortunate to have an experienced, caring professional nurse caring for Chelsea. That is going to mean a lot today when she comes back from surgery. The staff here has been incredible with very few exceptions.
Please pray for Chelsea today as she goes through what will hopefully be her last major surgery. Stacye saw this verse yesterday and we wanted to share it with everyone.
"Come to Me, all of you who are weary and burdened, and I will give you rest. All of you, take up My yoke and learn from Me, because I am gentle and humble in heart, and you will find rest for yourselves. For My yoke is easy and My burden is light." Matthew 11:28-30
Please pray that all goes well and thank you all for your continued thoughts and concern!
Chelsea's nurse today is Diane. Again, we are fortunate to have an experienced, caring professional nurse caring for Chelsea. That is going to mean a lot today when she comes back from surgery. The staff here has been incredible with very few exceptions.
Please pray for Chelsea today as she goes through what will hopefully be her last major surgery. Stacye saw this verse yesterday and we wanted to share it with everyone.
"Come to Me, all of you who are weary and burdened, and I will give you rest. All of you, take up My yoke and learn from Me, because I am gentle and humble in heart, and you will find rest for yourselves. For My yoke is easy and My burden is light." Matthew 11:28-30
Please pray that all goes well and thank you all for your continued thoughts and concern!
Monday, June 20, 2011
Chelsea Wakes Up
Well we have confirmation - Chelsea is definitely in control of all her faculties. While we were at lunch, the doctors decided to take her off the paralytic medicine as they hoped to control her movement by using pain medicine.
That was a mistake! We were only 10 minutes back, when a monitor sounded loudly and woke her up. She was not happy at all with the tube down her throat. She was definitely yelling at all of us and was thrashing about with full strength. I had a hard time reading her lips but I am pretty sure that we were being cursed, along with all of our ancestors.
The doctors threw every pain medicine in the arsenal at her - morphine, adavan, fentanyl. She was not calming down at all. Chelsea ultimately wore them down because they went back to the paralytic to keep her immobile.
She is now resting peacefully but we are all in for it when they eventually take her off of the paralytic! I hope there are enough drugs in the hospital to cover her, me and Bryan!
That was a mistake! We were only 10 minutes back, when a monitor sounded loudly and woke her up. She was not happy at all with the tube down her throat. She was definitely yelling at all of us and was thrashing about with full strength. I had a hard time reading her lips but I am pretty sure that we were being cursed, along with all of our ancestors.
The doctors threw every pain medicine in the arsenal at her - morphine, adavan, fentanyl. She was not calming down at all. Chelsea ultimately wore them down because they went back to the paralytic to keep her immobile.
She is now resting peacefully but we are all in for it when they eventually take her off of the paralytic! I hope there are enough drugs in the hospital to cover her, me and Bryan!
Day 3 - Father's Day
Once again we had Colleen as the ICU nurse during the day and she was wonderful. I could tell she truly cared for Chelsea's comfort as if she were caring for her own child. When she came in first thing in the morning she wrote "Happy Father's Day - Bryan" on the white board. It hadn't even entered my my mind it was Father's Day.
Kelly called to check in and I told her that I would have the best Father's Day ever if we could just get through the day with Chelsea continuing to improve. Well, for awhile I wasn't sure it was going to work out that way but it ended up great! It was a mostly uneventful day. Chelsea continued to rest under sedation and the reports from all of the doctors were positive. No more issues with the bleeding through the NG tube all day.
For the most part, Stacye and I just hung out in the room reading, Blogging and planning the logistics of the next phase of this journey. We were able to do a load of laundry yesterday at the Ronald McDonald House. In the mad rush to get out the door, I only packed a few pair of jeans and a few t-shirts. It's funny how the smallest of things can help take your mind off the heaviness of the situation.
I talked to Eric early in the afternoon. He was going to go stay with his brother Stevie for the week. It is such a comfort having a responsible young man that we don't have to worry about and who is being such a big help back home. There have been so many people reaching out to help in any way they can. We are so appreciative of everyone's offers. It really means a lot to know the little things at home are under control.
Late in the day Chelsea's blood pressure started to hold at a level slightly higher than the medical team liked. The nurses and doctors collaborated to ty to determine the cause. And as usual with Chels, nothing they were trying was having much impact. In fact, one medication made her flush like a sunburn. Chelsea, you are one complicated girl! Finally by late evening they got the right mix of medications and everything settled back to a good level. Whew!
As I stated earlier, this would be the best Father's Day ever if we could get through the day with Chelsea continuing to improve. I can't imagine ever having a better one.
Kelly called to check in and I told her that I would have the best Father's Day ever if we could just get through the day with Chelsea continuing to improve. Well, for awhile I wasn't sure it was going to work out that way but it ended up great! It was a mostly uneventful day. Chelsea continued to rest under sedation and the reports from all of the doctors were positive. No more issues with the bleeding through the NG tube all day.
For the most part, Stacye and I just hung out in the room reading, Blogging and planning the logistics of the next phase of this journey. We were able to do a load of laundry yesterday at the Ronald McDonald House. In the mad rush to get out the door, I only packed a few pair of jeans and a few t-shirts. It's funny how the smallest of things can help take your mind off the heaviness of the situation.
I talked to Eric early in the afternoon. He was going to go stay with his brother Stevie for the week. It is such a comfort having a responsible young man that we don't have to worry about and who is being such a big help back home. There have been so many people reaching out to help in any way they can. We are so appreciative of everyone's offers. It really means a lot to know the little things at home are under control.
Late in the day Chelsea's blood pressure started to hold at a level slightly higher than the medical team liked. The nurses and doctors collaborated to ty to determine the cause. And as usual with Chels, nothing they were trying was having much impact. In fact, one medication made her flush like a sunburn. Chelsea, you are one complicated girl! Finally by late evening they got the right mix of medications and everything settled back to a good level. Whew!
As I stated earlier, this would be the best Father's Day ever if we could get through the day with Chelsea continuing to improve. I can't imagine ever having a better one.
Sunday, June 19, 2011
Day 2 - June 18th
We saw Dr Bond on Day 2 early in the morning. He was also one of the surgeons who operated on Chelsea. There was a concern over blood coming out of the NG tube that indicated some blood from Chelsea's new stomach. She did receive some blood product overnight to compensate and her urine output had slowed too (Sorry Chels, hope this is not too much information to share about your bodily functions!)
But by lunch time, things had started to trend positively. Blood from NG tube had slowed quite a bit and urine increased so that was great news! Chels was doing exactly what they hoped that she would do at this stage of the transplant. She was resting comfortably and showing no signs of any other problems.
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We had a new ICU nurse on Day 2, Colleen. She is also fantastic and kept us informed of everything she was doing and why she was doing it. The folks here at Childrens are awesome. For those of you who know me well, you know I can be a little "assertive" when it comes to Chelsea's care. But the Mama Bear in me has not had to come out - not even a bit! Everyone is handling our baby with kid gloves. So that is good for all of us :).
We also landed a room at Ronald McDonald house which is also super news. We now have a place to shower and a place to rest while being less than 5 min from her room. We took our stuff over and got the tour of the facility. We can stay here indefinitely while Chelsea is in-patient and out-patient.
Day 2 turned out to be a pretty quiet day. I called Chelsea's youth pastor Matt Barcalow and found out he will be in Pittsburgh all this week on a special Youth trip. What a great coincidence! Matt baptized Chelsea last summer and is very special to her. He may try to pop over if she gets out of ICU before he leaves town.
Michael also sent some of his music so that we could play it for Chelsea while she is sedated. I am sure that she can hear it although she can't show it.
An excellent Day 2 and we continue to thank God for all his blessings!
But by lunch time, things had started to trend positively. Blood from NG tube had slowed quite a bit and urine increased so that was great news! Chels was doing exactly what they hoped that she would do at this stage of the transplant. She was resting comfortably and showing no signs of any other problems.
\
We had a new ICU nurse on Day 2, Colleen. She is also fantastic and kept us informed of everything she was doing and why she was doing it. The folks here at Childrens are awesome. For those of you who know me well, you know I can be a little "assertive" when it comes to Chelsea's care. But the Mama Bear in me has not had to come out - not even a bit! Everyone is handling our baby with kid gloves. So that is good for all of us :).
We also landed a room at Ronald McDonald house which is also super news. We now have a place to shower and a place to rest while being less than 5 min from her room. We took our stuff over and got the tour of the facility. We can stay here indefinitely while Chelsea is in-patient and out-patient.
Day 2 turned out to be a pretty quiet day. I called Chelsea's youth pastor Matt Barcalow and found out he will be in Pittsburgh all this week on a special Youth trip. What a great coincidence! Matt baptized Chelsea last summer and is very special to her. He may try to pop over if she gets out of ICU before he leaves town.
Michael also sent some of his music so that we could play it for Chelsea while she is sedated. I am sure that she can hear it although she can't show it.
An excellent Day 2 and we continue to thank God for all his blessings!
Day 1 - June 17th
Friday was a long day in ICU. We were able to stay with her in her room as much as we liked but felt we were probably in the way of the Staff more than anything else. Chelsea's first ICU nurse was Nicole and she stayed with Chelsea until 7pm that night. She is an adorable girl and was so helpful and nice. She was extra gentle with Chelsea and made sure she told her everything that she was doing before she touched her. (Just the way Chelsea would want if she was awake!).
Chelsea did great on Day 1 - there were no issues that cropped up that were out of the ordinary or unexpected by the Transplant Team.
Bryan and I tried to get a room at the Ronald McDonald house, which is connected to the hospital. Families of patients can stay there if they are out of town etc and they have 60 rooms that are like small apartments. We got on the list but there were no rooms available. By Friday night we had not had any sleep since Tuesday night so we were getting pretty brain dead. And I dont think we smelled too good either - well, at least Bryan didn't. So we booked a room at a nearby hotel to spend the night.
Chelsea, dont be mad when you read this. We really didnt want to leave you for even a minute but thought this would be the best time to catch some sleep while you were completely sedated. The ICU nurse had our cell phone numbers to call in an emergency so we took the shuttle to the hotel around 7pm.
We turned on a Seinfeld episode and I never heard Bryan turn the TV off at the end of the show. We were both exhausted and had a pretty decent night sleep. We got up the next morning early to take the first shuttle back to the hospital and to see what Day 2 would bring.
Chelsea, I have to tell you how many people were calling and texting to find out your status. Your dad, Eric, Kelly, Stevie & April, Sherry, Ruby, Nick, Bill, Michael, Christine, Steph and others were all concerned and wanted updates. Dr. Sandberg called to check on you too and was actually the one who suggested this blog. You are very loved by all!!
Chelsea did great on Day 1 - there were no issues that cropped up that were out of the ordinary or unexpected by the Transplant Team.
Bryan and I tried to get a room at the Ronald McDonald house, which is connected to the hospital. Families of patients can stay there if they are out of town etc and they have 60 rooms that are like small apartments. We got on the list but there were no rooms available. By Friday night we had not had any sleep since Tuesday night so we were getting pretty brain dead. And I dont think we smelled too good either - well, at least Bryan didn't. So we booked a room at a nearby hotel to spend the night.
Chelsea, dont be mad when you read this. We really didnt want to leave you for even a minute but thought this would be the best time to catch some sleep while you were completely sedated. The ICU nurse had our cell phone numbers to call in an emergency so we took the shuttle to the hotel around 7pm.
We turned on a Seinfeld episode and I never heard Bryan turn the TV off at the end of the show. We were both exhausted and had a pretty decent night sleep. We got up the next morning early to take the first shuttle back to the hospital and to see what Day 2 would bring.
Chelsea, I have to tell you how many people were calling and texting to find out your status. Your dad, Eric, Kelly, Stevie & April, Sherry, Ruby, Nick, Bill, Michael, Christine, Steph and others were all concerned and wanted updates. Dr. Sandberg called to check on you too and was actually the one who suggested this blog. You are very loved by all!!
A Hard Day's Night
I left the story with us thinking Chelsea was facing a 6-7 hour operation. We kissed her good-bye at 5:30pm on Thursday night June 16 at the OR. We received an update around 10pm that Dr Soltys was on the way back with the organs and that they looked great. So we figured with that update that 6-7 hours was probably too optimistic since we were already 4 hours in and the organs were not here.
Bryan and I tried to rest but our bouts of crying kept getting in the way - we were both worried about how she was doing. We alternated waiting in the family waiting room and her hospital room since the Operating Room nurse had our cell phone numbers to call. The time between updates was getting very lengthy so Bryan called to the OR to have Erin (OR nurse) to go in and ask what was happening. Around 2am they said things were progressing but not all of the organs were placed yet. The surgeons were still working hard to finish the operation.
At 6:30 am (13 hours in), Dr. Sindhi, one of the surgeons, came out to tell us that a complication had cropped up after 2am; the new organs they placed had moved and constricted a vein. The whole surgical team was called back in. The surgeons solved the issue but it had been tricky. He was very positive that things were going well and that Dr. Soltys was closing out the operation in another hour or so.
We saw Dr Soltys around 8am and he was very optimistic on how the operation had gone. In fact he acted like it was just a normal day in his life, no big deal about the problem they had encountered when the organs moved. We were surprised how energetic he was, even though he must have been up all night working on our little angel.
We got to see Chelsea in ICU around 10am. They had prepared us that she was going to be under very deep sedation for several days. In fact she would be paralyzed by medication in order to keep her from moving so as not to disturb her new organs. Chelsea would also be intubated so that a machine could help her breathe during this time.
We were expecting the worse when we saw her - that she would look puffy, bloated and unlike herself. And although she was hooked up to what seemed like a million machines and tubes, she looked beautiful to us. She was not puffy in the least and looked just like Sleeping Beauty.
The ICU plan was that she would stay sedated until the transplant team was ready to do a follow-up procedure for complete closure. This could be several days away.
Bryan and I kept all of her family and friends updated of her situation and Chelsea was put on many prayer lists. We were all thankful to God for looking after her! And thankful to the donor and her family for their incredible sacrifice to help Chelsea. Whoever they are, they are amazing people and we are so sorry for their loss. It is too sad for words that in order for Chelsea to have a chance for a better life that someone else loses theirs.
Bryan and I tried to rest but our bouts of crying kept getting in the way - we were both worried about how she was doing. We alternated waiting in the family waiting room and her hospital room since the Operating Room nurse had our cell phone numbers to call. The time between updates was getting very lengthy so Bryan called to the OR to have Erin (OR nurse) to go in and ask what was happening. Around 2am they said things were progressing but not all of the organs were placed yet. The surgeons were still working hard to finish the operation.
At 6:30 am (13 hours in), Dr. Sindhi, one of the surgeons, came out to tell us that a complication had cropped up after 2am; the new organs they placed had moved and constricted a vein. The whole surgical team was called back in. The surgeons solved the issue but it had been tricky. He was very positive that things were going well and that Dr. Soltys was closing out the operation in another hour or so.
We saw Dr Soltys around 8am and he was very optimistic on how the operation had gone. In fact he acted like it was just a normal day in his life, no big deal about the problem they had encountered when the organs moved. We were surprised how energetic he was, even though he must have been up all night working on our little angel.
We got to see Chelsea in ICU around 10am. They had prepared us that she was going to be under very deep sedation for several days. In fact she would be paralyzed by medication in order to keep her from moving so as not to disturb her new organs. Chelsea would also be intubated so that a machine could help her breathe during this time.
We were expecting the worse when we saw her - that she would look puffy, bloated and unlike herself. And although she was hooked up to what seemed like a million machines and tubes, she looked beautiful to us. She was not puffy in the least and looked just like Sleeping Beauty.
The ICU plan was that she would stay sedated until the transplant team was ready to do a follow-up procedure for complete closure. This could be several days away.
Bryan and I kept all of her family and friends updated of her situation and Chelsea was put on many prayer lists. We were all thankful to God for looking after her! And thankful to the donor and her family for their incredible sacrifice to help Chelsea. Whoever they are, they are amazing people and we are so sorry for their loss. It is too sad for words that in order for Chelsea to have a chance for a better life that someone else loses theirs.
Saturday, June 18, 2011
The Wait
We met with the surgeons at 10am and the gameplan was laid out. Dr. Soltys did a quick peek at her tummy as he was going to be the one to bring back the organs and wanted to have a good idea of size. He was leaving Pittsburgh at 11am for the donor trip and thought we would probably start the operation some time around 3-4pm. The donor organs were coming from out of state so there was a bit of an unexpected wait once were were admitted. It made for a long and emotional day.
As it turned out, they took Chelsea to OR around 5:30pm on the 16th. Chelsea made the anesthesiologist wait while she made a quick phone call to Michael, who had just got off of work at 5:30pm.
We headed off to the waiting room, expecting a 6-7 hour operation. But boy, were we wrong!
As it turned out, they took Chelsea to OR around 5:30pm on the 16th. Chelsea made the anesthesiologist wait while she made a quick phone call to Michael, who had just got off of work at 5:30pm.
We headed off to the waiting room, expecting a 6-7 hour operation. But boy, were we wrong!
The Trip
Within minutes of the call, we went into action. Bryan and Matt had to load the boat from the marina in pitch dark and pelting rain. They did that in record time! By the time they were back, Chelsea and I were all packed and ready to go. The ride home was slowed as an electrical storm moved in. Bryan was tensed over the steering wheel the entire trip. Honestly the whole ride back seemed dreamlike. We were all nervous, scared, and excited!
Once we hit Charlotte, we ran by the house to drop off the boat and pick up our pre-packed bags to take to Pittsburgh. Chelsea also had an opportunity to see her boyfriend Michael and his sisters for a few short minutes before we had to catch the flight.
Bank of America had graciously offered to fly us on the corporate jet and the flight crew was so awesome to us! The flight was incredibly fast to boot; we arrived at the hangar in Charlotte a few minutes before 7am, and we were on the ground at Allegheny County airport by 8am! I think some angels were helping push the plane because it was the fastest trip we have ever been on.
Once we landed, an ambulance was waiting to drive us to Children's Hospital. We arrived before 9am and were immediately admitted.
Once we hit Charlotte, we ran by the house to drop off the boat and pick up our pre-packed bags to take to Pittsburgh. Chelsea also had an opportunity to see her boyfriend Michael and his sisters for a few short minutes before we had to catch the flight.
Bank of America had graciously offered to fly us on the corporate jet and the flight crew was so awesome to us! The flight was incredibly fast to boot; we arrived at the hangar in Charlotte a few minutes before 7am, and we were on the ground at Allegheny County airport by 8am! I think some angels were helping push the plane because it was the fastest trip we have ever been on.
Once we landed, an ambulance was waiting to drive us to Children's Hospital. We arrived before 9am and were immediately admitted.
THE Call
It was a dark and stormy night....
No kidding, it really was! But let me start at the beginning.
Chelsea was on a family vacation at Fripp Island, SC. We all arrived around 4pm on Saturday June 11th. And the first indication that we were going to have an interesting family reunion came at 7:30pm. The transplant team had contacted Chelsea's aunt Sherry to find us - there was a possible donor and Chelsea was put on alert. Since this was the first alert call that we had in over a year, the entire family was on pins and needles until we received notification that the donor was not viable a few hours later.
The vacation continued even though Chelsea was really not feeling great. She was having some stomach issues and was not able to fully participate in vacation activities. She did have fun cooking with her uncle Bill and riding around the island on a golf cart.
Now back to the storm! Wednesday evening seemed uneventful, Chelsea went to Karaoke with Kelly, Matt, Daniel, Mae and Eric. A pretty heavy rain had started and everyone went off to bed by midnight. A call at 12:30am on June 16th changed all that. Kim, Chelsea's transplant coordinator, said a very good donor match for Chelsea was found and for us to come right away to Pittsburgh. This was very different from the previous calls we have had, where we were put on alert for a few hours before being called off. This call took us to a whole new level - we were going to Pittsburgh!
No kidding, it really was! But let me start at the beginning.
Chelsea was on a family vacation at Fripp Island, SC. We all arrived around 4pm on Saturday June 11th. And the first indication that we were going to have an interesting family reunion came at 7:30pm. The transplant team had contacted Chelsea's aunt Sherry to find us - there was a possible donor and Chelsea was put on alert. Since this was the first alert call that we had in over a year, the entire family was on pins and needles until we received notification that the donor was not viable a few hours later.
The vacation continued even though Chelsea was really not feeling great. She was having some stomach issues and was not able to fully participate in vacation activities. She did have fun cooking with her uncle Bill and riding around the island on a golf cart.
Now back to the storm! Wednesday evening seemed uneventful, Chelsea went to Karaoke with Kelly, Matt, Daniel, Mae and Eric. A pretty heavy rain had started and everyone went off to bed by midnight. A call at 12:30am on June 16th changed all that. Kim, Chelsea's transplant coordinator, said a very good donor match for Chelsea was found and for us to come right away to Pittsburgh. This was very different from the previous calls we have had, where we were put on alert for a few hours before being called off. This call took us to a whole new level - we were going to Pittsburgh!
Chelsea's Journey
This blog was created to capture Chelsea's story as she goes through a long awaited multi-organ transplant. And the blog will also serve as a way to update her friends and family as she progresses. We will update this blog as frequently as we can.
Bryan and I also want Chelsea to have a record of what transpired when she was out of commission. Maybe we will get some new respect as parents (but knowing Chelsea, probably not).
So the story begins with the next post.....
Bryan and I also want Chelsea to have a record of what transpired when she was out of commission. Maybe we will get some new respect as parents (but knowing Chelsea, probably not).
So the story begins with the next post.....
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