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.....

Testing :) why didnt i think of this sooner?

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!!!

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 :)

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! :)

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...

Ups and Downs...

As uneventful as today was, this evening was equally eventful. Full of highs and lows. Kayli had several guests today which really, REALLY brightened her day. In the wake of some pretty tough news, it was just what Dr Mama ordered! Today was an emotional rollercoaster...

Shortly after my afternoon update, Dr Navarro & Dr Sanders came in after having seen the pathology on the liver. The news was what we had feared. Though they could not 100% confirm the diagnosis of the Autoimmune Hepatitis, they strongly believe that is what we are dealing with. Apparently everything is pointing to that. The bad news was that there is extensive damage to her liver. They are re-starting a course of Prednisone and Albumin- as well as continuing anti-biotics and blood products based on labwork. We are really praying that drug therapy will do what it needs to do. But, in the event that it doesn't, a transplant team is being made aware of Kayli's case, and a transplant physician will be visiting us tomorrow to counsel us on what will happen next, and Kayli is being put on a list.
Her low blood cell counts are believed to be in conjunction with the lack of liver function. And even after receiving a full course of platelets, plasma, and whole blood today, her numbers are still extremely low. They do not see the need for a bone marrow biopsy at this time though after seeing the liver pathology, but she will continue to receive transfusions.

BUSY NIGHT of Visitors

Before the doctors arrived, Mark's softball Team Mom and friend of ours Robin arrived for a nice quiet visit, and while she was here Kayli's Biology teacher Mrs Graham arrived with a large bag of goodies from her entire Biology class! Kayli was so excited. The bag was signed by all of her classmates.
After the doctors left, CYT friends Mrs Robin, Rachel, and Hannah came for a visit. Hannah & Rachel did an excellent job of making Kayli laugh by singing her dinner order while she was on the phone with "room service". It was also good for me to hear how the first weekend of "Aladdin" shows had gone and sounds like we are missing a swimmingly good time with Thomas who is playing Genie!! We will be sure to try and attend a show this next weekend. The next visitor was Jennifer, the nurse who took care of Kayli her first 2 days in the hospital on the 10th floor. She was very sweet to stop by on her way out of work.
After a short break, one of Kayli's former coaches paid a visit along with my friend Minerva and 4 softball girls from school. They were a riot, and Kayli made several comments about having a wonderful time when they were there. She was so happy today with all of her visitors!! Paige, Erin, Kalei, and Michelle brought alot of joy and silliness with them this evening, something Kayli has needed. They also brought 2 huge posters, 1 signed by the entire high school softball team, and the other signed by the high school band!! She loved them!! The girls even danced for Kayli. LOL
It was so good to see her smiling and laughing. And I thank God for such wonderful friends as Rachel, Hannah, Kalei, Erin, Paige, & Michelle.
OH AND MINERVA- thank you so much for the hug!
Uncle Daniel & Aunt Sunny (Mark's brother Daniel and his wife Beth) arrived from California this evening to help with Emily or anything else. Tomorrow night Mark and I might let them have a turn staying the night with Kayli, and Friday I believe they will go see Emily in Aladdin. THey brought Emily this evening to see Kayli, and the girls were happy to see eachother. I think Emily is still not quite sure what to make out of everything, and I think this is going to be a difficult time for her.

Tonight ended with a couple of scares. Not long after all the visitors had gone and Mark and gone home with Emily, Kayli started complaining of chest tightness and said she felt like her heart was racing. On the monitor her heart rate was jumping around a little. Though I attributed this to the flurry of activity today and maybe some anxiety, I told the nurse who called the doctor. The doctor on call came in and examined her, said he didnt see anything readily alarming but to be on the safe side was going to order a chest x-ray and EKG, both of which were normal and didn't show anything unusual. Shortly after that, Kayli cried out that she was hurting. I asked where and she was grabbing her side, right over her liver. I called the nurse, who again called the doctor, who was able to calm Kayli, and the pain subsided. She adjusted herself in the bed and though she is not entirely comfortable tonight, she has calmed down and is trying to get some rest. In the meantime, she the stays by asked me to call Mark and asked him to come back. Since he got back to the hospital about an hour ago, things have calmed down significantly other than the continuous cycle of drugs she is receiving through the night.
Lesson learned: we will begin monitoring the length of visitations starting tomorrow. We want everyone to come see Kayli, and she needs it and it makes her so happy. But we will need to keep visits down to probably an hour. I know that coming from the Woodlands is a long way to come just for an hour, but please don't let that deter you from visiting as it really helps to lift her spirits. The other lesson learned: she does better when both of us are here.

So here are some reminder tidbits: Kayli is at Children's Memorial Hermann in the Medical Center, Room 982. Visiting hours are 9am-9pm, and at this time she is on reverse isolation which means you will need to wear a mask when coming into her room, and you will have to wear a plastic gown and gloves if you wish to touch or hug her. Also, if you wish to send or bring gifts (totally not necessary) please do not send flowers or plants. She seems to really be enjoying personal notes. And if you go the hospital's website you cen send an eGreeting which gets delivered to her room! Also if you have been sick recently please don't come. She is enjoying getting text messages, her number is 832-764-2567 (text messages only). Enjoy some pictures from today...

Tuesday

Things seem semi- quiet today as we await the results of the liver biopsy from yesterday. Hopefully anytime now. Kayli is in good spirits, and has asked to take a walk around the floor. A walk is not possible at this time however because they just started her on a 6-hour transfusion of whole blood and blood products. She is starting whole blood now, to be followed by plasma, and then platelets. She is also looking forward to having visitors soon and we expect some to come by this evening.

Dr Sanders came by and spoke to us just a short while ago. They are no longer as set on AutoImmune Hepatitis as they had been now that she is having the bone marrow problems. They may be doing a bone marrow biopsy soon but want to wait to see how she handles the whole blood and more transfusions as well as the biopsy results.

I keep reposting her location so that if you would like to come visit her you do not have to read all the way through the blog to find it. She is at Children's Memorial Hermann in room 982 in the Texas medical Center. I also discovered today that if you go to their website, there is a place where you can send a Patient e-Greeting!! It gets to delivered to her room, I thought that was cool, be sure to included her room #982. :)

Here is a picture for today...receiving her latest blood transfusion and being visited by a very large dog...LOL (Grandpa went a little overboard HA HA HA)

Kayli- she is amazingly strong! :) Homecoming

Kayli Noel Curda- Oak Ridge High School Homecoming 2009, isn't she stunning?





Kayli and Ryan- one of her best friends and date for the occasion, aren't they adorable together?





Kayli- this was the start of some of her health problems, but you would never know it to look at her. She is ready for her amazing night!




Kayli and her friends Cristine, Ryan, Hannah, & Danielle...they ALL look stunning! What a wonderful time they had...

Long Night, Long Day

I stayed with Kayli last night. Mark went home with Emily to take a break and spend some time with her. Mark's mom and step-dad are also staying at our house to help with Emily. It was a long night without much sleep. Kayli received another transfusion last night, then throughout the night they administered two rounds of antibiotic. Around 4am, during the second round, Kayli began to feel what they call "red man's syndrome". She was itching all over and her face was flushed. Apparently this is a completely normal side effect of Vancomycin. The nurse, Lauren, gave her Benadryl and the itching subsided, however Kayli was awake and could not go back to sleep. Between 5:30 and 6 we both started to doze on and off, but at 7am the flurry of people started again.

Kayli's bloodwork was still not great, but good enough to do the liver biopsy so they jumped ont he chance to do it while conditions were good. Before we even had a chance to brush our teeth or change our shirts, the anesthesiologist had come to do his assessment and a transport team had arrived to take Kayli to Interventional Radiology to do the liver biopsy and also insert the PICC line. She acted cool, calm, and collected but the look on her face said otherwise. I think it all happened so quickly- neither of us quite knew how to react. I texted Mark and he and his mom were on their way back down to the Medical Center, but weren't going to arrive in time to see her before the procedure.


I followed the transport team with Kayli, but they went down several back hallways and elevators, and I got completely turned around. I am sure it didn't help that I was flustered anyways. We finally arrived in a holding area where another team of doctors and nurses greeted us. SHe was able to watch a little of "Regis & Kelly", then they wheeled her away with one last "I love you Mommy".

I did my best to hold together until she was out of my sight, or I was out of hers rather. Then I made a beeline back to her room so that I could change and brush my funky teeth finally. :) It was like a maze finding my way back, but I learned in Memorial Hermann if you can just find your way back to the atrium with the escalators, you can find yourself. I headed upstairs and rain into my sister-in-law, Claudia; I dont think I have ever been so happy to see a familiar face. I changed and we headed to the children's surgery waiting room, and were joined by Mark & his mother shortly after.

The wait was long, at least 3 hours. Mark & I both began to worry a little- as this procedure was not just a normal liver biopsy. Because of her ascites and risk for bleeding, they did an ultrasound guided biopsy through the jugular vein in her neck. I had never heard of this before. Finally Dr Cohen, the Interventional Radiologist who oversaw the procedure came out to talk to us. He said the procedure went well and he had gotten a very nice size peice of liver for pathology and the PICC line insertion was simple. We were able to see her in the recovery room, and she was sore but seemed to be doing very well, and they shortly trasnported her back to her room. She was ordered on bed rest for at least 6 hours to avoid risk of the liver bleeding- which disappointed her. She was tired and out of it, but also ready to move around. I left this evening to come home and see Emily and get some rest. When I left she was getting ready to get up and move around and I ordered dinner for her also- she ate a hamburger.

Shortly before I left, Dr Sanders, one of the attending physicians, came by and gave us an update:

He ordered more labs drawn to test for liver function. He wants to see if the Albumin and Prednisone have made any changes. Her ascites and edema have improved greatly (fluid in amdomen and legs). The antibiotics she is receiving almost continuously is to prevent infection in the abdomen from all of the fluid retention- basically to protect her other organs. We will find out the biopsy results tomorrow, I only hope I am down there early enough to be with Mark and Kayli when they arrive. Her bloodwork numbers are improving, though not as fast as they would like. But her white blood cell counts are up which may lead them to remove her from the reverse isolation! :) He is a little concerned with some numbers regarding her kidneys, but he did not specify the concern, just that some number regarding her kidneys is elevated and he wanted to re-test. Also they are now involving the Hematologist. The thought being, she has received several transfusions, and receiving another tonight, but her blood is not responding the way they would like, and apparently even the worst liver damage possible would not prevent trnasfusions from helping in such a young, otherwise healthy girl. They suspect and issue with her bone marrow, and following the liver biopsy results, may order a bone marrow biopsy to determine why her bone marrow is not doing what it is supposed to be doing. Mark said she seems to be in good spirits tonight and sleeping off and on, but is very anxious to have visitors, and would like very much to see her friends since they do not expect to discharge her anytime soon.

Again if you would like to visit, she is at Children's Memorial Hermann, Room 982. You can text Kayli at 832-764-2567. She is enjoying keeping up with all who have texted her. She cannot receive flowers at this time- but balloons, stuffed animals, and Twizzlers are appreciated :).

Visitors!!

Well it has taken me several hours to get this blog updated. I keep starting and then getting interrupted :) At one point I was ready to hit "publish" and then half of my post dissappeared!

It has been a long day. But as I look over at Kayli and see her texting friends and smiling and watching t.v.- I realise she is a little happier this evening than she has been in the past couple of days, and her spirits have been lifted a little.

FRIENDS

Kayli has had lots of visitors today. First to come by was Celey, her Geometry teacher. (Obviously she is more than just a Geometry teacher to our family lol) Knowing Kayli was in great hands, Mark & I took the opportunity to run home and shower, care for the animals, and pick up my car to bring to the hospital. While we were gone The Hamilton's, Rob, Dawn & their children came by. Rob is one of Kayli's softball coaches and his daughter Alicia is on Kayli's team.
Kayli's friend Austin and his mom Donna came by, then Uncle Robert & Aunt Claudia. Lisa & Sarah Anderson, and the Manuel family. I think all the visitors did wonders for Kayli. She's tired tonight, but feels cared for.



LATEST

Several different developments today. They moved her to the IMU (not the ICU as I previously thought). IMU stands for Intermediate Care Unit. It is right next door to the ICU- she is being monitored more closely and this way she is close to the ICU if needed. This is a step up from the care she was receiving last night. The dr has ordered a PICC line. They were debating between a PICC line and a central line, but the PICC line is what they got consent for...however that was around 4pm, and neither have been done as of yet. Because of all the difficulty the nursing staff is having drawing labs over and over and giving meds, they want to put in this line to give them easier access. This is a bit of a scary ordeal.
Another development is that her white blood cell counts are really low, so they have put her on "reverse isolation". This just means in order to protect her from infection, all visitors have to put on a gown, glove, and mask. Whats weird about this is that all the nurses and aids have to put on gown and gloves as they come in and out, but Mark and I dont have to.

She received another transfusion tonight, so I am sure they will be drawing labs again soon to see how this last dose of Fresh Frozen Plasma worked to increase her platelets and clotting. She is on a restricted diet- low to no sodium which is hard for a picky kid! :) They are giving her oxycodone for pain, as they do not want to give Tylenol or Ibuprofen. She is having headaches so severe that light and sound are bothering her. They are also giving her 2 different kinds of diuretics, which seem to be working. She was so excited this evening when she looked down and could see her veins and bones in her feet! The last we were told was they still wanted to try for the liver biopsy tomorrow, though they have begun treatment for the Automimmune Hep. Since they think it may be genetic, my mom is going to see if she can find out my fathers medical history tomorrow, which may be a pretty large task. All in all, things are different but the same. We still don't know any more than we did yesterday.

EMILY

My Mimi. She has had a long weekend as well. She stayed with our good friends through CYT, THe Anderson's. SHe says she had a lot of fun. Her first weekend of Aladdin shows were this weekend. Of course since Mark & I couldn't be there, the rest of CYT spoiled her rotten...but that's ok. I felt awful for not being there for her, was very torn, but in the end felt like this was where I needed to be. THere were plenty of mommy's to care for Emily at her shows. She was able to see her first horseshow this morning also, and even got help her friend Sarah groom her horse. She LOVED it! I overlooked one tiny detail though, how seeing her sister would affect her. When she arrived this evening, I didn't even stop to explain to her what she was going to be seeing and why. I threw the gown and mask on her and ushered her into the room, knowing that Mark, Kayli, & myself were anxious to see her and then I turned to continue greeting our visitors. She came into the room and sat down, and started to cry. She's 9- I just didnt even realize what I was doing. We tried to calm her, but it took seeing her friends Tootie & Lauren dressed up in the gowns as well to take her mind off the situation. She had fun visiting with them and showing them her new Gypsy costume, but every few minutes asked when she could go home.


Mark & Emily are at home tonight, with Granny & Grandpa visiting. Mark said she is ok he talked to her on the way home. Hopefully all will work out so that we can all go see Aladdin as a family next weekend. Will continue to keep updating as I can. Especially tomorrow after we know more regarding the biopsy and bloodwork. Homefully we are moving in a positive direction.
Thank you to all of our wonderful wonderful friends and family for all of your love and support. And especially thank you to all of our CYT friends...no- family, for all of your support, well wishes, and hardwork with the Aladdin production and care of Emily-

Note- the nurse just came in to remind us that Kayli is to be NPO as of right now...no food or drink after midnight which means they plan to do her procedure tomorrow.

Kayli Update

So I havent kept up with this blog in a long long while. I thought this might be a good time to start back up.

Text messaging & emailing is getting difficult and Facebook is blocked in the hospital so it is hard to update and have everyone get the latest. This way I can send all this link and you can go to it at your leasure and stay up to date.

For now, I think most everyone has the beginning of the story... if you don't I'm sorry- just know that this came on pretty suddenly.

Basically, Kayli's liver is not functioning correctly- but it was a very round about way for us to find this out. But on Friday 10/30 Kayli saw a Pediatric Liver Specialist in the medical center. They did bloodwork and and prescribed her a diuretic. They ordered a liver biopsy which was to be done on Monday 11/2 on an outpatient basis to determine what is causing the liver to not work. They suspect 'Autoimmune Hepatitis', which they believe was given to her by genetics. At this point there is no history of anything through Mark or myself, but truth be told I do not know enough about my father's medical history to rule it out.

We went home on Friday with a pretty good feeling, like this was something that was manageable and the liver biopsy would be a big deal...but not that big of a deal. We asked Kayli what she wanted to do Friday and she said she wanted to go to the football game with the band, she wanted to be with her friends. We felt this was a good idea. So we dropped her off at band practice. In the meantime we were waiting for the dr's office to call us back with a time for the liver biopsy to be done on monday. I was glad we were back at home, I was able to get Emily ready for Opening Night of Aladdin. Shortly after dropping Kayli off at band, Mark spoke with the Physicians Assitant. Kayli's bloodwork came back and the numbers were not favorable- platelets low and clotting factors not appropriate. So in order to do the biopsy on the liver on monday, they needed to admit her to the hospital so that she can receive a blood transfusion and vitamin K injections to help with that.

She was admitted Halloween morning. Things were very slow going at first. Once they got us checked in, it seemed like there was hours in between each happening. They had tried to avoid doing the transfusion, but even after the vitamin K, she was still anemic and her numbers were worse...not better. So the transfusion was ordered, and finally started around midnight. Early this morning they drew more blood and ran more labs. Again, her numbers are getting worse, not better.

There was a flurry of activity this morning around 8am. Nurses, pedi transport nurses, doctors, and a team of interns all came in and out and scared Kayli (& us) pretty good.

Bottomline this morning, they do not want to wait to do the biopsy to start treatment on her liver. They have started her on a regimen of Albumin and Prednisone and continuous monitoring. They will be inserting a Central Line to help with med administration and frequent blood draws, and they will be moving her to a room that is next door to the ICU (IMU is what they are calling it). For now they are predicting she will be here in the hospital at least a week. She may have to have more transfusions, and they will be doing another abdominal ultrasound for comparison and set a baseline. They also have her on Fall Precautions, do not want her falling and bleeding or bruising any more.

Her spirits were really high yesterday, not so much this morning. Mark and I are starting to talk about a schedule of who needs to be where. Emily has one more show this weekend, and then need to work out how she will be cared for. And at this point our animals have not been fed or let out to potty since yesterday morning (poor babies!!) We both really wanted to go since we are only in one car and need more clothes and a shower, but we also both DONT want to go and want to be here for all the new moving and treatment.

Mom is holding up ok, or at least I think I am. I am very torn, I want and need to be here with my daughter, but I also started a new job this past week, and not sure where I should be starting tomorrow. Dad is doing ok, he is trying to remain his calm collective self- but obviously not succeeding.

Thats it for now I think. If you would like to visit Kayli, please feel free. I know she would love the company as she can only take so much of Mark and I. She is in Children's Memorial Hermann hospital in the Tx Medical Center. She feels a little silly being in a pediatric hospital, but all involved felt like this would be the absolutely best method of care for her given she wont be 15 til next month and doctors and nurses will be WAY more attentive & involved. Currently- the number to her room is 713-704-9171 Room# 1033...but as I said that will be changing today, just not sure when we will let everyone know. You can also text her a message of encouragement at 832-764-2567, be sure to put your name.