pEOPLE Matter. invest Forward.

Savannah has always been a very conditioned athlete. She has played travel softball and travel basketball since she was 6. This part of her story is to show how fast this disease took control of her heathy heart. On Sunday the 17th Savannah played a softball game in a rain storm she made the comment that it was one of the most enjoyable games she had played. Savannah attended track practice the rest of the week. On Wednesday the 20th she ran an extra 3 miles at home. Thursday the 21st Savannah did not feel well but I encouraged her to push threw and go to the meet. Not feeling well she ran her fastest 100 meter that she had ever ran. Her next event was the 200 meter and she struggled to finish saying she really wanted to quit ( she had never wanted to quit ever before ). Her coach scratched her out of the rest of her events, Savannah chose to ride the bus with her team rather than ride with me. I picked her up and she went straight to bed. Friday the 22nd Savannah still didn't feel well and had a temperature her mother thought she should stay home. Savannah called at 11:30 and said she couldn't breathe. The doctor took a chest x-ray and said everything looked fine. Assuming she had some sort of virus told her to drink plenty of fluids and rest. Savannah was awake most of the night throwing up and did not wake us. Saturday the 23rd the doctor started her on an IV because of dehydration and wanted to transfer her to a Topeka hospital because he had found some fluid around her heart. We met 3 great EMTs there , one of them told me do not let them go by ground that Savannah needs to be flown to Children's Mercy Hospital. Thank you !

Savannah arrived at Children's Mercy sometime after noon and they started running tests on her. They inserted tubes to drain the fluid around her heart. Savannah was moved to the P.I.C.U. in the early evening because of the fluid.

Before I go to sleep tonight, I am asking for prayers. My daughter was flown to Children's Mercy this morning. We still have no answers but she is in the best of care. Was moved to the ICU due to fluid surrounding her heart. They needed to drain the fluid because there was to much pressure. Doctors here are working hard to figure out what is wrong. She is very ill and not doing very well. Please pray for her to overcome this and find a diagnosis. Thank you for your prayers and being here for my family. Hold your babies tight, you never know.

Many more tests today they found that the left side of her heart is extremely thick. The drainage of the fluid seemed to work.

The draining of the fluid went well. Some drainage still in her tubes. They have found some heart damage also. There is hardening on the left side of her heart that they think is permanent. She has infection all through her body. Her vomiting has finally stopped. I think today is the start of a long process. Hopefully some answers too. Thank you for all of the prayers!

Savannah broke out in a bad rash it has the characteristics of shingles. We were also informed today that Savannah was in need of a heart transplant. We are going to have to cram a lot into the next few days. Most families have somewhere around 6 months to get threw all the meetings that we have to get done in a couple of days.

Update on our beautiful girl, we found out around 2:00 this afternoon that Savannah is in need of a heart transplant. She is also in total isolation. Because of stress and low immune system, she has shingles. No visitors until the shingles are gone. Our entire world has changed in a matter of seconds. I don't know what to say what to do. When the Doctor told us the news I broke down. Savannah motioned me to come to her for a hug. She told me not to cry, to stay strong and we will get threw this. Such a grown up thing to say, she's right.

Monday night I took Chris to the Ronald McDonald house around 5:00. I told Savannah that we would watch the Royals game that night. Savannah was able to eat for the first time in 3 days. Her oxygen levels were not good all night but the nurse didn't seem to be concerned. Around 9:00 Savannah needed to use the bathroom as I stood up to leave the room she went into her first cardiac arrest. After working on her for what seemed like forever they finally pushed her past us going to surgery to put her on life support. They stopped long enough for us to see her. I have coached Savannah most of her life so I knew if she could hear anything it would be coach talk. I told her right here right now one eight ( her softball number) you have to fight threw this you have to keep fighting!

Savannahs cardiac team is in hopes she can make the transplant list by tomorrow. Savannah is trying to respond to us all day we can see her eyes move and her arm at times when she hears us talk to her. That night the nurses set up a make shift sink to wash her hair. While they were brushing her hair out she moved her hand toward her face, the nurse ask if she had an itch and she nodded! Chris and I talked to her for awhile then Savannah pointed to me and made motions for me to plug her phone in. I knew then and there she had no brain damage.

Savannah will make the donor list tomorrow. It's sad to think a family will lose a loved one so our daughter can live. If you are not a donor, please change that. This could be you , your child, friend or family in need. On the brighter side Savannah opened her eyes tonight when she seen us she started to cry. She then pointed to dad and made signs to him to charge her phone . That's my girl! She also let us know she is in a lot of pain. She's on morphine every 30 minutes. We are both exhausted and am trying to answer everyone's questions.

Savannah has been in and out of a deep sleep but when awake, has been using our cell phones to communicate. She wrote something for everyone. It says I am fine having dreams. She must have gotten her strength from her daddy's side. Meetings all day will update tonight.

Meetings every hour today starting at 8:00 we get an hour for lunch then meetings from 1:00 until 5:00. These are the greatest people I have ever had the pleasure to meet. No one is here just for a paycheck. Savannah made it onto the donor list at 3:00 this afternoon. She is classified as a 1-A top of the list. They are monitoring Savannah very close , but most is being done behind the scene's. Savannahs track team had a meet today. A very touching moment all the teams there had a prayer circle that stretched around the football field. Pretty awesome!

I apologize now but am just to tired for posting an update. Was not a good day for any of us. I do want to thank all the amazing students for the prayer circle. We cried but it was a good cry. Need some sleep.

Early this morning Savannah was taken into surgery. The ecmo hose's in her leg are leaking. She came out fine , bleeding stopped. I headed home to get some bills paid and get some bank paper work. While I was gone Chris was told that they are going to draw blood to see if Savannah has Leukemia, her white cell count is way high. She may need to give a marrow sample if the blood draw is not conclusive enough. On the donor list for less than 24 hours and her donor status was put on pause. Savannah is very alert and is communicating well. Today Savannah and I were talking (her typing on her I pad ) I referred to her as 18 ( her softball number) and she started crying I ask what was wrong and she typed....I remember when I couldn't see or feel my body but I could hear you telling me to fight 18 keep fighting, we both broke down. Remember this... keep talking they can hear you.

Savannah has had 3 blood transfusions and now is in for surgery. She has tubes the size of garden hose's in her leg and with all the meds and blood thinners they can't stop the bleeding. We are so scared. How much more can her little body take before she gives up? I shouldn't post this but I'm scared.

At 12:05 in the morning one of Savannahs doctors came in and said we have a diagnosis!! She has Acute Necrotizing Eosinophilic Myocarditis. They started treatment around 12:30. There are only 31 cases in the world Savannah makes 32. Savannah is now know as the Rainbow Unicorn , because of the rarity of her diagnosis. An echo was done at 10:00 and as soon as the technician scanned one pass I had three doctors smile and say its amazing. They will start a slow wean off the ecmo . They took Savannah off the Morphine today because of allergic reaction. Savannah was throwing up all night and was shaking so bad as a reaction to taking her off the Morphine.

We are having good results with the high steroid doses. This may not change much but will give her more time while waiting on a donor heart. Her doctors are going to try to wean her off the ecmo machine, that is the bypass machine, a very slow wean. Savannah's donor listing is on pause until we get lab results telling us if she has a certain kind of cancer. Then it is a push of a button and she is back at the top of the list. We do have a diagnosis but we are keeping it private for now. Mike and I thought that would be best for now. Only 31 cases of this in the world now 32. We have been told that Savannah is being called the Rainbow Unicorn because of the rarity of her diagnosis. On another note most of you know I have Multiple Sclerosis and suffer from severe fatigue so please understand my not getting back with you. I have been trying but lack of sleep and stress are kicking in with all of us. I will leave you with my good night text to Savannah..... I love you baby girl! You are my world. You already have my heart but if they would let me , I would have them put it in your body. I am sad I have to leave to sleep. I love you to the moon and back!!

Doctors just got done with morning rounds , her numbers look great! Still weaning her off ecmo and will have an echo done in 30 minutes and plan to clamp the ecmo machine to see how the left side of her heart is functioning on its own. The bad news is she has been vomiting all night through her breathing tube and is having shivers so bad they looked like seizures. They think this is withdraw from the pain meds. Savannah is heavily sedated now for the rest of the day. She was so worried about us last night getting our rest. Such a trooper , so strong and brave. Hoping to get off this scary machine while we wait for a gift.

Savannah is doing better this evening. She is in good spirits and using a bell tone on her phone to get her dad and her nurse's attention, a lot. Off to bed and hope to post good news tomorrow.

Savannah had a good night . Having some tests and an echo done soon and I think we may have some good news to post in a bit. Pray!

Just took Savannah back to surgery. They are taking her off the bypass machine . The steroids were a blessing and her heart is functioning on its own! Will take her off the breathing machine later. Will have a lot more answers I'm sure as to where we go from here. Out of 32 people in the world diagnosed with this Savannah is the youngest.

Savannah is off life support and off the breathing machines!!! She is her sassy self. Everyone is calling her a miracle. Now we are both just spending time with her and waiting to find out our next step.

Savannah is doing well this morning. Still some vomiting and her nurses said she did not sleep at all last night, she would not stop talking. Very moody because of the pain meds , steroids and lack of sleep. Her numbers still look good. Her oxygen has been a little low. She is definitely not herself today. She has physical therapy later today and will give an update this afternoon. #savannahstrong

Savannah went from her silly self to being very emotional today. She is remembering a lot and seems to think crying is a sign of weakness. Savannah is anything but weak. I want to give Mark a huge thank you. Savannah was so moved by having you and the softball team sign her bat. Can not thank you and the girl's enough!

Another good night! Savannah doesn't understand why all the staff is saying she's amazing or a miracle. I explained that knowing how strong she is , God chose her to educate others on this. Her diagnosis is Acute Necrotizing Eosinophilic Myocarditis. That's a mouthful. She is just needing a lot of rest and physical therapy. Still not able to or wanting to eat.

A wonderful full night of sleep for Savannah last night. She ate two crackers and is working hard in physical therapy. We have not received an official answer yet but we would not be surprised if our strong brave girl goes home with her own heart. She could still need a transplant but we are hopeful that she will not have to go through that. Either way , she will have a lot of meds and follow up appointments the rest of her life. A whole new lifestyle for her to adjust to but she is here and looks like she will live a long normal life. That's all we ask for. Hope to take her outside with a wheelchair for a bit today and will post some pics. Love to all of you!

I hope we're not jinxing ourselves but would like to share with everyone that has been following Savannah's journey. Savannah will be leaving Children's Mercy Hospital in about a week in time to make her 8th grade graduation. She will also be leaving with her heart. She is truly a miracle. Mike and I could not get through this without your love and prayers for our daughter. Thank you is not enough. She still has a long life of meds and appointments , but it will be a long life! #savannahstrong

I am resting now but want to share a group text from Mike.... Savannahs heart flow is 68 the doctor says it is better than hers! The heart is returning to size and the thickening has lessoned . One of her doctors has been here for twenty years and has never seen a recovery like hers!! #savannahstrong

Great day! Savannah is getting ready for a CT scan then a MRI of her brain later. She will have two more MRI's Monday that she will need to be sedated for. Things are going great, she is even up and walking!!

Erin... One thing I've learned in the last couple weeks with Savannah being in the hospital is to not take life for granted. You never know when life will throw you a curve ball. Savannah this fight that I'm training for is for you, I will win this fight! Even when I want to quit I think of you being in the hospital and watch you fight this battle and it motivates me even more to train my ass off and get ready.

Linda... Best mothers day present for my sister in law...Savannah is waiting to move from the P.I.C.U. to a regular room then hopefully able to go home

Shelby... Savannah was able to move out of the P.I.C.U. today so we were able to take the kids with us! They were so happy to see her. We are so proud of how strong she has been and is doing so well now! Your a true warrior!!!

God is great !! We are going home !!!

Driving threw Silver lake almost home with our baby girl. This is the best day ever!!!