Friday, January 29, 2010

a few pics...

so Torie got to play for a few mintues in the snow. She loves it so much!




IT'S HERE, IT'S HERE!!

So the snow is finally falling here in centertown. It began about 11 am, and already the van and car are white, as are the tree tops. The yard and road are quickly catching up. I am glad I am at home with Torie. I am also hoping that Paul can come home early because I do not want him driving on the ice. I plan on taking photos of this snow fall-if I can stand the cold. Man, looking out the front window, I can see the snow falling fast! I can't believe I am about to say this, but, I hope we get several inches! O my, I just hope everyone stays safe and warm!

Saturday, January 16, 2010

Get Well Soon!

I wish Kali and Alex would feel 100% soon! I am sorry you guys are so sick. Hugs and Kisses from all of us!

Thanks!

Thank you to everyone that has been praying for Katie. She came yesterday from Atlanta. She is sick either from a nasty stomach virus or it could be side effects from her meds. Katie's mom and doctors are not sure which yet, so they still need your prayers! Again, thank you for your prayers and for thinking about little Katie!

Thursday, January 14, 2010

american red cross

The American Red Cross is in desperate need of donations for the families of Haiti. Please go to AmericanRedCross.org to help. I cannot fathom the idea of that happening, being there and not knowing what was happening around me, where my family was or if they were even alive. Please pray for these families and all of the workers who are there to help. I know any help would be appreciated.

special prayers needed

Katie is a sick little girl that needs extra prayers. She was sick all day yesterday. I fear she may need a heart sooner than summer, and that breaks my heart. Here is the newest update from Katie's mom Tonya.

Oh my goodness...WHAT A DAY!!! A day I do not care to repeat! Katie woke up around 6 am complaining about her head hurting really bad and then she threw up. She had a temp of 100.4. They gave her some tylenol. She moaned and groaned for most of the morning. She didn't want us to turn on the lights, open the blinds, or anything. Almost like a migraine. They then gave her some motrin and zofran. She weighed 14.4 kg. this morning. Yesterday they took off over ONE LITER of fluid!!!! She lost almost 2lbs. So I was thinking she may be dehydrated between all that coming off and also still draining 150 from left and 50 from right. They started her on a little IV fluids but were hesitant to give her a lot since she is having all this fluid retention problem. They took some labs (blood and they also tested the fluid from the pleurel cavity). She threw up again, quite a bit and in front of the dr. He came back and looked at her ears and throat since I told him Shane had been sick, but they came back ok. They gave her some more zofran. They were a little concerned with the headache since she couldn't seem to kick it, so they ordered a ct scan, just to make sure something more serious wasn't going on. Since they wanted to use contrast during the scan they had to put an iv in her right hand! I absolutely HATE seeing my baby having to be poked so much. I just tell her to look at me and squeeze my hand as hard as she needs to and I have to work very hard to hold back my tears (although I admit sometimes they do escape). Thank goodness the scan came back clear! One piece of good news! Some other good news is that the fluid they tested didn't show any infection, so that is great as that is one of the first places they would suspect an infection to be (the other is the PICC line). Before the scan she had thrown up again and bless her soul, she didn't have anything to throw up, because she hasn't eaten or drank much of anything today. They have kept her on IV fluids as of right now. One of the worst things was that they wanted a uncontaminated urine specimen, which means they had to get it using a catheter. OMG....the tears did escape from my eyes during that. Thank goodness she did still have some of the ketamine they gave her for sedation for the scan in her. She would look at me with the most pitiful face and cry, "Why mommy? OWWW....it hurts! Make them leave mommy!" Just rip my heart out now and throw it on the floor. The tears came out of my eyes during that. They had to try two times and when I told her they were trying to get pee, she said, "I've got to pee mommy!" She was wanting to just pee. Then she said, "I can't pee in my bed!" This kills me that she is going through all this! They finally got a specimen and then she did pee in a pull-up. Good love her she is sleeping now and I just pray the med helps her not remember it very well. She did throw up later tonight for a total of 4 times today. Her temp is back up also at 100.6. She got some more tylenol for the time being. Dr. Shri thinks that it is probably a combination of the fluids coming off too fast and getting dehydrated some and that she may have a little stomach virus. They are going to get labs again around 4am I think and do a complete panel. So far nothing is showing up, but the nurse says it can take two days to know for sure. So I figure we are here for at least 2 more days or 2 months, or it feels like we are moving into this room. Ugh! I am praying she feels like a new woman in the morning. She was very clingy and either wanted in my lap (which was fine with me until every part of my body started falling asleep) or in the bed. Please say a special prayer for her. Thanks Uncle Mike and Aunt Ann for coming down to visit. Sorry Katie wasn't feeling too well. Thanks also to Charlisa and Bill for coming down and sitting with us during all this and Charlisa please tell the kids that made the cards for Katie, THANK YOU! It was very sweet of them! I would also like to thank my co-workers. They are trying to help in many different ways to make it easier for me to be here with Katie. I just wish that bills would stop when a loved one got sick at least until they got better. Thank you to all the many churches that have taken up love offerings and all the family and friends that are helping as well. We feel so very loved! Please pray for two heart buddies down here as well. Little Braden had his surgery and has been having some breathing issues. The last I heard was that he may have to go back on the vent. Another is for our neighbor here. They wheeled him out on a stretcher with a big grin on his face. He got his new heart...his 2nd new heart! Sending prayers that all goes well with him as well!
Tonya-mom of Connor-8 and Katie-3-HLHS
www.caringbridge.org sitename: katiebracken

Friday, January 8, 2010

transplant meeting update...

Here is Tonya's latest update for Katie. Please think about your children as you read this. Keep this in mind the next time your little one is doing something their not supposed to, or you " just need a break"...what if this was your child? I have kept Torie close to me since she was born, but things like this make me want to never let her out of my sight! Tonya's update has made me cry and even be sick. I cannot imagine being in her shoes. This is truly something no parent should ever deal with! Here's the update:

Met with Dr. Mahle and his coordinator. Dr. Shri Desponde sat in also. He was very thorough in telling us about the transplant. Pretty much anything we would have asked, he told us before we could ask. I pretty much held it together for the most part of the meeting. I don't think I blinked much for fear of those tears behind my eyes escaping. I did shed some tears when he said we would more than likely outlive her. We know that is a very big possibility, but no parent wants to hear those words coming from someone's mouth. He said it gently, but still, I couldn't hold back on that one. He thinks right now we aren't in an immediate situation. We have a little time to process, discuss, and make some decisions. Shane wants to wait until closer to summer and I understand that with work and all, but I am fearful that the longer we wait, the sicker she could become, and the more difficult the recovery. He talked of her antibodies being high which he said is expected from anyone that has had multiple surgeries due to the exposure of blood products, shunts, etc. I am just terrified. I don't know the right thing to do and I am so worried I will make the wrong decision. God please help us make the right one.

Part 2
Dr. Maher came in later today and said that the plan for Katie is to take her slowly off milirinone, so that she doesn't have to go home on that since the Viagra is basically the same thing just in oral form instead of IV. She will go home on the octreotide which means she goes home with the PICC line and IV pump (although I think it may be smaller in a backpack or something). He wants to TRY to let her stay at home for a couple of months. He wants us to come down once a month or so for an evaluation to make sure she is still doing ok. He feels that it will be safe to have her home and try to wait until closer to summer for transplant. I guess ballet will be out for her since she will be wearing that pump thing. Shane knew that he had kids, so he asked him if it was one of his, is this what he would do and he said yes. He wants her to have as normal a life as possible right now. He is looking at trying to get us home Sunday or Monday. I just pray she stays healthy and strong. We will have a home health nurse coming to our house every day for a month or so. Insurance has approved everything which eases our mind some on that aspect. Whenever we get the page that a heart is available they want us to go by ambulance or air. The woman asked how we are doing and I just wanted to say, "How do you think we are doing?" Of course she had to ask if we need to talk to someone and I just want to say, "When are we supposed to do that?" between Katie's appt., work, homelife, etc. I guess this is my outlet in some ways. I can't talk about my feelings very much without becoming too emotional and losing it. Much easier to type it. They want everyone that will be near her to have both flu shot and H1N1 shot. Shane and I will get both here we think tomorrow if they let us. The dr. said the pharmacist said most are saved for parents of bone marrow patients, but she was going to see what she could do. It's been a rough day once again for me, but Katie continues to laugh and smile. God bless her soul. We did take her downstairs last night when it was snowing and let her feel the snow landing on her (briefly as it is frigid!!). We filled a cup with snow and Katie came upstairs and started throwing snowballs at Nurse Jennifer and Natalia! Oh those huge belly laughs sure can ease the tension. We also came back to the room and made a little mini snowman. The snow is still on the ground here a little. Connor went with Charlisa, Bill, and their kids to their home to play for a while. I'm sure that's good for him. I hope he behaves! Katie is taking a nap while she is getting frequent vitals due to them dropping the milirinone in half today. I think it will be stopped tomorrow. Please continue to pray for us. All the doctors really feel that transplant is where we will be. We knew her heart was very unlikely to last a long time, but we just wasn't expecting it to be so soon. It being this soon also means that it is highly likely she will need another transplant when she is a teenager. I know doctors don't know everything, and miracles happen everyday (her just being here is a miracle), but it seems as of now this is what is meant to happen. I feel by God putting us here at this time with several families waiting on transplants or have had transplants, meeting friends on Facebook and here that have been down this path, He is trying to prepare me for this event in sweet Katie's life. We've made it this far and even though it's hard to see how we will get through this, He always does get us through. I never in my life thought I would be able to care for a medically fragile child, but there is nothing in this world I wouldn't do to help her or my Con Man!

Katie update

update from Katie's mom:

I feel like vomiting...we are supposed to meet with the transplant team around 10 EST. Please keep us in our prayers. I don't know if I will be able to hold it together through this meeting!
Tonya-mom of Connor-8 and Katie-3-HLHS

Thursday, January 7, 2010

katie update-prayers please

This is the latest update from Katie's mom. They really need prayers and support. Katie also needs letters/cards, etc sent to her to lift her up! Tonya says Katie loves receiving things. The address @ the hospital is:
Children's Healthcare of Atlanta at Egleston Sibley Heart Center
Cardiac Stepdown Room 2144-Katie Bracken
1405 Clifton Rd NE Atlanta, GA 30322
address at home is
245 South Magnolia
Whitwell, TN 37397
Here the update:
It's been a busy day for Miss Katie...in a good way. She woke up in a pretty good mood. We had the chaplain stop by to check on us and pray for Miss Katie. It was so cute when he first came in. Katie was wearing her princess robe and he came in, got on one knee, started bowing and saying, "Hail, Princess Katie!" over and over. Katie loved it and laughed and laughed. She kept the biggest grin on her face. He talked some with me about transplants and checking on me. I still have to fight back tears and can't talk very long or seriously about it without tearing up. Then Miss Stephanie, the child life specialist, came in. Katie absolutely ADORES her! We got to enjoy some more big grins and belly laughs. When she sees Stephanie, she always wants to go to the playroom to paint. I went with her this time so mom could get her shower. While we were there she went and got another little girl to come play with Katie. Her name is Hannah, and she is the cutest thing. They enjoyed painting and even painted some for their brothers. I talked with her mom while they painted and find out that she is also almost 4 and she had a heart transplant after her surgery. She wasn't here for heart issues this stay. It was so good to talk to her and to see Hannah. They came over to our room and Katie played with Hannah's horses while Hannah enjoyed Katie's dolls and the dollhouse that we swiped from the playroom. I believe that she was an angel sent by God to let me see it will be ok. I thought it was amazing when I found out that Hannah was a suite mate to our little heart angel buddy, Tyler, from around Katie's first surgery. Marcus and Tina were so inspiring to us during that difficult time. Small world isn't it! Katie took a good little nap, and then we were surprised by Daddy coming into the room. He decided to go ahead and bring Connor and Wanda down. So Katie ventured downstairs and we visited with them. We were also visited by Charlisa and Bill again today. It's great to have some distractions! Thanks guys for the fresh fruit and the baby doll and accesories for Katie. She is sleeping with the twin dolls by her side with her Bible in between! Later tonight, we met our neighbors. I've seen them in their room, hall, cafeteria, etc. but hadn't had a chance to talk with them. We did today and come to find out he is here for his SECOND heart transplant. He has also battled cancer twice and won! Then to make their family's story even amazing was the fact that his sister also had a heart transplant. My goodness I can't imagine going through it twice. They were a very nice family and Katie loved the little baby sister. I am keeping both families in my prayers that all goes well. Once again I think it was God putting them beside us. On top of that we received a few cards, some prayer cloths, and a gift from another heart friend done the hall. I plan on meeting Braeden and his family sometime. I try to not knock if blinds are pulled. I know you sleep when you can around here. I saw that he was here on Facebook! It's amazing! Shane found out today that insurance has approved the transplant to be done here, which a big relief, because some don't if it's out of state. The case worker here keeps calling because she is trying to set up the things Katie will need when we get to go home and wait for a heart (I still can't wrap my brain around that...it will take some time). They are planning to send her home on the IV milirinone. I'm really not sure how that will work. I think they have a little backpack or something they can carry it in. Not really looking forward to that though. They did tell us by her being on milirinone though, that that is the 1st step to a transplant. Now, don't get me wrong, I am still praying for a miracle that Katie doesn't have to endure another open heart surgery so soon. But it really seems that God is trying to prepare us for that and if that is what it takes to keep Katie, we will accept it. By the way, did I mention that Charlisa was looking up the meaning of Katie's name and in Chinese it means "change means healing"? I thought that was ironic because this would be a huge change in her life. I've had some people ask about setting up a bank acct. for Katie. I am not one to ask for handouts and I have extreme difficulty asking for help, but we are facing a life changing event and I do believe I will have to swallow my pride and accept the help that God is sending our way. A facebook friend (thanks Maranda) looked into what I would need to do to set up one and so today I did it. Here's the infomation and PLEASE do not take this as we are begging for money or that you have to send any or anything. This account will only be used for things that will help Katie. I hope I have this right. Please let me know if it doesn't work. It's at
First Volunteer Bank of Tennessee
131 South Cedar Ave.
South Pittsburg, TN 37380
(423) 668-4505
Account # 702485599 The lady that helped me was Cindy Johnson. She was very nice and helpful. I've also been informed that a Christian author from Nashville, TN say a prayer being asked for Katie through Facebook and wants to have a benefit book signing for her. All proceeds would go to her. I haven't gotten any details about that, as you can see my free time is at midnight and after. I'll let you know about that later. Thanks Laura! Her son also had a heart transplant here! Another Facebook friend! Thank God for Facebook! There is a special group just for Katie called Prayers for Katie Lauren Bracken and the last I saw it had over 1200 members since last Wed.!!! We have people praying for Katie in Dubai, Germany, Canada, and even South Africa, not to mention all over the United States!!!! As far as Katie's health...she remains in pretty good spirits. We are still draining a lot! We've gotten close to 500 out of the left I think and 138 out of the right. Insane amount of fluid. I think they may start her on the other medicine sometime this week instead of waiting. It doesn't seem the Viagra is making any difference. Of course, who knows...there is always hope and I'm NOT giving up!!
Tonya-mom of Connor-8 and Katie-3-HLHS

Monday, January 4, 2010

prayers needed!!

An online friend of mine has a 3 yr old daughter with a heart condition. The 3 yr old is in Atlanta, with a lot of fluid around her heart. From my understanding the doctors are down to the last 2 meds they can try before she needs a heart transplant. A HEART TRANSPLANT. She's 3!Please please pray for Katie and her family. Katie is a beautiful little girl with lots of grins. I am sitting here typing and looking at her Christmas card and crying. How and why does this happen? Please pray for this family.

Saturday, January 2, 2010

so funny

ok, so I found this on another board I go to. I have no idea who wrote it though. If you do, please let me know and I will add their name!

ZIPLOC BAGS - male, because they hold everything in, but you can always see right through them.
SWISS ARMY KNIFE - male, because even though it appears useful for a wide variety of work, it spends most of its time just opening bottles.
KIDNEYS - female, because they always go to the bathroom in pairs.
SHOE - male, because it is usually unpolished, with its tongue hanging out.
COPIER - female, because once turned off, it takes a while to warm up. Because it is an effective reproductive device when the right buttons are pushed. Because it can wreak havoc when the wrong buttons are pushed.
TIRE - male, because it goes bald and often is overinflated.
HOT AIR BALLOON - male, because to get it to go anywhere you have to light a fire under it... and, of course, there's the hot air part.
SPONGES - female, because they are soft and squeezable and retain water.
WEB PAGE - female, because it is always getting hit on.
SUBWAY - male, because it uses the same old lines to pick people up.
HOURGLASS - female, because over time, the weight shifts to the bottom.
HAMMER - male, because it hasn't evolved much over the last 5,000 years, but it's handy to have around.
REMOTE CONTROL - female... Ha! You thought I'd say male. But consider it gives a man pleasure, he'd be lost without it, and while he doesn't always know the right buttons to push, he keeps trying.