Archive for the ‘Health’ Category

Visitation and Funeral in Eudora

Monday, December 15th, 2008

Please note that the Visitation and Funeral are in Eudora. The address is:

Warren-McElwain Mortuary in Eudora, 1003 John L Williams Dr, Eudora, KS

It is one block east of Peach St and off Rd 1400. You cannot miss the building because it’s standing alone on the south side of Rd 1400.

Princess Isabelle…We Love You

Thursday, December 11th, 2008

Just after 8 pm, Isabelle was given her Angel wings. A chariot pulled by unicorns carried her off as an entourage of magical creatures, Princesses and Princes followed closely behind. Isabelle has gone to heaven to be with God and we will miss her dearly.

Thank you for the prayers. We love you all.

More information on her services will come soon.

Our Beautiful Princess Isabelle

Thursday, December 11th, 2008

We have no idea how to say what we need to say, so we will keep it very simple: Isabelle is not having a good day. She had blood pressure issues and her heart went into arrest again this morning. They got her back, but the arrest was around ten minutes. She is currently stable, but they are going to assess her neurological function in four to five hours. We fear that this event will take too much of a toll on our little Princess.

We don’t know what the future holds for Isabelle, but we pray that she be happy and comfortable. We know she is in God’s hands and we know that she’ll be well taken care of no matter what.

Mom and Dad are spending time with our baby girl and reading stories to her, giving her kisses, huggies and all the special attention she deserves. We love her with all our hearts and we always will.

The wait continues

Wednesday, December 10th, 2008

Isabelle is stable, but she’s had blood pressure issues today. She’s been peeing well, so we’re happy about that. She was put back on the paralytic so that her body can focus on healing. They turned off the Bair Hugger (warming blanket) and they’re watching to see how she holds her temp.

They changed around her antibiotics yesterday to better treat the little infection she has from the trach. That will be one good thing to get off our plate.

She got visits again from OT and PT today. It was hard, but we had to send them away because we’re battling blood pressure issues today.

Fox 2 News from St Louis just finished up an interview with us. They are putting together a story about her and another girl that just got a transplant. Hopefully the story will be ready tomorrow and I can send out the info to you.

Finally, I wanted to amend the organ transplant / donor matching info that I’ve been telling everyone. After talking with the transplant coordinator I found out that they do not care about tissue matching at this hospital. That means it boils down to: size (age), size of the heart and blood-type. With tissue matching out of the equation, then we’re open to more donors. However, we’re still technically behind another child on the “wait time” factor.

The more I learn about the matching process, the more it confuses me.

Thank you for all the wonderful things you’ve done for us. The gifts, the well wishes, the prayers upon prayers, the forwarding of our story, the selling of bracelets, the visits, the emails, the poems, the auction donations and so on. You’re a wonderful group/network of people and we’re fortunate to have you. Let the prayers for a donor continue.

Need help finding a donor

Wednesday, December 10th, 2008

We need to find a donor.

I cannot express the severity of Isabelle’s situation, but it’s apparent to anyone who has spent a few min in the room with her. Her heart is getting worse. We’ve asked so much from her poor tired heart and we’re asking even more. The absolute priority is to get her to transplant, but it’s hard when her heart is so tired and having so many arrhythmias as a result.

We are asking any able bodied person to help us get the story out. It is our hope that if we spread the story far and wide enough, that our chances of getting a donor will increase. Donors typically come from within 250 miles of the recipient, so we need to target: St Louis, Kansas City, Des Moines, Memphis, Springfield (MO/IL), Indianapolis, and even Nashville. We want to get the word to the people so that Isabelle could be picked as a possible match.

We ask for nothing else at this point and we need nothing else. We need to find a donor.

Since I made this post I learned that there are no good samaritan donations for hearts in the USA.

“Back in the ball game”

Tuesday, December 9th, 2008

Isabelle had a good night and she’s still stable. She’s battling the infection she got from the trach with antibiotics. Her breathing will get much better after that is out of her system. She moving a lot more today and she’s making some faces. Last night she made a grimmace in pain and today she’s moving her mouth around more.

She’s under a Bair Hugger, which is helping keep her warm. Her body is working to figure out it’s internal temp so she’s a bit on the cool side. That should right itself in time.

She just got a visit from Physical Therapy and she got some range of motion exercises done. Isabelle was moving and squeezing her hands. She has some edema in her skin so movement will be necessary to get that off again.

Her head Dr told me today that “we’re back in the ball game”. So, the wait for a donor resumes. We hope and pray to find one soon because this wait has taken it’s toll on our little Princess for sure.

Today we made the Topeka Paper: Isabelle was born in Topeka at Stormont-Vail, like her father and her grandmother. We are so glad that our story is continuing to spread across the Heartland.

Good night

Monday, December 8th, 2008

Just a “late-night entry” message to say that Daddy is back on reading duty! Isabelle wanted a few stories read and she was nodding yes/no to various things. She’s moving her arms a lot and she was moving her lips around, too. We’re watching (listening) to our favorite shows on Noggin right now.

Good night.

More baby steps

Monday, December 8th, 2008

The CT scan results initially look good. There is no sign of any acute problems. The results are being reviewed by the radiologist. We are anxious to hear the final results but the intial results are great news.

When Isabelle got back to the room she nodded “yes” and “no” to a few questions, which is a really great sign.

She’s on Versed and Fentanyl again, but she’s off all other sedatives. She’s back on full vent support for now, which is the right thing to do so she can rest.

No nutrition yet.

The plan is to keep her happy, stable and healing. Tomorrow we’ll likely get to talk about the transplant status. We know that Isabelle will need to spend some time recovering before she’s back to being ready for transplant. We don’t know how long that will take, so we’ll take it day by day.

Every day I hear about all the people out there reading the story. I am amazed at how many people are tuned into our situation. I love writing about the good stuff…I hope to share more good stuff tomorrow.

Thank you for the well wishes and prayers!

With love, Chris, Amanda, Isabelle and Elorah

Baby steps

Monday, December 8th, 2008

If you are just tuning back in from Friday a lot has happened. You need to read all the posts since Friday.

Isabelle had a big setback on Saturday morning. Her arrhythmias wore her heart out and she went into cardiac arrest. The medical team was able to get her back to a stable state, but we don’t know how much damage may have occured. Her blood work looked much better today and her kidneys are still working very well without any help.

Through the night Isabelle made purposeful movements in her eyes, tongue and arm. It’s impossible to assess her complete body because of all the medications and IV’s, but the initial signs are good. The Drs want to perform a CT scan to make sure there are no signs of bleeding or other damage to her brain. The fact that her labs are trending better is a really good sign, but this is a bridge we must cross.

Isabelle has crossed many bridges and won many battles. We hope and pray that she can get through this without any problems, but it’s been tough on her for sure. She came a long ways and was pretty much back to being Isabelle. To have another setback like this is devastating to her and her family. We have faith in God’s healing power and we’re going to do our best to support Isabelle the way we know how. We started reading, watching movies and listening to music. We’re going to do our best to help her through this. The goal is to keep her on the transplant list and get her to transplant. Your assistance in prayer would be greatly appreciated. Isabelle needs all the support she can get right now.


Sunday, December 7th, 2008

Isabelle is doing ok. She’s been stable in terms of the overall picture. Because she’s back to being paced, we don’t know her body’s intented heart rate. She’s set at 115 right now. She’s got an infection in her trach, which we knew was a risk, so she’s on antibiotics for that now. She’s still on a cooling blanket to keep her temp down. The big question now is about her neurological activity after such an event. So, they’ve taken her off the paralytic to see her responses. She’s shown some initial signs of responsiveness in her eyes, so we pray that she continue to take some baby steps forward tonight. It will take time for the paralytic to wear off as well.

For tonight, please pray for complete stability in her heart function. Also, please say a prayer for Isabelle’s mind and spirit. Her mind and spirit have been extremely strong throughout this entire ordeal and we want them to continue to be strong.