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, May 28, 2009
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.
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...
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.
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.
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.
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.
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.
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