Faith and Loss

I struggle with not being able to have told her I loved her - with the thoughts that she was frustrated with me when she had her cardiac arrest - what if her last thoughts were frustration with me? What if she woke up enough to realize that she needed help, but I wasn't there ...

It occurred to me this morning that part of believing in the Resurrection is the understanding that Hyatt, while not present physically, is still present spiritually. If that is the case, then she has heard and felt my love for her and she understands it all.

But there is the rub, I'm having a hard time trusting that she can feel it.... so I think part of the difficulty here is that I am having a bit of a crisis of faith. I know I need to believe, but sometimes I just can't see it or feel it.... and that scares me.

So please say a quick prayer for me... and for the girls...

Troy.

Still here...

I'm still here. These past few days have been very tough. Today, I couldn't spend any appreciable time with the kids without crying. I just want to lock myself in my room. It's just all so surreal... I just can't get my head around the fact that she is gone. I still see her walking in to my office to chat or smiling as we play with the kids. I wasn't ready for this ... for how hard it is... I thought that I'd been through it already while she was in Hospice ... I was wrong.

Go kiss those kids and your honey ... how long has it been?

Troy.

Funeral.

Folks,

Today I buried Hyatt. I'm exhausted and heading to bed. I'm posting her Eulogy here ... some of the folks present asked me to do this, and I wanted to share with loved ones who were unable to attend.

Please stay tuned to this blog - the journey is not ending ...

Love,
Troy.

Funeral Arrangements and Logistics

We will be posting information about the funeral, hotels, and other logistically helpful information in the coming days. To keep all of this information in a handy place, we have created a list of links on the right hand side of this page called Funeral Arrangements. Please feel to contact Allen (allenmurray (at) mac (dot) com) if you still have any questions.

Thank you for the overwhelming amount of Prayers, Love, and Support,
Allen

Memory Cards

We have had many thoughtful suggestions and offers of assistance to create a way to collect and pass on joyful memories, funny stories, and thoughts about Hyatt to her daughters and family.

The Bristow Moms and Kids Club, assisted by the MOMS Club of Gainesville, will provide preaddressed note cards at the wake and funeral for people to take with them and return by mail, after writing the memory they wish to share. The cards will be collected, organized, and later presented to the family.

If you are unable to attend either the wake or funeral, or are unable to obtain one of the preaddressed cards, you may send in your own note card to the address provided at the end of this entry. We ask that you send this particular correspondence to the P.O. Box, rather than the personal home address. If you wish to forgo the mail system all together, you may add a comment in the “Hyatt Stories” section of this blog, which will be printed and later added to the collection.

Here is the address for the Memory Cards:
Bristow Moms and Kids
12841 Braemar Village Plaza
Suite 118
Bristow, Va 20136

***Please do not include any person’s name or “Care Of” in the address or the letter will not be delivered. You can write “Memory Card” on the back of the envelope to facilitate sorting the mail once collected from the P.O. Box.

Thank you for your thoughts and prayers.

Thank you for contributing to a collection of memories to pass on to Hyatt’s most precious girls.

In lieu of Flowers....

Folks,

In lieu of flowers please make a donation, in Hyatt's honor, to either of the following organizations:

Prince William Conservation Alliance
PO Box 6351, Woodbridge, VA 22195
This is an organization that Hyatt did volunteer work with and they are working hard to conserve watershed and natural spaces around Prince William County - where we live. It is a cause that Hyatt cares passionately about. You can learn more at:
http://www.pwconserve.org/who/index.html

Capital Hospice

Attn: Development Office
6565 Arlington Blvd, Suite 500

Falls Church, VA 22042
This is the organization that has the inpatient facility where Hyatt spent the last month of her life. They are a great organization that is dedicated to easing pain and helping patients and loved ones cope with terminal illness - in their facility and throughout the community. You can learn more at:
http://www.capitalhospice.org/about/hospice/mission.asp

Troy.

Funeral Summary

Please join us in celebrating Hyatt's life starting on Thursday December 11th from 6-8pm for her wake. This will take place at Fairfax Memorial Funeral Home (9902 Braddock Rd, Fairfax, VA 22032).

On Friday December 12th at 11am we will celebrate a Mass of Christian Burial at St. Mary of Sorrows Church in Fairfax, VA (5222 Sideburn Road, Fairfax, VA 22032).

On Friday Following the Mass, we will have a grave-side service at St. Mary of Sorrows Historic Church Cemetery (Fairfax Station Road & Route 123, Fairfax Station, VA 22039). Please carpool to this service, there is limited parking.

Following the grave-side service, we will return to the main church (5222 Sideburn Road, Fairfax, VA 22032) for a reception.



View Larger Map

Hotel Accomodations

There are many nice hotels in close proximity to the Churches and Funeral Home. A list of these choices with contact information is attached below. A block of rooms will be reserved at the Hampton Inn - Fairfax City for Thursday and Friday night. Please reference the funeral for Mary Hyatt Ford Nolan.

Hampton Inn - Fairfax City
10860 Fairfax Boulevard
Fairfax, VA 22030
703-385-2600
703-385-2742 (fax)
Hotel Website

The following are other hotels (not listed in any particular order) in the same general area:

Comfort Inn - University Center
11180 Fairfax Blvd
Fairfax, VA 22030
703-591-5900
703-591-3507 (fax)
Hotel Website

Candlewood Suites
11400 Random Hills Rd
Fairfax, VA 22030
703-359-4490
703-359-4492 (fax)
Hotel Website

Best Western - Fairfax
3535 Chain Bridge Rd
Fairfax City, VA 22030-2703
703-591-5500
703-591-7483 (fax)
Hotel Website

Holiday Inn Express - Fairfax
10327 Fairfax Blvd
Fairfax, VA 22030
703-359-2888
703-385-9186 (fax)
Hotel Website

Fairfax Marriott - Fair Oaks
1787 Lee Jackson Memorial Highway
Fairfax, VA 22033
703-352-2525
703-667-2112 (fax)
Hotel Website

Hilton Garden Inn - Fairfax
3950 Fair Ridge Drive
Fairfax, VA 22033
703-385-7774
703-359-2932 (fax)
Hotel Website

Courtyard Marriott - Fairfax Fair Oaks
11220 Lee Jackson Memorial Highway (Rte. 50)
Fairfax, VA 22030
703-273-6161
703-273-3505 (fax)
Hotel Website

This is not an exhaustive list of hotels in the area, but does represent comfortable and reasonably priced choices which are close to the areas of interest. Please let me know if you have any trouble finding what you are looking for.

Thanks,
Allen

She's at Peace

Hi All,

I was with Hyatt all day on Thursday and held her for most of the day. She passed around 4:50pm. I spent most of the day telling her how everything here will be OK and how her Heavenly Father was waiting for her. I told her over and over how much I love her, how much her kids love her, and how much her family and friends love her. I asked her to pray for us when she gets to Heaven - that we will all constantly need her help.

I promised to make her love and life known to Sid and Bek as they grow up - and to reflect her love towards them in everything that I do.

Hyatt, I love you. I miss you. I'm so sorry.

She is in a better place now. She is at peace. I rejoice in knowing that she is with God, in his presence, and experiencing the Joy that she worked her whole life to achieve. But I am tragically heart broken that our time together was so short. I miss her.

=====================

Please join us in celebrating Hyatt's life starting on Thursday December 11th from 6-8pm for her wake. This will take place at Fairfax Memorial Funeral Home (9902 Braddock Rd, Fairfax, VA 22032).

On Friday December 12th at 11am we will celebrate a Mass of Christian Burial at St. Mary of Sorrows Church in Fairfax, VA (5222 Sideburn Road, Fairfax, VA 22032).

On Friday Following the Mass, we will have a grave-side service at St. Mary of of Sorrows Historic Church Cemetery (Fairfax Station Road & Route 123, Fairfax Station, VA 22039). Please carpool to this service, there is limited parking.

Following the grave-side service, we will return to the main church (5222 Sideburn Road, Fairfax, VA 22032) for a reception.

In lieu of flowers I will be making other arrangements - please stay tuned - I'll announce that here. It will be something that Hyatt would be proud to support.

Please go kiss your spouse and kids - call your parents and siblings and tell them how much you love them. (How long has it been?)

Troy.

She's Gone

Our dear Friend, Daughter, Mother, Wife, passed away this evening. She died peacefully in Troy's arms and in the presence of her Mom and Dad. It has been a trying week for the family and friends who have stayed with Hyatt 24X7 since Monday.

We've been dreading this day for the last month. Hyatt will be missed terribly by many, but also celebrated as an amazing person.

Details about her funeral will be posted as soon as they become available.

Thank you all for your prayers,

Allen

Decline....

Hyatt's condition is taking a turn for the worse.

Deep down, I knew this day would come. Despite all the hope and prayers.

I'm doing OK - my grief is still greatest for Hyatt, Sid, and Bek. I know that Hyatt's journey on earth is nearing it's end - that she is going home to her heavenly father - which is what she sought in her every action. Still, I will miss her terribly and I will miss her physical presence in the lives of our kids and in my life.

It has really been a strange few months. Everything about this has been surreal. What 35 year old just collapses like this? This is something that you read about in papers ... a rare, tragic occurrence that we just read about - strangers that we feel bad for - that we can thank God that it doesn't happen to us. It is really unfathomable. Such a vibrant, loving, caring person ... just gone in a snap.

Life is really precious - every moment of every day. Every breath, every thought, every word, every smile, every expression of tenderness - these are the opportunities that God gives us to reflect His love to those around us, to those whom we love.

So, over these past few months I've shared a lot of the things I've come to learn about myself and about how God works in my life, how He works in Hyatt's life, how he works in the lives of my two girls. My prayer is that you get to live the realizations while your loved ones still present to you. I'll get the opportunity to do this with Sid and Bek and with all the others that I come in contact with - but not with my true love.

I know that she saw these things in me - but I'd still like to have shown them to her more and more actively. Deep down in all of us God plants a seed - we know what is right and wrong, we know how we should act towards others, we know that kindness, tenderness, and compassion are the keys to loving those that God brings into our lives. Did I always act that way? No. Would I like a second chance at it? Terribly. I won't get that with Hyatt. The times I failed her I can't change... I can't make them better ... I can't show her a real and sustained conversion.

Please don't get caught in the trap that bites a lot of people in our society - the "what about me" perspective of marriage - it sneaks it's way into a lot of good marriages. It is in giving our whole selves selflessly, everytime, in this special relationship that we find the real purpose of Marriage - to bring each other selflessly closer to God. Hyatt did this for me time and time again. I am blessed to have had her influence in my life.

God gave me 17 years of love from this beautiful woman. That is a gift that I have been continually thanking him for throuought this crisis... why didn't I see it as clearly before this happened? That Hyatt was God's gift to me ... and that I needed to acknoledge that in every moment that I had with her...

Don't get me wrong, I'm not being consumed with regret - but I do have many of them.

Go kiss those kids and your lover ... how long has it been?

Troy.

What do I have to be thankful for?

Quite simply a whole lot. I am thankful for the love and support of my Family, for the love and support of my friends, for the love and support of all the friends that I didn't know I had, and for the love and support of all those whom I haven't yet met who are praying for Hyatt, me, and the kids.

I went and spent an hour or so with Hyatt tonight and told her all the things I was thankful for: I am thankful that God brought her into my life, I am thankful for 17 years of knowing her - her smile and laughter - her grace and peace. I am thankful for who I am now because she is in my life. I am thankful for the two wonderful children that we have brought into this world together. I am thankful for all the beautiful things that she made me aware of over the years - for her ability to see into and connect with others - for her kindness, constancy, and forgiveness... I am thankful for learning with her help what true love really is.

I hope and pray that each of you has had a wonderful Thanksgiving - and that you can really see God's presence in your family.

Troy.

A footnote:
A woman at church this morning said a special prayer for her daughter - she is going through some very tough and dangerous things. I don't know your name, but I am praying that your daughter see how much that you love her and how much God loves her - and I am praying for her safety, for you, and your family.

Footnote #2: (lest we forget in the busy season) How long has it been since you kissed your spouse? your kids?

I've been thinking alot about Marriage...

I've been thinking a lot about marriage and what it really means - more importantly how we should act - how I should act and how I should have acted. Marriage is tough. Marriage without being open to God's presence must be really tough. Hyatt and I always tried to keep God at the center of our Marriage - but, we didn't always get it right...

I believe that the primary goal of married life is to help each other to be more holy. To help each other live according to God's will... and ultimately to help each other reach heaven. Wow - all those offhanded sharp words and stupid arguments really are brought into perspective for me now.

Let me offer a thought to consider: If you knew your spouse would not live to see tomorrow - how different would you treat him/her? Since we never really know if we will get to talk to each other again, why not always treat each other like you would treat them if you only had one more day.

I wish I had had that question posed to me....

I love Hyatt with every bit of who I am. I am still unable to really grasp this whole thing. Sid still wants her mom to come home and play with her - so do I. She sees me crying and asks if I'm sad.... and hugs me and tells me that it is ok to be sad. The loss that I feel for the kids is staggering.

Hug those kids - Kiss your hubby/wife - wake them up - tell them you love them.

Troy.

Please pray...

Please pray for this family. My kids are sustaining me by their very presence through Hyatt's ordeal - I can't imagine the pain that John is going through.

http://www.chicagotribune.com/news/local/chi-dui-deathsnov12,0,1585608.story

Go hug those kids.

Troy.

2 Months?

Has it really been that long? Time has a way of flashing by - but weirdly. It seems like all this started so long ago - but also that it was such a short time since I last talked with her.

I just walked through the kitchen on the way to my office PC to write something. It is so quiet at night - very lonely. If she were here, she'd have a smile for me - or certainly a tear and a hug in this case.

It doesn't get any easier, does it? It is getting harder now. As things work toward their inevitable conclusion I'm getting more and more numb with periods of deeper lows. This past Sunday was very emotional. I was thinking about how perfect everything felt in the weeks and month before this happened. How we just marveled at our kids, about how good it felt to be with each other, holding, touching, talking, and smiling.... and then it is all gone. All this is supposed to happen to those folks you read about in the newspaper or hear about on TV... or read about in a blog ... I used to project myself into those stories - to see what they felt - to run to my wife and kids afterward thinking how lucky I was, how lucky we were, that things like that, like this, happened to others. It is such a jarring, profound loss ... and as it stretches over time the hope for a miracle in the face of such a poor medical prognosis is very wearing - very tiring.

So let me tell you about some of the things that bring me joy and sustain me. The smile, kiss, and out of nowhere "I love you daddy's" that I get from Sid. The giggles, smiles, and dimples that light up Bek's face when I look at her and say "hi". The generosity of all the families that have helped us with meals, gift cards, and donations. The hugs and smiles of all my neighbors. The constant, daily, help that I get from my parents with raising the kids and managing a household. The prayers that I hear about (and those I don't know about directly, but am sure are happening). I am especially appreciative of those who give up time with their families to help us, to sit with Hyatt, to hold her, talk to her, and to pray with her. The comments that people leave on this bolg - I read it almost every night before I go to sleep - they are very comforting. I am constantly in awe of the outpouring of care and concern for me and the kids - I am thinkful to see that this type of support is alive and well in todays world.

I've run into a number of people now who know me through this tragedy, who have recognized me or picked up on something I said - who have stopped me and asked me about Hyatt, me, and the kids - and have told me that they are praying for me. Hyatt would be very pleased this level of caring...

God, I wish that I could have the chance to share all this with her....

Hold your spouse extra tight - kiss and hug your kids too much - let them know ....

Troy.

No significant Change

It has been a week in the Hospice Facility today - with no significant change in Hyatt's condition. I am still praying daily for a miracle. I don't think that God is going to answer my prayers in the way that I want him to. This I can accept - I think the Bible quote goes something like - As high above the earth is the Sky, so high above my thoughts are His. I don't like this, but I can accept it.

Probably the hardest thing for me to come to terms with is that Sid probably will not have memories of Hyatt - and Bek certainly will not. Hyatt has had such a positive influence on both of their lives already I grieve for their loss more fiercely than my own.

I've had a couple of times in this past week where I needed my sounding board... to discuss things with Her ... to see things through Her eyes to try and find the right answers. These have been some of the first times that I've felt lost without her. Deciding on her care, on the mechanics of the things that I have to do because I am in this situation, is straightforward (or it seems that way thanks to all the support I get from key folks) - trying to figure out some of the issues that have no real clear answers is where I miss her voice most of all. That and the empty, cold, bed when I go to sleep. How am I going to manage this ... it is so overwhelming - but it is something I can't run from.... one minute at a time is about all I can manage.

She hugged me out of the blue the monday before all this happened. She said that she had had a dream that I would get injured in a car accident on the way to work and that she'd lose me. I stopped my morning rush out the door to hold her and tell her I loved her and that I'd make sure that didn't happen.... little did I know...

Go kiss your kids. Go hug your spouse so hard that it feels like you cant breathe .... hold on as tightly as you can... I wish I could again.

Troy.

Hospice.

I moved Hyatt to a Hospice facility today. I'm pretty numb right now - it is the realization that this is the place that, without God's intervention, Hyatt will die that is really dragging on me.

I just can't really fathom what life is going to be like without her. It has been almost seven weeks now - I still expect to see her holding the kids when I walk in the door... or see her doing a quick-change for a Curves workout - or see her smiling at me in wonder as the kids do their amazingly sweet things.

Every time I think about it I just want to ball up and cry. It is such a lonely place to be.

Pray for her ...

Troy.

Mama's an Angel...

We were given an Angel figurine at the outset of this ordeal (thanks Sarah) and I've had it sitting on Hyatt's dresser the whole time. A few days ago, while I was holding Sid and walking through our room, she says "There's mama - mama's an Angel, mama's an Angel".

Sid has had a remarkable gift for intuiting (some might say spookily predicting) things. This adds to my anguish of hoping that Hyatt is still "in there", but realizing that we are probably just supporting a body - that God may have already called her home.

I've certainly seen my share of Angels in this process - those who care for Hyatt, those who care for Sid and Bek, those who care for Hyatt's (and my) parents, and those who care for me. I struggle so often with maintaining hope - in the face of a diminishing medical trajectory.

God, let your will be done here - not mine. If it is your will to return Hyatt to us, please be swift. If it is your will to take her home, please hold her tight and show her the rewards of her faithful service. And if you would, please tell her how very much I love her and how there will always be a hole in my very being ...

Troy.

What to say....

As usual, I go to the Hospital and leave with lots to post here - but I get home, get the kids down, gt dinner, etc ... and I forget all that I wanted to say.

Nothing has substantially changed with Hyatt's condition. I continue to go pray with her every day - and I do get a chance to sleep with my cheek on her hand. It is amazing how peaceful it can feel - whilst forgetting the 800lb gorilla in the room.

I've been floored by the outpouring of support, prayers, help around the house, food, cash donations - people, I can't begin to tell you how supported I feel. Thank you everybody for all that you provide to me and my family - I hope I get to return the favor if any of you need support/friend/an ear....

Allen and I were donating to Verizons coffers (by an extended cell phone conversation) on the way home from the Hospital today. I was telling him that my philosophy for friends is that am available when you need me - day or night - you call, I'm there. I never dreamed that I'd be the one needing that level of help - thank you.

Troy

5.5 Weeks....

It's been over 5 weeks now. Hyatt has had no progress neurologically. That is really a bad sign. I've been struggling with things in the past week - trying to come to grips with how horribly severe all this is - and still trying to maintain some hope for a miraculous recovery.

Her heart and lungs and everything else are to a point where if she were to 'wake up' they are treatable and manageable conditions for her to live a normal life.... If only she would wake up is the real tough part. I still pray for the phone call where the nurses tell me to come because she is asking for me - but my prayers are more desperate now.

The reality of life without Hyatt is starting to sink in. I'm sure that I really don't understand how hard it is really going to be - and I'm still taken by surprise when she isn't home when I get there or that I can't pick up the phone and tell her about a funny comment or a success at work.

Please keep praying for her and for our kids. I have so many happy memories of my mom when I was growing up - and it is so tragic that Sid and Bek might not have that same chance.

Go kiss your spouse/kids/parents/loved ones and say a special prayer for Hyatt - it was 17 years ago Sunday when we had our first date. I'd love to have the chance for just one more date ...

Troy.

Birthday.

Hyatt is 35 years old today. What I wouldn't give for just one more day to interact with her and hold her and touch her.

I held Bek tonight when she woke ... Got her back to sleep and then cried. She might not ever get to talk to her mama - to laugh with her - to cry with her.

It is all so unimagineable

I don't have the words right now - it seems like I always have some when I'm with her - but they go away when I leave her.

Thanks to everyone who is praying for her and helping us ... I am still stunned by the outpouring of love and support.

Troy.

How long has it been since ....

Month Long Vigil

I am surprised as I age how much of my parent's wisdom has been correct and is increasingly becoming my own. My father used to tell me that time moves much faster as you age. To a sixteen year old, everything that comes from your parents is suspect, but I was always intrigued by this particular nugget of information. I am just now getting used to writing 2008 on checks and documents as the prospect of 2009 looms ahead. It would seem that once again my father was correct. That said, the last month has moved at a snail's pace. Every new day brings the blessings of our lives and a consistent question: How's Hyatt? I cannot tell you how much it means to Troy to read your comments and e-mails after 30 days of pain and doubt. The message is clear - Troy we are still here, still praying, and always hopeful. Thank You!

I wish I had better news to report today after a month long vigil, but I am learning some patience through this process and am thankful it is at least a positive report. Hyatt seems to be recovering from the infection the medical staff discovered this weekend. A CAT Scan revealed her kidneys as the source of the infection and the doctors believe they can beat it. The scan also revealed a blood clot in one of her legs so she is on a blood thinner to help treat and prevent future clots. This is not an uncommon condition for someone who is bedridden.

Troy and I are off to visit a rehabilitation facility this afternoon, one of three recommended by a friend who works in this field. Please join me in offering a special thank you to Tracy for all her help and guidance in this area. She is yet another of Hyatt's Best Friends.

Thank you again for your prayerful vigilance.

Allen

Friends Like Hyatt

Well we don't have any news on the big move yet. An infection showed up in Hyatt's blood this weekend which has prompted some pretty aggressive treatment, including a powerful antibiotic. Her chest x-rays have been pretty clear so the doctors don't think it is in her lungs. They took her for a CAT scan last night to attempt to locate the the source of the infection. Since it is a bacteria which is resistant to many antibiotics, they have isolated Hyatt to prevent further contamination within the hospital. The positive result is that she no longer has a roommate and the nurses keep the door shut. Her room is now much more peaceful and it seemed last night that she is much less agitated as a result. She is still heavily sedated so it is hard to tell if she has improved at all.

We continue to live on the information we get day by day, unfortunately there is just not enough of it. Troy and I are visiting a rehabilitation facility on Friday which has been widely regarded as the best in the region. It is unclear when the hospital will discharge Hyatt since she is fighting such a contagious and aggressive infection, but our goal is to have the prospective skilled nursing facilities vetted before the hospital says it's time to go.

I have enjoyed meeting many of you in person, on the phone, and in cyberland. I am still amazed by the wonderful nature Hyatt brings out in the people around her. It is a reminder to me that we can all be a little more like Hyatt to someone in our family or group of friends. I met another charter member of the Hyatt's Best Friends Club last night. Brook and Hyatt were among a group of students hit by a drunk driver in 1992. It is not surprising that they were marching to raise awareness for C.R.O.P (Communities Responding to Overcome Poverty). Brook and Hyatt were rushed to the hospital and thankfully recovered. Brook and his wife have suffered through their own family tragedy recently, which as a father I cannot imagine. If Hyatt were able, I know she would call you Brook to offer her condolences and help. I have friends I have not talked to in a while - I think I will call some this weekend just to say hi - like Hyatt used to. The key difference is that I will not leave a five minute message on the answering machine :-) Troy and I were laughing about her long messages this weekend. How we would both like to have a few more...

Thank you for your prayers and support,
Allen

One of my Favorites.

City of Angles

So we got City of Angles in from my parents Netflix today - I wanted to see this movie as part of my grieving process. I didn't make it more that 30 seconds into it when I had to stop. I thought that the main story line would provide some parallels for me to feel loss, pain, and hope. The opening scene where the little girl had a high fever and her mom was working alone, at night, to combat it really slammed me unexpectedly with flashbacks.

That night it so very lonely - and quiet. I found myself so very alone praying for Hyatt to just take one more breath - and one more - and one more. In the 10 minutes it took for the paramedics to arrive - some of the most quiet and desperate moments I have ever experienced. It was both tender and terrifying at the same time. The rush of feelings that I felt that night was triggered again by watching that opening scene... You just don't understand how alone you are and how helpless that you feel - or at least I pray that you don't/won't/haven't.

Go hug your family. Wake the kids up and kiss them.

Love,
Troy.

It's been a while...

Sorry I haven't posted in a while - as Allen said I've been returning to work part time to try and establish a new "normal" pattern. It's been tough - when I'm away from her I feel like I'm losing time that I might never get back. It is all so just beneath the surface...

This past weekend was the hardest on for me so far. Things are falling in to a new groove during the week, but the weekend is always our time to reconnect and do things together. I miss her around the house, in the car, walking outside, her voice, her laugh, her smile, her touch, her smell ...

Putting Sid to bed is hard because we pray for mama - we pray that there is a miracle and she is healed. A toddler doesn't get that - at least it does not appear that ours does. I pray that her prayers about mama getting better and us driving her home in our minivan come true.

I've been praying a lot that God hurry up and make up his mind... and I feel awful about it. How can I pray that ... how can anyone pray that their spouse and best friend pass... I am comforted by the knowledge that if He takes her that she will experience eternal Joy - but the hole that it will make in my life and my kids lives seems so daunting.

So I guess I'm asking that everyone redouble their prayers for Hyatt and for me - and go right now and hug your loved ones and tell them how much you love them.

Troy.

PS. Say a prayer for Dan - I met his wife in the elevator today - he's had a rough 2 weeks, but it looks like he's going home soon ...

Three Weeks

It's now been three weeks since Hyatt suffered her cardiac arrest and she is still in a minimally conscious state. Next Thursday will be a milestone significant to the neurological team. while they still consider her to be in the early stage of her coma, the odds of recovery fall sharply after four weeks. As the neurologist keeps reminding us; we will have to wait to see how she does in the next few weeks.

While we wait and pray, the medical team continues to stabilize Hyatt. They are now talking with us about the next stage; the move to a Skilled Nursing Facility (SNF) which will be able to care for her on a longer term basis. Over the next couple of weeks it is likely that the hospital will decide that Hyatt no longer requires the acute care they provide and she will be discharged to the SNF. The Case Manager has provided Troy with some candidate facilities and we will visit them to ensure they meet our high standards of care :-) Actually it is quite difficult to find a facility that will take a long term patient who is still dependent on a ventilator and we will be thankful if we can place Hyatt somewhere in this or the adjacent counties.

I visited with Hyatt last night. She looks comfortable and her color is great. The respiratory tech has been working with her to reduce the amount of support she needs from the ventilator. So far it has been going pretty well. She has a long way to go before she is breathing on her own, but she was drawing more breaths than the ventilator was supplying when I saw her last night and that's a great first step. She remains on a sedative to keep her comfortable so she is pretty calm. She does still react to light, sound, and touch. The nurse reported at our team conference that she is also responding to some generalized pain. This is seen as a positive development. While the prognosis has not changed, The neurologist agrees that we need to give her more time and not give up hope.

Troy has been working and is taking care of himself. He is definitely burning the candle at both ends, but seems to have found a balance. He is able to visit with Hyatt after work before heading home to spend some time with the girls.

I cannot thank all of you enough for the love, support, and most of all; prayers you have provided over what has seemed like a year. Please keep Hyatt and her family in your prayers.

Allen

What a Voice

I have been approached by a number of people who were not aware that Hyatt is such a talented vocalist. The first time Troy played some of Hyatt's singing for me, I was not convinced he was telling the truth. It was only after he showed me the videos that I was convinced. In addition to being such a great friend to so many, Hyatt has brightened our days and provided our ears with a real treat. I have attached a music player with five of Hyatt's recordings for your musical pleasure. All I ask in return is that you say a little prayer to thank the Lord for giving us such a talented friend and to ask for her comfort and healing.

Please Let Me know if you experience any technical issues. 

Enjoy,

Allen

Thank You for the Prayers

Thank you to all who participated (worldwide) in the prayer vigil Saturday. It was a special day for me as it highlighted the best mankind has to offer. The church was crowded by well-wishers and the spirits of all those praying for Hyatt and her family. I am confidant that Hyatt would be as touched as I was.

Many kind prayers were offered. Troy led us in praying the Rosary. Mary Alice led us in singing Hyatt’s favorite songs. It was extremely difficult for me to sing along to Amazing Grace as someone in the audience was singing harmony beautifully and I could not help but think of Hyatt – she could make any song beautiful, even happy birthday.

Someone brought the most delicious cupcakes. I was asked if Casey (3) could have one. After an hour of being quiet as a little church mouse, I would have given him just about whatever he wanted. We briefed him before the service that the people may be sad. He reached up during the service and quietly said, “It’s ok to be sad daddy.”

What a nice event. Thank you to all!

Allen

Angels

I've been touched these past two weeks by many angels....

Sidney and Bek are the two angels that Hyatt has given me - they are my reason for waking

The BMAK mom's truly are angels - you women have made this burden much lighter - thank you for taking time away from your own families for me

Allen, Pete, Steve and Bill - my wingmen through this - keeping themselves together to help me hear and process all that goes on around me - and sacrificing time from their own families for mine...

Fr. Barkett and Fr. Stephen - your prayers, guidance and reassurance have help me be open to the grace that God is continually sending me ...

For all those praying for Hyatt, my Family, and Me - I am grateful beyond words

Keep the Faith - still praying for a Miracle.

Troy.

PS how long has it been since you kissed your family - don't lose sight of that!

I see her everywhere...

Everywhere in my life - nothing I see, touch, smell, hear, imagine is without a memory of her.

I didn't get to cry enough today at the Hospital - so I'm a mess right now.

I searched for some recordings of her singing Galileo and Strange Fire ... two of the songs that she sang most often ... I couldn't find them. The sheets have lost her scent - Bek used to smell like her - not so much anymore - I'm losing my sensory reminders of her... too soon, too soon.

I put on my Tilley hat to go walk the dog in the rain. That hat was the present that she gave me for our Honeymoon - an adventure hat with a promise of many adventures to come ....

I miss her terribly.

Dear Lord, please return her to me.

Donations for Medical Expenses

We have been working on setting up an account for donations for the past week. I am happy to share with you that it is now opened. Many people have asked if there was a way they could contribute directly to Hyatt's family and this is a great way to do so. Troy will be able to use the money in this account to help relieve medical expenses.

If you would like to contribute to this fund, Please make checks payable to Troy Nolan.

Please mail them to our Post Office Box:

Bristow Moms and Kids
12841 Braemar Village Plaza
Suite 118
Bristow, Va 20136

You don't need to mail it to anyone's attention, we only have one set of keys and the same person checks it each day.

Thank you so much to everyone that has donated gift cards. It is so nice to see so many people supporting Hyatt and her family. Thank you for all of your prayers. Please continue to pray and I hope to see many of you tomorrow at the prayer vigil.

Gina Butler
President
Bristow Moms and Kids

Prayer Vigil

I hope you all can join us tomorrow for a prayer vigil for Hyatt. Julia Alejandre from Austin, TX and a member of the "Hyatt's Best Friend Club" had a great idea this week that we all spend an hour tomorrow praying for Hyatt. The vigil will be held at 3pm EST (2pm for Julia). You do not need to be Catholic, Methodist, or Baptist to join us and please feel free to join in from wherever you happen to be. Troy and I will be at his church in Fairfax Station:

St. Mary's Historic Catholic Church

5612 Ox Rd
Fairfax Station, VA 22039
(703) 239-8613



There is a wedding at 2 so please don't arrive too early. This is a funny statement to me because in my family the joke was always that Murray means "late to church" in some language :-) My father used to try all sorts of ways to trick us into arriving before the music began, but we usually ended up in the back.

I'm really looking forward to meeting some of you in person and I will be with the rest of you in spirit.

Thank you in advance for your participation,

Allen

Long Term Plans

After two weeks of splitting time between hospital, home, and church with very little time in bed, Troy returned to work yesterday. I know it was hard for him to return while his heart was clearly somewhere else. The reality is that most of us need to work to pay bills and to keep our health insurance. Working yesterday was a good way to ease back into a routine which will help Troy and his family weather the months ahead.

Troy and I met at the hospital after work to meet with the case managers. Hyatt looked calm and restful. She is heavily sedated to help with her agitation and to keep her breathing easy. We talked with the case managers about Hyatt’s future care. Right now there is enough justification to keep Hyatt in acute care. She will remain in the hospital while the medical team continues to stabilize her and the neuro team finishes their testing. She will have a follow up MRI today and a repeat sensory evoked potential test Monday. Both of these tests were ordered to lend confidence in the neurologist’s repeated prognosis: That Hyatt will remain in a permanent vegetative state. Our hope and faith is unshaken. We continue to pray for a miracle while we navigate the hospital/insurance bureaucracy. At some point the hospital will have to transfer Hyatt to a long term skilled nursing facility so we have a lot of planning and coordination to take care of. We asked a lot of questions and there will be a follow up meeting this afternoon. I will post an update later today.

We are planning a prayer vigil to be held at 3pm EST Saturday. I will post some more information, but please plan on saying a prayer for Hyatt and her family.

As always, thank you for your continued prayers and support.

Allen

What would you say to Hyatt?

One of the things I am thankful for is the opportunity to tell Hyatt how much Holly and I love her and what she has meant to us. We may never know for sure if she hears what we are telling her, but that doesn’t stop us. I have discovered this week that so many of you are stuck in parts of the country where this blog is your only connection to what is going on. Here’s what I’m thinking…

If you would like me to deliver a message to Hyatt, please write a comment and I will print it out and read it to her. Please include your name so that I can tell her who the message is from. If you do not want your message on a web site you can send it to my e-mail address: allenmurray (at) mac (dot) com

Allen

Rough Afternoon

Hyatt had a rough day today. Today included her first session with the physical therapist who is helping with Hyatt’s range of motion. We arrived shortly after the PT visit and Hyatt had become very sensitive to touch and agitated. The doctor prescribed a sedative for her comfort and she was resting peacefully when we left her tonight.

Troy and I met with the palliative doctors to discuss Hyatt’s comfort and mid to long term care. The meeting turned out to be less of a plan for care meeting and more an effort to manage our expectations. The neurologist’s prognosis has not changed so palliate care has come in to help the family with patient comfort and other difficult decisions. Troy re-affirmed his commitment to giving Hyatt all necessary time and care to allow for recovery. We asked to have another meeting tomorrow with the case manager to discuss the plan of care.

One of the neurologists stopped by to discuss Hyatt’s prognosis and upcoming tests. She will undergo another MRI to see if there have been any changes. She will also get to take the somato sensory evoked potential (SSEP) test again. This is the test she was subjected to last week that initially looked bad, but was later questioned by the neurologist. If administered correctly, this test should be able to test the health of Hyatt’s cerebral cortex.

Please pray for Hyatt’s healing, her comfort, and for Troy’s strength.

Allen

Wednesday 9/24

I have never been a patient person when it comes to waiting on something I want. What I want more than anything is to hear some good news concerning Hyatt’s condition. I know that all of you are in the same situation and that for some of you, this site is your source for updates. I apologize that we have not posted since this weekend.

Hyatt’s medical condition has not changed since this weekend, but there have been some care changes. Hyatt was moved from intensive care to intermediate care Sunday night. What this means is that she is not as medically fragile as she was when she arrived at the hospital. She will still have access to a high level of care and therapy. The physical and occupational therapists came by to evaluate Hyatt so that they can make their therapy plan. Their care is important to ensure that her muscles and skin don’t deteriorate while she remains in a minimally conscious state. The respiratory doctor continues to step down the support that the ventilator is providing and Hyatt is slowly taking over more of the effort of breathing. The cardiologist has begun some pharmaceutical therapy for Hyatt’s heart.

Troy and I are meeting with the doctors this afternoon to discuss the next steps in Hyatt’s care. We will likely discuss what care will be needed to provide comfort and health. The challenge for the medical team is to keep Hyatt’s body healthy while her brain heals. Once she begins to emerge from the coma the doctors will shift from palliative (comfort and health) to rehabilitative care.

Troy remains strong. He has been sleeping at home so that he can spend quality time with the girls. It is hard for his heart to be in two places at once, but he is a dedicated father and husband. Troy will have to return to work sometime soon and may try to ease into it this week.

I will post the results of today’s meeting this evening. Please continue to pray for and support Hyatt, her family, and her medical team. I am humbled by the outpouring of love and support you have provided to date.

Allen

Slow News Day

Today was a fairly slow news day on the clinical front. Hyatt’s condition has not changed significantly. The medical team has succeeded this weekend in making her as comfortable as possible and in taking steps to prevent any complications. She is on a ventilator, with a tracheostomy tube in place. (The tube now enters through the front of her throat, below her larynx, rather than down through her mouth.) The staff is managing her agitation by preventing over-stimulation. They monitor her closely and restrict visitation. She opens her eyes for short periods of time, and may sometimes attempt to track objects and faces. She is still considered to be in a coma, and as Troy suggested yesterday, this condition may not change for a while.

Cardiology:
The Cardiologist continues the quest to understand what initiated all of this. The medical team feels confidant that Hyatt’s heart can recover with therapy. They took another sample of spinal fluid Friday for further pathologic analysis to determine if the cause of the cardiomyopathy was a virus. (West Nile, etc.)

Neurology:
Hyatt’s brain remains the center of attention. She was subjected to a test on Friday, which was supposed to measure how her brain is receiving signals from the body. I reported Saturday that the initial results were not good. It now appears that the neurologist may order further testing.

Troyology:
Troy looked great today. He spent the night at home and was able to take the girls to church. Steve is in town to help and support so he stayed at the hospital while Troy recharged. Holly and I took the kids up to see Troy this afternoon so that Casey could demonstrate how to destroy a waiting room phone. Troy was able to return the phone to working condition so we were not kicked out of the hospital this time. I’m glad all those years of education come in handy every once in a while ☺
It lifted my heart to see his spirit in such good condition.

Allen

Sunday 9/21

Hi All,

I stayed at home last night - only the second time since Hyatt had the cardiac arrest. I woke up and brought the family to church with me. Today the Mass was offered for Hyatt. I got to hold Sid in my arms while worshiping and singing... things that Hyatt is passionate about ... Our church family is so supportive and caring - thank you for all the prayers and well wishes.

After having lunch with Bek and Sid's Godparents and our close friends I headed in to see Hyatt.

She had had a tough day. However, they did change her ventilator settings today to a mode that has her doing more of the breathing work - so I think this is what was causing her increased levels of agitation.

I cried three big times today - once while holding Sid this morning (She said "It's ok to be sad Daddy") - once while my parents visited Hyatt - and once while telling Hyatt goodnight and that I'd see her tomorrow. It is getting a bit easier to face the normal realities of life - but the emotions sometimes come out of the blue.

Clinically, no changes - still in the miracle zone - so pray extra hard. I know she can feel it.

Troy.

Parade Day

To everybody who wore purple or thought of Hyatt today - THANK YOU!

I got to hold Sid and parade today with her class - what a blessing! She is my angel!

Thanks to the Staff from Sid's school you made this a really special day for our family.

Troy.

Time.

Hi All, - Troy Here.

The Neuro report that I got this morning was pretty bleak. Medically, the likely outcome is a persistent vegetative state. Medically, the best outcome is a conscious, but severely disabled Hyatt.

Ok, so reality check here. God can and will work wonders in our lives - and boy do we need one of those here. So keep heart and keep praying - it is really the only option in a situation like this.

I have read a large fraction of the blog comments - and I appreciate all the well wishes and prayers (and I really do need them still) ... but keep in mind - I'm really no one special. You each would find the courage and strength to face this type of situation if you keep your eyes focused on God. That is His gift to me at this point in my life.

Amongst the depressing medical news today was something that took a big, immediate, burden off my shoulders - Time. The Neurologists are talking not days and weeks to see how Hyatt pulls through - but they are talking months. So there IS time for God to work a miracle.

Keep the faith. Keep praying. Keep telling your family how much you love them.

Love to all,
Troy.

Saturday Morning Blues 9/20

Every time I send someone a link to this site I issue this warning – read at your own risk. Brain injury is a rollercoaster for the patient and the family. Today’s report is a downer:

I talked to Troy this morning from the hospital. He sounded discouraged and just very, very tired after a long night and receiving another report from the neurologist. Further electrophysical tests were performed yesterday without the results all had hoped for. These tests and associated prognostic findings are based on statistical equations, not absolutes. We will let you know what the neurologist says after all the tests are complete.

Please continue to pray for Hyatt that more healing may occur with time. Please continue to send your love and prayers to Troy and his family. It is impossible to imagine the highs and lows he is enduring, but he does so with amazing courage and faith.

More later, Allen

Thoughts from Durham

Allen, I thank you SO much for picking up on the reports; Troy is so lucky to have friends like you. It's really hard for me not to be there at Troy's side for him.

We made it home last night around midnight, and I saw my kids when I got home from work today. I've never been more thankful to have them in my arms. Both looked taller, had considerably more hair, and were equipped with a much larger vocabulary than when we left. Hannah also knew the standard arm signals for the entire Deployment Sequence for Parachute Jumps. I am not sure what a 21-month old needs with this information, but her Granddaddy apparently thought it was important she learn this last week, and so who am I to question it? You can never be too prepared.

I called Troy's house and let Hannah and Alex talk with Cousin Sidney for a while after dinner. I'm not sure if much was understood on either end, but my little crazies looked fascinated with what Sidney had to say, so I look forward to the beginning of a strong friendship among the cousins in coming years.

Quick Surgery Update

Hi everyone. Troy is at home putting his girls to bed. I'm sure he will post a more detailed account of this evening, but if you are like me, you need info now :-)

I just spoke with Hyatt's nurse to find out about the surgery(s). Hyatt did very well. This kind of surgical procedure is quite common and takes place in the patient's room. Hyatt is now breathing through a small opening in her lower throat and eating supper from a small tube inserted directly into her abdomen. This sounds horrible I know, but it is necessary for her long term comfort as she begins on a path towards healing.

If you have questions which are not being answered by the posts, please feel free to leave a comment or contact me directly by e-mail: allenmurray (at) mac (dot) com

Thank you again for your continued prayers and support.

Allen

Friday Morning

Hi everyone, my name is Allen and I am a friend of Troy’s (I’m also Hyatt’s best friend). I was sad to see Pete and Patricia return home, but they have done a wonderful job and it is time to return to their family. After spending a week in a blue plastic cooler, you need to take the children out and clean them up so they don’t get a cooler related syndrome (See Pete’s post below).

To Pete, you are a great writer and I always enjoyed reading your posts. It was surprising to me that I could cry through a paragraph and laugh through the next. I appreciate your updates and humanity. Now unfortunately, the rest of you are stuck with me and some others posting updates when Troy cannot. I will do my best to keep you up to date if not entertained.

I was able to see Troy and Hyatt early this morning. Troy has been resting some as he maintains his vigil. He was alert, bright eyed, and his nose was cold and wet (good sign in dogs).

Hyatt rested well last night. She was pretty agitated yesterday afternoon so the doctors have added a sedative to her meds to help her relax. Due to the level of agitation, the doctor has recommended much less stimulation during the day. This will mean that loved ones may not get a chance to hold her hand and speak to her. This was hard for me today.

The last 24 hours have been jammed full of activity – Hyatt had an MRI yesterday afternoon and the results will be interpreted sometime early this afternoon. They are also going to do a special test which was not available at the previous hospital. Basically (I can’t remember the terms) they are going to wire Hyatt’s extremities and give her little jolts of electricity. They will measure the signal when it gets to her brain. This test will help diagnose the extent of the damage and hopefully add some accuracy to the prognosis. She will also go in for a tracheotomy which will help her breath easier and will also remove the endotracheal tube from her mouth. While they are poking holes, the doctors are going to add a peg tube for feeding. This means that she can get her meals delivered directly to her stomach. This is a good thing for long term recovery since she will not have a feeding tube going down her throat. Both of these are surgical procedures so please pray for Hyatt and the fantastic medical team caring for her. As soon as I hear the results of these activities, I will let you know.

Thank you to all for the support. Allen

Friday Afternoon

Hyatt is scheduled for surgery to install the tracheal and peg tubes at 4:00 this afternoon. I will let you know how it goes. Please keep her in your prayers.

There is news from the MRI, but it is unclear what it means at this time. The MRI showed bilateral damage to the thalamus region of the brain. This is an area of the lower brain which acts as a translator for sensory inputs to the cerebral cortex. Here is a link to Wikipedia for more information: http://en.wikipedia.org/wiki/Thalamus

The other areas of the brain appeared in the MRI to be undamaged. The Neurologist could not tell us what this means yet. The only conclusive test at their disposal is time. Much of this goes over my head so I apologize that I cannot explain it better. Please feel free to ask questions in the comments section. If any of you are familiar with the anatomy and function of different parts of the brain, I welcome your comments as well.

Stay tuned,

Allen

Going to Fairfax

Hi All,

I'll miss the strength and support Pete has given me over the past week (has it really been a week? - seems like just a blink). I haven't told Pete that I loved him in a long time - and I made a point to do it numerous times over this ordeal.

Just has Pete has been my rock by my side, Patricia has been my rock at home - working with Bek and Sid - doing an absolutely fantastic job with them. Thank you so much Patricia - I love you ( told you that in person today - didn't I?).

I'm heading off to Fairfax in a few minutes after coming home to spend time with Sid and Bek and to put Sid to bed. She's my angel. I just found out that her preschool is going to march in Haymarket Day in Hyatt's honor?!? (That may be the wrong wording - but it was something like that). I'm going to try and be there - God willing - the Parade is Saturday startng at 10am in Haymarket VA. Hyatt was known as "Miss Purple" when she was little - any bystanders want to wear purple? The kids will be in their preschool red - but I think I'll dig out something purple...

Offer up a quick prayer please that Hyatt has a restful night, that she is healed, and that Pete and Patricia arrive home safely.

Q: How long has it been since you kissed your loved ones?

Love,
Troy.

Pete and Patricia going home

Patricia and I are driving back to North Carolina this evening; we haven't seen our kids in over a week, and it feels like a lot longer. That's them above (we leave them at home in that blue cooler when we go on trips).

I'm also hoping I still have a job when I show up for work tomorrow -- sounds like the financial services sector had a pretty stressful week too.

The set up at Fairfax gives me confidence that Troy will be able to focus on what he needs to focus on right now: his wife and kids. He has family still living with him here and hundreds of friends helping out in one way or another. This is not going to get easier anytime soon; there is still some very rough sledding ahead over the short and long term, and I'm so thankful Troy has all of you supporting him in so many different ways.

I'm happy to keep passing on information I have, but my updates won't be firsthand and probably not as frequent. Hopefully someone here can do some of the heavy lifting on this website; I think there's still one or two left standing (read: not on heavy narcotic pain-killers).

Troy, call me when you need me and I'll jump in the car.

-pete

Thursday morning

Patricia and I were up at the hospital with Troy this morning....along with Herman, Ronnie, Sally, and Jane.....and some friends popping in frome time to time. Troy continues to be comforted by everyone at Fairfax, and he's been able to meet with some of the specialists today.

The most informative meeting , in my mind anyway, was with the Neurologist. He has ordered an MRI of Hyatt's brain for today -- something she hasn't had done yet. It should show much more definitively any brain damage, where the CT scan wouldn't necessarily have been that granular. Based on observing Hyatt's phyical responses, I think he is expecting to see such damage -- and if he doesn't, then other tests he's planning (e.g., an electrical impulse test) would hopefully help them understand what's going on.

They're not trying to get anyone overly optimistic about small observations (and I think their most likely diagnosis of Hyatt remains somewhat dire), but he did tell us of something that surprised him during his examination. He said when he touched her and called her from one side, her eyes looked over toward that side; and when he walked around the bed and repeated this on the other side, her eyes again looked toward him. He said this could be an indication of some higher-level brain activity, and something that hasn't been noted or observed before today. By the way, Troy's friend Allen told me the same thing this morning -- that Hyatt's eyes followed him walking across her room, when he stopped by to visit her before work.

Around the time we left, Hyatt was physically stressing somewhat, and the nurse thinks her stimulation needs to go way down; she's not letting visitors in to see her right now, and has turned down the lights to get Hyatt to relax. We've seen this on and off over the last few days; she was off sedatives last night and this morning so that the Neurologists could do their best assessment.

HYATT STORIES

A lot of you have asked about good ways to share stories. Troy asked that I set up this post; please respond in the comments sections with stories YOU have about Hyatt that you would like to share.

thank you.

HYATT PICTURES

Jessica put together this photo page, so please use it. I put it on this main post so people wouldn't miss it in the comments

http://hyattpics.shutterfly.com/

(she says email her at jesbullock@hotmail.com if you can't post, and she'll add you as a member)thanks Jessica!

From Troy

Hi All,

Yesterday I felt the presence of the Holy Spirit in the life of my Daughter, Sidney. She and I played a bunch in the morning and then went in to see Hyatt.

It was magical. Sidney talked to her, hugged her, and kissed her. Sid told her mama how luch she loved her and how long it had been since she had seen her. She told mama about pre-school and all the friends she has seen in the past week. She told mama that she needs to get better and come home soon.

Hyatt was calm through the whole visit - a real belssing - and Sidney was such an angel.

Afterwards we went to eat chicken McNuggets and watch airplanes land at the airport.

I put my exhaused angel down for her nap and went and cried.

There have been concerns about Sid seeing mama and how it would be for her - I worked really hard over the past fe days to make sure I get her as prepared as I could. Watching her and Hyatt interact confirmed it - this was abolutely the right thing to do.

I pray for all the kids of parents who are sick - I pray that the Holy Spirit protect them as he did us.

Love,
Troy.

Fairfax

Troy actually ended up getting a ride in Hyatt's ambulance, and Patricia and I met him up there. The transport went perfectly and Hyatt is settled and looks comfortable.

There's nothing different about her prognosis, but Troy is 100% comfortable with the structure at this hospital. The knowledge and caring of the Intensivist we sat down with was very comforting to him, despite him being dead tired. They've arranged to make a couple of exceptions to their ICU rules to handle this unique and heart-breaking case; they're preparing a lounging chair by Hyatt's bedside for Troy to sleep in tonight and will allow visits from Sidney (there's a 'no children under 12' rule).

We left him sound asleep on a very soft, padded couch in the staff relaxation room -- a place family of patients aren't typically permitted....they'll let him move to Hyatt's room once they get the chair set up, if they can wake him up.

It's been another really long day, and it's time for some sleep.

Hospital Move

Troy has decided to move Hyatt to Inova Fairfax Hospital -- a larger tertiary care center a bit further away from his house. There are a lot of reasons for the move not worth going into here, but Troy and the family on both sides are very supportive and comfortable with the move.

Being at Prince William initially was definitely the best choice for Hyatt while she was there, and we appreciate the many friends we made there, as well as the care and concern from many of the doctors, nurses, and other hospital staff. THANK YOU!!!

This was a difficult decision, and it took a good deal of effort over the last 36 hours on the parts of Troy, myself, and his trusted friend Kent to make this happen. It's difficult for Troy to convince himself that any decision he makes is the right one, because he knows he's in daze and not convinced his thoughts are rational about anything (they are by the way -- it's astounding). If this horrible situation had happened to Patricia, I would absolutely make the decision to move her.

Patricia and I will be headed out shortly to drive Troy up to Fairfax, to meet Hyatt up there and figure out the situation. Could be a late night.

Pictures?

A bunch of people have asked about a way for people to post pictures and stories; you people have no idea how over my head this tech stuff is. Before Troy left for the hospital just now, he was explaining to me some way to access his photos -- the computer I'm using can access his PC through the router, and with certain permissions, and only when it's powered some certain way, or something.

Troy has this house so wired it's unbelievable; as I type here in the kitchen, there is a desktop window of Sidney taking her nap, fed by a web-cam and PC in her room -- no doubt routed in some way through that master control Nerve Center room Troy has set up downstairs in the basement. I am not kidding. Seriously, you have to be careful about where you change your clothes in this house with all the surveillance equipment he's got tied into this vast home network.

Anyway, what I'm trying to say is that I am confident that there's some way to let everyone post pictures, but I have no idea how to do that right now.

I think I figured out how to paste a picture in this message though, so I'll try that. One is a recent picture of Hyatt and Bekah, and the other of Sidney (the red-head) playing with her younger twin cousins, Alex and Hannah (my kids) a couple of months ago. I KNOW there are better pictures than these somewhere -- in fact, Troy was saying that they just got some family portraits made a week or so ago.... so we'll work on that later (and figure out a way for everyone to share photos).

Sidney's visit

Heard from Troy about Sidney's visit; he said it could not have gone better. The nurses had made a spot beside Hyatt where Sid could get up on the bed with her. She had been talking the whole car ride to the hospital that Mama would be sleeping, and that she would be wearing some tubes....so Troy clearly prepared her well.

Troy said she got a nice chance to snuggle with Hyatt, kiss her arm and cheek, and to talk to her -- telling her how much she loves her.

She wants to go back another day too.

Sidney visiting her mom

Hyatt's condition has remained stable this morning, and she's been calm. I talked with all the specialists, and nothing has changed -- we're still waiting for her mind to wake up. Patricia and I came over to the hospital, so Troy could go home and play with and talk to Sidney for a while. Jane, Sally, and Julie have been up here visiting as well.

They're now up here so Sid can visit with her mom -- I'm sure Troy will have more about that later. I've evactuated friends and family so that nobody would accidentally see Sidney on her way in; there would be no way any of us could hold it together watching that little girl come up to visit Mommy, and Troy didn't want her to see her loved ones look at her and fall apart.

Mom drove Troy and Sidney over, and she's going to take them to McDonalds after the visit so she and Troy can spend more time together over some McNuggets. We're calling Nancy and Whitney to come in later, so they can visit Hyatt some and so Patricia and I can go back and play with Rebekah.

Herman hasn't been doing real well and is now physically ill himself; I don't think he's been eating or sleeping much at all. His brother Ronnie is taking care of him right now. My dad has an orthopedist appointment later today, so hopefully they can do something acute for his pain. So far, the cure has been heavy narcotics, and that's making him seem even loonier than he normally is.

22 people in a 12x12 room

No appreciable change in Hyatt's condition as of tonight. This evening, the church choir Hyatt and Troy sing in came by to (softly) sing some of Hyatt's favorite songs to her. It was amazing, touching, heart-breaking, and plenty of other words that end with -ing. Hyatt and the rest of the family appreciated that gesture and memory so much....thank you.

We had yet another huge dinner, courtesy of the local moms and kids. I took Troy back over to the hospital tonight to spend the night with Hyatt (Herman ended up staying with his daughter last night).

There has been another family hanging out in the waiting area the last few days -- a couple with a baby. English isn't their first language, and I've heard from them is the father continually singing/humming in the softest voice you can imagine. Our two families have barely made eye contact, to my knowledge. Today they approached Patricia and me and told us they have been praying very hard for the young woman in the first room, and asked what her name is. The woman said now it'll be easier for her to pray because they can use her real name. They told us her mother is in the CCU, and left with only a few inches of viable lung material. The doctors had told them just few days ago that the situation is hopeless, but now she got better and will live; the pulmonary doctor told her his only explanation was a miracle. She said this is proof that her prayers worked and so she will now pray extra hard for our loved one. Her husband just kept softly singing as she talked.

Sidney

I'm in anguish.

While putting Sid down to bed tonight she told me that "it's been a long time since I've seen mamma" and "maybe someone will take me to see her soon". I held it together until I got her tucked in and then lost it as I walked back to my room.

I'm working through the process of getting her ready to see her mamma in the state that she is in - so that I can bring her in - but I'm worried.

I'm staying in the hospital tonight - in the room with Hyatt - if I can make it there - I'm exhausted - I keep finding myself asleep at the keyboard.

Thanks for all your prayers - I do feel them - they mean the world to me.

Troy.

Update from the hospital

We found a computer with internet access in another section of the hospital -- sign says "for use of families of Oncology patients." Close enough.

Not much has changed with Hyatt's condition; the Neurologist still feels that we need tme to observe and that we shouldn't be getting too anxious over small changes on a daily basis; it's more the large changes that occur over a few days that matter most. Time is working both for and against us here -- every day that she doesnt wake up, it becomes less likely that she will, but with each passing day we can learn more and more from her.

The front tooth she broke last night probably needs to be extracted in the near future so she doesn't have more discomfort by clamping down on it further.

Lots of us coming and going -- I've been up here helping Troy out with various stuff, but he's been able to spend considerable time with Hyatt as well.

Rebekah said her first word today; she looked at Troy this morning and said "Dada."

Gift Card Drive

Pete asked me to post this on the blog, so everyone got a chance to read it.

I am the president of a wonderful group of mom's and Hyatt is one of our beloved members.
The Bristow Moms and Kids are holding a Gift Card Drive for Hyatt's Family. The gift cards will be used to buy supplies that the family needs on a daily basis, such as, milk, bread, paper towels, diapers, etc. The family lets us know what they need each morning and we deliver it in the next few hours. Our goal is to take care of the things that the family doesn't need to worry about, so they can focus on Hyatt, Troy and the girls. We thought this would be a good way for out-of-towners to contribute. We chose the following stores, because they are all within a five minute drive. The gas cards will be for the family to cover the trips back and forth to the hospital.

Here is a list of store's that would be helpful:
*Safeway Gas
*Costco
*Safeway
*Target
*Harris Teeter
*Babies R Us
*Toys R Us

If you would like to contribute, please mail the gift cards to our Post Office Box:
Bristow Moms and Kids
12841 Braemar Village Plaza
Suite 118
Bristow, Va 20136

Thank you so much for your support.
Please continue to pray as hard as you can for Hyatt and her family.

God bless you,
Gina Butler
Bristow Moms and Kids
addiebarr30(at)yahoo(dot)com

late night

Right after my last post, Ronnie called me and us and said Herman needs Troy at the hospital immediately. So again, off we went; unfortunately interrupting Troy putting Sidney down for bed. Hyatt had been clamping her mouth pretty hard and broke/loosened a tooth, causing some bleeding, and (rightly) scaring her father.

She's having some uncomfortable-looking moments with heavier breathing and body clenching, but unlike last night, her oxygen saturation levels are remaining high. It's tough to see her look so uncomfortable though. Troy and I kind of think most of her discomfort seems to happen when a lot of people are in the room, so we'll try to limit that to some extent tomorrow and see what happens. That's tough, because so many people want to come by and talk to their friend.

We just walked back in the house; Hyatt was looking mostly comfortable when we left. Troy has decided to sleep at home for the first night since this whole thing started, and Herman is sleeping in the room with his daughter for the night (makeshift bed of 4 chairs lined up).

Monday

First of all, Hyatt's condition hasn't changed much from last night; her heart and lungs are stable, but neurologically she hasn't improved yet. The phone is ringing off the hook wondering if the lack of a new post meant something bad -- I'm sorry I haven't been home to update you.

Today was so action-packed I'm not even sure I remember the details correctly. Dad and I drove over the the hospital early to meet Herman and Ronnie; Jane, Sally (her sister), and Julie were going to follow close behind us, in hopes we could all be there as the specialists made their rounds. Patricia stayed behind to care Sid and Bekah. When we didn't see Jane arrive soon after us, I called Julie to make sure they were coming. She (Julie) sounded awful.....said she stayed behind and was nauseous, dizzy, and felt like feinting -- and felt bad she couldn't get up and come see Hyatt.

I jumped in the car to go get her and bring her to the ER (I am pretty confident of the route from Troy's neighborhood to the hospital by now). I called Patricia to tell her I was coming to get Julie and she (Patricia) told me that one of her friends' 36-year-old daughter had just dropped dead of a heart attack, leaving behind a toddler Sidney's age (!!!!).

Nancy and Whitney came over to help with the kids, and Patricia and I checked Julie into the ER. Patricia stayed with her while I went back upstairs to the Critical Care unit. By this time, my dad was in such terrible pain from his shoulder that he could hardly move; so Mom took him down the the ER to join Julie and Patricia. My morning was filled with phone calls regarding estate-planning, genetic myopathy testing, second-opinion referrals (and I had a ton of help with this stuff from Steve, Allen, Kent, Nancy, etc). It was a really weird feeling...too busy to think, and people dropping like flies all around us. I understand the financial system and bond markets (my usual day job) were in crisis the last two days unlike anytime in 20 years -- though frankly I don't care, I can catch up on that stuff later. Sure seemed like the end of the world was upon us for a while there. Julie and Dad both got some good drugs and good rest, I popped in a couple times in the ER (I also know the route from the CCU to the ER pretty well now. A lady at the desk in the ER asked me if I needed help finding something and I told her no, that I was just making my rounds.

Now for our various meetings today:

A new cardiologist (one from the same group as the others) did a repeat cardio-ultrasound today to see if Hyatt's heart had changed. His read was that the heart showed some segmentation -- that it was weaker in the front than the other parts. Although far from certain, this could mean that the hyeart problem was related to that front artery -- either a blockage or a splitting. The cardiomyopathy is still a feasible diagnosis however. Bottom line is that if/when Hyatt wakes up, they'll start more acute diagnostics (catheterization, etc), to figure out exactly what the problem is so they can treat her heart most effectively.

The pulmonary specialist didn't really have much new information; she's fairly certain that at this point, Hyatt would NOT be able to breathe on her own however.

We were able to get a second opinion from a neurologist from a different group today. We found him very thorough and experienced with these types of cases. His opinion wasn't much different from the one we had earlier (that a recovery was quite unlikely), but he felt like we need to give things a week or so to observe and see what kind of signals Hyatt gives us. Troy, Ronnie, Herman, and I all really liked him a lot, and Troy decided to ask him to take over on Hyatt's neurology care. He didn't make the change because of a more optimistic opinion; we just felt like he was a better match for us. We had a second EEG, but both neurologists felt it was unlikely to tell us much (but it made Troy feel a lot better).

Troy, Mary Alice, and I had a meeting with a woman Mary Alice found for us who specialize in helping children though traumatic experiences with family members. She had some very good suggestions for talking with Sidney, and Troy talked with Sid tonight about if she wants to go see mommy in the hospital. Sidney wants to, and sometime in the next couple of days, Troy will prepare her for that and bring her in for a visit.

Troy and I also had a meeting with an estate-planning lawyer, to look over Hyatt's life insurance and will and make sure there were no steps he needed to be taking now. She is a wonderfully caring woman, and like all the hospital personnel we've dealt with over the past few days, we feel fortunate to be dealing with such caring people.

Hyatt had visits from several groups of friends as well as the minister of the nearby methodist church. I was busy with other meetings and calls when he came by (twice), but Herman and Ronnie talked about how great he was as well.

Sid and Bekah had wonderful days today. Sid really was not doing well yesterday, and we suspected it was her picking up on something being weird with people going in and out of the house all day long. We decided to try to make her inside world a bit more normal, and get people to call the house from outside rather than ring the doorbell and come through, and it worked wonderfully. Nancy and Whitney have done such a great job caring for them! We SOOO very much appreciate all the neighborhood friends bringing us the things we need and don;t have time for. We really realized this today when all got home absolutely exhausted today and there was a full (HUGE) dinner waiting for us.

I am looking back over this post, and am sure I missed at least 500 things that happened, but I'm having trouble piecing the day together in my mind. In the private meetings we have, Troy keeps telling people that he brings me to think straight since he can't. Little does he know how far I am from being able to think straight. I still cannot imagine what it's like to go through something like this, but watching a loved one go through it and being powerless to really help cannot be that much easier.

During one of my calls today, my eye caught a small glitter on the hallway carpet. I picked up a very small champagne-colored diamond (way to small for anyone to miss it) that looked like it could have come from an earring or something. I showed it to Herman and told him I was going to give it to Sidney. It's probably just cut glass, but Herman put it in his wallet. He said he'll take it to a jeweler, and if it's a diamond he'll have it mounted for Sidney and tell her it's something Uncle Pete found while he was taking care of her Mommy.

Troy is upstairs giving Sid a bath and putting her to bed. I'll shortly take him back over to the hospital to spend the night with his wife again tonight.

My 21-month-old daughter just told me she loved me over the phone. I didn't know she could say that. I'm also not sure what she's doing awake at 9:20pm with her grandparents (her twin brother is asleep, like he should be).

take care everyone.

pete

Love and Hyatt

Troy again --

Hyatt never met a person that she did not love. She loved all those she had not met. Ok, a bit on the corny side I know - but it is true. Hyatt cared about everyone through her work at the EPA - she worked tirelessly to make this world a better place for everyone, and that includes you.

For those that she was lucky enough to know personally, she cared deeply about all the ups and downs of your life. I've seen so many "best friend" comments on this blog - and she had that gift. I don't make lasting friends very easily and I have a difficult time maintaining contact with them - she is my opposite - she makes lasting friendships that continue to thrive even if separated by distance.

I've been praying a lot these past few days for a miracle. I think that I've already seen one and that is the outpouring of love that our family has felt from everyone who is praying for her. I've seen people draw closer to their own families as a result of our struggle and I've seen love expressions from people who have never met us. I treasure each and every prayer that is offered for her - as I know that she does.

I continue to pray for the miracle that I want - but I do acknowledge that God provides miracles in the way that HE wants. I continue to beg that He hears our cries for Hyatt, and I continue to believe that he will provide for her.

Love,
Troy.

PS. How long has it been since you kissed your loved ones?

Preparedness

Hi, It's Troy again.

Yesterday was probably the toughest day in my entire life. You'd think that it would have been the night of her Heart Attack (the most recent likely diagnosis - not 100%, but the best info we have) - but that night was mostly autopilot. Some thoughts on preparedness that are occurring to me today.

*** 911 first - fast and without pause.
*** Take a refresher CPR course and run through the procedures in your mind often.
*** Always have a neighbors number MEMORIZED. My cell phone was in the car - and luckily a good neighbor and friend had called recently and was in our caller ID.
*** Do a power of attorney right now so that you have full control over each others affairs - without it your hands are somewhat bound.

Always say you are sorry - always say you love the other - always be tender, gentle, kind and affectionate.

Love to all,
Troy