Monday, December 28, 2009
Merry Christmas, Happy New Year... Welcome 2010!
I start off today, January 1, 2010, with an apology. I am so sorry I have not updated the blog since Kayli's birthday! I will try to cover everything today, which will make this a very long post! However I will let you know first thing, I do not have much of a medical update today. Kayli had an appointment with the Liver team on the 18th. Things looked good- they told her to relax on her diet a bit if it helped her emotionally, but just means she has to be more strict in following her medication schedule and drinking water. She did another round of labdraws this past Wednesday, which we do not have the results of, but the purpose was to recertify her for a liver transplant and adjust her score and location on the list. Her next appointment is this coming Friday the 8th. She is doing well physically. Emotionally she is ready to go back to school, do anything that gets her out of the house, and tired of being sick.
Tomorrow, 1/2/10- there will be a blood drive in honor of Kayli. Its a replenishment blood drive to help stock the area blood banks. Although Kayli does not need blood at this time, we feel it is important for the blood banks to be stocked because "Blood Saves Lives". Kayli's story and the call for the blood drive made page 2 of the Conroe Courier newspaper this past week. You can view the article by copying and pasting the link above.
Kayli had a wonderful 15th birthday! On the 20th she had planned for herself and a couple of her closest friends to go ice skating at the Ice Rink in the Woodlands. Completely to her surprise, we went above and beyond. With the help of friends Aubrey, Cristine, Carly, & Kalei- we invited several CYT, Band, & School friends to surprise Kayli. We met at Market Street in the Woodlands and had a fun scavenger hunt!! We then traversed over to the Ice Rink for hours of skating fun along with some purple & black birthday cake made by our great friend Heather. It was a joyous occasion and we were so happy that so many of our friends could join us and help make Kayli's day so special!!
Christmas was equally as special. Because I had not worked the entire month of November, we were a bit concerned about providing Christmas for the girls. They had both created wish lists for Santa that we just knew we wouldn't be able to pull off. To our rescue, came SMGSL. The softball league that the girls have both played with for several years, Mark & I serve on the Board of Directors. They insisted that I hand over the girls' wish lists, and indeed they provided a wonderful surprise for the girls on Christmas morning! I am so honored to be part of such a wonderful organization who would do such a thing for the players & their families. The joy on the girls faces as they came down stairs to see that Santa had in fact made it to our house this year was so warming to my heart!
Our home was filled with visitors for Christmas, Grandma(my mom) was here from California. Uncle Daniel & Aunt Sunny(Mark's brother & sister-in-law) arrived on Christmas Eve. Granny Norma & Grandpa George (Mark's mother & step-father) and Uncle Tony(Mark's other brother) and the girls cousin Jenny all paid a visit for dinner on Christmas day. My mom made a feast of FAJITAS, one of my (& Mark's) all time favorite meals that she cooks.
We ended Christmas weekend with an annual visit to Santa's Wonderland in College Station along with our neices Jessica & Jenny. This year was special because we took the hayride and visited Santa's Town instead of just driving through to see the lights! We visited the petting zoo, drank hot cocoa and ate funnel cake, and watched 'A Christmas Story' on the big outdoor movie screen. It was QUITE CHILLY that night!!
Work was a BEAR this week!! Both Mark & I worked late almost every single day in addition to neither of us feeling well. We managed NOT to have the flu in the house, but a ragin' cold has had me not feeling too hot all week in addition to the late hours at work. I have had year end inventory, and Mark is working a branch refresh project for the bank. We both managed to make it home at a decent hour on New Year's Eve. I made a big pot of homemade 2-bean chili for Frito Pie, and stopped on the way home and picked up the "Big Grande" box of mixed fireworks from the stand down the road. Most of the evening was spent around the neighbors fire pit with some very nice peeps, Darrin & Shelly and their kiddos popping fireworks. Kayli wandered the neighborhood with some friends and then at midnight we watched as the neighborhood launched a barrage of aerial fireworks. GOODBYE TO 2009...HELLO 2010!!! My mom left to go back home to California this morning, and the rest of the day has been spent being VERY lazy!! :D
I can only wish and pray that 2010 will bring love, happiness, hope, and health for our family and all of our wonderful friends!! Kayli will return to school on the 19th, and hopefully, life will return to somewhat normal for the time being. Please join us in praying that either Kayli's liver will continue to heal itself, or that a new liver will be available for her soon. Below I share with you our holiday photos, and will also attempt soon to get pictures from Kayli's birthday loaded. If you are on Facebook, her birthday photos can be found there!
Tomorrow, 1/2/10- there will be a blood drive in honor of Kayli. Its a replenishment blood drive to help stock the area blood banks. Although Kayli does not need blood at this time, we feel it is important for the blood banks to be stocked because "Blood Saves Lives". Kayli's story and the call for the blood drive made page 2 of the Conroe Courier newspaper this past week. You can view the article by copying and pasting the link above.
Kayli had a wonderful 15th birthday! On the 20th she had planned for herself and a couple of her closest friends to go ice skating at the Ice Rink in the Woodlands. Completely to her surprise, we went above and beyond. With the help of friends Aubrey, Cristine, Carly, & Kalei- we invited several CYT, Band, & School friends to surprise Kayli. We met at Market Street in the Woodlands and had a fun scavenger hunt!! We then traversed over to the Ice Rink for hours of skating fun along with some purple & black birthday cake made by our great friend Heather. It was a joyous occasion and we were so happy that so many of our friends could join us and help make Kayli's day so special!!
Christmas was equally as special. Because I had not worked the entire month of November, we were a bit concerned about providing Christmas for the girls. They had both created wish lists for Santa that we just knew we wouldn't be able to pull off. To our rescue, came SMGSL. The softball league that the girls have both played with for several years, Mark & I serve on the Board of Directors. They insisted that I hand over the girls' wish lists, and indeed they provided a wonderful surprise for the girls on Christmas morning! I am so honored to be part of such a wonderful organization who would do such a thing for the players & their families. The joy on the girls faces as they came down stairs to see that Santa had in fact made it to our house this year was so warming to my heart!
Our home was filled with visitors for Christmas, Grandma(my mom) was here from California. Uncle Daniel & Aunt Sunny(Mark's brother & sister-in-law) arrived on Christmas Eve. Granny Norma & Grandpa George (Mark's mother & step-father) and Uncle Tony(Mark's other brother) and the girls cousin Jenny all paid a visit for dinner on Christmas day. My mom made a feast of FAJITAS, one of my (& Mark's) all time favorite meals that she cooks.
We ended Christmas weekend with an annual visit to Santa's Wonderland in College Station along with our neices Jessica & Jenny. This year was special because we took the hayride and visited Santa's Town instead of just driving through to see the lights! We visited the petting zoo, drank hot cocoa and ate funnel cake, and watched 'A Christmas Story' on the big outdoor movie screen. It was QUITE CHILLY that night!!
Work was a BEAR this week!! Both Mark & I worked late almost every single day in addition to neither of us feeling well. We managed NOT to have the flu in the house, but a ragin' cold has had me not feeling too hot all week in addition to the late hours at work. I have had year end inventory, and Mark is working a branch refresh project for the bank. We both managed to make it home at a decent hour on New Year's Eve. I made a big pot of homemade 2-bean chili for Frito Pie, and stopped on the way home and picked up the "Big Grande" box of mixed fireworks from the stand down the road. Most of the evening was spent around the neighbors fire pit with some very nice peeps, Darrin & Shelly and their kiddos popping fireworks. Kayli wandered the neighborhood with some friends and then at midnight we watched as the neighborhood launched a barrage of aerial fireworks. GOODBYE TO 2009...HELLO 2010!!! My mom left to go back home to California this morning, and the rest of the day has been spent being VERY lazy!! :D
I can only wish and pray that 2010 will bring love, happiness, hope, and health for our family and all of our wonderful friends!! Kayli will return to school on the 19th, and hopefully, life will return to somewhat normal for the time being. Please join us in praying that either Kayli's liver will continue to heal itself, or that a new liver will be available for her soon. Below I share with you our holiday photos, and will also attempt soon to get pictures from Kayli's birthday loaded. If you are on Facebook, her birthday photos can be found there!
Saturday, December 19, 2009
Celebrating 15 years of Kayli
December 20th, 1994 at 11:41 pm, Kayli Noel Curda was sent from God to touch our lives. Please enjoy the pictures below celebrating 15 years of Kayli and join us in thanking the Lord for the miracle of her life.
Friday, December 11, 2009
December 11th
***New update: there are plans in the works for a blood drive in Kayli's honor January 2nd. Also, am considering putting together a team to walk in Kayli's honor at the Liver Life walk in Houston on April 17th...more details on both to follow. :)
I have been a cynic for most of my life. I spent many years doubting people before I got to know them. Over the past few years God has definately shown me his Grace, and in turn taught me grace. I have tried really hard to follow Him, and admittedly there are many times that it's really hard to show grace, love, trust...its hard to believe in people. I turned a corner a few years ago, and though I still struggle often, I want so badly to see the best in people first.
Since Kayli was diagnosed with liver disease, God has shown me how amazing, loving, caring, and generous people are...and I now know that I was right in wanting to follow Him and believe. There are so many caring souls surrounding us each and every day with all that they are doing to help us through this difficult time. It has been nothing short of a Christmas miracle in my heart. I just wanted to take a moment to acknowledge this, and even though I have not been able to sit down and write thank-you's...you are all very dear to us and know that your gestures of kindness, no matter how small, are not going unnoticed. I especially want to thank today Mark's Citibank co-workers in New York, Florida, and California; Oak Ridge High School PTO, Oak Ridge Band Boosters and directors; and Oak ridge High school faculty & administration- what you all have done for us is nothing short of amazing and we continue to be grateful and honored.
There isn't really an update this week regarding Kayli's current health. She did not have an appointment with the Liver doctor this week nor labs drawn. She did have some issues earlier in the week with fluid retention, but it subsided a bit with a couple doses of diuretic, large amounts of water, and some rest in the living room recliner. Her ammonia levels have remained stable this week since she learned that too much protein in her diet contributes to an unwanted increase in ammonia levels and... well, does produce an unfavorable result.
Her next appointment is Friday, the 18th....two days before her 15th birthday which she is really excited about. We received the liver transplant pager today.... so now it truly feels official.
Last weekend we traveled to Galveston to witness the Dickens on the Strand festival. We were joined by Kayli's friend Ryan, and while there visited with some very good friends of ours from CYT. Please enjoy the pictures below from the festival! Kayli had a WONDERFUL time, and it felt so good to get her out of the house and doing something fun!!
Kayli & Ryan trying on some very fashionable head pieces.
Kayli , Rachel, & Elijah are ready for the masquarade ball!!
Kayli, Emily, Ryan, Rachel, & Elijah pose with some other festival goers dressed in Dickens era garb. Next year we may dress up!
Kayli enjoys a stroll down the strand with her best friend. I think Ryan was enchanted by the warriors dressed in armor- or I just caught him by surprise... LOL
I have been a cynic for most of my life. I spent many years doubting people before I got to know them. Over the past few years God has definately shown me his Grace, and in turn taught me grace. I have tried really hard to follow Him, and admittedly there are many times that it's really hard to show grace, love, trust...its hard to believe in people. I turned a corner a few years ago, and though I still struggle often, I want so badly to see the best in people first.
Since Kayli was diagnosed with liver disease, God has shown me how amazing, loving, caring, and generous people are...and I now know that I was right in wanting to follow Him and believe. There are so many caring souls surrounding us each and every day with all that they are doing to help us through this difficult time. It has been nothing short of a Christmas miracle in my heart. I just wanted to take a moment to acknowledge this, and even though I have not been able to sit down and write thank-you's...you are all very dear to us and know that your gestures of kindness, no matter how small, are not going unnoticed. I especially want to thank today Mark's Citibank co-workers in New York, Florida, and California; Oak Ridge High School PTO, Oak Ridge Band Boosters and directors; and Oak ridge High school faculty & administration- what you all have done for us is nothing short of amazing and we continue to be grateful and honored.
There isn't really an update this week regarding Kayli's current health. She did not have an appointment with the Liver doctor this week nor labs drawn. She did have some issues earlier in the week with fluid retention, but it subsided a bit with a couple doses of diuretic, large amounts of water, and some rest in the living room recliner. Her ammonia levels have remained stable this week since she learned that too much protein in her diet contributes to an unwanted increase in ammonia levels and... well, does produce an unfavorable result.
Her next appointment is Friday, the 18th....two days before her 15th birthday which she is really excited about. We received the liver transplant pager today.... so now it truly feels official.
Kayli & Ryan trying on some very fashionable head pieces.
Kayli, Emily, Ryan, Rachel, & Elijah pose with some other festival goers dressed in Dickens era garb. Next year we may dress up!
Monday, December 7, 2009
CYT Houston presents "Seussical the Musical"
CYT is running a special right now which Kayli is involved in and trying to win a ticket contest. Contact me at steph.curda@att to purchase advance tickets at a special price of $8. You can pick your actual showtime at a later time. WHAT A GREAT CHRISTMAS GIFT for coaches, teachers, dance teachers, aunts, cousins, etc!! This special ends December 17th!!!!!
Kayli will be working backstage on this one, and her little sister Emily stars as a "Who" from Whoville and also a circus vendor. She has named her own character "Emily Lou Who" HA HA HA
We hope to see you there!!! Horton, the Grinch, Cat in the Hat, Thing 1 & 2...the whole gang!! :)
Friday, December 4, 2009
December 4th
Has been a litte bit since I updated, but things are moving at a slower pace now...which is GOOD. :)
We met with Kayli's teachers, school administrators, and the Homebound school coordinator on Wednesday. We got very good information but it looks as though Kayli will have to work pretty hard to get caught up, but we kind of knew that. The homebound teacher will come to the house 2 days a week for 5 hours (total) and a Spanish II teacher will come 1 day a week for 2. She will have to work over the holiday break to get caught up and stay caught up. We originally thought she would return to school after the holiday break, but the school thought it best that she returns when the 2nd semester starts on January 19th. This way she will not return to be pushed into final exams, but she will be administered her final exams by the homebound teacher.
The liver doctor put in standing orders so that we can get Kayli's labs drawn at Memorial Hermann outpatient services here in The Woodlands. This way we can get labs drawn a couple of days BEFORE her appointments in the med center so when we go for her appointment they already have some lab results to go over with us. We did that this week and it worked out GREAT.
Today's visit was good. Kayli's lab results, bloodwork numbers, are looking better overall. She is still no where near normal, but looking better. Her platelets are still extremely low, but her clotting factors are better. All other blood cell counts looking much better. Her liver function numbers are the same, stabilized which is good, though her liver enzymes are down slightly which is great! Her bilirubin has gone up though, which is not good- and her ammonia levels are still fluctuating alot, but they added in an additional medication to help with both of these things. This will also help her sleep better at night as she has been pretty restless lately. One of the transplant doctors came and visited with us today. We had a transplant question and Dr Rhoades paged him and had him come right over from the hospital and talk to us, it was really nice and he clarified several things for us that we still had questions about. We had not met him before, but he knew exactly who we were and knew alot about Kayli's case. He said they are still estimating a 3-6 month wait for a liver. I think I will put on my Christmas wish list I would like a liver for Kayli the beginning of June...HA HA- school will be out and she can spend the summer recovering and be ready to start her Sophomore year on time!
She will not have a doctors appointment this week or labs drawn which she is very excited about, and for the time being as long as she continues to progress we will continue with biweekly appointments instead of weekly. As for Kayli, she is feeling great, and she feels pretty normal though she still tires easily sometimes. She is very excited about and has started counting down the days til her 15th birthday- afterall we have MUCH to celebrate when December 20th rolls around and I know she is looking forward to it.
***Blood donations- I will soon have information regarding a blood drive in Kayli's name! If you have been donating and would like to rest up your arms and veins and blood cells...it is to be held January 2nd. I will give more information as it comes available to me. As you know, during both of Kayli's hospital stays she had many, many blood transfusions. At a time when she needed platelets and whole blood so that a life-saving procedure could be performed, we heard the dreaded words; "the hospital blood bank is out, and the local banks are all running too low to spare any- the procedure cannot be performed until we can give her more and have extra on hand." Though Kayli is not in need of transfusions at this time, she will at time of transplant...and she is at a high risk of bleeding and hearing that the blood bank does not have what she needs is something we do not ever want to go through again. MORE IMPORTANTLY, we as a family do not want ANYONE else's loved ones to ever have to hear those words, ever. Nobody should ever have to go through that. If we can do our part to ensure the local blood banks are adequately supplied, then we feel that God has truly Blessed our journey and struggles and saw a way for us to triumph against them, and this mission was given specifically to Kayli and our family because we have the army needed to fight the battle. This thanks we owe to all of you, our beloved and devoted Army.
We met with Kayli's teachers, school administrators, and the Homebound school coordinator on Wednesday. We got very good information but it looks as though Kayli will have to work pretty hard to get caught up, but we kind of knew that. The homebound teacher will come to the house 2 days a week for 5 hours (total) and a Spanish II teacher will come 1 day a week for 2. She will have to work over the holiday break to get caught up and stay caught up. We originally thought she would return to school after the holiday break, but the school thought it best that she returns when the 2nd semester starts on January 19th. This way she will not return to be pushed into final exams, but she will be administered her final exams by the homebound teacher.
The liver doctor put in standing orders so that we can get Kayli's labs drawn at Memorial Hermann outpatient services here in The Woodlands. This way we can get labs drawn a couple of days BEFORE her appointments in the med center so when we go for her appointment they already have some lab results to go over with us. We did that this week and it worked out GREAT.
Today's visit was good. Kayli's lab results, bloodwork numbers, are looking better overall. She is still no where near normal, but looking better. Her platelets are still extremely low, but her clotting factors are better. All other blood cell counts looking much better. Her liver function numbers are the same, stabilized which is good, though her liver enzymes are down slightly which is great! Her bilirubin has gone up though, which is not good- and her ammonia levels are still fluctuating alot, but they added in an additional medication to help with both of these things. This will also help her sleep better at night as she has been pretty restless lately. One of the transplant doctors came and visited with us today. We had a transplant question and Dr Rhoades paged him and had him come right over from the hospital and talk to us, it was really nice and he clarified several things for us that we still had questions about. We had not met him before, but he knew exactly who we were and knew alot about Kayli's case. He said they are still estimating a 3-6 month wait for a liver. I think I will put on my Christmas wish list I would like a liver for Kayli the beginning of June...HA HA- school will be out and she can spend the summer recovering and be ready to start her Sophomore year on time!
***Blood donations- I will soon have information regarding a blood drive in Kayli's name! If you have been donating and would like to rest up your arms and veins and blood cells...it is to be held January 2nd. I will give more information as it comes available to me. As you know, during both of Kayli's hospital stays she had many, many blood transfusions. At a time when she needed platelets and whole blood so that a life-saving procedure could be performed, we heard the dreaded words; "the hospital blood bank is out, and the local banks are all running too low to spare any- the procedure cannot be performed until we can give her more and have extra on hand." Though Kayli is not in need of transfusions at this time, she will at time of transplant...and she is at a high risk of bleeding and hearing that the blood bank does not have what she needs is something we do not ever want to go through again. MORE IMPORTANTLY, we as a family do not want ANYONE else's loved ones to ever have to hear those words, ever. Nobody should ever have to go through that. If we can do our part to ensure the local blood banks are adequately supplied, then we feel that God has truly Blessed our journey and struggles and saw a way for us to triumph against them, and this mission was given specifically to Kayli and our family because we have the army needed to fight the battle. This thanks we owe to all of you, our beloved and devoted Army.
Friday, November 27, 2009
What a nice quiet Thanksgiving we had! It was just the 4 of us. I cooked a turkey breast in the crockpot and made my famous mashed potatoes. We drug out the Christmas decorations and Emily decorated the tree all by herself! We ended the night with the 4 of us playing Guitar Hero (the band version); Mark plays guitar, I play bass, Kayli is the drummer and Emily is our lead singer. Its fun listening to my 9 yr old daughter sing (& know the words to) songs by Lenny Kravitz, CCR, Nirvana, Pat Benatar, REM, Led Zeppelin, etc. We have a lot to be thankful for, and still much to wish & pray for!Kayli has been feeling good. Had a doctor visit on Wednesday which was a very nice visit. They did labwork which we do not know the results of, but it was determined that after our visit this next Friday, if all looks good from the labwork, then we will see the docotr at the liver center every other week! :) Kayli will still need weekly labwork done however, but we asked if we could do it at Memorial Hermann in the Woodlands and they agreed. So the doctor is submitting standing orders to the lab here in the Woodlands, and Kayli will still have bloodwork done weekly...but the medical center visits being bi-weekly is SO helpful and wonderful.
On Wednesday we will meet at the high school with her teachers and the homebound school coordinator to organize Kayli's homeschooling for the remainder of this semester. She has missed a month of school so I am sure there will be much catching up to do over the next few weeks. Now it is just a matter of getting her motivated to do so. We visited with Mr Allen the band director earlier in the week and picked up her saxophone to bring home so she can practice playing. Mr Allen said it may be possible for Kayli to play in the Christmas concert with her band if she will practice the music on her own. I may take her up to the school once or twice a week so that she can practice with the band class. Today Mark took her to the baseball fields to play a fun little game with her band director and some band kids. She felt pretty good and even played in the game, took it easy and and had fun, and her team 'won'. Mark played also and then her got called to work so Kayli went with him on his calls.
Next week it will be a matter of establishing a routine for care, school, & activities...a much needed ROUTINE.
On another note, rehearsals for CYT's Seussical are in full swing. Emily is in the show, she is a Who and a Circus Vendor. Kayli will be working backstage. This show is a true musical and the costumes and music will prove to be amazing! Lots of dancing!!! Its gonna be GREAT!! Kayli is selling tickets and trying to earn her way to a Special Event party in a ticket sales contest. If you buy tickets directly from Kayli before December 17th you get a special price of $8 per ticket (less than a movie)!! Or you can order online, if you order online be sure to pick Kayli's name from the drop down student box!! Visit the link below for showtimes and more info!
CLICK HERE for CYT Houston's SEUSSICAL Jr!!!
Monday, November 23, 2009
Thanksgiving week
I can hardly believe it is Thanksgiving already, I feel like we have lost a entire month of our lives. Kayli was straightening in her room earlier and realized her calender was still on October, and then when she started crossing out days- she came to me and said "mom, i lost like a whole month!" This whole month has seemed pretty surreal. It is certainly one of those "it could never happen to me or my family" situations. I still have so many questions I wish we had answers to, 'how did this happen?' 'why did this happen to Kayli?' 'how did we not see it coming?' I know God must have a plan for her, and for us...but sometimes it doesn't make it any easier to swallow. Kayli has never had any health issues like this before, and she was a healthy, very active high school freshman. Played softball, plays Tenor Saxophone, volunteers for her sisters theater group even takes some theater classes herself. Had many plans over the next few years- now what? We sit and wait and put things on hold? I don't know what do. I'm trying to get our family back to normal, but I don't think normal is what it was, so how will I know when we are normal again?
Kayli's doctor appointment last Friday was uneventful. It was more just for their information than ours. Emily and Granny both went with us to learn as well. We got her medication schedule straightened out, activitiy & diet limitations, and also discussed with the doctors the need to start screening Emily for any possible autoimmune disorders since they feel this may have been genetic. They did not draw any labs, but Kayli's next appointment is Wednesday before Thanksgiving and they will draw labs which is almost the hardest part for her. She has been feeling pretty good, though she tires easily. This weekend we had a family day at the movies! Granny & Emily went to see Planet 51, Mark, myself, Kayli & her friend Ryan went and saw New Moon which Kayli has been anxiously waiting months for. When we were walking into the theater the kids bumped into some school friends so we let them go sit together and Mark & I sat on the other side of the theater; this was hard for Mark to do. It was almost cute, I literally had to tear him away- his response being "what if something happens to her during the movie?"
She was fine, but obviously tired today. I think once she builds her endurance back up to make it through a full day without being exhausted, she will be fine.
This week, I am thankful for my family. I am thankful for my husband who doesn't hesitate to be worrysome for his little girls; I am thankful for my strong little obtuse Emily, who isn't letting her sister's illness affect her outlook on life; am thankful for my mother-in-law who is taking time out of her busy life to help us through this difficult time in any way we need; I am thankful for all of our prayer soldiers-friends-family-classmates-everyone who has wished us well in any way possible spiritually, financially, in the kitchern; I am thankful for Kayli's friends, especially Ryan, Cristine, Carly, Chris- they have all stood by Kayli and text messaged her, kept her informed of school happenings, visited her, cheered her up in the best ways possible by just being there for her.
Most of all I am thankful for my beautiful, brave, strong, stubborn daughter Kayli and her will to make it through this and fight it. For the first time in her life I praise God that she is stubborn, she won't even let a life-threatening illness keep her from enjoying life!
Kayli's doctor appointment last Friday was uneventful. It was more just for their information than ours. Emily and Granny both went with us to learn as well. We got her medication schedule straightened out, activitiy & diet limitations, and also discussed with the doctors the need to start screening Emily for any possible autoimmune disorders since they feel this may have been genetic. They did not draw any labs, but Kayli's next appointment is Wednesday before Thanksgiving and they will draw labs which is almost the hardest part for her. She has been feeling pretty good, though she tires easily. This weekend we had a family day at the movies! Granny & Emily went to see Planet 51, Mark, myself, Kayli & her friend Ryan went and saw New Moon which Kayli has been anxiously waiting months for. When we were walking into the theater the kids bumped into some school friends so we let them go sit together and Mark & I sat on the other side of the theater; this was hard for Mark to do. It was almost cute, I literally had to tear him away- his response being "what if something happens to her during the movie?"
She was fine, but obviously tired today. I think once she builds her endurance back up to make it through a full day without being exhausted, she will be fine.
This week, I am thankful for my family. I am thankful for my husband who doesn't hesitate to be worrysome for his little girls; I am thankful for my strong little obtuse Emily, who isn't letting her sister's illness affect her outlook on life; am thankful for my mother-in-law who is taking time out of her busy life to help us through this difficult time in any way we need; I am thankful for all of our prayer soldiers-friends-family-classmates-everyone who has wished us well in any way possible spiritually, financially, in the kitchern; I am thankful for Kayli's friends, especially Ryan, Cristine, Carly, Chris- they have all stood by Kayli and text messaged her, kept her informed of school happenings, visited her, cheered her up in the best ways possible by just being there for her.
Thursday, November 19, 2009
Now just waiting for a Liver...
Home, finally. This hospital trip was certainly more traumatic and stressful than the first. I think the first one was almost 'fun' for Kayli despite the diagnosis. For one thing she didn't feel sick, nothing really bad happened, and she had lots of attention and visits from friends and wellwishers. This one, not so fun. This was downright awful. It's been a heartbreaking experience, but also one full of love and hope. Hope that things will turn around, or that the perfect liver will come Kayli's way. The chaplain visited Kayli today before we left the hospital, and told Kayli "Remember, we aren't wishing for anyone to die, we are praying for someone to be generous in their loss."
Today was a long, boring one. The orders were written for her to go home, then a few hours passed, then they removed her central line, then a few hours passed, then we finally left. She was so glad- I was too because she was getting pretty grumpy. She is home, resting comfortably, and on a low sodium diet. Aside from the severe bruising up and down each arm and a round little "Prednisone" face, you would never know the girl just faced a life-threatening situation 4 short days ago. She's amazing.
Kayli has an appointment in the medical center tomorrow with her liver doctor. We will go over with him the latest medication schedule, prognosis, etc. From what we have gathered, they believe she will receive a liver transplant within the next 6 months. A part of me is praying that day never comes, but a part of me knows that a new liver is better than no liver, or her very sick liver. Kayli is going to sit out the rest of the semester from school- she will be on the Homebound program. We are waiting confirmation and instructions from the school. A teacher will come to the house 4 hours a week to help her get caught up and finish the semester, than she will start school fresh when the next semester starts January 5th while we wait for a liver. As for Mark, Emily, & I- we will keep trucking along. Emily is in CYT's production of Seussical which will be GREAT!!! Kayli will work back stage and Mark & I will help as we can. If you would like to come see the show, it will be in January however Kayli is already selling tickets for the ticket sales contest!! Mark & I were to have left on our cruise to the Carribbean today...obviously we won't be going. I was pretty disappointed, it was to be my birthday gift and our first cruise and trip away together!!! But, alas, I think there is something much more important for me to do at the moment. :)
I will post again tomorrow after we have talked to the doctor if anything changes. We appreciate so much what everyone is doing for us. If Kayli has a transplant, she will be in ICU for 3 weeks after, which will mean much more help needed!! Until then we will be making weekly trips to the Medical Center for doctors appointments, and monthly Upper Endoscopy procedures to ensure the banding and the liver shunts are working properly. I will continue to update this blog so that you can all follow Kayli's progress, and hopefully her story will be one to give others hope!
SPECIAL THANKS GO OUT TODAY TO THE GOLDWAIT FAMILY AND TO DONNA MCIVER. THANKS SO MUCH FOR MAKING TODAY SPECIAL!
Kayli has an appointment in the medical center tomorrow with her liver doctor. We will go over with him the latest medication schedule, prognosis, etc. From what we have gathered, they believe she will receive a liver transplant within the next 6 months. A part of me is praying that day never comes, but a part of me knows that a new liver is better than no liver, or her very sick liver. Kayli is going to sit out the rest of the semester from school- she will be on the Homebound program. We are waiting confirmation and instructions from the school. A teacher will come to the house 4 hours a week to help her get caught up and finish the semester, than she will start school fresh when the next semester starts January 5th while we wait for a liver. As for Mark, Emily, & I- we will keep trucking along. Emily is in CYT's production of Seussical which will be GREAT!!! Kayli will work back stage and Mark & I will help as we can. If you would like to come see the show, it will be in January however Kayli is already selling tickets for the ticket sales contest!! Mark & I were to have left on our cruise to the Carribbean today...obviously we won't be going. I was pretty disappointed, it was to be my birthday gift and our first cruise and trip away together!!! But, alas, I think there is something much more important for me to do at the moment. :)
I will post again tomorrow after we have talked to the doctor if anything changes. We appreciate so much what everyone is doing for us. If Kayli has a transplant, she will be in ICU for 3 weeks after, which will mean much more help needed!! Until then we will be making weekly trips to the Medical Center for doctors appointments, and monthly Upper Endoscopy procedures to ensure the banding and the liver shunts are working properly. I will continue to update this blog so that you can all follow Kayli's progress, and hopefully her story will be one to give others hope!
SPECIAL THANKS GO OUT TODAY TO THE GOLDWAIT FAMILY AND TO DONNA MCIVER. THANKS SO MUCH FOR MAKING TODAY SPECIAL!
Wednesday, November 18, 2009
We're getting there!!
Kayli has been tolerating soft foods pretty well, so this evening she will get to order a regular (low sodium) meal!! She is also moving out of the ICU PRAISE GOD!! :) She will be in room 984 as of around 2pm this afternoon which is in the IMU (where she was during her first stay, one step down from ICU). Her length of stay is still unknown, but the liver doctor would like to see her go home tomorrow or Friday. She really hopes so because "New Moon" comes out this weekend...HA HA HA! We also still don't have an idea of when she can return to school. She is napping now, but I am sure it is because she was able to go for a walk this morning. Mark went with her and said she did pretty good, didnt go very far but she tired very easily and still feels a little weak and shaky.
A liver transplant is now somewhat inevitable. Before we had hoped the liver might possibly respond to drug therapy, but we now know the liver is moving in the opposite direction as evidenced by a bit of jaundice beginning to appear. Kayli has been moved higher on the list and her MELD score is now a 24, where as it was only at 17 prior to this hospital trip and GI bleeds. (For more information on this score http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease) However, the surgeons have stated that they will wait for the absolute perfect liver for her.
Please visit http://www.liverfoundation.org/ for more information on the American Liver Foundation.
A liver transplant is now somewhat inevitable. Before we had hoped the liver might possibly respond to drug therapy, but we now know the liver is moving in the opposite direction as evidenced by a bit of jaundice beginning to appear. Kayli has been moved higher on the list and her MELD score is now a 24, where as it was only at 17 prior to this hospital trip and GI bleeds. (For more information on this score http://en.wikipedia.org/wiki/Model_for_End-Stage_Liver_Disease) However, the surgeons have stated that they will wait for the absolute perfect liver for her.
Please visit http://www.liverfoundation.org/ for more information on the American Liver Foundation.
Tuesday, November 17, 2009
I was told by several very dear friends to stop refusing help- so I am. We have been blessed with so many wonderful people in our lives, and everyone has asked what they can do. There are so many ways to help, and each and every one is so appreciated. I am copying and pasting information provided in an email sent earlier this evening by some caring folks...
*Blood donations- Kayli's spleen has done a pretty good job of depleting the platelet supply in the entire Houston Metro area over the past few days. You can help by replenishing Kayli's usage at the Gulf Coast Regional Blood Center. 'Please see my previous blog post regarding blood donation information or visit http://www.giveblood.org/ for more information.'
*A Basket of Hope has been placed on the Curda residence porch at 32302 Willow Creek Park at the corner of Willow Creek Park and Fowler Park in Imperial Oaks, to assist them in any way you see fit. Parking at Childrens Memorial Hermann is $10/day. Gas cards, parking passes, gifts & notes for Kayli, etc may be placed in the bin with her name on the top.
*A bank account to collect monetary donations has been set up at Citibank, 18410 I-45 South, Shenandoah, Texas (on the southbound feeder road just south of Hwy 242 and St Lukes). The bank personnel know the Curda family well and you simply need to ask for the Kayli Curda benefit account to deposit.
*MEALS! A meal calendar has been set up to help feed the family. The HELPER logon is used by family and friends that would like to sign-up to help. To access Kayli Curda's personal CareCalendar site, visit http://www.carecalendar.org/logon/26902 and enter the following information in the appropriate spaces:
CALENDAR ID : 26902
SECURITY CODE : 1381
Once Kayli returns home, she will be on a low sodium diet.
*You can send eGreetings to Kayli in her hospital room via the Memorial Hermann website. Note that she is at Children's Memorial Hermann. Also you can email Kayli personally at kayli.curda@att.net. Kayli also has a little sister, Emily (age 9), who is extremely worried about her 'sissy' and missing her sister and Daddy. You can also email words of encouragement to Emily at mimicurda@yahoo.com.
Thank you so much for your willingness to help. May the Lord Bless and keep all of you safe and close to His heart. With much Love, The Curda Family
*Blood donations- Kayli's spleen has done a pretty good job of depleting the platelet supply in the entire Houston Metro area over the past few days. You can help by replenishing Kayli's usage at the Gulf Coast Regional Blood Center. 'Please see my previous blog post regarding blood donation information or visit http://www.giveblood.org/ for more information.'
*A Basket of Hope has been placed on the Curda residence porch at 32302 Willow Creek Park at the corner of Willow Creek Park and Fowler Park in Imperial Oaks, to assist them in any way you see fit. Parking at Childrens Memorial Hermann is $10/day. Gas cards, parking passes, gifts & notes for Kayli, etc may be placed in the bin with her name on the top.
*A bank account to collect monetary donations has been set up at Citibank, 18410 I-45 South, Shenandoah, Texas (on the southbound feeder road just south of Hwy 242 and St Lukes). The bank personnel know the Curda family well and you simply need to ask for the Kayli Curda benefit account to deposit.
*MEALS! A meal calendar has been set up to help feed the family. The HELPER logon is used by family and friends that would like to sign-up to help. To access Kayli Curda's personal CareCalendar site, visit http://www.carecalendar.org/logon/26902 and enter the following information in the appropriate spaces:
CALENDAR ID : 26902
SECURITY CODE : 1381
Once Kayli returns home, she will be on a low sodium diet.
*You can send eGreetings to Kayli in her hospital room via the Memorial Hermann website. Note that she is at Children's Memorial Hermann. Also you can email Kayli personally at kayli.curda@att.net. Kayli also has a little sister, Emily (age 9), who is extremely worried about her 'sissy' and missing her sister and Daddy. You can also email words of encouragement to Emily at mimicurda@yahoo.com.
Good day for Kayli
It has been a long day- but a good one for Kayli.
Daddy stayed with her last night, and apparently there were a few rough moments. The ICU team was monitoring her very closely since it was her first night off of the ventilator. At some point during the night she had a very bad reaction to something- though they never pin pointed what it was- Mark said it was pretty scary. The belief is that it was a combination of the breathing treatment she was getting (Albuterol) and the dose of Plasma- or one or the other. Her heart rate and blood pressure dropped drastically & suddenly. They discontinued everything, then slowly started things back up one at a time except for the Albuterol. A chest x-ray was done which showed her lower lungs were not inflating- believed to be a result of having been on a vent and her lying down- not active for a few days.
When I arrived to see Kayli early this morning, she was coughing up blood- which of course scared the bejeezus out of me...the one thing they are trying desperately to avoid is ANY and ALL bleeding because the risk of her bleeding out is SO high. Mark said the respiratory therapist had been in and done a really aggressive breathing treatment which caused that, and the doctors were discussing what to do about it at that moment. They watched her pretty closely, but the bleeding stopped relatively quickly, though the coughing didn't. So the nurse & doctor encouraged her to use the incentive spirometer- which seemed to be helping.
After the doctors made their rounds, they ordered that her arterial line be removed, which she was happy about even though it was painful to remove. Her central femoral line is giving her some heartaches, but it is better than the alternative of having to stick her everytime they draw labs. She still has 3 active IV lines in addition to the central line. She was able to get out of bed for a little while this morning and sat in a chair and ate her "brunch".
Kayli was really really grumpy the first half of the day, but then again how can you blame her. She is almost 15, weekend plans have been ruined several weekends in a row now, she misses all of her Band, CYT, & Softball friends, and she HADN'T EATEN IN 5 DAYS!!! Which you know is enough to make any teenager grumpy! They changed her diet twice today, first they allowed her to have clear liquids for lunch. They brought her chicken broth, beef broth, jello, and apple juice for lunch...she ate the jello, and then asked for more jello. She took a pretty nice long nap this afternoon, and was resting comfortably when her Granny arrived for the evening shift. Mark and I are at home this evening spending some time with Emily and helping her with math homework.
We received news this evening that the GI specialist, the Pediatrician, and the Transplant surgeon all went by to see Kayli. They said she is looking well, they changed her diet to a no protein diet, they will probably move her out of the ICU tomorrow and into the step-down unit, and they are hoping to send her home Thursday or Friday. She had a grilled-cheese sandwhich and french fries for dinner and said it was WONDERFUL! Hopefully, no more excitement for the time being!
Daddy stayed with her last night, and apparently there were a few rough moments. The ICU team was monitoring her very closely since it was her first night off of the ventilator. At some point during the night she had a very bad reaction to something- though they never pin pointed what it was- Mark said it was pretty scary. The belief is that it was a combination of the breathing treatment she was getting (Albuterol) and the dose of Plasma- or one or the other. Her heart rate and blood pressure dropped drastically & suddenly. They discontinued everything, then slowly started things back up one at a time except for the Albuterol. A chest x-ray was done which showed her lower lungs were not inflating- believed to be a result of having been on a vent and her lying down- not active for a few days.
When I arrived to see Kayli early this morning, she was coughing up blood- which of course scared the bejeezus out of me...the one thing they are trying desperately to avoid is ANY and ALL bleeding because the risk of her bleeding out is SO high. Mark said the respiratory therapist had been in and done a really aggressive breathing treatment which caused that, and the doctors were discussing what to do about it at that moment. They watched her pretty closely, but the bleeding stopped relatively quickly, though the coughing didn't. So the nurse & doctor encouraged her to use the incentive spirometer- which seemed to be helping.
After the doctors made their rounds, they ordered that her arterial line be removed, which she was happy about even though it was painful to remove. Her central femoral line is giving her some heartaches, but it is better than the alternative of having to stick her everytime they draw labs. She still has 3 active IV lines in addition to the central line. She was able to get out of bed for a little while this morning and sat in a chair and ate her "brunch".
Kayli was really really grumpy the first half of the day, but then again how can you blame her. She is almost 15, weekend plans have been ruined several weekends in a row now, she misses all of her Band, CYT, & Softball friends, and she HADN'T EATEN IN 5 DAYS!!! Which you know is enough to make any teenager grumpy! They changed her diet twice today, first they allowed her to have clear liquids for lunch. They brought her chicken broth, beef broth, jello, and apple juice for lunch...she ate the jello, and then asked for more jello. She took a pretty nice long nap this afternoon, and was resting comfortably when her Granny arrived for the evening shift. Mark and I are at home this evening spending some time with Emily and helping her with math homework.
Monday, November 16, 2009
Procedure Completed - Kayli Resting
The procedure was completed Kayli is resting in her room in the PICU. Stephanie will update with more information later today---Mark
The Interventional Radiologist who performed Kayli's procedure was pleased with how it went, and said that Kayli handled the anesthesia and everything very well. If you have googled the TIPS procedure I spoke of, you might understand a little of the dynamics...but let me just put it this way... the pressure in our portal veins is normally around 5, Kayli's was at 20. The shunting procedure lowered her pressure to about 3. All of the pressure in Kayli's portal vein is what was causing the backup of blood and the blood vessels in her esophagus and tummy to burst causing the life threatening blood loss situation. Kayli came back from the procedure still on the ventilator but resting pretty comfortably. They weaned her off of the ventilator over the course of the afternoon, Mark said they had her completely off around 4:30pm! YAY!!
She has been Facebooking and texting some updates to friends, and I know her and Mark have been resting off and on all evening. She is happy to be off of the ventilator but has a pretty sore throat. She still cannot eat though, and hasn't eaten since Thursday night. I think that is the hardest thing for her is that she is hungry. They will most likely keep her on IV nutrition for another day or so, maybe Wednesday or Thursday she can start on clear fluids, and probably stay on liquids for a couple of days after that. Not sure at all at this point when she will be able to come home, unless someone talked to Mark this evening and he hasn't passed on to me yet. And no idea at all of when she might be able to go back to school. Kayli is now considered most certainly a good candidate for a liver transplant. The doctors had first thought that she would have a decent outcome from the immunosuprresants and steroids and not suffer from all of the usualy liver disease symptoms, but these GI bleeds proved otherwise. They had planned to turn down the first few donor liver matches, focusing on the drug therapy...but that has potentially changed and they may take the first match. We are not sure though how long the wait will be, could be weeks or months still.
Tomorrow morning I will get Emily off to school and then try to head straight down to the hospital. I would like to try and be there when the doctors make their rounds so that I can get info first hand and can update everyone. Thank you so much everyone for your prayers and willingness to help. The outpouring of love and prayers and encouragement continues to completely overwhelm our family. We love you all so much and we just know that God is working through all of you to wrap his arms around Kayli and us. We have been very Blessed with supportive family, friends, neighbors, community! May the Lord Bless each and every one of you and your families in all that you do.
The Interventional Radiologist who performed Kayli's procedure was pleased with how it went, and said that Kayli handled the anesthesia and everything very well. If you have googled the TIPS procedure I spoke of, you might understand a little of the dynamics...but let me just put it this way... the pressure in our portal veins is normally around 5, Kayli's was at 20. The shunting procedure lowered her pressure to about 3. All of the pressure in Kayli's portal vein is what was causing the backup of blood and the blood vessels in her esophagus and tummy to burst causing the life threatening blood loss situation. Kayli came back from the procedure still on the ventilator but resting pretty comfortably. They weaned her off of the ventilator over the course of the afternoon, Mark said they had her completely off around 4:30pm! YAY!!
She has been Facebooking and texting some updates to friends, and I know her and Mark have been resting off and on all evening. She is happy to be off of the ventilator but has a pretty sore throat. She still cannot eat though, and hasn't eaten since Thursday night. I think that is the hardest thing for her is that she is hungry. They will most likely keep her on IV nutrition for another day or so, maybe Wednesday or Thursday she can start on clear fluids, and probably stay on liquids for a couple of days after that. Not sure at all at this point when she will be able to come home, unless someone talked to Mark this evening and he hasn't passed on to me yet. And no idea at all of when she might be able to go back to school. Kayli is now considered most certainly a good candidate for a liver transplant. The doctors had first thought that she would have a decent outcome from the immunosuprresants and steroids and not suffer from all of the usualy liver disease symptoms, but these GI bleeds proved otherwise. They had planned to turn down the first few donor liver matches, focusing on the drug therapy...but that has potentially changed and they may take the first match. We are not sure though how long the wait will be, could be weeks or months still.
Tomorrow morning I will get Emily off to school and then try to head straight down to the hospital. I would like to try and be there when the doctors make their rounds so that I can get info first hand and can update everyone. Thank you so much everyone for your prayers and willingness to help. The outpouring of love and prayers and encouragement continues to completely overwhelm our family. We love you all so much and we just know that God is working through all of you to wrap his arms around Kayli and us. We have been very Blessed with supportive family, friends, neighbors, community! May the Lord Bless each and every one of you and your families in all that you do.
Sunday, November 15, 2009
Come on Platelets!
PLEASE VISIT http://www.giveblood.org/ TO LEARN MORE ON DONATING BLOOD AT THE REQUESTED CENTERS. YOU CAN DO EITHER DIRECTED DONATIONS (IN KAYLI'S NAME) OR YOU CAN DO "BLOOD USAGE REMIBURSEMENT" AND ASK TO ASSIGN THE VOUCHER TO KAYLI CURDA. REMEMBER KAYLI NOEL CURDA IS AT CHILDREN'S HERMANN MEMORIAL HOSPITAL IN THE MEDICAL CENTER.
Just got word that the center is stating there are no doctors orders for direct donations. The doctor is working on that at this time, he hadn't heard of that and wasn't sure. In the meantime I was told you can give this ID# and donate in her name and/or on the vouchers system in her name.
ID# 45132295-9317
Every little bit helps even if not in her name!!
Monday morning- They were not able to do the shunt procedure last night because Kayli's body/spleen is gobblin up all of the platelets they are infusing! So loaded her up on platelets through the night and still infusing as we speak. They kept her on the ventilator and upped the sedation so that she could rest comfortably through the night. Good news- there were no major incidents during the night. It seems most of her problems occur at night. Her 2 nurses Sean & Rob were awesome and on top of everything. Mark & I were even able to get a few hours of sleep down the hall in the Ronald McDonald house, and Mark got a shower.
So they say they will take her in about 20 minutes for the shunting procedure. Hopefully all will go well and she can get off the ventilator and not have any more bleeding incidents! Kayli has been impressing all of the doctors and nurses here as well, even on an ventilator, she has done pretty well and stayed pretty coherent except under sedation, she has been writing notes, using sign language, reading "Wicked!" and even asked for her phone & laptop. She was texting and posting on Facebook!! The doctors are impressed at how still and calm she stays and does not fight the ventilator (which is on a low setting).Everyone has asked how they can help- DONATE BLOOD!! No matter what type you are, you can donate in Kayli's name and she will get credit for it. They are encouraging everyone to find a "Gulf Coast Regional Blood Center" donation site, I have heard there is one on Hwy 242 in the Woodlands. Not sure where else you may have to google. And keep praying!
Waiting...
I arrived this morning to find Kayli on a ventilator. One of the scariest sites I think for a parent who is not prepared to see that. Mark was asleep in the corner, snoring loudly. The nurse was attending to her, and we laughed a little about the racket Mark was making.
After her 2nd upper endoscopy this morning, they left her intubated so that she could rest and not have to be re-intubated for her procedure today. It was just a scary thing to see. I am glad that I did not bring Emily with me this morning to see her sister. This morning Kayli is having what they call a TIPS- because the pressure in her portal vein is what is causing her GI bleeding, they will bypass this vein through her liver with a shunt. Thats the best way I can describe it. The dr said her situation right now is critical, and he sounds hopeful she will have a positive outcome with this procedure. At this time however, it is unknown how much longer she will be in the ICU, hospital, etc. Her kidneys are struggling a little right now, and dr said the dye they will use in the procedure may cause overload on them a bit and she may need a little dialysis to help them along.
Hopefully they will be done soon and she will be back in the room soon and not on the ventilator. Thank you all so much for your prayers and encouragement.
***Just in: they are bringing Kayli back to her room. They were unable to complete the procedure because her platelets count dropped again. They ordered platelets from the blood bank but they are out so having to order them from an outside source. So we wait, she is not back yet so I am not sure if she will continue to remain on the vent while they wait- they said the procedure may not be done until later today or possibly even tomorrow dependig on when they can get the platelets, get them infused, and get her platelet count back up.
They just wheeled her in and it looks as thought she will remain intubated on the ventilator. This actually may be best for her, she can rest and let the machine and meds work for her.
Quiet Saturday, not so quiet Night
I spent the day with Emily yesterday, getting her ready for and taking her to her Seussical auditions. Kept in contact with Mark throughout the day, things and stayed pretty quiet and not much to report.
Granny Norma went down to visit and ended up staying the night with Kayli so that Mark could come home and take a break, Kayli seemed to be doing well and was stable and even doing some walking around her room on her own. Late in the evening Kayli had some sort of reaction to what they think was Vitamin K injection. She'd had that before without any problems, but this time for some reason she reacted to it. Not sure of all that happened or measures taken, but it was another scary moment for Kayli and her Granny. After things settled down and Kayli had gone back to sleep, she awoke again vomiting blood around midnight. Mark headed back down to the hospital.
He called me where there, GI team was hand and took her to the OR again and performed another upper GI, but this time could not find the source of the bleed. But they are now talking about doing a TIPS procedure which is some weird shunting procedure...this scares me to death...and I would rather they find the source of the bleed before they do this major surgical procedure. If they do it they would be doing it today at 9am. SO Norma is now on her way home to stay with Emily so that I can head to the hospital as Emily does not wish to go to the hospital. Mark has not slept in about 24 hours, except maybe a couple hours here and there.
Can we get off this ride now? I didnt like it in the first place...but now I am REALLY not liking it. As I type this all of my animals (dog & 2 cats) are sitting around me...like they know I am upset or something. I cannot simply describe what I am going through- my heart ACHES for my beautiful daughter. Just starting out on a magic high school ride as a Freshman...will she ever get to finish normally?? She had so many plans for band, softball, and other activities...will she be able to continue any of them ever?
Your continues prayers are very appreciated and needed!!! OH- and could someone go mow my grass??? We got a stinking letter from the homeowners association tellling us to mow & edge.....jerks...LOL
Granny Norma went down to visit and ended up staying the night with Kayli so that Mark could come home and take a break, Kayli seemed to be doing well and was stable and even doing some walking around her room on her own. Late in the evening Kayli had some sort of reaction to what they think was Vitamin K injection. She'd had that before without any problems, but this time for some reason she reacted to it. Not sure of all that happened or measures taken, but it was another scary moment for Kayli and her Granny. After things settled down and Kayli had gone back to sleep, she awoke again vomiting blood around midnight. Mark headed back down to the hospital.
He called me where there, GI team was hand and took her to the OR again and performed another upper GI, but this time could not find the source of the bleed. But they are now talking about doing a TIPS procedure which is some weird shunting procedure...this scares me to death...and I would rather they find the source of the bleed before they do this major surgical procedure. If they do it they would be doing it today at 9am. SO Norma is now on her way home to stay with Emily so that I can head to the hospital as Emily does not wish to go to the hospital. Mark has not slept in about 24 hours, except maybe a couple hours here and there.
Can we get off this ride now? I didnt like it in the first place...but now I am REALLY not liking it. As I type this all of my animals (dog & 2 cats) are sitting around me...like they know I am upset or something. I cannot simply describe what I am going through- my heart ACHES for my beautiful daughter. Just starting out on a magic high school ride as a Freshman...will she ever get to finish normally?? She had so many plans for band, softball, and other activities...will she be able to continue any of them ever?
Your continues prayers are very appreciated and needed!!! OH- and could someone go mow my grass??? We got a stinking letter from the homeowners association tellling us to mow & edge.....jerks...LOL
Friday, November 13, 2009
Back at the Hospital...
SO many of you saw my post first thing this morning. Here's a run down of Kayli's day...well it really started last night-
Last night before Kayli went to bed, she was feeling a little dizzy. She drank some water and went to bed around 9:30ish. Somewhere in the wee hours of the morning, Kayli woke up her Granny and said she had felt like she needed to throw-up but couldn't. She sat at the toilet for awhile, but wasn't able to throw-up so thought maybe she didn't have to after all, and decided to go back to bed. She told us later that she had run into the wall on that attempt. Around 4am, she woke up again and stumbled into the bathroom, and felt dizzy, and she says she fell down and knocked some stuff over, which Granny heard. This time she actually threw-up, Granny Norma quickly woke Mark & I up, I went to the bathroom to inspect and Kayli was in fact vomiting blood, lots of it. I turned to Mark and said "we are going to the emergency room".
I went downstairs to call the doctors to make sure that is what they wanted us to do, as I was doing that I heard Mark having a hard time walking Kayli over to sit on the sofa in the gameroom. She was pretty incoherent and almost passing out on him, so he eased her to the floor and sat with her. I called 911, and Mark and I changed clothes while waiting for them to arrive.
When emergency help arrived, they took her blood pressure, and it was very alarmingly low. They loaded her up on the ambulance, I climbed in behind and we headed back down to Childrens Hermann Memorial with Mark following closely behind. Most of the ride down she was complaining of dizziness but for the most part ok- we were laughing at the IV tubing swinging wildly around her head with every bump of the ambulance. As we were pulling onto the street near the hospital, she told us she needed to throw-up again, I went to hand her a barf bag, and as I did she looked at me very blankly, stiffened up, and began having a seizure. Probably the scariest moment of my life- I can't even put it in to words. It only lasted a few seconds but its something I will not soon forget.
We arrived at the hospital, and they wheeled her into the ER. Things seemed to move pretty quickly after that, I had already called the liver doctor's PA, who had called him, who had already arrived at the hospital and was arranging for Kayli to have a room in the ICU. The worst part of the whole thing was the ER nurse trying to get an IV started, (the EMS had alredy started one, so not sure why they couldnt just use that one), she poked Kayli 4 times! Mark & I were so mad. She finally hooked up some fluids to the IV the EMS had started, but then was confused when it would not infuse...well dumb girl had left the tourniquet on!!!! Kayli quickly asked when she would get a PICC line again, LOL.
When we arrived up to the ICU- they got her settled in then she decided she needed to go to the bathroom and did not want to use the bedpan (who could blame her?). The nurse sat her up for a few minutes, and she did ok, then stood her up for a second and she did ok- so Mark and the nurse walked her to the bathroom. She said she felt ok the whole walk over, but once in the bathroom she went limp on them. Mark again told her just to ease to the floor, but it wasn't happening- she stiffened up on them and her eyes fixated again. I called for help and several came into the room quickly and they carried her back to the bed (another scary moment).
All of her doctors came in the room and it was decided that she would have a head CT scan to check for any potential brain bleeding, and a EGD (upper endoscopy) to determine the source of the bleeding. Dr Rhodes suspected Esophageal Varices, which apparently is common in Liver patients. They infused a quick and large dose of Albumin, and a unit of whole blood, then wheeled her to the OR.
The wait was long, but Dr Rhodes finally appeared and showed us pictures of the varices, and where he had banded them to prevent further bleeding. Also, her CT scan was clear, so the seizures were a result of the extremely low blood pressure. They will her back to the ICU where Mark and I met her. She was in a great deal of pain, so the doctor ordered Morphine. Mark and I left close to 4pm to come home. He showered, packed a bag for he and Kayli and went back. I am staying with Emily tonight. Apparently the symptoms Kayli are presenting with today, are what patients normally present with FIRST, she is just doing this backwards. We are not sure yet what this means as far as her timeline for a liver transplant, except that it makes it inevitable. Tonight she is receiving more blood transfusions and IV nutrition. She is really more upset that her weekend plans have been foiled again, she cannot eat solid food until Sunday, and she is likely to be kept in the hospital until Tuesday.
On a totally different note, we want to attempt to keep things "normal" for Emily, or maintain some sort of normalcy for her. In an effort to do that Mark and I decided to try not to change her schedule as much as possible. Emily has auditions for CYT's Seussical tomorrow afternoon, and I will be helping her get ready for that tomorrow and taking her at 4:30. So GOOD LUCK MIMI!!!!! I only hope she can focus on what she wants to do and not be too worried about her sister, but as of this evening I am not sure that is going to happen.
We again ask for your continued prayers for us and for healing for Kayli, and we thank you all for your words of hope and encouragement. As Kayli is in ICU- she can only have 2 visitors at a time this go round, and she is feeling a bit more weak. Again, you can send e-greetings to Kayli through the hospitals website- she is in ICU bed 7 (mine & Emily's lucky number!)
Last night before Kayli went to bed, she was feeling a little dizzy. She drank some water and went to bed around 9:30ish. Somewhere in the wee hours of the morning, Kayli woke up her Granny and said she had felt like she needed to throw-up but couldn't. She sat at the toilet for awhile, but wasn't able to throw-up so thought maybe she didn't have to after all, and decided to go back to bed. She told us later that she had run into the wall on that attempt. Around 4am, she woke up again and stumbled into the bathroom, and felt dizzy, and she says she fell down and knocked some stuff over, which Granny heard. This time she actually threw-up, Granny Norma quickly woke Mark & I up, I went to the bathroom to inspect and Kayli was in fact vomiting blood, lots of it. I turned to Mark and said "we are going to the emergency room".
I went downstairs to call the doctors to make sure that is what they wanted us to do, as I was doing that I heard Mark having a hard time walking Kayli over to sit on the sofa in the gameroom. She was pretty incoherent and almost passing out on him, so he eased her to the floor and sat with her. I called 911, and Mark and I changed clothes while waiting for them to arrive.
When emergency help arrived, they took her blood pressure, and it was very alarmingly low. They loaded her up on the ambulance, I climbed in behind and we headed back down to Childrens Hermann Memorial with Mark following closely behind. Most of the ride down she was complaining of dizziness but for the most part ok- we were laughing at the IV tubing swinging wildly around her head with every bump of the ambulance. As we were pulling onto the street near the hospital, she told us she needed to throw-up again, I went to hand her a barf bag, and as I did she looked at me very blankly, stiffened up, and began having a seizure. Probably the scariest moment of my life- I can't even put it in to words. It only lasted a few seconds but its something I will not soon forget.
We arrived at the hospital, and they wheeled her into the ER. Things seemed to move pretty quickly after that, I had already called the liver doctor's PA, who had called him, who had already arrived at the hospital and was arranging for Kayli to have a room in the ICU. The worst part of the whole thing was the ER nurse trying to get an IV started, (the EMS had alredy started one, so not sure why they couldnt just use that one), she poked Kayli 4 times! Mark & I were so mad. She finally hooked up some fluids to the IV the EMS had started, but then was confused when it would not infuse...well dumb girl had left the tourniquet on!!!! Kayli quickly asked when she would get a PICC line again, LOL.
When we arrived up to the ICU- they got her settled in then she decided she needed to go to the bathroom and did not want to use the bedpan (who could blame her?). The nurse sat her up for a few minutes, and she did ok, then stood her up for a second and she did ok- so Mark and the nurse walked her to the bathroom. She said she felt ok the whole walk over, but once in the bathroom she went limp on them. Mark again told her just to ease to the floor, but it wasn't happening- she stiffened up on them and her eyes fixated again. I called for help and several came into the room quickly and they carried her back to the bed (another scary moment).
All of her doctors came in the room and it was decided that she would have a head CT scan to check for any potential brain bleeding, and a EGD (upper endoscopy) to determine the source of the bleeding. Dr Rhodes suspected Esophageal Varices, which apparently is common in Liver patients. They infused a quick and large dose of Albumin, and a unit of whole blood, then wheeled her to the OR.
The wait was long, but Dr Rhodes finally appeared and showed us pictures of the varices, and where he had banded them to prevent further bleeding. Also, her CT scan was clear, so the seizures were a result of the extremely low blood pressure. They will her back to the ICU where Mark and I met her. She was in a great deal of pain, so the doctor ordered Morphine. Mark and I left close to 4pm to come home. He showered, packed a bag for he and Kayli and went back. I am staying with Emily tonight. Apparently the symptoms Kayli are presenting with today, are what patients normally present with FIRST, she is just doing this backwards. We are not sure yet what this means as far as her timeline for a liver transplant, except that it makes it inevitable. Tonight she is receiving more blood transfusions and IV nutrition. She is really more upset that her weekend plans have been foiled again, she cannot eat solid food until Sunday, and she is likely to be kept in the hospital until Tuesday.
On a totally different note, we want to attempt to keep things "normal" for Emily, or maintain some sort of normalcy for her. In an effort to do that Mark and I decided to try not to change her schedule as much as possible. Emily has auditions for CYT's Seussical tomorrow afternoon, and I will be helping her get ready for that tomorrow and taking her at 4:30. So GOOD LUCK MIMI!!!!! I only hope she can focus on what she wants to do and not be too worried about her sister, but as of this evening I am not sure that is going to happen.
We again ask for your continued prayers for us and for healing for Kayli, and we thank you all for your words of hope and encouragement. As Kayli is in ICU- she can only have 2 visitors at a time this go round, and she is feeling a bit more weak. Again, you can send e-greetings to Kayli through the hospitals website- she is in ICU bed 7 (mine & Emily's lucky number!)
Tuesday, November 10, 2009
Going home....
YAY! Kayli is being discharged to home today. We will continue Kayli's treatments on at Outpatient Basis at the Texas Liver Center and with her new Pediatrician Dr Ray. She will be returning to school on Monday, November 16th. I hope she can take the next few days to get caught up on school work!! She is most excited about getting to see her kitty, Lancelot.
We thank everyone so much for the outpouring of love and prayers, as well as the well wishes, balloons, gifts, and more importantly the hospital visits from everyone. You all helped tremendously to keep Kayli's spirits up during her hospital stay. Its been a long 10 days, and I am sure we are just beginning on our path; but we know that we will have lots of prayer warriors with us every step of the way. Our immediate prayer need is that Kayli's liver will begin to heal itself and the need for corrective medications will become less, her platelet count will improve, and she will not ever need a new liver.
Will continue to update this blog as it is extremely therapeutic for me, and keeps the prayer chain working!!
Below are some pictures from today...will have more upon our actual return home.
This is the amazing Dr Ray. He made things so comforting for Kayli and really made sure she understood everything going on. We will continue to see him on an outpatient basis which makes Kayli happy. She sure didn't mind waking up to him every morning!! :)
Starting to pack up this morning!
Taking a final weight this morning before discharge. When Kayli first started this ordeal with her visit to Dr Hampton on October 27th, she weighed in at 178lbs, which we found was all fluid!!!
Today's weight before discharge...see the scale below but its 143 lbs!!! :) She was thrilled!
Dad takes a load out to the car...dont worry there's still plenty in the room.....
We thank everyone so much for the outpouring of love and prayers, as well as the well wishes, balloons, gifts, and more importantly the hospital visits from everyone. You all helped tremendously to keep Kayli's spirits up during her hospital stay. Its been a long 10 days, and I am sure we are just beginning on our path; but we know that we will have lots of prayer warriors with us every step of the way. Our immediate prayer need is that Kayli's liver will begin to heal itself and the need for corrective medications will become less, her platelet count will improve, and she will not ever need a new liver.
Will continue to update this blog as it is extremely therapeutic for me, and keeps the prayer chain working!!
Below are some pictures from today...will have more upon our actual return home.
This is the amazing Dr Ray. He made things so comforting for Kayli and really made sure she understood everything going on. We will continue to see him on an outpatient basis which makes Kayli happy. She sure didn't mind waking up to him every morning!! :)
Starting to pack up this morning!
Taking a final weight this morning before discharge. When Kayli first started this ordeal with her visit to Dr Hampton on October 27th, she weighed in at 178lbs, which we found was all fluid!!!
Today's weight before discharge...see the scale below but its 143 lbs!!! :) She was thrilled!
Dad takes a load out to the car...dont worry there's still plenty in the room.....
Monday, November 9, 2009
Monday
Kayli started this morning with flurry of tests. Labs drawn at 4am, then an echocardiogram and MRI. All this teasting is to just evaluate her body for the liver transplant.
We rested for awhile and were visited by friends Lisa & Brandy. Then they moved us back up to the 10th floor. She ordered chicken for lunch, nice hamburger break...but her chicken was RAW- I mean they literally must've just taken the chicken off the farm!!! Last thing we need is salmonella! So we re-ordered her a lunch which hasn't arrived yet, and she is pretty hungry, and its been a couple of hours.
The Hematologists just came in and gave us good news though, her RBCs are looking good and her WBCs have doubled!! This is great news, still not where it needs to be, but better than what it was. Her platelets (clotting) are still where they were and not responding, but the dr said they are usually the last to respond to treatment and they may still yet turn around. In the meantime, the dr did say no softball which is pretty disappointing, but we knew would most likely happen, but it is ok for her to dance, but not sure yet the length of time she will need to be out of school.
So thats a quick update for today. Mark and I are both staying with her tonight since she may be released tomorrow, but they said wednesday is a possibility also. Emily is spending the night with her friend Makayla. Things are looking up for now.
ALSO IN::::: Dr Rhodes and his team stopped by, he is the pedi liver specialist we saw before being admitted. He is very hopeful that the drug therapy will work within the month. He is switching her to a different drug that has less side effects than Prednisone, but they have to wean her over to it slowly because there is a chance for a genetic mutation in her blood to reject it. So while they wean her over, she has to be monitored closely on an outpatient basis- which will also mean lots of trips to the Medical Center for us. Apparently the entire medical team will meet on Wednesday regarding Kayli's status, health, results...kind of like a review board. They are hopeful she will definately be released to go home tomorrow, but Dr Ray would like for her to stay home through the week and maybe return to school on Monday which is GREAT NEWS!! She is happy with that.
Many people have inquired also about mine & Mark's work statuses right now. Mark, luckily had 96 hours of sick time that he has been carrying since the bank was First American (several years), he also has some vacation time. He is ok for at least a few more days. As many of you know I started a new job the week that Kayli was first being diagnosed, so it has been a tough couple of weeks not working. Sadler Clinic Surgery Center allowed me to switch from Full time to PRN, so now that Kayli is stabilized and we may be able to set up her first few outpatient treatment appointments in advanced, I will have a better idea and can let my boss know my schedule and can work in a few days here and there until we get Kayli on a regular schedule. No we are not in the best of financial situations. I believe my brother-in-law will be setting up a fund for Kayli in the event that a Liver Transplant is needed, if that happens I will post it here as I know many are anxious to know how they can help. Also, while she does not need any further blood transfusions at this time, Gulf Coast Regional Blood Center is always in need of, and I am sure Kayli did use alot from the bank so they could probably use the replenishment!!!
We rested for awhile and were visited by friends Lisa & Brandy. Then they moved us back up to the 10th floor. She ordered chicken for lunch, nice hamburger break...but her chicken was RAW- I mean they literally must've just taken the chicken off the farm!!! Last thing we need is salmonella! So we re-ordered her a lunch which hasn't arrived yet, and she is pretty hungry, and its been a couple of hours.
The Hematologists just came in and gave us good news though, her RBCs are looking good and her WBCs have doubled!! This is great news, still not where it needs to be, but better than what it was. Her platelets (clotting) are still where they were and not responding, but the dr said they are usually the last to respond to treatment and they may still yet turn around. In the meantime, the dr did say no softball which is pretty disappointing, but we knew would most likely happen, but it is ok for her to dance, but not sure yet the length of time she will need to be out of school.
So thats a quick update for today. Mark and I are both staying with her tonight since she may be released tomorrow, but they said wednesday is a possibility also. Emily is spending the night with her friend Makayla. Things are looking up for now.
ALSO IN::::: Dr Rhodes and his team stopped by, he is the pedi liver specialist we saw before being admitted. He is very hopeful that the drug therapy will work within the month. He is switching her to a different drug that has less side effects than Prednisone, but they have to wean her over to it slowly because there is a chance for a genetic mutation in her blood to reject it. So while they wean her over, she has to be monitored closely on an outpatient basis- which will also mean lots of trips to the Medical Center for us. Apparently the entire medical team will meet on Wednesday regarding Kayli's status, health, results...kind of like a review board. They are hopeful she will definately be released to go home tomorrow, but Dr Ray would like for her to stay home through the week and maybe return to school on Monday which is GREAT NEWS!! She is happy with that.
Many people have inquired also about mine & Mark's work statuses right now. Mark, luckily had 96 hours of sick time that he has been carrying since the bank was First American (several years), he also has some vacation time. He is ok for at least a few more days. As many of you know I started a new job the week that Kayli was first being diagnosed, so it has been a tough couple of weeks not working. Sadler Clinic Surgery Center allowed me to switch from Full time to PRN, so now that Kayli is stabilized and we may be able to set up her first few outpatient treatment appointments in advanced, I will have a better idea and can let my boss know my schedule and can work in a few days here and there until we get Kayli on a regular schedule. No we are not in the best of financial situations. I believe my brother-in-law will be setting up a fund for Kayli in the event that a Liver Transplant is needed, if that happens I will post it here as I know many are anxious to know how they can help. Also, while she does not need any further blood transfusions at this time, Gulf Coast Regional Blood Center is always in need of, and I am sure Kayli did use alot from the bank so they could probably use the replenishment!!!
Sunday, November 8, 2009
Weekend break
This weekend was a nice break from a long week at the hospital. I have spent the weekend with Emily, getting her through her Aladdin shows. Today is the final performance with a Strike Party to follow, then tomorrow after I get her off to school its back to the hospital for me. The downside is I haven't seen Kayli all weekend. Everyone is telling me she is doing great though and has had fun with friends this weekend. Mark is on his way there this morning after spending my birthday with me last night.
Kayli's friends Cristene, Rachel, & Carly had movie day with Kayli yesterday. It was so nice for her and they had a blast. Even when Kayli needed to nap the girls just hung out and watch movies. They all wore matching shirts that say "Get Well Soon" & their names on the front, then on the back was a picture of the girls with Kayli earlier in the week, and "Team Kayli" with their slogan "You Betcha!" LOL It was really cute! Here are a couple of pictures Granny Norma got with her new camera phone!!
Tomorrow starts all the rug-a-ma-roo again. They will start drawing labs again to see how her blood cell counts are and if her clotting (INR) has improved over the weekend which would show the liver is or isnt responding to the Prednisone. The original thought was she could possibly come home on Monday, but now they are thinking more like Tuesday. She is getting a full work up from the transplant team tomorrow, checking all systems of her body. Once all that is completed and if they determine her bloodwork numbers are stabilized, then possibly she can come home to await a new liver. She wont be able to go back to school for awhile because of the medications she will be on, so Mark and I are going to contact Conroe ISD to see about a possible program they have when things like this happen...I guess its a step away from Homeschooling. So still alot of wait and see...
I just realized my post from yesterday did not post.... so here is what I wrote yesterday...
This has certainly proved to be a long week. But I almost can't believe its Saturday already! I don't have much different news to report, so just going to share with you the past couple of days...
Yesterday was relatively quiet. Doctors must have been late in making their rounds. I missed all physician updates. I did not arrive early enough to the hospital to hear from Dr Sanders, and I left too early to hear from Dr Navarro. But its ok, Mark was there and I am sure if there had been anything real significant he would tell me. I think it was probably all just more of the same. Her INR- or clotting factors are still not responding to treatment, but the doctors say sometimes it may take up to a month to show a true response. So she is still considered a high risk for bleeding. She is on an immunosuppressant, so her risk for getting sick is pretty high right now too. She had asked the doctors if she could take a little 4 hour daytrip out of the hospital on Sunday to go see her sister and CYT friends in "Aladdin", but for now she will have to settle for what video I can get. The doctors say its a very high risk for them and if something were to happened, they would be in very big trouble. I can completely understand.
She is officially on the liver transplant list- and they apparently have given her a higher MELD score than they originally thought they would. If a liver comes along that is a good match for her, they will meet urgently to decide if it is the right time, and they have the final say and can turn down the liver or accept it for her. If they turn it down then it goes to the next best candidate, if they accept it we will have 2 hours to get to the hospital and get her ready for a 10-12 hour surgery. They have given her a weekend long break from blood draws and labs. Monday morning at 4am she will get her next labs drawn to re-evaluate her need to stay in the hospital. They may send her home, but it will be awhile before she can return to school if at all due to the risk of getting ill. If that happens Mark and I may look into the option of Homeschooling- we have lots of homeschooling friends that can help point us int he right direction I am sure. :)
They have ordered a step-down in the level of care she is recieving and may be moving her to a different floor on Sunday. The only time they will have her on heart monitors now is while she is receiving medications. Great news for Kayli- when she started in this ordeal 2 weeks ago, Kayli weighed in at 178lbs. As of last night she weighs 149lbs which is only about 5lbs above normal! So poor baby was carrying around 30lbs of extra fluid in her legs and belly! Today a group of Kayli's band friends are coming and bringing the movie Twilight. The child life coordinator is going to allow the kids to watch the movie in the movie theater that is on the 9th floor of the hospital!! She is so excited. The kids coming are all excited as well! Mark is on his way there now to play host Daddy, but we just realized that I have the camera! :( Should be a very fun day for Kayli.
As for me, I will be spending my birthday at CYTs Aladdin. I haven't been able to help my committee with shows- and it's very hard for me to do things like that...just step back. I will get Emily ready for her show, and see how much video I can get for Kayli. Then after the matinee, Mark will be taking me out for a dinner date for my birthday!! Emily will be busy with her evening show and Granny Norma is staying with Kayli at the hospital tonight. Uncle Daniel & Aunt Sunny head back to California today. It was so wonderful having them here and I know Kayli loved spending time with them! Last night we took them and Granny & Grandpa to see Aladdin and we all had a great time. Thats all for now- haave a great weekend everyone :)
Kayli's friends Cristene, Rachel, & Carly had movie day with Kayli yesterday. It was so nice for her and they had a blast. Even when Kayli needed to nap the girls just hung out and watch movies. They all wore matching shirts that say "Get Well Soon" & their names on the front, then on the back was a picture of the girls with Kayli earlier in the week, and "Team Kayli" with their slogan "You Betcha!" LOL It was really cute! Here are a couple of pictures Granny Norma got with her new camera phone!!
Tomorrow starts all the rug-a-ma-roo again. They will start drawing labs again to see how her blood cell counts are and if her clotting (INR) has improved over the weekend which would show the liver is or isnt responding to the Prednisone. The original thought was she could possibly come home on Monday, but now they are thinking more like Tuesday. She is getting a full work up from the transplant team tomorrow, checking all systems of her body. Once all that is completed and if they determine her bloodwork numbers are stabilized, then possibly she can come home to await a new liver. She wont be able to go back to school for awhile because of the medications she will be on, so Mark and I are going to contact Conroe ISD to see about a possible program they have when things like this happen...I guess its a step away from Homeschooling. So still alot of wait and see...
I just realized my post from yesterday did not post.... so here is what I wrote yesterday...
This has certainly proved to be a long week. But I almost can't believe its Saturday already! I don't have much different news to report, so just going to share with you the past couple of days...
Yesterday was relatively quiet. Doctors must have been late in making their rounds. I missed all physician updates. I did not arrive early enough to the hospital to hear from Dr Sanders, and I left too early to hear from Dr Navarro. But its ok, Mark was there and I am sure if there had been anything real significant he would tell me. I think it was probably all just more of the same. Her INR- or clotting factors are still not responding to treatment, but the doctors say sometimes it may take up to a month to show a true response. So she is still considered a high risk for bleeding. She is on an immunosuppressant, so her risk for getting sick is pretty high right now too. She had asked the doctors if she could take a little 4 hour daytrip out of the hospital on Sunday to go see her sister and CYT friends in "Aladdin", but for now she will have to settle for what video I can get. The doctors say its a very high risk for them and if something were to happened, they would be in very big trouble. I can completely understand.
She is officially on the liver transplant list- and they apparently have given her a higher MELD score than they originally thought they would. If a liver comes along that is a good match for her, they will meet urgently to decide if it is the right time, and they have the final say and can turn down the liver or accept it for her. If they turn it down then it goes to the next best candidate, if they accept it we will have 2 hours to get to the hospital and get her ready for a 10-12 hour surgery. They have given her a weekend long break from blood draws and labs. Monday morning at 4am she will get her next labs drawn to re-evaluate her need to stay in the hospital. They may send her home, but it will be awhile before she can return to school if at all due to the risk of getting ill. If that happens Mark and I may look into the option of Homeschooling- we have lots of homeschooling friends that can help point us int he right direction I am sure. :)
They have ordered a step-down in the level of care she is recieving and may be moving her to a different floor on Sunday. The only time they will have her on heart monitors now is while she is receiving medications. Great news for Kayli- when she started in this ordeal 2 weeks ago, Kayli weighed in at 178lbs. As of last night she weighs 149lbs which is only about 5lbs above normal! So poor baby was carrying around 30lbs of extra fluid in her legs and belly! Today a group of Kayli's band friends are coming and bringing the movie Twilight. The child life coordinator is going to allow the kids to watch the movie in the movie theater that is on the 9th floor of the hospital!! She is so excited. The kids coming are all excited as well! Mark is on his way there now to play host Daddy, but we just realized that I have the camera! :( Should be a very fun day for Kayli.
As for me, I will be spending my birthday at CYTs Aladdin. I haven't been able to help my committee with shows- and it's very hard for me to do things like that...just step back. I will get Emily ready for her show, and see how much video I can get for Kayli. Then after the matinee, Mark will be taking me out for a dinner date for my birthday!! Emily will be busy with her evening show and Granny Norma is staying with Kayli at the hospital tonight. Uncle Daniel & Aunt Sunny head back to California today. It was so wonderful having them here and I know Kayli loved spending time with them! Last night we took them and Granny & Grandpa to see Aladdin and we all had a great time. Thats all for now- haave a great weekend everyone :)
Thursday, November 5, 2009
Calling Dr House...
Can we get Gregory House in ...uh... the...house??? LOL
The Rheumotologist came by again today and said he is still working to rule out things. Apparently Lupus was a candidate but he doesn't think it fits any longer.
This morning the doctors made their rounds with updates, Mark and I had not made it back yet, but thank goodness Aunt Sunny is a journalist!! She took excellent notes!
The biggest news for Kayli is that her white blood cell count has stabilized. Its still not good, but its not bad and not fluctuating. Because of this, they took her out of isolation. This is definately a step forward and she was extremely excited. Of course, all of her school friends that now come to visit may be disappointed because they don't get to dress up!! They discontinued the IV antibiotics and are putting her on oral antibiotics. Most of her blood numbers have stabilized, however her clotting is still really high and her lack of clotting is reflecting that the liver is not functioning in that aspect. Her bruising is actually getting worse, but everything else is looking ok. No more blood transfusions for now. They are putting her on iron pills and continuing the diuretic and Prednisone (steroid).
A Ray of Hope! :)
The transplant surgeon came by and spoke with us this afternoon. He does not wish to transplant her at this time. He is looking at all of the factors and he doesn't think she needs one immediately. He did tell us however that her attending Teams may look over all the lab results and decide it is needed if her INR does not go down.
The transplant team will be visting up over the next few days in order to do a work up on her and get paperwork prepared and get her in the system so that she is able to be put on the transplant list if in case the drug therapy does not work.
It seems to be the course of action now is to continue the drug/steroid therapy indefinately until such time it is determined the therapy is not working. The hope being that she will go into remission sooner rather than later. Hopefully they can get the clotting going. We felt like what we were told yesterday was that either way it goes, Kayli is going to be on medication for a very long time. They are keeping her at least until Monday, if her numbers continue to improve and if the INR goes down, there is a posibility she can go home on Monday on the steroid therapy and be monitored closely until something happens one way or the other. On Monday however if her numbers do not lok better, they are talking bone marrow biopsy as well as some other treatments.
Thats all I have for now. Mark stayed with Kayli and I am heading down there now to try and make it in time for her attendings to round with their latest news.
Kayli did have some visitors last night, members of the Liberty Belles (Oak Ridge drill Team)...she said now all she needs is some guys from the football team! LOL
The most exciting for her was her English teacher Mrs Miller who apparently has a connection to the Astros- Mrs Miller brought Kayli an autographed Jeff Bagwell jersey!!!! Kayli was ecstatic!!! Kayli LOVES Jeff Bagwell, her favorite Astro player of all time. Also, when next season starts, the Astros have invited Kayli to go down on the field prior to a game and meet the guys!! HEAVEN!! Her sister was very jealous! :)
The Rheumotologist came by again today and said he is still working to rule out things. Apparently Lupus was a candidate but he doesn't think it fits any longer.
This morning the doctors made their rounds with updates, Mark and I had not made it back yet, but thank goodness Aunt Sunny is a journalist!! She took excellent notes!
The biggest news for Kayli is that her white blood cell count has stabilized. Its still not good, but its not bad and not fluctuating. Because of this, they took her out of isolation. This is definately a step forward and she was extremely excited. Of course, all of her school friends that now come to visit may be disappointed because they don't get to dress up!! They discontinued the IV antibiotics and are putting her on oral antibiotics. Most of her blood numbers have stabilized, however her clotting is still really high and her lack of clotting is reflecting that the liver is not functioning in that aspect. Her bruising is actually getting worse, but everything else is looking ok. No more blood transfusions for now. They are putting her on iron pills and continuing the diuretic and Prednisone (steroid).
A Ray of Hope! :)
The transplant surgeon came by and spoke with us this afternoon. He does not wish to transplant her at this time. He is looking at all of the factors and he doesn't think she needs one immediately. He did tell us however that her attending Teams may look over all the lab results and decide it is needed if her INR does not go down.
The transplant team will be visting up over the next few days in order to do a work up on her and get paperwork prepared and get her in the system so that she is able to be put on the transplant list if in case the drug therapy does not work.
It seems to be the course of action now is to continue the drug/steroid therapy indefinately until such time it is determined the therapy is not working. The hope being that she will go into remission sooner rather than later. Hopefully they can get the clotting going. We felt like what we were told yesterday was that either way it goes, Kayli is going to be on medication for a very long time. They are keeping her at least until Monday, if her numbers continue to improve and if the INR goes down, there is a posibility she can go home on Monday on the steroid therapy and be monitored closely until something happens one way or the other. On Monday however if her numbers do not lok better, they are talking bone marrow biopsy as well as some other treatments.
Thats all I have for now. Mark stayed with Kayli and I am heading down there now to try and make it in time for her attendings to round with their latest news.
Kayli did have some visitors last night, members of the Liberty Belles (Oak Ridge drill Team)...she said now all she needs is some guys from the football team! LOL
The most exciting for her was her English teacher Mrs Miller who apparently has a connection to the Astros- Mrs Miller brought Kayli an autographed Jeff Bagwell jersey!!!! Kayli was ecstatic!!! Kayli LOVES Jeff Bagwell, her favorite Astro player of all time. Also, when next season starts, the Astros have invited Kayli to go down on the field prior to a game and meet the guys!! HEAVEN!! Her sister was very jealous! :)
A very good day...
Yesterday brought another round of visitors- which continue to do a world of good for Kayli. She gets tired, but she LOVES seeing everyone. The morning was somewhat quiet, the Rheumotologist came by and talked with us and got the whole history again. Seems he is going to try and figure out if there is something everyone else has missed. He is going to be running more tests. While speaking with him, the Transplant surgeon came by, but said he did not want to interrupt as it was important that the Rheumo. finish his discussion with us, and said he would come back. We did not see him again, and he will probably come by today which is better since I dont think Mark and I were there at the same time at any one point yesterday evening...and we do not wish to have the transplant surgeon speak to us without both of us there.
While I am speaking of doctors, Kayli's attending Dr Sanders and the GI specialist following Kayli came to talk to us. I was thankful to have both Mark's mom and our friend Celey present for the discussion. Thinks are looking a bit brighter it seems. They are stopping the blood transfusions now. Her blood cell counts have increased very slightly, but still not even close to where they should be. They would like to spend the next few days administering the Prednisone, to see how her numbers (both blood & liver) respond without the transfusions. If all goes well the next few days, she may be able to go home on Monday and be monitored and treated from home until such time as the team agrees her numbers are just not going where they need to go, she needs to go higher on the list. Also, if her blood counts do not increase as needed by Monday, they will most likely at that time do the bone marrow biopsy.
Hopefully today we will speak with the transplant surgeon and learn more.
Kayli herself had a wonderful day. She again had lots of visitors, and as I said, this seems to be the key to keeping her happy and willing to fight. Her "Auntie" Brandy came by for a visit, along with 2nd cousins Eddie & Lidia Martinez. And Ms Celey (Geometry teacher) came by again and brought another box of well wishes from her classmates. Brian, Sheila, Lexie & Sierra came by for a visit, and Brian's sister Laura who ironically works on the 5th floor of the hospital!!! Kayli's friend Faith & her mom came by. They where actually with Kayli & I last Friday when I gave Kayli the news she was going to be admitted to the hospital and recieve blood transfusions. Kayli;s former softball teammate Brittany Kellet came by, she was so happy to see Brittany!! Kerrie and Megan Karr, friends of our from CYT came by for a visit as well. I hope I haven't missed anyone....
OH YES- how could I almost forget this..... Mark went to pick up Emily from school, and he stopped by the high school and picked up 3 of Kayli' friends...Cristine, Rachel, & Carly. This was truly adventure as I am convinced those 3 are silly crazy!! LOL Kayli had alot of fun with them there. They definately kept her laughing!! Earlier in the day Kayli had taken a shower for the first time since she was admitted. I think it really helped her. So she was nice and clean for her visitors last night! :) When the girls were there, her nurse told her she could go for a walk as long as she wore a mask, didnt touch anything, and Mark was with her. So Mark escorted Kayli, Emily, Brittany, Cristine, Rachel, & Carly through the hospital. They went to the gift shop and up to the 10th floor park, and back. It was a good nice long walk and Kayli enjoyed herself and loved being able to get up and out of her room for the first time. She didn't look like a girl needing a liver trasnplant!!! I wish I had taken pictures but oh well.
If you read Kayli's status updates on Facebook you can tell that she is in high spirits now, and it makes me happy just to see her feeling positive! She is getting greetings and cards and balloons from everyone, and she just loves it!! Keep 'em coming because it is really helping her to know so many are thinking of her.
I forgot to mention that another team of doctors visited with us yesterday, this time it was a team of Pediatric Psychologists. They wanted to make sure she is doing well. I think she is doing remarkably well, each visitor that comes in she wants to give them the update, and bravely tells them what will happen if steroid therapy does not work.
Last night Uncle Daniel and Aunt Sunny stayed the night with Kayli to give Mark and I a break and some time with Emily. We haven't heard if there were any issues last night, so I am assuming not, but I guess we will get our update when we get there.
Will hopefully post again this evening. :) We love you all and may God Bless each and every one of you who has touched my daughter's heart and prayed for healing for her. Ok, going to see Kayli now....
OH almost forgot BLOOD DONATION. Kayli is O+. You can donate in her name by contacting the Gulf Coast Regional Blood center. There is one in The Woodlands:
Address:
3091 College Park Drive, Suite 130
The Woodlands, Texas 77384
Phone:
(936) 321-8440
Here are more pictures to enjoy from yesterday...
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