Kayli had her weekly appointment with her surgeon today. Her numbers are looking fabulous! All of her liver function tests and on the downtrend and in a wonderful way! She is feeling super great and has even been out and about normally. She is continuing to have labs drawn every tuesday and thursday. Dr Mieles has reduced his direct appointments with her to Tuesdays only, but she still has labs drawn on thursdays. More fabulous news today...
Dr Mieles said that at next Tuesdays appointment, he will write release orders for her to go back to school!!! CAN YOU BELIEVE IT??? I am in complete shock. It is so amazing, most people spend months in the hospital following a liver transplant, and yet my child will probably be going back to school almost exactly a month after having a LIVER TRANSPLANT. It still seems SO surreal to me. I PRAISE GOD every moment for taking care of my beautiful daughter, how brave and strong she is. I used to complain about her stubborness...now I am thankful she is so strong-willed. I only pray now that God will continue to keep her strong and healthy, will keep or family strong enough to overcome our financial struggles that have resulted from this situation, and keep Kayli focused on not only her continued recovery but also her educational growth...(schoolwork, grades, etc LOL) as well as her continued growth in theater & performance arts!
Thank thank thank you all so so much for all of your love, support, prayers, words of encouragement, and all that everyone has done and CONTINUES to do. May you all be very Blessed. We love you all and know that we still need all your love and prayers! Will continue to post here Kayli's success stories! :)
Also- because it is a cause that is important to Kayli and to us, her school- Oak Ridge High School, will be holding another Replenishment Blood Drive in her honor. Please see the info at the link below:
http://orhs.conroeisd.net/ORHS%209th%20Grade%20Campus/pdf/Kayli_poster%20Oak%20Ridge.pdf
Tuesday, January 26, 2010
Monday, January 25, 2010
CYT Houston's Seussical Jr RESCHEDULED!!
This past weekend, the show that Emily was in had to be cancelled because of a malfunction in the fire curtain at the theater. The kids were all pretty disappointed, they live for the performances. Not to mention, the show was amazingly good and LOTS of people missed out on it. Staff had to turn MANY very disappointed children and families away at the door, it was heartbreaking.
Good news, the show has officially been rescheduled, and we hope to fill the theater this time! The kids are THRILLED they will get to perform their show again and would love to see you there! I can't tell you enough how wonderful the show is. Contact CYT Houston to order tickets, and be sure you tell them you heard about it from Kayli Curda. Visit their website at http://www.cythouston.org/ or call the box office at 832-338-5869.
Emily Lou Who, Kelyn Lou Who, & Paige Lou Who
HA! HA!
Emily Lou Who gets a hug from The Grinch!
Good news, the show has officially been rescheduled, and we hope to fill the theater this time! The kids are THRILLED they will get to perform their show again and would love to see you there! I can't tell you enough how wonderful the show is. Contact CYT Houston to order tickets, and be sure you tell them you heard about it from Kayli Curda. Visit their website at http://www.cythouston.org/ or call the box office at 832-338-5869.
Emily Lou Who, Kelyn Lou Who, & Paige Lou Who
HA! HA!
Emily Lou Who gets a hug from The Grinch!
Tuesday, January 19, 2010
First week at home...
Well Kayli continues to dazzle us all with her amazingly quick recovery from her liver transplant. A LIVER TRANSPLANT...it sounds so weird for me to even say out loud. She had her first follow up appointment last Thursday where they took out about half of her staples, and adjusted her medication dosage. She had another follow up today, they drew labs and took out her remaining staples! I am waiting for Mark and Kayli to get home so that I can see how she looks. I didn't go today because I am sick. I am sure I only have a head cold and its certainly because my body is tired. Hopefully I will be able to kick this pretty quickly so as NOT to get Kayli sick, and I am trying to confine myself to my room so I do not spread my germs around the house.
Kayli has been pretty active in her week since being home. She has gone to the mall, Wal-mart, Target. She hung out up at the theater with us for awhile as we have have been busy with Emily's theater production...which is completely an amazing show!! (You should all see it and yes I am shamelessly plugging the show!!) Sunday evening she even went to dinner with the cast at Red Robins and had so much fun and realized how much she misses all of her CYT friends! She had her friend Cristine spend the night and yesterday they went to Market street for lunch and then met up with some other friends to see the movie The Lovely Bones, which apparently they all hated. :( She looks beautiful, and it is just so hard to believe what she has been through in the past 2 months.
She will continue with her Homebound schooling for now, which starts again today. But the doctor noted today that there is a POSSBIILITY he may release her to go back to school sooner than March 1st IF she continutes to take care of herself and improve the way she has so far.
This week she will be able to start back to CYT classes and next week is the Showcase, where if all goes as planned, Kayli will perform in a skit and a monologue on stage. :)
--->Kayli & Cristine hang around the house.
Band friends Liz, Synnamyn, & Leanna all pay Kayli a visit and bring her Taco Bell.
Kayli stops in at the last Seussical dress rehearsal to tell her CYT friends to Break A Leg!
...and gets a much needed hug from her favorite dance teacher Miss Ruth...who is now ENGAGED! :)
She also got to spend some time with her her close friend Rachel Adamo. :)
Red Robin's was a ton of fun, and a ton of people...:) Kayli took off her mask just long enough to enjoy a coke and a burger...
...and share a beautiful smile with her favorite drama teacher Mrs Julia!!!
Kayli has been pretty active in her week since being home. She has gone to the mall, Wal-mart, Target. She hung out up at the theater with us for awhile as we have have been busy with Emily's theater production...which is completely an amazing show!! (You should all see it and yes I am shamelessly plugging the show!!) Sunday evening she even went to dinner with the cast at Red Robins and had so much fun and realized how much she misses all of her CYT friends! She had her friend Cristine spend the night and yesterday they went to Market street for lunch and then met up with some other friends to see the movie The Lovely Bones, which apparently they all hated. :( She looks beautiful, and it is just so hard to believe what she has been through in the past 2 months.
This week she will be able to start back to CYT classes and next week is the Showcase, where if all goes as planned, Kayli will perform in a skit and a monologue on stage. :)
--->Kayli & Cristine hang around the house.
Band friends Liz, Synnamyn, & Leanna all pay Kayli a visit and bring her Taco Bell.
Kayli stops in at the last Seussical dress rehearsal to tell her CYT friends to Break A Leg!
She also got to spend some time with her her close friend Rachel Adamo. :)
...and share a beautiful smile with her favorite drama teacher Mrs Julia!!!
Tuesday, January 12, 2010
What's next for Kayli? (& us)
As you may have read earlier Kayli came home today. She was so glad to be home, one of the first things she did was take a shower. She hung around the house this afternoon and then had her first visitors here at home. Tonight she is in her own bed, and hopefully will get some good rest.
The next few weeks will be a tough adjustment for Kayli (and us). She is on a pretty strict medicine regime, has a busy doctor appointment schedule, and has alot of social limitations she has to adhere to. The only physical limitations for now is she cannot lift or pickup anything over 15 lbs for the next few weeks and no running. Everything else is at her comfort level. Of course no sports or intense dancing for awhile. But as far as exercising, going up and down stairs, all other activities are as she can tolerate. She may be able to go back to softball as early as next year, but this will totally be up to her. Marching band will be a go by the time next marching season comes around. Her liver coordinator, Mikita did say it might be a few weeks before she can play her saxophone again, will just take her time to get used to blowing strong, solid air through the horn again, not really a physical limitation.
Social limitations will be the hardest for Kayli. She does need to be careful for the next few weeks, (with it being flu season), because of her suppressed immune system, she is more likely to catch illnesses. So for the next few weeks she will need to wear a mask when in crowded areas or around sick people, at the mall, wal-mart, etc. She also cannot clean up after animals (I know that breaks her heart), but she can also not love on her sweet boy kitty Lancelot for awhile. Eventually she will be able to, but for the time being he can't sleep with her, which is one of the main reasons she was ready to come home. (She cannot lift him anyways as he is over the 15lb weight limit LOL) I laugh but it's kind of sad for her as she loves her kitty alot. Kayli will be able to participate in CYT, since a large portion of the kids involved are home schooled, but she will not be able to go back to school for awhile. The doctors have written orders for Kayli to stay on the Homebound program through school, and we will meet with the school and homebound coordinator again on Thursday to go over things. She may be allowed to go back to school as early as March 1st or possibly April 1st depending on her progress. She said her goal is March 1st, and the social aspect of not going to school is hurting her worse than anything at this point. She hasn't been in school since the end of October, and that more than anything I think as been the hardest for her. It could really play a big part in her recovery. We talked to her today about the possibility of repeating the 9th grade if the Homebound teachers cannot get her caught up, and she almost burst into tears. I only pray that doesn't happen.
Her medications and doctors visits are pretty crazy right now. We will be traveling to the medical center twice a week for several months, every Tuesday and Thursday at 8am, and Kayli will have labs drawn each time. After 6 months that may decrease. The doctor said eventually, over the next few months/years, they will wean her down to 2 probably 3 medications. But for right now there is about 8 different meds she is taking. The two main medications she HAS to take, the anti-rejection drugs, are not fully covered by our insurance, therefore our co-pay is $250 for a month supply...each. The rest of the meds are going to run about $100 per month total...so while $7200 per year is not quite as bad as the originally quoted $10K, it still puts quite a damper on the budget, a big one. Alot of changes will need to be made. I will be going back to work tomorrow, which is kind of hard as a mother- I want to be able to remain home and care for my child...but I do not have benefits with my job at this time and have already missed alot of work. Mark does however, so he will be filing for FMLA, and he will remain home with Kayli as long as he can...until he exhausts his vacation and sick time which he has a total of about 6 days worth of sick time and 22 days of vacation, and will get us through the first month. After that, we may only have a couple of weeks gap until she goes back to school, as long as she is allowed to go back to school March 1st as suggested. However, if an illness occurs, we're kind of stuck and the also an adult has to be here when the Homebound teachers are here.
All I can say is, at this point...we are just grateful for the precious gift Kayli has been given, and somehow, someway the rest will work itself out. We have faith that the Lord will continue to Bless us, protect us, and guide us through this. Please just continue to pray for successful healing for Kayli, and strength for our family.
I think she is ready to go home... :)
FYI- she did accomplish both of these goals today!
While she had many wonderful nurses while at Children's Memorial Hermann, Heidi was by far her favorite. (Heidi was also the nurse that played hangman with her last week)
In tha car...GOING HOME! YAY!
Her first visitors at home, Kayli's friends Erin & Paige and their parents brought an awesome meal of PIZZA & hot wings!! YUM!!! We ate, watched American Idol, and looked pictures from my Senior year of High School so I could show the girls what a Sadie Hawkins dance was. :)
Kayli's "pharmacy". There are pills in every box except tonights bedtime, and there are at least 12 pills in both the yellow and purple boxes...the 3 bottles to the right are additional meds that are "as needed".
The next few weeks will be a tough adjustment for Kayli (and us). She is on a pretty strict medicine regime, has a busy doctor appointment schedule, and has alot of social limitations she has to adhere to. The only physical limitations for now is she cannot lift or pickup anything over 15 lbs for the next few weeks and no running. Everything else is at her comfort level. Of course no sports or intense dancing for awhile. But as far as exercising, going up and down stairs, all other activities are as she can tolerate. She may be able to go back to softball as early as next year, but this will totally be up to her. Marching band will be a go by the time next marching season comes around. Her liver coordinator, Mikita did say it might be a few weeks before she can play her saxophone again, will just take her time to get used to blowing strong, solid air through the horn again, not really a physical limitation.
Social limitations will be the hardest for Kayli. She does need to be careful for the next few weeks, (with it being flu season), because of her suppressed immune system, she is more likely to catch illnesses. So for the next few weeks she will need to wear a mask when in crowded areas or around sick people, at the mall, wal-mart, etc. She also cannot clean up after animals (I know that breaks her heart), but she can also not love on her sweet boy kitty Lancelot for awhile. Eventually she will be able to, but for the time being he can't sleep with her, which is one of the main reasons she was ready to come home. (She cannot lift him anyways as he is over the 15lb weight limit LOL) I laugh but it's kind of sad for her as she loves her kitty alot. Kayli will be able to participate in CYT, since a large portion of the kids involved are home schooled, but she will not be able to go back to school for awhile. The doctors have written orders for Kayli to stay on the Homebound program through school, and we will meet with the school and homebound coordinator again on Thursday to go over things. She may be allowed to go back to school as early as March 1st or possibly April 1st depending on her progress. She said her goal is March 1st, and the social aspect of not going to school is hurting her worse than anything at this point. She hasn't been in school since the end of October, and that more than anything I think as been the hardest for her. It could really play a big part in her recovery. We talked to her today about the possibility of repeating the 9th grade if the Homebound teachers cannot get her caught up, and she almost burst into tears. I only pray that doesn't happen.
Her medications and doctors visits are pretty crazy right now. We will be traveling to the medical center twice a week for several months, every Tuesday and Thursday at 8am, and Kayli will have labs drawn each time. After 6 months that may decrease. The doctor said eventually, over the next few months/years, they will wean her down to 2 probably 3 medications. But for right now there is about 8 different meds she is taking. The two main medications she HAS to take, the anti-rejection drugs, are not fully covered by our insurance, therefore our co-pay is $250 for a month supply...each. The rest of the meds are going to run about $100 per month total...so while $7200 per year is not quite as bad as the originally quoted $10K, it still puts quite a damper on the budget, a big one. Alot of changes will need to be made. I will be going back to work tomorrow, which is kind of hard as a mother- I want to be able to remain home and care for my child...but I do not have benefits with my job at this time and have already missed alot of work. Mark does however, so he will be filing for FMLA, and he will remain home with Kayli as long as he can...until he exhausts his vacation and sick time which he has a total of about 6 days worth of sick time and 22 days of vacation, and will get us through the first month. After that, we may only have a couple of weeks gap until she goes back to school, as long as she is allowed to go back to school March 1st as suggested. However, if an illness occurs, we're kind of stuck and the also an adult has to be here when the Homebound teachers are here.
All I can say is, at this point...we are just grateful for the precious gift Kayli has been given, and somehow, someway the rest will work itself out. We have faith that the Lord will continue to Bless us, protect us, and guide us through this. Please just continue to pray for successful healing for Kayli, and strength for our family.
I think she is ready to go home... :)
FYI- she did accomplish both of these goals today!
While she had many wonderful nurses while at Children's Memorial Hermann, Heidi was by far her favorite. (Heidi was also the nurse that played hangman with her last week)
In tha car...GOING HOME! YAY!
Her first visitors at home, Kayli's friends Erin & Paige and their parents brought an awesome meal of PIZZA & hot wings!! YUM!!! We ate, watched American Idol, and looked pictures from my Senior year of High School so I could show the girls what a Sadie Hawkins dance was. :)
Kayli's "pharmacy". There are pills in every box except tonights bedtime, and there are at least 12 pills in both the yellow and purple boxes...the 3 bottles to the right are additional meds that are "as needed".
KAYLI COMING HOME!!! :D
Before I even had a chance to get down to the hospital today, Mark called and said that the doctor had removed Kayli's central line, and they were packing up and on their way out...of the hospital!! SO THRILLED!! He said they were going to stop on their way home and grab some Taco Bell for lunch...HA HA! I told him to make sure and take pictures!
I am so happy that I will have my family under one roof tonight. PRAISE God!
*****KAYLI IS HOME*****
I am so happy that I will have my family under one roof tonight. PRAISE God!
*****KAYLI IS HOME*****
Monday, January 11, 2010
starting out the week
Kayli got good news this morning. Her liver function tests are looking much better, and definately moving in the right direction. They have upped her dosages of steroids. The biopsy over the weekend confirmed that the slight rejection she was experiencing was simply due to medication levels. Dr Mieles said that he would be more worried if she wasn't showing any rejection, that would mean her immune system was not working at all. This rejection just shows that her immune system is stronger than thought and they will just need to carefully watch her medication levels to ensure they keep her immune system suppressed. They hope to be able to release her from the hospital tomorrow, Tuesday. She is doing very well. This morning she got up, cleaned her hospital room, made her bed, and even had a tiff with a nurse regarding her medication schedule (by the way she was right and the nurse was wrong). She is something else... LOL
She had a wonderful Sunday, with very welcome visitors, and today she was in a much brighter mood. It also may have helped that she actually slept last night. They have prescribed her 5mg of Ambien to take at bedtime while in the hospital as she wasn't sleeping well at all. She realized last night that it's not good to try and fight it once you take it.
Emily adores her big Sissy! :)
Kayli and her amazing friend Ryan, he has definately helped her get through this. He's adorable, he was afraid he would hurt her.
She had a wonderful Sunday, with very welcome visitors, and today she was in a much brighter mood. It also may have helped that she actually slept last night. They have prescribed her 5mg of Ambien to take at bedtime while in the hospital as she wasn't sleeping well at all. She realized last night that it's not good to try and fight it once you take it.
Emily adores her big Sissy! :)
Kayli and her amazing friend Ryan, he has definately helped her get through this. He's adorable, he was afraid he would hurt her. 
Saturday, January 9, 2010
small bump in the road
We have had a little hiccup this morning. Kayli will not be going home today. One of the doctors came by a moment ago and told Kayli and I that her labwork this morning showed elevated LFT's, liver function enzymes. This is a small beginning sign of rejection. They have a feeling it is because of the lowered medications dosages over the past couple of days. Her platelet count is also low. So, today they will put her back on IV fluids, she will be receiving another blood transfusion (platelets), and they will be doing a liver biopsy later this afternoon to try and determine for sure what is going on, and hopefully they can catch it early enough before the rejection goes into full swing. She is understandably upset- but in hindsight I am relieved they did not send her home yesterday or they would not have known this was happening...now just to convince her of that.So, at the earliest she will be here til Monday. Please keep her in your prayers.
Friday morning, Kayli's friends Rachel and Elijah paid her a visit with I-hop french toast in hand! She loved it! Rachel's snapped a photo- even 5 days post liver transplant surgery she looks beautiful!!Friday, January 8, 2010
Wed-Fri
So it's been a couple days since I specifically updated on Kayli. She is an amazing child and she has everyone here completely in awe. She has such a strong will to recover and be normal! My days are starting to blend together, so I have to keep reminding myself what has happened and when...
So on Tuesday evening Kayli moved out of ICU. Wednesday, she continued her amazing recovery. She was able to order real food for breakfast, and had french toast. She really enjoyed it and ate 2 whole pieces!
Physical therapy came by and took Kayli on a short walk, they went up and down a flight of stairs!! Kayli did awesome as usual, and even walked at a normal pace. It was a very good morning, though after her trip up the stairs she was a bit tired.
Just before lunch she received a surprise visitor, Daddy brought Emily to see her big sister!! This is the first time they had seen eachother since we got the call on Saturday that a liver was available. Emily has been so worried, and hasn't seen her sister for herself, so this was very good for both of them. Daddy took her to school that morning, but she was not really intrested in going school, so he picked her up shortly after dropping her off for the special treat of spending the day with her family. Sometimes it is easy to forget how this all has affected her. We have done our best to try to keep up with her and make sure she does not miss any of her theater rehearsals and such, but she is such a sweet, understanding child that its easy sometimes just to shuffle her to the side which is a horrible way to think about it, but it happens. Bad mommy, I forgot to get a picture of my babies together, but here is a picture that Emily took herself. The bear on the left is a bear that Emily picked out and stuffed for Kayli at Build-A-Bear during 1 of her November hospital stays. When you press the paw, it's Emily's voice that says "Get well soon Sissy, I love you". The bear on the right is Emily's Aeropostle bear that Santa Claus brought her. Emily arranged this scene, and apparently Aero bear is reading the puppy book and Kay's bear is taking notes...just a guess. :D
Wednesday evening, the nurse washed Kayli's hair for her, and she began to feel a little human again. She changed out of her hospital gown and into a t-shirt, and put on a little eye make-up. She was then visited by Uncle Robert, Aunt Claudia, and her cousins Joshua & Justo. Mark said it was a nice visit, but Kayli was definitely tired after such a busy day.
I missed all of Thursday, as I stayed home to prepare our house for Kayli's homecoming and run some errands. Lancelot, Lily, & Safire seemed to enjoy me being home, and I took Lance & Lily to the doggy/kitty day spa for baths. They came home looking and smelling GREAT and both seemed to even feel special! Safire didn't go because she is short-haired and doesn't shed, and seems to keep herself very clean. For those who don't know, Lily is our dog, Lancelot is Kayli's 22 lb maine coon cat and Safire is Emily's new little kitty she got for her birthday in September.
Mark said Kayli continued her amazing recovery all day on Thursday. She walked several times, was doing pretty much everything on her own, and had put on make-up again. Dr Mieles removed one of her wound drains from her abdomen and they took her off of IV fluids and cut back on some of her medications. She had visits from our friend Robin S and Greg (Aunt Sunny's brother). They had a good day.
Today is Friday, and though they had predicted Kayli would go home today, the doctors decided to keep her just one more day as a precaution. Nothing wrong with her at all, but they changed one of her medication dosages and needed to keep her one more day to monitor how her blood levels respond to the dosage change. I'm ok with this, though she was disappointed- definitely better to be safe than sorry. Dr Mieles certainly didn't want to keep her, and did all he could not to, but in the end it may just have been for the better. This morning she was visited by her great friends Rachel and Elijah. You may remember them, they were at Dickens on the Strand with us back in December. They brought Kayli a tasty breakfast of french toast from I-Hop, Kayli's favorite! She scarfed it down apparently!
Kayli's nurse for the past 3 days has been Heidi, and she is awesome! She was actually Kayli's nurse one day back during her first hospital stay in November. Today, they played a round of "Twilight Hangman", and it really seemed to cheer Kayli up. They had fun today, and as you see from the pictures Kayli is now an expert on all of her monitoring equipment and can connect and disconnect as she needs to, and does so quite often. This evening is staying very quiet. Greg and his fiancee Carley are here now visiting, and its been a really nice and relaxing visit. They brought a movie that we all watched together and now we are relaxing sharing band stories! :)
Excited about going home tomorrow! Everythign is looking great right now, Kayli looks so wonderful and is feeling pretty good.
I have had many friends, family, and supporters ask "what's next for kayli?" Tomorrow I will post an update and try to answer those questions. Thank you again for all of your prayers ans well wishes.
Physical therapy came by and took Kayli on a short walk, they went up and down a flight of stairs!! Kayli did awesome as usual, and even walked at a normal pace. It was a very good morning, though after her trip up the stairs she was a bit tired. 
I missed all of Thursday, as I stayed home to prepare our house for Kayli's homecoming and run some errands. Lancelot, Lily, & Safire seemed to enjoy me being home, and I took Lance & Lily to the doggy/kitty day spa for baths. They came home looking and smelling GREAT and both seemed to even feel special! Safire didn't go because she is short-haired and doesn't shed, and seems to keep herself very clean. For those who don't know, Lily is our dog, Lancelot is Kayli's 22 lb maine coon cat and Safire is Emily's new little kitty she got for her birthday in September.
Mark said Kayli continued her amazing recovery all day on Thursday. She walked several times, was doing pretty much everything on her own, and had put on make-up again. Dr Mieles removed one of her wound drains from her abdomen and they took her off of IV fluids and cut back on some of her medications. She had visits from our friend Robin S and Greg (Aunt Sunny's brother). They had a good day.
Today is Friday, and though they had predicted Kayli would go home today, the doctors decided to keep her just one more day as a precaution. Nothing wrong with her at all, but they changed one of her medication dosages and needed to keep her one more day to monitor how her blood levels respond to the dosage change. I'm ok with this, though she was disappointed- definitely better to be safe than sorry. Dr Mieles certainly didn't want to keep her, and did all he could not to, but in the end it may just have been for the better. This morning she was visited by her great friends Rachel and Elijah. You may remember them, they were at Dickens on the Strand with us back in December. They brought Kayli a tasty breakfast of french toast from I-Hop, Kayli's favorite! She scarfed it down apparently!
I have had many friends, family, and supporters ask "what's next for kayli?" Tomorrow I will post an update and try to answer those questions. Thank you again for all of your prayers ans well wishes.
Wednesday, January 6, 2010
Prayers...
Everyone has prayed so diligently for Kayli and our family. We have been truly blessed and shown a miracle through the power of prayer. Kayli has been given a 2nd chance at life- and that is ever so more apparent to us now...and precious.
I am asking for prayers again, but not for us.
On Saturday upon arriving at the hospital after being called for the liver match, we were seated in the ICU waiting area waiting to be given a room. In the waiting area was a large family, and though we weren't sure of the circumstances, they were visibly upset, and my heart went out to them. Sunday morning shortly after Kayli's transplant was completed, we returned to the ICU waiting area and waited to be able to see Kayli. The family that had been there the day before was still there, and we overheard them discussing funeral arrangements for a 12 yr old boy, as well as running down the list of his organs they had been able to donate. I knew at that moment that the possibility this was Kayli's liver donor was a real one, and I prayed silently that this family be Blessed for their generosity whether that was the case or not. Later on Sunday afternoon, we realized the family had another child in the ICU they were here for, but by mid-day on Monday they were no longer in the waiting room. We did not learn what happened or the circumstances under which they were brought to the hospital. But my heart truly went out to this family.
Today, Mark learned through a co-worker that a friend of hers in the Houston area lost a son on Saturday. He was 12, going on 13 and had been in a car accident. His organs were donated to save the lives of 13 other children. I began to cry when I heard this. First of all, I can't help but feel this is the same family that was here with us this weekend. If so, they are a beautiful family and I am so sorry for their loss. They had an amazing support system here with them throughout the entire weekend and I was so touched by their presence. Secondly, everything in my soul is telling me that this is the family we owe our gratitude to. I cannot say for certain, and we may not ever be able to- but I feel it. The thought of having been able to see the family, even if I did not meet them, is overwhelming to me. Even if Kayli's new liver did not come from this beautiful young man, I still will pray diligently for the loss this family suffered and their generosity in a time of such sorrow. What an amazing and precious gift they have given to 13 other families, and mine is possibly one of them. Please join our family, and Kayli, in praying for this family, or any other family that may have made a 2nd chance at life possible for other children with their most generous gift. We owe them everything.
I am asking for prayers again, but not for us.
On Saturday upon arriving at the hospital after being called for the liver match, we were seated in the ICU waiting area waiting to be given a room. In the waiting area was a large family, and though we weren't sure of the circumstances, they were visibly upset, and my heart went out to them. Sunday morning shortly after Kayli's transplant was completed, we returned to the ICU waiting area and waited to be able to see Kayli. The family that had been there the day before was still there, and we overheard them discussing funeral arrangements for a 12 yr old boy, as well as running down the list of his organs they had been able to donate. I knew at that moment that the possibility this was Kayli's liver donor was a real one, and I prayed silently that this family be Blessed for their generosity whether that was the case or not. Later on Sunday afternoon, we realized the family had another child in the ICU they were here for, but by mid-day on Monday they were no longer in the waiting room. We did not learn what happened or the circumstances under which they were brought to the hospital. But my heart truly went out to this family.
Today, Mark learned through a co-worker that a friend of hers in the Houston area lost a son on Saturday. He was 12, going on 13 and had been in a car accident. His organs were donated to save the lives of 13 other children. I began to cry when I heard this. First of all, I can't help but feel this is the same family that was here with us this weekend. If so, they are a beautiful family and I am so sorry for their loss. They had an amazing support system here with them throughout the entire weekend and I was so touched by their presence. Secondly, everything in my soul is telling me that this is the family we owe our gratitude to. I cannot say for certain, and we may not ever be able to- but I feel it. The thought of having been able to see the family, even if I did not meet them, is overwhelming to me. Even if Kayli's new liver did not come from this beautiful young man, I still will pray diligently for the loss this family suffered and their generosity in a time of such sorrow. What an amazing and precious gift they have given to 13 other families, and mine is possibly one of them. Please join our family, and Kayli, in praying for this family, or any other family that may have made a 2nd chance at life possible for other children with their most generous gift. We owe them everything.
Tuesday, January 5, 2010
Busy day-
Kayli made steps forward in her recovery today...very fast steps...LITERALLY! :D
I spent last night at home with Emily. Was some very nice time with her before she went back to school today after the Winter break. I had a few other errands to run, but arrived this morning just before lunchtime to find Kayli doing very well.
Dr Saggi came by shortly after I arrived, he noted that she was doing extremely well, and she complained of hunger. He ordered that she be moved out of the ICU by the evening, and also can go to a regular diet tomorrow. He than said that he really anitcipates her going home on Friday!!! If she does indeed go home on friday, she will have been in the hospital LESS THAN A WEEK...including her transplant! The doctors are all very impressed with how well she is doing.
Physical therapy came by around 3:30, they did some exercises with her feet and ankles, then went for a walk around the unit. And its a good sized unit! Everyone was impressed with how fast she was walking. I had to run ahead and also cut around the other direction just to keep up to snap pictures! She walked two whole laps, and one nurse even jokingly said "VROOOOM!" as she walked by the 2nd time! As she was returning to her room, she ran into Dr Rhoades, who was thrilled to see her up and walking around so quickly. She walked up to him and looked like she wanted to hug him but knew she couldn't. He said he couldn't get over how well she was doing, and we showed him Kayli's news story. After the walk, she rested for a good while, but didn't tire her out too terribly much.
Later in the afternoon, the Pharmacist came by and did an extensive teaching on Kayli's medications. It is a pretty strict regime she will have to follow. Specific times and doasges. She has a record she is to keep with her at all times, and she had to answer questions. She also has to complete a written quiz before she will be allowed to go home, and she started first thing this evening with administering her own medications.
Then came the big moment, we moved out of ICU and into the special care unit! Smaller room, but more privacy, and a "step-down" in the right direction. Means she needs less care. She has been up and down out of bed alot this evening. Had dressing changes, watching television, texting, and just relaxing. She is in a bit a pain, I am sure from all of her activities today, but it was easily taken care of with medication. Her best friend Cristine even visited for a couple of hours this evening, they enjoyed seeing eachother and Kayli's mood lightened alot after the visit. Cristine even got to be here for the big move!
Kayli has been pretty unhappy about not being able to eat. I don't blame her, she hasn't eaten since Saturday morning! She is currently on a clear liquid diet of jello, chicken broth, juices, etc. She hates it. She had misunderstood this afternoon and thought she was going to get to eat a grilled cheese sandwhich for dinner and was so excited about it. When dinner time came, she tried to call in her food order and they told her she was still on the clear liquids only. Mark went and consulted with the nurse who checked the orders and confirmed that the regular diet doesnt start until tomorrow. Kayli actually began to cry she was so disappointed. We all assured her this was the best thing for her, we need to make sure she can handle the food before we start filling her up with it. She's doing ok now, I snuck downstairs and bought her a cup of chicken noodle soup. The ladies in the cafeteria were laughing at me because I stood at the soup counter for 10 minutes ladling as much of the soup as I could without getting noodles and chicken! Kayli added a little pepper and enjoyed, she said it was better than nothing, and ate a little less than half a cup. After she was done, I tasted it and thought it was delicious! But then again, I like chicken noodle soup and Kayli doesn't. She finished off the evening with some orange jello, and is very much looking forward to tomorrow and real food...and a grilled cheese sandwhich! LOL
One final note, I have pictures of Kayli's incision. I will not post them because they are pretty graphic and Kayli asked me not to. If you would like to see the incision, let me know though, I will share if you are that inerested and Kayli said it was ok though she can't imagine why anyone would want to see it. She was a little upset when she saw it today. They used staples to close the skin, and it lookes a little freaky...and its pretty large. They did a couple of dressing changes today which always makes you feel better.
Here are some more pictures from throughout the day for you to enjoy...
I spent last night at home with Emily. Was some very nice time with her before she went back to school today after the Winter break. I had a few other errands to run, but arrived this morning just before lunchtime to find Kayli doing very well. She had been up out of bed several times to the restroom and sitting in a chair. Mark said she had been doing very well and had a quiet night even though she didn't sleep much. The only item of concern today is that her blood pressure is elevated, but apparently that is expected with some of the medications she is on. She is staying pretty busy texting, emailing and playing with her new i-pod. Typical teenager!
Dr Saggi came by shortly after I arrived, he noted that she was doing extremely well, and she complained of hunger. He ordered that she be moved out of the ICU by the evening, and also can go to a regular diet tomorrow. He than said that he really anitcipates her going home on Friday!!! If she does indeed go home on friday, she will have been in the hospital LESS THAN A WEEK...including her transplant! The doctors are all very impressed with how well she is doing.
Kayli has been pretty unhappy about not being able to eat. I don't blame her, she hasn't eaten since Saturday morning! She is currently on a clear liquid diet of jello, chicken broth, juices, etc. She hates it. She had misunderstood this afternoon and thought she was going to get to eat a grilled cheese sandwhich for dinner and was so excited about it. When dinner time came, she tried to call in her food order and they told her she was still on the clear liquids only. Mark went and consulted with the nurse who checked the orders and confirmed that the regular diet doesnt start until tomorrow. Kayli actually began to cry she was so disappointed. We all assured her this was the best thing for her, we need to make sure she can handle the food before we start filling her up with it. She's doing ok now, I snuck downstairs and bought her a cup of chicken noodle soup. The ladies in the cafeteria were laughing at me because I stood at the soup counter for 10 minutes ladling as much of the soup as I could without getting noodles and chicken! Kayli added a little pepper and enjoyed, she said it was better than nothing, and ate a little less than half a cup. After she was done, I tasted it and thought it was delicious! But then again, I like chicken noodle soup and Kayli doesn't. She finished off the evening with some orange jello, and is very much looking forward to tomorrow and real food...and a grilled cheese sandwhich! LOL
One final note, I have pictures of Kayli's incision. I will not post them because they are pretty graphic and Kayli asked me not to. If you would like to see the incision, let me know though, I will share if you are that inerested and Kayli said it was ok though she can't imagine why anyone would want to see it. She was a little upset when she saw it today. They used staples to close the skin, and it lookes a little freaky...and its pretty large. They did a couple of dressing changes today which always makes you feel better.
Here are some more pictures from throughout the day for you to enjoy...
Monday, January 4, 2010
Monday morning
Good morning everyone! I wanted to give everyone a quick update on how Kayli is doing this morning. We've had very good updates from doctors today.
They took the NG (naso-gastric) tube out last night, so Kayli's tummy is hurting a little bit. She's pretty hungry but they said probably can't eat until tomorrow. She may only be spending one more day in the ICU, then she will go to the IMU. Physical therapy came by this morning and got her out of bed, she sat in a chair for a good while but she tired quickly and the pain got to be too much. She is back in bed now, napping on some pain meds.
Dr Mieles is extremely pleased with how she is doing. And thinks she may be able to go home the end of this week. I am not sure if that means Friday or Sunday...but still AMAZING considering what they had prepared us for! The best and most exciting news for Kayli was they might let her go back to school the end of February!!! This would mean the WORLD to her!! They are still recommending she no play sports for 6 months to a year, and think it will take her a good 3-6 months to recover to a level of almost feeling normal. However, as we've seen she is a remarkable child and seems to recover from things very quickly.
The only "set back" (if you can even call it that) is that Kayli's platelet count was low again this morning, so she has received a unit of platelets today. Hopefully her next lab values will look better again. No one seemed to be too concerned with this. The next goal for today is to get up and actually walk to the bathroom as they have taken the foley catheter out. She is completely off of any kind of breathing aids though, no nasal cannula at all- just room air! :)
I have snapped a few pictures which I will add as soon as I can. My computer is not cooperating at the moment so I have borrowd Mark's, but cannot upload the pictures. :(
Thanks everyone for continuing to read and follow and pray!!!
They took the NG (naso-gastric) tube out last night, so Kayli's tummy is hurting a little bit. She's pretty hungry but they said probably can't eat until tomorrow. She may only be spending one more day in the ICU, then she will go to the IMU. Physical therapy came by this morning and got her out of bed, she sat in a chair for a good while but she tired quickly and the pain got to be too much. She is back in bed now, napping on some pain meds.
Dr Mieles is extremely pleased with how she is doing. And thinks she may be able to go home the end of this week. I am not sure if that means Friday or Sunday...but still AMAZING considering what they had prepared us for! The best and most exciting news for Kayli was they might let her go back to school the end of February!!! This would mean the WORLD to her!! They are still recommending she no play sports for 6 months to a year, and think it will take her a good 3-6 months to recover to a level of almost feeling normal. However, as we've seen she is a remarkable child and seems to recover from things very quickly.
The only "set back" (if you can even call it that) is that Kayli's platelet count was low again this morning, so she has received a unit of platelets today. Hopefully her next lab values will look better again. No one seemed to be too concerned with this. The next goal for today is to get up and actually walk to the bathroom as they have taken the foley catheter out. She is completely off of any kind of breathing aids though, no nasal cannula at all- just room air! :)
I have snapped a few pictures which I will add as soon as I can. My computer is not cooperating at the moment so I have borrowd Mark's, but cannot upload the pictures. :(
Thanks everyone for continuing to read and follow and pray!!!
Sunday, January 3, 2010
New Year- The Liver Saga
HaHa! Most of you probably know Kayli is a Twilight fanatic...so had to come up with a title and thought I would make it cute. "Saga" was stuck in my head so I figured I would somehow tie it to Twilight. :)
I really don't even know where to start this evening. The last 33 hours has been a complete BLUR! Well I will start with the end of the surgery. Dr Mieles emerged from the operating room at exactly 10 minutes til 6am to deliver the good news. The surgery was succesful, he was very pleased with the results, and he has a gut feeling that Kayli will do very well with this transplant. He did say she had a bit of bleeding during the surgery, but overall went well. We all sighed in relief, packed up our belongings and headed to the ICU. Outside of the ICU we waited for nearly 2 hours to be able to see her. In that time, Dr Mieles found us again and and wanted to tell us about Kayli's old liver. Kayli's liver, he said, was very shrunken & shriveled, and when he saw it he was amazed that she was not already in the hospital and still walking around. Apparently, though we knew she was very sick, and sicker than she thought she was...she was also sicker than we ALL thought she was. Based on the lab numbers from before the surgery, she would have been lucky to survive another 3 years with her old liver. This was such sobering news for me, well...for all of us I am sure. I haven't decided if I want for her to know that or not; since the past few weeks she had decided she was fine and there was nothing wrong with her. Shortly after our visit with the doctor, the anesthesiologist who had provided most of her care during the surgery stopped to let us know she did extremely well from his perspective. She only took 5 units of blood and his words were "she was the easiest liver I've ever done". He also said that she was trying to wake-up already which they hadn't expected, and so they had to give her more meds to sedate her more.
It was nearly 9am before Mark & I finally got to see her. It is scary to walk in and find your "baby" looking the way she looked- but by all of the medical staffs accounts, she looked GREAT. She did look good- I mean the child had just had a liver transplant for goodness sakes! LOL She had 2 central lines, one on each side of her neck, an arterial line on her right wrist and an IV in her left wrist. She also sported and NG tube (naso-gastric) and was on the ventilator. She also has a large 'boomarang' shaped incision and dressing across the middle of her abdomen complete with bulb JP drains. To finish off her outfit, boots on her feet & calves that compress and release, to aid her circulation in her lower extremities (at work we call them flowtrons). Her nurse, Sarah, gave us a complete rundown of everything that was going on so far...then Mark went out so that Uncle Daniel, Granny, & Aunt Claudia could come in one by one to see Kayli themselves. She was not awake yet. We learned that instead of the anticipated 2 days on the ventilator, they wanted to have her weaned off by the end of the day today. Dr Rhoades and Nisha(his fellowe) both came by for a visit, we were happy to see them and they were happy to see Kayli.
Aunt Sunny and Greg arrived around 10am to spend the afternoon with Kayli along with Uncle Daniel, so that Mark and I could run home and grab showers and naps. On the way back to the hospital, Mark stopped at Best Buy and bought Kayli an i-pod touch! She had been saving up for one, but was still about $75 shy...I think she deserves a little help with it, don't you? While on our way back, Sunny & Daniel called to let us know that Kayli had woken up, and was trying to write notes to ask questions, though she was falling back asleep as she was writing. She was doing well, so they took her off the ventilator, and she has done very well since and breathing on her own very well. They said the first thing she asked for when she could talk was me, the 2nd thing was her cell phone. Aunt Sunny helped her put her contacts back in so she could see, and she cried when Daddy arrived and presented her with her i-pod touch. They also removed one of her central lines and she has been off and on asking to sit up. The only small concern has been that her urine production slowed down dramatically this afternoon, so they have given her several large doses of Albumin to help increase urine production. Her creatinine levels are good though so they are not concerned with kidney function. The best news of all, seems to be that her INR is now 1.68!!!
As most of you know, one of the biggest complications of her previous liver disease was that her platelet count was extremely low- and her blood was not clotting. A good INR is below 2, Kayli's has been in the 3's, 4's, & 5's... so as you see 1.68 is a miracle!! They are expecting Kayli to be moved from the ICU either tomorrow or Tuesday...and hopefully Tuesday will be the day, as I would hate for them to move her too quickly. Kayli is expected to be in the hospital 10-14 days...which if you know Kayli at all, you know she will be going stir crazy by Thursday!!
I've been asked to share that Kayli is once again at Children's Memorial Hermann in the Texas Medical Center. She is currently in ICU bed 10. If you go onto the hospital's website you can send e-Greetings to Kayli, which she LOVEs getting. Mylar balloons are accepted, no latex balloons or flowers. To give all of the anti-rejection medicine a chance to work, the docs have asked that we restrict visitors for the time being, but as soon as they give us the go ahead we will pass on. Y'all know Kayli, she Loves visitors and quickly tires of just Mark and I. Again, they are expecting her to be here 10-14 days. You can also send Kayli e-mails at kayli.curda@att.net. OH almost forgot- many have asked about Emily. Emily has been well cared for by our good friends the Manuel's. She is having fun but I am sure missing her family. Yesterday amongst the flurry of activity, she was able to go with Aunt Sheila, Lexie, & Sierra to see Disney on Ice and LOVED IT!! She called to tell us how WONDERFUL it was!! I will go home tomorrow to take Emily to CYT rehearsal and spend an evening at home with her to get her ready to go back to school on Tuesday while Mark stays with Kayli. Have a very BLESSED evening everyone and know that God works miracles on a daily basis! :D Will update again tomorrow when we know more.
PS Kayli has been sleeping heavily today, and each time she wakes up it's like the movie "Groundhog Day". She is not remembering things and we have found ourselves explaining things to her each time. This is ok though! She just woke-up again and seems to be more awake each time, and this time is actually reading and answering text messages!
I really don't even know where to start this evening. The last 33 hours has been a complete BLUR! Well I will start with the end of the surgery. Dr Mieles emerged from the operating room at exactly 10 minutes til 6am to deliver the good news. The surgery was succesful, he was very pleased with the results, and he has a gut feeling that Kayli will do very well with this transplant. He did say she had a bit of bleeding during the surgery, but overall went well. We all sighed in relief, packed up our belongings and headed to the ICU. Outside of the ICU we waited for nearly 2 hours to be able to see her. In that time, Dr Mieles found us again and and wanted to tell us about Kayli's old liver. Kayli's liver, he said, was very shrunken & shriveled, and when he saw it he was amazed that she was not already in the hospital and still walking around. Apparently, though we knew she was very sick, and sicker than she thought she was...she was also sicker than we ALL thought she was. Based on the lab numbers from before the surgery, she would have been lucky to survive another 3 years with her old liver. This was such sobering news for me, well...for all of us I am sure. I haven't decided if I want for her to know that or not; since the past few weeks she had decided she was fine and there was nothing wrong with her. Shortly after our visit with the doctor, the anesthesiologist who had provided most of her care during the surgery stopped to let us know she did extremely well from his perspective. She only took 5 units of blood and his words were "she was the easiest liver I've ever done". He also said that she was trying to wake-up already which they hadn't expected, and so they had to give her more meds to sedate her more.
It was nearly 9am before Mark & I finally got to see her. It is scary to walk in and find your "baby" looking the way she looked- but by all of the medical staffs accounts, she looked GREAT. She did look good- I mean the child had just had a liver transplant for goodness sakes! LOL She had 2 central lines, one on each side of her neck, an arterial line on her right wrist and an IV in her left wrist. She also sported and NG tube (naso-gastric) and was on the ventilator. She also has a large 'boomarang' shaped incision and dressing across the middle of her abdomen complete with bulb JP drains. To finish off her outfit, boots on her feet & calves that compress and release, to aid her circulation in her lower extremities (at work we call them flowtrons). Her nurse, Sarah, gave us a complete rundown of everything that was going on so far...then Mark went out so that Uncle Daniel, Granny, & Aunt Claudia could come in one by one to see Kayli themselves. She was not awake yet. We learned that instead of the anticipated 2 days on the ventilator, they wanted to have her weaned off by the end of the day today. Dr Rhoades and Nisha(his fellowe) both came by for a visit, we were happy to see them and they were happy to see Kayli.
Aunt Sunny and Greg arrived around 10am to spend the afternoon with Kayli along with Uncle Daniel, so that Mark and I could run home and grab showers and naps. On the way back to the hospital, Mark stopped at Best Buy and bought Kayli an i-pod touch! She had been saving up for one, but was still about $75 shy...I think she deserves a little help with it, don't you? While on our way back, Sunny & Daniel called to let us know that Kayli had woken up, and was trying to write notes to ask questions, though she was falling back asleep as she was writing. She was doing well, so they took her off the ventilator, and she has done very well since and breathing on her own very well. They said the first thing she asked for when she could talk was me, the 2nd thing was her cell phone. Aunt Sunny helped her put her contacts back in so she could see, and she cried when Daddy arrived and presented her with her i-pod touch. They also removed one of her central lines and she has been off and on asking to sit up. The only small concern has been that her urine production slowed down dramatically this afternoon, so they have given her several large doses of Albumin to help increase urine production. Her creatinine levels are good though so they are not concerned with kidney function. The best news of all, seems to be that her INR is now 1.68!!!
As most of you know, one of the biggest complications of her previous liver disease was that her platelet count was extremely low- and her blood was not clotting. A good INR is below 2, Kayli's has been in the 3's, 4's, & 5's... so as you see 1.68 is a miracle!! They are expecting Kayli to be moved from the ICU either tomorrow or Tuesday...and hopefully Tuesday will be the day, as I would hate for them to move her too quickly. Kayli is expected to be in the hospital 10-14 days...which if you know Kayli at all, you know she will be going stir crazy by Thursday!!
I've been asked to share that Kayli is once again at Children's Memorial Hermann in the Texas Medical Center. She is currently in ICU bed 10. If you go onto the hospital's website you can send e-Greetings to Kayli, which she LOVEs getting. Mylar balloons are accepted, no latex balloons or flowers. To give all of the anti-rejection medicine a chance to work, the docs have asked that we restrict visitors for the time being, but as soon as they give us the go ahead we will pass on. Y'all know Kayli, she Loves visitors and quickly tires of just Mark and I. Again, they are expecting her to be here 10-14 days. You can also send Kayli e-mails at kayli.curda@att.net. OH almost forgot- many have asked about Emily. Emily has been well cared for by our good friends the Manuel's. She is having fun but I am sure missing her family. Yesterday amongst the flurry of activity, she was able to go with Aunt Sheila, Lexie, & Sierra to see Disney on Ice and LOVED IT!! She called to tell us how WONDERFUL it was!! I will go home tomorrow to take Emily to CYT rehearsal and spend an evening at home with her to get her ready to go back to school on Tuesday while Mark stays with Kayli. Have a very BLESSED evening everyone and know that God works miracles on a daily basis! :D Will update again tomorrow when we know more.
PS Kayli has been sleeping heavily today, and each time she wakes up it's like the movie "Groundhog Day". She is not remembering things and we have found ourselves explaining things to her each time. This is ok though! She just woke-up again and seems to be more awake each time, and this time is actually reading and answering text messages!
Kayli is getting a new Liver!
Mark & I arrived at the Blood Drive being held in Kayli's honor today ready to give blood shortly after 11:35am. We had appointments at noon, but were encouraging the donation technicians to take donations from the many walk-up donors that had arrived. No sooner had we said hello to everyone there, I turned around to find Mark on his phone, mouthing the words to me "We have to GO". At 11:42 he received the call that there was a possible liver match for Kayli, the transplant surgery was being tentatively scheduled for 7pm, and we were to go to the hospital and check in through the e.r. We quickly said goodbye to everyone, and with tears of joy streaming headed to the car, ensuring that Emily could stay with Granny who was there to donate blood. We ran to the house, quickly packed a bag for Kayli, and headed to the hospital.
During the drive down to the medical center, we discussed the possibilities of what was about to happen. We all reminded ourselves that the team had told us during our 2nd hospital visit that it was entirely possible that we could be called down several times for possible matches, be completely worked up and sent home. We all quickly agreed that was a huge possibility. Kayli said she didn't know whether to be happy or scared, I told her it was ok to be both. We arrived to the hospital, checked in at the er, and they told us where to go next to a room on the 9th floor. When getting to the 9th floor, the waiting room was filled with people, and we were told to have a seat amongst the crowd as there was still a patient in the room we were going to. The 3 of us were really just thinking we wanted to get the show on the road so we would know if this was really going to happen or not. Our impression at that point was that this was just a possible match and a work-up would need to be done. It was probably about an hour wait, then we were finally put into a room.
After that point things seemed to move very quickly. And it was not long before we found that we were not being fitted for a match...this WAS a match and this WAS happening. We all remained pretty much in shock. Granny, Grampa George, Uncle Robert, & Aunt Claudia arrived for support, and not long after Uncle Daniel, Aunt Sunny, Greg, & Carly arrived as well. We all visited for a bit, Kayli then went for a chest x-ray, an ekg was performed, and we knew we were underway. We were informed that she may possibly be taken back around 6. Around 6pm, Dr Mieles, the transplant surgeon came and talked to us about the risks and possible complications and we signed the consent and were on our way. They took her down shortly after 7. Mark & I were able to accompany her into the pre-op holding area to meet the anesthesiologists and OR nurse. We gave quick hugs and kisses and I love yous, and they wheeled her away with tears in her eyes, and Mark's. Mark and I then joined our family in the surgery waiting area, where my long time friend Brandy and her sister Toni brought everyone Taco Bell burritos and tacos! YUM!
We are currently being kept company by Granny, Aunt Claudia, Uncle Daniel, and our dear friends Robin & Rachel Adamo. Rachel has done an excellent job of keeping me entertained and engaged in conversation, smiling and laughing.
I am wondering what this will bring. What a whirlwind way to start the New Year. It's completely a miracle, but admittedly we are all still in shock that it has happened so quickly. Not that our lives hadn't been changed dramatically to begin with, but this changes so many plans Kayli and I had made to start off the new year and cope with what we were dealing with. I am so thankful for the Blessings and miracle which has been given us. I am so thankful that Kayli was able to enjoy Thanksgiving, her 15th birthday, Christmas, New Years, and time with her wonderful friend Ryan before this all came about. Our New Years wish has come true, and it still seems so surreal at the moment. But what a miracle that the call came at the moment it did, during a very important event designed to honor Kayli and her wishes to help others.
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