Monday, August 24, 2009

Thank You Again

Taylor's family continues to be overwhelmed by the generosity and thoughtfulness of extended family, friends, and even strangers who have come forward to offer support.

The benefit was a wonderful and touching event; Taylor's friends (and their parents) continue to check in on Jennifer; and anonymous donors have provided everything from sweet condolence cards to a vase for Taylor's grave site.

I can't say that as time goes on it gets any easier... for many who were closest to Taylor it actually has gotten harder. There are good days and bad - but never a day without her on our minds and in our heart. The best days are when something strange and funny happens, as if her mischievous spirit is reaching out to us :-)

Wednesday, June 17, 2009

Concert for Taylor; June 23rd 6-8pm

The Brown family has some wonderful friends in Nashville. Taylor grew up listening to these folks; they even wrote a song about her, years ago. Now, this coming Tuesday, June 23rd, they will host a concert in her honor... (see portions of the poster below)




Friday, June 5, 2009

Remembering Taylor on Her Birthday

Today Taylor would have been 14 years old. That's a hard pill to swallow - and something that's been on my mind all day long. I could not think of the words or actions fitting enough to pay to tribute to her or to comfort Jen and Matthew.

So, I will say what another good friend of the family said... "knowing her and losing her has been a life-altering experience." It's made me rethink about priorities and how I've been living my life lately. It's made me pay attention more to others that may be walking by in the store and engulfed in their own life struggles - and to offer small kindnesses in response, as my own way of paying tribute to Taylor and all the good people who helped our family during this difficult time.

Through this whole ordeal I have been in awe of Jennifer, Matthew, Dan, CJ, and Taylor's grandparents. They have acted with such grace and strength.

The services on Taylor's behalf were beautiful, too. We are all thankful for the many people who attended and have shown their support in other ways. I know that Taylor is so proud! I know she feels our love today.

Aunt Janet

Saturday, May 30, 2009

As most of you already know, my little angel, Taylor Brown is now one of God's little angels. She passed on Friday, May 29th at 1:25pm. It was very sad, yet very peaceful as well. The staff at Vanderbilt Children's Hospital did such an excellent job, first at caring for Taylor, and then also at helping our family through the process of letting her go on to Heaven. They definetely showed us that this is not just a JOB for them...they care deeply about their patients and mourned our loss with us.

I got a very special "gift" from Taylor before all this happened. One day in the car, she started talking about what she wanted her funeral (or PARTY, as she put it) to be like. She specified that she did not want to be cremated or buried in the ground...she wanted to be in one of those "drawers in the wall thingys"! She also said no one was allowed to wear black or cry....I know we are going to shed some sad tears but we also would like to shed some happy ones remembering the good times and how much joy she brought into our lives!

Arrangements are as follows:

"Celebration of the Life of Taylor Brown"
When: Monday, June 1st @ 6pm
Where: LifePoint Church (formerly FBC of Smyrna) on Legacy drive in Smyrna, TN

"Memorial Service and Final Placement"
When: Tuesday, June 2nd (Visitation begins at noon and will continue until the service begins at 3pm)
Where: Mount Olivet Funeral Home on Lebanon Pike in Nashville, TN

REMEMBER...NO BLACK! Wear bright colored, celebratory clothing to BOTH services!

EVERYONE is welcome to come to both. Even if you never actually met Taylor or our family, we would certainly love to meet you and thank you in person for your prayers, donations, love, and support!

Sincerly,
Jennifer Brown-Seal

Friday, May 29, 2009

To Those Who Loved Taylor

jennifer and matthew thank everyone who kept taylor in their thoughts and prayers. miss taylor passed away today at 1:25 pm. she went very peacefully. her family was with her the whole time. taylor will live on in all our hearts; so for anyone who knew taylor and shared her hopes and dreams please live them for her. may God bless taylor and everyone who loved her.....

Missy Davis

Thursday, May 28, 2009

God's Newest Angel

Taylor is not going to be able to join us again. The doctors say that she is really already gone - that taking her off of life-support will really just be a formality.

There are no words to express how very sad I am - sad for the friends and family who will miss her so intensly much - sad for the fun we'll miss out on from growing older with her - sad especially for Jen, Matthew, and Taylor's grandparents.

I know that Taylor would not want us to be sad for too long, though. She hated to see her mom cry. She hated to see anyone cry. She was often a good friend whom many could share their problems with - she'd be the shoulder they'd cry on while she listened - she'd be the one who'd cheer them up by saying or do something silly. She was a wonderful girl who adored her parents, grand-parents, aunts, uncles, nieces, nephews, and friends. She often formed close relationships with her teachers and neighbors who knew her well. She was very thoughtful - always making the sweetest homemade gifts and cards.

She will most certainly be one of God's most beloved, beautiful, joyful, and sometimes delightfully mischievous angels.

Thursday 05/28 - together today at 4pm (Ga time) 3pm (Tn time)

We found out this morning that the new medicine did not work.

Everyone - if you could - please take a moment around 4pm (GA time)/ 3pm (TN time) to pray for our miracle. The doctors will gather around that time to meet with the family, review test results, and discuss options. We're praying that the damage done so far is not so bad that it cannot be reversed, that there is still a way to help Taylor, that she will accepted as a candidate for surgery if that is what is necessary.

Wednesday, May 27, 2009

Wednesday 05/27

We're still hopeful that Taylor will pull through this - we all know what spunk she has! A couple of promising things happened today. For one, they were able to use a different medicine to control her seizures long enough to do a more in-depth test (something more advanced than an MRI - I don't know how to spell it - but it has something to do with injecting dye into her system and watching where it goes). This is really good news. They were not sure that it could be done at all. The hospital did make the extra effort of moving the machine from the main hospital to the children's hospital, in order to get the test done in minimal time.

The doctors also have come up with a new idea - a new and different medicine to try - that might help get the seizures under control. We are hoping and praying...

Tuesday, May 26, 2009

Tuesday 05/26

Okay. So lastnight, I vented a little. I'm told that this is normal. This is ironic. Nothing feels "normal" anymore. I do believe now that the people at Vandy are doing all that they can - but there's just some things out of their control.

I haven't written today because I have not had the words. Basically, the family has had two meetings with the doctors... one this morning and one to review Taylor's latest catscan. The doctors have told us that they have just about exhausted all of the options... and even gone outside the box... searching for something to stop the seizures. Nothing is really working. Even the medicine that does work can only be continued for a limited time and then impacts her organs.

We are still hopeful and praying for a miracle. The doctors are still holding out some hope - but are also preparing us for the worst scenarios. The catscan confirmed that the swelling in her brain is global. And yet they will try again tomorrow to do the dye test that may tell us specifically which areas of the brain are functioning and if she may still be a candidate for surgery. There's some other bad stuff that I just don't want to talk about. Just know that we need - that we are all begging - for a miracle.

Monday, May 25, 2009

Monday 05/25 - later - IS Vandy the right hospital?!

I guess I spoke too soon..? The new team of neurologists this week have a much more pessimistic view of Taylor's situation.

I am starting to question whether Vanderbilt really is the best place for Taylor..? I don't understand how they can change doctors every week and hope for success. And it seems like last week's team did not even consult with this week's team? They seem to be on two entirely different pages, when it comes to Taylor's situation. It would seem to me that in a case like this, some continuity would be crucial. Do the new doctors even know her history?!

I'm told that switching teams every week is typical of a research hospital. So, maybe a research hospital is not where Taylor needs to be?

And why, when they put her back on anti-convulsants, did she start getting more burst activity on her EEG brain patterns? And why, when Jennifer asked, did the doctor just dismiss it as a coincidence? Why did they not at least listen and try to take her back of the meds in order to make sure?!

There is another meeting with the doctors tomorrow at 10am.

Monday 05/25

There's been little change over the weekend. The new gas medicine continues to help, however, they may have to take her off of it soon due to complications that can arise from using it for a prolonged amount of time.

There was one major incident, though. Friday night the machine that administers the medicine stopped working properly and Taylor was not getting the medicine. She started seizing again. It took an hour or so to get her brain waves back to a restful state. I just can't understand how this happened with a nurse standing there 24/7 monitoring Taylor. It's very upsetting.

We received sad news about another child - a 16 year old girl named Cyan. She was in the hospital for her second heart transplant. She's been fighting for her life, for a very long while now. We are all very heartbroken to hear of Cyan's passing. Her mother, Rebecca, is a remarkable woman. Our hearts go out to her and her family.

I know that Taylor and all of the children at Vanderbilt are at one of the very top hospitals and the doctors are doing the best that they can. They all need our prayers.

Friday, May 22, 2009

Friday 05/22

Taylor's about the same... some good and some bad. The pancreas is a little better but the pneumonia is a little worse. They will need to drain the fluid from her lungs. The Versad medicine did not work yesterday - it could not stop her brain from "bursts" of activity. So... yesterday they put her on a new machine and a new medicine that is administred through gas. The medicine is working better at controlling her brain activity... she has pages of flat lines... which is good... but then pages of burts which is not good. But, that's more success than they've seen with any other medicine. The phenabarbitrol is still wearing off.

What is most frustrating and scary is that the doctors still really don't know what is causing this or how to fix it. This morning 9-10 doctors met with the family. All tests for every virus or other cause they can think of have come back negative so far. Some tests won't come back for a month, though. And even if they figure out the cause it may not help them help her to get better. They called Taylor's present condition "intractable status seizures"... that basically means seizures that won't stop. There is still inflamation of the brain. But the doctors cannot isolate exactly where these misfires are occurring. They will do a new type of test -- like an MRI or PET scan - but better. They will inject a dye and see where it goes, study what happens. Hopefully, this will tell them more. The bad part about this new test, though, is that they will have to move her to the main hospital - and any movement - however slight - makes her brain activity go haywire.

Lastnight family friends brought home-cooked meals for our family and to share with other families here in the Ronald McDonald's House waiting room, as others have done. We've met some amazing people here - with both heartbreaking and inspirational stories.

Wednesday, May 20, 2009

Wednesday 05/20 - late night

How's Taylor doing, you ask? Well... that depends on who you ask.
Literally.
Even the experts don't agree/cannot figure it out, it seems.
I think it's making us all a little crazy. Crazy with heartbreak. Anger. Frustration. Worry. Sadness.

They have to take her off of the phenobarbital and some of the other anti-convulsants because it was causing "high toxicity" in her blood. Apparently, her pancreas is inflammed and there is continued worry over the health of her other organs. So, while they've stopped the phenobarbital, they've started her on another med called "Versad" or something like that? It's something like valium, maybe? The goal is to get her brain waves to go flat... but so far it's not working... they are better than before but not flat. But she is hanging in there and we are still optimistic that someone will figure out the answer soon.

Wednesday 05/20

Yesterday the news was so upsetting that I could not bring myself to post. Jennifer did though - she wrote a letter to Taylor in the Guestbook.

Julie and I returned to Nashville late lastnight, to be with Taylor. Things were not looking well yesterday at all... Taylor's brain was swelling and they had decided that no matter what they have to bring her out of the medically-induced coma, even if it meant the seizures return.

During the night, though, things improved! Her swelling has gone down and although she is slowly being weaned from the phenobarbital her brain patterns lastnight looked healthy.

Unfortunately, now the brain patterns are spiking a little and are a concern again. In addition, she started running a low grade fever and is not tolerating her feeding via the feeding tube. The doctors worry that this may be the result of an issue with her pancreas (as a side effect of the medicine). They will run blood tests today. Nevertheless, the doctors are now a lot more optimistic this morning than they were yesterday.

For now, it's still a wait and see, as we wait for the penabarbitrol to wear off.

Monday, May 18, 2009

Monday 05/18

The neurology team and the CCU doc just talked with Jennifer again. We are in a serious situation now. The meds are beginning to affect Taylor's renal functions....which means her kidneys and her liver could be affected. Her creatin level is high - so that indicates some liver issues. They have decided to maximize the anti-convulsion meds over the next 48 hrs and then they will be forced to take her out of the coma. If she keeps seizing, they will try a few other options before considering surgery on the brain, to go in and remove the infected area. Rehabilitation is inevitable at this point and each day she remains here the list of needs she will have continues to grow.

Sunday, May 17, 2009

Sunday 05/17

Taylor's temperature seems to be holding steady and normal today. The doctors are going to try a different barbituate, instead of the phenobarbital used to induce or maintain medically-induced comas. I assume this is to see if a different drug will help her maintain more consistent brain waves..?

Though I had to return home and to work on Friday... Jennifer, Matthew, Mom, Dad, and Beth, together with the support of their friends, co-workers, and loved-ones (Dan, CJ, and Aaron), make sure that Taylor is never left without a family member nearby. I am sure that Taylor can sense that they are there and is comforted by their presence.

Saturday, May 16, 2009

Saturday 05/16

No real change today. Taylor does seem to run a slight temperature from time-to-time. I'm not sure if that's because of the coma or if she's still fighting something off.

Friday, May 15, 2009

Friday 05/15

In the meeting today, the doctors gave many reasons to be optimistic... but also warned that this will be a long, long road.

There's been no real changes today - but at least she is not getting worse. They've decided that it will now be mid-week or so, before they try to wake her up again. And they will have to get her off of the ventilator before they can do another MRI.

They've encouraged Jennifer, Matthew, and other family members to try and return to work - at least part-time.

Thursday, May 14, 2009

Thursday 05/14

Taylor's pupils are no longer reacting to light. However, the doctors said that this could be due to the heavy doses of phenobarbital that they are having to give her, in order to make her brain rest and stop seizing.

The neurologist team met with Jennifer and Matthew briefly, today. They said that Taylor is not getting any better but she is also not any worse. They have now decided to wait until possibly Sunday before they try again to wake her up.

There is another meeting with all of the doctors and a social worker, tomorrow at 1pm.

Wednesday, May 13, 2009

Wednesday 05/13

The doctors were not able to bring Taylor out of the coma... she started seizing again. But, today she was able to digest the food provided from the feeding tube (whereas yesterday her body could not). Her pneumonia has also improved.

Her temperature did start to rise again but they were able to bring it down with cool towels. Her brain waves are responding to stimulation... which is both good and bad. It's good that she senses when we are in the room or speaking - however, too much stimuli causes too much unwanted spiking in the brain pattern.

Jennifer bought a Build-A-Bear and dressed it as their favorite nurse - Nurse Ashley. I think Taylor will really get a kick out of that when she wakes up.

The support from friends, family, and even strangers has been wonderful! Jennifer and Matthew could not be more thankful for the visits, the food, the gifts for Taylor, and donations. Jennifer's co-workers and boss have been especially helpful, as well as Jennifer and Matthew's friends and family. It made the family feel really good that so many of Taylor's teachers visited from her school, with messages from classmates and home-cooked meals.

We all remain very hopeful that Taylor will get well soon! However, the counselor that visited with Jennifer did say that we should not think in terms of days any more... but more likely weeks...

Tuesday, May 12, 2009

Tuesday 05/12

Unfortunately, Taylor has gotten a touch of pneumonia.

However, the doctors are still attempting to bring her out of the coma today. This is a very slow process, over a period of many hours...

The goal is to bring her out of the medically-induced coma without any more seizures ocurring. Then, hopefully, she will also no longer be in the coma she went into on her own.

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Monday, May 11, 2009

Taylor's Story - How the Struggle Began

Earlier this week, on Tuesday, Taylor started running a low grade fever. On Wednesday, she felt nauseated. On Thursday she felt great... she went to a baseball game and ran around the park. On Friday, the school called Jennifer, saying that Taylor did not feel well... that she was complaining of a headache, nausea, and feeling very tired.

Since it was Taylor's weekend with Matthew's family, Jennifer took Taylor to her grandmother's house. Her grandmother, Beth, said that Taylor went back to a back bedroom to lie down. Beth went to get Taylor something to drink. When Beth returned to the bedroom, Taylor was in the midst of what we now know was a Grand Mal seizure. 911 was called and Taylor was taken to Southern Hills Hospital, where she slipped in and out of a coma and continued having seizures. The medicine that was supposed to stop the seizures did not work. Southern Hills transferred Taylor to Vanderbilt Children's Hospital.

While at Vanderbilt, Taylor continued to have seizures throughout the night and early morning. It was estimated that she had between 8 to 12. She did wake up at times... and eventually was able to talk and even walk herself to the restroom. Unfortunately, she started throwing up again. However, the on-call neurologist thought that the nausea was caused only be the huge amounts of medicine. They told Jennifer and Matthew that Taylor would most likely be released that day (Saturday).

Sadly, things did take a turn for the worse again... Taylor started having more seizures and slipping in and out of a coma again. Despite all of the medicine, the doctors could not stop the seizures. They stopped counting exactly how many. Even in her deep sleep/ unconscious state, she continued to seize. Because Taylor could not breathe well on her own, she was hooked up to oxygen and various other assistance was provided to help her body function.

The doctors decided that while the blood work had ruled out Bacterial Meningitis, they wanted to do a spinal tap and MRI to look for other causes. In order to do these tests, though, they had to get her to stop seizing. They tried everything but nothing worked... and just when they had decided to put her into a medically-induced coma, she slipped into a coma on her own on Sunday. Much of that day, the doctors waited for her coma to stop the seizures... but when it did not... they ended up having to put her in the medically-induced coma and on life-support.

Preliminary results of the tests suggest that Taylor has Viral Meningitis and Ensyphalitis. The cause is unknown. As of today (Monday), the medically-induced coma has finally gotten her brain to rest and she has stopped seizing. However, she did also develop and high fever... but they have since gotten the fever down.

We are all very hopeful that she will come through all of this just fine! She has many, many people who love her and are praying for her. Thank you to everyone who has sent their prayers and assistance through this difficult time!

On behalf of Taylor's Family