William Blake Burns

Happy Birthday Will!

2007-10-10T15:56:00.000-05:00

It's hard to believe that 2 years has passed since you came into our lives. Sometimes it feels like yesterday, and other days it feels like eternity.
We miss you, love you and look forward to the day we can hold you in our arms again.

Love,

Mommy & Daddy

U of M Survival Flight Plane Crash

2007-06-06T11:59:00.000-05:00

I just heard that there was a plane crash in Michigan that involved a survival flight crew that was on their way to the hospital with organs for donation. One of the victims included a beloved doctor who we knew during our stay at Michigan. His name was Dr. David Ashburn and he had a very distinctive southern accent that made Josh & I feel very at home with him. We dealt with him primarily during our 1st visit when he would assist with chest closures, etc. I just thought I would share with you this news so that you may join us in praying for the University of Michigan staff as well as the friends and family members of the victims.

Below is an excerpt from Michigan's website:

"U-M is mourning six members of a U-M Survival Flight crew whose plane crashed in Lake Michigan late Monday afternoon. The U.S. Coast Guard this morning (June 5) declared that all on board were lost. The team was heading back to the Willow Run Airport, carrying organs for transplant.

“Our hearts are broken by this devastating and irreplaceable loss for the University of Michigan community,” said President Mary Sue Coleman during an 11:30 press conference today. “Every day, the doctors, nurses and flight personnel of Survival Flight perform heroic work to save the lives of others, and that is how we will remember those who perished in this tragedy—as selfless heroes.

“There is no greater act than that of saving a life, and through our grief, we take comfort in knowing these six men died in the service of a fellow human being.”
Aboard the aircraft were:
Dr. David Ashburn, a fellow (physician-in-training) in cardiothoracic surgery
Richard Chenault II, a donation specialist with the U-M Transplant Program
Dennis Hoyes, a Marlin Air pilot
Rick Lapensee, a donation specialist with the U-M Transplant Program
Bill Serra, a Marlin Air pilot
Dr. Martinus (Martin) Spoor, a cardiac surgeon who had been on the faculty since 2003

Dr. Robert Kelch, executive vice president of medical affairs, said the U-M Health System and greater campus community are in mourning for the victims and their families.
“We are thousands of people who come together every day, saying to our patients: ‘We can treat your illness,’ ‘we will help you recover,’ ‘we will work to return you to the life you knew.’
“We are a place of strength and optimism, of determination and knowledge. The people who work here are people who believe—sometimes, against all odds—that they can help make a difference in a patient’s life. So it is particularly difficult when a place of hope, loses hope. But that is what happened this morning when we learned that our crew was not coming home to us.
“Despite valiant, tireless efforts on the part of the U.S. Coast Guard and many other emergency and rescue agencies—for which we are extraordinarily grateful—we now know that our team is lost.”
Soon after takeoff from General Mitchell International Airport in Milwaukee the pilot sent an emergency signal indicating he wanted to turn the Cessna jetaround. Within moments air traffic controllers report the plane disappeared from radar."

Thanks,

Stephanie

Some Cell Phone Pics Never Shown Before

2007-03-05T13:10:00.000-06:00

Here are some pictures from Josh's cell phone. We can't believe the quality of these. Still working on getting the cell phone videos uploaded. We thank all for the support and prayers received. We truly feel blessed to have such wonderful family and friends.

Thanksgiving Bib from Nanna Nancy

Our Sweet Little Angel

Our Little Fighter

Grandma Kirk Holding Will for the 1st Time

We Loved Every Chance We Got to Hold Our Sweet Will

1 Year Later

2007-02-21T20:54:00.000-06:00

I can't believe it has been so long since I posted on the blog... even harder to believe that the dreaded "anniversary" of Will's passing is here.

I would love it if everyone could add themselves to the buddy map below to show how many people have been touched by baby Will. I've seen these maps on other carepages, and it's really quite how amazing to see how many people are praying for you.

Happy Birthday Will

2006-10-10T09:00:00.000-05:00

Well, here we are... a year ago my precious baby boy was born. I can remember that day in vivid detail. His birth was so unexpected for me... it was a whirlwind!

As expected, today is a sad day for us. As I drove to work this morning, I couldn't help but wonder, what would we be doing for Will's birthday if he were still here? What kind of cake would I make for him? What kind of theme would the party have? Then I snapped out of it, because this kind of thought is extremely painful. I try not to do this to myself, but sometimes I can't help it.

This was displayed at our church on Sunday in honor of Will's birthday. It was made by David Friedli, our associate pastor.

These flowers were arranged by Kirk, Josh's mother. She and Will have a special bond as they share a birthday today.

FOR WILL....

This angel touched your hearts
For only just a while
To teach you what it means to love
And show you how to smile

He could not stay for long
Because soon God would call him home
But he left behind these memories
To carry with you when you roam

He taught you through his courage
And the strength it took to live
And to see his eyes and smile
Oh, what you wouldn't give

Now your tears of sorrow fall
But through each tear there is a light
For this end is not goodbye
Its only time until you'll unite

For one day the skies will open
And God's hands, they will unfold
And your precious baby will await
For your arms to hold

So till then, hold on
Keep his legend in your hearts
And know the journey isn't done
It's only just the start...

Sweet Dreams

2006-07-31T11:56:00.000-05:00

I had the most wonderful dream that I have to share with everyone.

It happened early Sunday morning. I haven't dreamed about Will at all since he passed away.

In the dream I was back at Vanderbilt's critical care unit. I went into his room and picked up him out of the crib and sat down in the rocker as I used to. As I rocked him I started to look around the room wanting to know what his vitals were. As I looked at his ventilator, I couldn't see the screen because it was turned the other way. So I called for Will's nurse, and I asked her, "What is the ventilator setting at today?" And she replied, "Well, he isn't on the ventilator anymore... he is breathing on his own, don't you see?"

I looked down at Will in my arms. I started crying uncontrollably in my dream as I noticed he had no trach, no IV's, no feeding tube, no shaven head... he was perfect, healthy, and happy. He had the biggest smile on his face, almost laughing.

I know that Will was speaking to me in my dream... Mommy, I'm happy & healthy. Don't worry about me. I'm fine.

My only wish is that Josh (and everyone else for that matter) could have experienced this same dream. It is the most wonderful dream that I have ever had.

2006-07-16T17:36:00.000-05:00

I put together this photo montage for baby Will. Included are some never before shared pictures that we took while we were in Michigan last fall. At the time, all we had was our camcorder, so those pictures aren't as good of quality. I hope you enjoy!!

Angel Tribute Video

2006-07-02T22:43:00.000-05:00

Get out the kleenex! This is a dedication video for heart angels, and it includes Will. We know quite a few of the babies and their families in the video. Very touching!

New Pics

2006-06-27T16:58:00.000-05:00

This is our last family portrait taken by Arlene just days before Will passed away.

Dr. Bove (Will's heart surgeon) and one of Will's roommates, Jeremiah Pearson. We are so thankful that we had the opportunity to get to know him and his parents, Arlene and Judd.

Arlene sent me these pictures in the mail and I thought I would share them with you. Seeing the picture of the three of us brought a lot of memories back of Will's final days. This picture to me really captures how sick Will was... poor little guy. He was so miserable. Seeing this picture comforts me in that letting Will go was the right thing to do, no matter how painful. It wasn't fair to him. He deserved better.

Josh and I are doing ok. I just got offered a position with a property management company for an apartment community in the West End area of Nashville. I will be a leasing associate. I'm looking forward to getting back in the workforce. We're also going to be moving in with Josh's parents next month because our rent is getting ridiculously high and we are looking to build a house... probably in the Hendersonville area. So, that's very excited to us. Our first home!

Will's Home Video

2006-06-10T16:53:00.000-05:00

This video was taken on February 8th, the day before Will's final open heart surgery, the Rastelli Procedure. It's the only home video we have of him. I'm excited that I have finally found a way to share it with everyone. It was taken on our digital camera. Enjoy!!

You need Macromedia Flashplayer 8 to see the video. If you don't have it, you can download it for free at this website: www.adobe.com/products/flashplayer/

Hearts United Video

2006-06-10T16:14:00.000-05:00

I found this very touching movie on a carepage for the Husted family. I hope you enjoy it.

Nurses Day

2006-05-05T23:01:00.000-05:00

I don't know if any of you know, but tomorrow is National Nurses Day. I decided I wanted to do something for all of the nurses that helped us throughout our hospital stay with baby Will. So, tomorrow I am going to visit the nurses at Vandy's PCCU and bring them some treats and treat them to a little pampering. Mary Kay makes a product called Satin Hands that's great for anyone who uses their hands. I look forward to seeing them again.

I also want to let you know that baby Wyatt (Will's heart buddy from Michigan) is sick with RSV, a very serious respiratory infection. He will be in the hospital until he recovers, and we're not sure how long that will be. Luckily, his heart is fine and his chest x-rays look good. Pray for a speedy recovery.

I also want to inform you about the Wilbanks family in Michigan (we've never met). They are struggling right now. They have a baby boy, Griffin, who was born the last week of April. He had open heart surgery shortly after his birth, and unfortunately he had to be put on ECMO, a means of life support, right after surgery. After an attempt to remove baby Griffin from ECMO, doctors realized the only way to save him would be a heart transplant. This could take weeks or months, and he and his family have a very tough road ahead.

Will's Headstone

2006-04-27T10:54:00.000-05:00

Will's headstone was installed this week. Many of you have been asking about it, so I thought I would share a picture of it since many of you live out of town and can't see it. I thought that it turned out very well.

Josh and I are doing ok. We're going to Memphis this weekend to celebrate my 25th birthday. I feel much older than 25... this whole experience has aged me quite a bit.

A Flower For Will

2006-04-17T12:42:00.000-05:00

Angela Hayward made this flower in loving memory of Will and Derrion Johnson, another heart baby in Michigan who died about a week before Will. Angela's daughter, Eliya, was in the PCTU with Will last fall and we shared a room with her and baby Jorianna. Eliya passed away just after Christmas. This flower is next to baby Eliya's grave.

Josh and I are doing ok. We had a nice Easter weekend. After church yesterday, we visited Will's gravesite. It was Josh's first time since his burial. It was tough for him, but he is ok. We miss Will deeply. There isn't a moment that passes by when I don't think of him. He is constantly in my thoughts.

TV Program on HLHS

2006-04-03T15:10:00.000-05:00

Hello everyone.

Just want to let you know of a television program that will be on ABC tonight that will follow a family with a child that has Hypoplastic Left Heart Syndrome (HLHS). The title of the show is "Miracle Workers," and it comes on at 9 p.m. (central time).

Pictures

2006-03-26T18:54:00.000-06:00

Proud Aunt Annie holding Will

I thought I would share these pictures of my sister, Leigh-Ann, holding Will. We actually took these with her cell phone. Not so bad for a camera phone, huh? I meant to upload these sooner, but I haven't gotten around to it. This was the only time she was able to hold him, and we had forgotten our cameras! Thank goodness for cell phones!

Josh and I are doing as well as expected I guess. We still have these moments when we look at each other, and our eyes start to well up with tears. Some days, I can talk about Will and talk about him, and it puts me in such a good mood. But other times, I can hardly say his name without having a complete meltdown. That's when it seems like my tears never stop... it's like a water faucet, and I can't seem to shut it off.

We spent most of the weekend in Knoxville with my sister and her boyfriend, Brandon. I felt kinda bad that in the 2 years she has been there, I hadn't made a trip up to visit her. But, we've been just a little busy.

Josh did pretty well with his first week back at work. I have been keeping myself busy. I even had a job interview with WebMD last Thursday for a marketing position... it seems right up my alley! I hope to hear from them early this week. I'll let you know what happens!

Letter from Dr. Bove

2006-03-19T12:18:00.000-06:00

Josh & I are back in Nashville. We arrived here late last night. We wanted to be back for church this morning. It felt good to get out and go to church this morning with Hunter and Sarah.

When we arrived home last night, we were greeted with a large stack of mail. The first letter I noticed was from the University of Michigan Congenital Heart Center. I wondered what this could be. It was a letter from Dr. Bove, Will's heart surgeon. We never got a chance to speak with him after Will's death, since it occured over the weekend when he was not in. His letter was very comforting to us. Here it is:

Dear Josh and Stephanie:

Please accept my sincerest condolences over the death of your son, Will. As you know, Will had a very serious heart defect further complicated by a number of other abnormalities. When Will returned to our institution in early February, we felt that an attempt to repair his heart using all four chambers was his best chance and, in fact, this seemed to be successful. Most unfortunately, the gravity of the other issues including infection, kidney dysfunction, and neurological issues, eventually took their toll. I hope that you were comfortable knowing that all the best decisions were made for Will and I hope that you can achieve some closure in that knowledge.

Again, please accept my sincerest condolences and those of my entire staff.

Sincerely,

Edward Bove, M.D.

Josh is returning to work tomorrow, while I figure out where to go from here.

As for our future family, Josh and I will probably look into genetics counseling before trying again. The genetics team at Vanderbilt did a series of tests on Will, but they all turned out to be normal. His abnormalities were more than likely a fluke thing that will never happen again. We're not sure at this point when we will try to have children again, but we will know when the time is right. We look forward to the day when we become parents again.

Having Will made me realize that one of the main reasons why I am here on earth is to be a mother. It is the most wonderful gift that I could ever have. I am so thankful that God chose Josh & I to be the parents of Will. We are so blessed to have been given the opportunity to know and love him.

Will's Eulogy

2006-03-16T13:14:00.000-06:00

I have really missed doing my daily updates on the blog. I was thinking about it just now when I decided to post an update.

Josh and I are doing ok. We have enjoyed our time together in Heber Springs, Arkansas, where we have taken a much needed break this week. It has been nice, but when we resume our life as we know it next week, it will be tough. All we can do is take it one day at at time, one hour at a time.

The hardest part about my grief for losing Will is when I forget that he is gone. I have caught myself doing this a couple of times, but I am sure it will pass. For example, when our power went out last week, the first thing I thought about was... oh no! Will's ventilator! But then, I remember, he isn't here. Maternal instinct is a very powerful thing. You can't just shut it off.

But, I am still amazed at the affect Will has had upon others. For this I am very thankful.

Anyway, I thought I would share the wonderful eulogy that our pastor, Dale Robble, did for Will's memorial service.

147 Days. It sounds so short. And it leads to the profound mystery of life…and to the most asked question in life…Why?

Over the years I've probably asked myself thousands of times “Why?” Why does God allows things like this to happen — and I still don't know the full answer.

The Bible speaks of "the mystery of iniquity"— In Second Thessalonians 2:7.
and that is what evil and death is: a mystery. But what I do know is this: No matter what happens to us, God still loves us and He still cares for us.

He knows your pain and heartache. He knows the grief we are going through.

Jesus' promise for you is: "Blessed are those who mourn, for they will be comforted" (Matthew 5:4).

We may not always understand why things happen—but God does,

And we can turn to Him for the comfort we need.
Take comfort in the fact that Will is now whole.
His heart is full of love and happiness.

He has no more scars and tubes…
He has seen his last physician…
Because he had an appointment…
With the great physician.

And as we speak, Will is playing safely in heaven

Beyond the pain and sorrows
of this room and this world.

And take comfort also in the fact that some day you can see Will again in heaven.
-------------------
In heaven there is "no more death or mourning or crying or pain, for the old order of things has passed away" (Revelation 21:4).

Thank God for the hope we have in Christ!

In cases such as this, we have a choice to make.

All of us survivors have a choice.

A choice, to either view Little Will from the vantage point of entitlement,
and that is to say, “He was mine. I had a right to him. He was my child,
and therefore his death is tantamount to theft,” or to look on Will from the vantage point of grace and gift … That is that fact that: He was never really ours, really, -- not for a single moment longer than we could claim was our “right.”

We have a choice between which perspectives we would put around his 147 days with us
and as a part of your and our history.
My prayer is, our prayer is, that you chose to regard his life as a gift.

I chose to regard him as a little boy that I never deserved to know. As someone
whose very presence in my existence was utterly beyond anything I could have created.

That does not take the sadness out of it. It does not in any way diminish the grief,
but it keeps me from being angry and resentful at God … or at the doctors
and I would say to you that you, too, have the same choice –

You can either regard the people you have loved and lost…as your rightful possession and therefore their death as a kind of stealing of what rightfully belongs to you;

or … you can stop asking, “Why did he die?”

and step back and ask a greater question, “Why did he live?”

When you ask that question, you’re getting back to that mystery of grace that any of us exists for a single day and the kind of gratitude that you feel in the presence of something
that you know is a gift is something very different from what you feel when something that is rightfully yours has been stolen.

So “Why did Will live?”

You know, God could have just made sure he was never conceived.

But Will had a purpose. “Why did Will live?”

I don’t know both families real well. I don’t know everyone here. But I suspect Will lived so this family would come together, intertwined together in love as every family should be.

I think Will lived for so Josh and Stephanie would experience real love. Will lived so the Burns, Cox, Smith, Perdue families would come together.

I think he lived so we would all turn to God. I think Will lived to bring this large extended, blended family together.

And I pray he lived, so that that this becomes routine, and not just during a time such as this.

Will lived for all of you…Will, Little Man, mission accomplished. Well done!

It only took him 147 days to do amazing things in our lives. 147 days.

Imagine what you could do. Imagine what you could do in honor of Will n the next 365 days.

John 14:2-3 (NLT)
There are many rooms in my Father's home, and I am going to prepare a place for you. If this were not so, I would tell you plainly. When everything is ready, I will come and get you, so that you will always be with me where I am.

Somehow, I think God made sure Will’s place was ready fast, because his heart was small…and so full of fight…and so tired…but it could only take so much.

Psalm 56:8,
"You, God, keep track of all my sorrows. You have collected all my tears in your bottle. You have recorded each one in your book."

The image there is that God is so moved by our tears, he collects and numbers every single one of them.

Eric Clapton wondered in his Grammy Award winning song that was just played about the loss of his six-year-old son, if there would be tears in heaven. And the answer is, yes.
Your tears are there. God is so aware of every single one of them. He's made note of them.

Just as a parent needs to know that his or her child is safe at school. Josh and Stephanie,
You long to know that Will is safe in death. We long for reassurance that the soul of a child goes immediately to be with God. But dare we believe it. Can we believe it?

According to the Bible we can.

Scripture is surprisingly quiet about this phase of our lives.

When speaking about the period between the death of the body, and the resurrection of the body, the Bible doesn't shout; it whispers. Kind of like you would lean over and whisper into Will’s little ear.

But in that whisper, a strong voice is heard.

This authoritative voice assures us that, at death, Will immediately entered
into the presence of God and enjoys conscious fellowship with the Father
and with those who have gone before.

Jesus said, "Bring the little children unto me."
And He said that for a reason.
Will is complete again

He will be missed. Our God is the God of all comfort and He can bind our broken hearts with His love. God loves you and sees your needs. Let Him meet those needs today
and every day.

Lean on Him today and every day until you meet Will again.

Tuesday, March 7th

2006-03-07T10:57:00.000-06:00

Will's obituary ran today in The Commercial Appeal.

The address they have for Saving Little Hearts is incorrect. Send donations to:

Saving Little Hearts
5629 Barineau Lane
Knoxville, TN 37920

Make sure that you indicate that your donation is in memory of William Blake Burns. They are setting up a memorial fund in his name. Be on the lookout in a few weeks on their website where they will have a link about this fund which will have pictures of him and his story. I'll let you know when you will be able to see it. Their website is: www.savinglittlehearts.com

Monday, March 6th

2006-03-06T15:02:00.000-06:00

We have made the funeral arrangements for little Will:

The funeral services will be held at :

Harpeth Hills Memory Gardens
9090 Highway 100
Nashville, TN 37221
www.harpethhills.com

The visitation will be held this Friday from 4-7 p.m.
The memorial service will be held this Saturday at 11:30 a.m.

Also be on the lookout this Wednesday in both The Tennessean and The Commercial Appeal for his obituary.

If you would like to send flowers, please contact:

Bouquets & Baskets Florist
7091 Old Harding Rd.
Nashville, TN 37221
615-662-7755

Also, for any of you who are coming in from out of town and need a place to stay, several people have offered their homes. Please call me at 615-498-0441 if you are interested.

Thank you once again for all of your comments and prayers. It means so much to us!

Sunday, March 5th

2006-03-05T21:07:00.000-06:00

Today was pretty hard for us, as you can imagine. It has been a rollercoaster of emotions.

The toughest part had to be when we came home this afternoon. We set our bags down in the living room, and the first thing I wanted to do was go into Will's nursery. Tears rolled down my face as I realized he would never see his room that I had so carefully decorated and planned out for him. It is hard to know that he never knew what life was like outside of a hospital.

And as I finish his baby book, I realize all the "firsts" we will miss together... first bottle, first outing, first tooth, first steps, etc. Our hearts are broken, and I wonder if they will ever be unbroken.

Our experience with Will's life and death is something that I would not wish upon my worst enemy, but at the same time, I would not trade this experience for anything in the world.

It was through Will that Josh & I have come to wrestle with the sovereignty of God and ultimately find a deeper walk with God than we could have ever imagined. When you are faced with burying your firstborn infant child, you are shaken to the core of your being. The blessing in that is, it is then that we approach God and His sovereignty from a rare perspective. We come to Him stripped of all pride, broken, desperately aware of our hopelessness apart from Christ. It is in our weakness that we find His strength, hope, comfort, and salvation.

October 10, 2005 - March 5, 2006

2006-03-05T02:57:00.000-06:00

Our sweet Will is now in heaven. No more pain, no more surgeries, no more suffering. He is perfect.

Will passed away at 2:05 this morning. He was surrounded by his mommy, daddy, uncle joe and shauna.

He went peacefully. We miss him so much.

Will has touched so many lives in his short little life... more than most of us will in a lifetime.

We are in the process of making plans to fly back to Nashville. We will update as soon as we know the arrangements.

Saturday 2nd Update

2006-03-04T20:45:00.000-06:00

We have some bad news.

When I came into Will's room this evening... I had this horrible feeling of dread as I looked at him. I knew. Will's swelling has gotten much worse over the past couple of hours. His drain only got out 5 cc's over the course of this afternoon. There's only so much he can pee out.

I asked to talk to the doctor on call. And he said that they have done everything they can do. He didn't think Will was going to make it through the night, and if he did it would only be a day or two. He said that parents tend to have a good perspective on things.

We have moved Will into a private room. Josh and I will hold him. We may start weaning his ventilator and his blood pressure meds, or we may let nature take its course. He is on a lot of pain and sedation meds, so he won't feel anything but our loving arms.

We will let you know what happens. Thank you to everyone for your prayers.

Saturday, March 4th

2006-03-04T14:16:00.000-06:00

Will is hanging in there.

They haven't been able to wean anything. His ventilator settings are the same. He is still getting the same dosages of dopamine and epi (blood pressure meds). His chest x-ray from this morning showed no changes... it will take time for his lungs to improve and heal.

Will's chest tubes have been removed since they haven't been draining anything. The drain they installed yesterday seems to be draining pretty well. He is still very swollen... it looks so painful! To address this, they started him on a lasix IV drip and increased his dosage of diurel.

So far, his blood and spinal fluid cultures haven't grown anything. I pray that it stays this way.

As always, I will keep you posted!

Friday 2nd Update

2006-03-03T18:03:00.000-06:00

Will came back from his procedure a little while ago. He did ok... he is a little bit sicker, which is expected. They had to start him on epi and give him fluid to help him maintain his blood pressure. Since Will got some more fluid he is more swollen. They have also put Will on a fentanyl drip for pain. The ventilators don't work as well in the OR, and because of that Will came on high settings... rate of 50 and oxygen at 60%. His blood gasses have been getting better so hopefully later tonight that can begin weaning. The docs expect him to be sicker over the next 24 hours, but hopefully things will improve.

The drain that they installed is pretty much like a chest tube, but the catheder is smaller and kind of coils up underneath the incision. It drains out just like a regular chest tube.

This morning the neurosurgery team decided to tap Will's reservoir on his head so that they could get some cultures of his spinal fluid. So far it hasn't grown any bacteria, but the white blood cell count is up. When I asked how high the count was, the doc said that it was 1,600, but the count is different from blood. Apparently, you are not supposed to have any white blood cells in your spinal fluid. So, it may be that Will does have an infection in his spinal fluid. This is very troubling to us, and it may be as long as 72 hours (Monday morning) before they can say for sure whether or not he has an infection.

I'll continue to keep everyone posted on Will's condition.

Friday, March 3rd

2006-03-03T12:58:00.000-06:00

We got the results back from all of the tests that the neurosurgeons ordered last night, and it appears that Will's VP shunt remains unchanged... a very good thing. So, they do not want to "externalize" the shunt. But, they do need to do something about getting all of the fluid out of his chest.

This morning was really rough for me. When I walked into Will's room my heart sank. He was so swollen... more swollen than he has ever been. The poor guy can't even open his eyes and his lips look like they got collagen injections. When I asked what happened, his nurse told me that his incision managed to dry up a little and it closed. Normally, this would be a good thing, but lately his fluid has been draining from this site, and now it had no place to go. It broke my heart... I cannot stand to see him like this.

At first the docs wanted to got to the OR and insert a PD cath in his belly so it could drain some fluid. The neurosurgeons had a problem with this because they felt that it would increase the risk of infection of the VP shunt because the cath would be next to it.

So, Dr. Bove has come up with a better plan. He is taking Will to the OR this afternoon (sometime between 3-4) and he is going to insert a drain on the upper right side of his chest. It will be similar to a chest tube, but it will be much more effective because it is going to be inserted so that it can go straight to the source of the leakage.

I am pleased with this decision. One of the great things about it is that it won't require a 2nd trip to the OR to have it removed like the PD cath would have.

I will update in a couple of hours after Will is back from surgery.

Thursday 3rd Update

2006-03-02T23:55:00.000-06:00

Just thought we'd share these pictures that we took of Will tonight. Such a tough little guy!

Will had his tests this evening, but it will be sometime tomorrow before we hear the results.

Thursday 2nd Update

2006-03-02T17:58:00.000-06:00

Here's the latest:

The docs have discovered that Will's belly and his chest are "communicating" through a hole that was accidently made during his heart surgery... something that is fairly common. "Communicating" means that fluid in his belly can get into his chest and vice versa.

One of the biggest concerns with this "communication" is that his VP shunt drains into his belly. This is serious because some of the infected fluid from his chest could get into his belly and into his VP shunt and finally infecting his brain.

There has been talk of taking out the bottom part of Will's VP shunt (in his belly) and putting it into a sterile bottle that will catch the excess fluid from his brain. This of course has risks and requires a trip to the OR. The neurosurgery team does not want the shunt to be tampered with unless there is a malfunction or infection in the VP shunt. So, they will be doing a series of tests on Will this evening to determine the patency of the VP shunt. This will include a CT scan and an ultrasound.

I haven't talked with Dr. Bove yet, but it appears that he and Dr. Hirsch (cardiac surgical fellow) want to take Will to the OR tomorrow to install a dialysis catheder (like the one he had for his Norwood Procedure). This catheder will not be for dialysis, but to help remove the fluid in his belly so it doesn't travel into his chest.

I will keep you posted as things develop.

Thursday, March 2nd

2006-03-02T14:23:00.000-06:00

Will is not doing very well. He needs your prayers.

Well, we just had a sit down with an attending cardiologist and a cardiac surgical fellow. Here's what's going on:

1. Will's chest is full of fluid that hasn't been able to drain. I'm not too clear on what's going on with this fluid, but from what I understand his blood is having problems clotting the way it should and the fluid is starting to collect in pockets within his chest cavity. It is starting to create scar tissue in his chest wall. This has caused Will to have some problems with his lungs because they cannot ventilate properly.

2. Will is still having problems maintaining his blood pressure. He is now on a high dose of dopamine. If things keep going this way, he will be back on epinephrine.

3. All of this fluid has created problems with his incision trying to heal. As I mentioned before, fluid is constantly leaking from the top part of his incision, which is near his trach. In fact, the incision opened back up last night. The surgical fellow had to put a couple more stitches to close it back up. Now it appears that an intervention of some sort is needed to close his skin completely. We have 3 options (all of which have their risks and benefits):

a) Insert a sponge and a vaccum device: this is normally used for superficial wounds, and there are no studies on how this would do in a chest cavity in which the sternum is open. It is risky because it cause injury to the heart with it being so close to the incision... it could rupture a vessel. This can also take several weeks for it to work. It can also be highly beneficial if it works. It could help get rid of all of this extra fluid in Will's chest.

b) Cover the wound with a plastic sheild: this is what they normally do when a baby's chest is left open after surgery. This would essentially put us in a "stall mode," and it really has no benefit as far as we can see. The only risk is infection.

c) Have a skin graft taken from another part of Will's body: this procedure would involve plastic surgeons. Finding skin & tissue on Will's body will be very difficult, given that he has been hospitalized for almost 5 months and several parts of his body are swollen with stiff skin and tissues. This is also no small undertaking. Will would have to go to the OR for a lengthy procedure. And since the graft is so close to the trach site, it could create problems with his skin and tissue being able to support his trach. It looks like at this point, this will be Will's best option. The plastics team has already done a consult and taken pictures of Will. We should hear back from the attending soon.

Since Will is getting sick again, this has prompted a discussion with Will's doctors on whether or not Josh & I want "heroic measures" taken in the event he goes into cardiac arrest. This is something no parent should have to decide. At this point, we have decided that we do not want them to perform CPR or shock his heart. They will give him medicines and give him more support through his ventilator if needed. We may change our minds, but for now we feel that Will has been through enough. With all of his other problems, CPR would most likely add more insult to injury. We pray that we will never have to do this. We pray that whatever God wills to be done, will be done.

Wednesday, March 1st

2006-03-01T13:52:00.000-06:00

Will is doing ok.

Yesterday a cardiac surgical fellow took out Will's remaining chest tube and put in another one because his tube was leaky around the site and it didn't efficiently remove the excess fluid in his chest cavity. Unfortunately, when he did this procedure, he made a contusion on one of Will's lungs causing him to have a lot of bloody secretions come out of his trach. This should heal in time.

Unfortunately, Will's new chest tube kinked up, and it too was only removing a small portion of the fluid in his chest. Since the fluid had no place to go, it came out of the top part of Will's chest incision. In just 5 minutes after doing a dressing change, it was completely saturated. Fluid was leaking out and soaking his trach ties and bedding. Poor little guy!

So, early this afternoon another surgical fellow fixed the chest tube and put in another chest tube on his other side to help with removing the fluid. So far, it looks like the new tubes are working like they should.

They also decided this afternoon to address his IV access issue. Yesterday, the docs ordered a vascular ultrasound of his inferior vena cava and femoral veins to see if the clots discovered at Vandy were still there. If the docs were to insert a line in his groin with the clots still there, it could be catastrophic. But thankfully, they didn't see the clots at the location of where a line would be put in (but it is possible that the clots are higher up), so this afternoon they are putting in a femoral line.

Since Will had all of this excess fluid in his chest, it has been very difficult for his lungs to ventilate properly. His lungs are wet and he has quite a bit of effusion (fluid around the outside of the lungs). So, his ventilator rate is still at 30, and his oxygen had to be turned up to 60%. Hopefully, this will be turned down shortly once the new chest tubes are able to remove the fluid so he can breathe better.

Tuesday, February 28th

2006-02-28T17:02:00.000-06:00

Will gave us quite a scare this morning.

When I arrived to his room this morning, his nurse said that Will had been keeping her very busy... not a good sign. Apparently, 10 minutes before I got there, he had another "spell." His heart rate, blood pressure, and oxygen saturations dropped suddenly. They gave him some albumin and turned his pacer wires on to keep his heart rate up.

At first, no one knew exactly what caused this, but it now seems that his blood vessels were dry. The reason why this happened is because his TPN and lipids (IV nutrition) had to be turned off because they were not compatible with some of the other meds they had to administer through his PICC line. Normally, you could have the TPN and lipids run through another line, but Will only has one point of access (PICC line). Since he is a cardiac baby, it is extremely difficult to get a line in him... not to mention that he can't have lines in certain areas because of the different issues he has (trach, VP shunt, clots, infections, etc.).

So, for now he seems stable. It is possible that this will happen if he gets "dry" again. Usually they can correct this in a hurry. In the meantime, his diuretic drug, lasix, has been turned down to only 1 dose a day so that his urine output slows, which has worked thus far.

We'll just have to wait & see... something that we have become quite familiar with.

Monday, February 27th

2006-02-27T22:20:00.000-06:00

Will had a decent day... he remained stable. Not much really changed.

He hasn't had anymore bloody stool, and he seems to feel better than he did over the weekend. He had a couple of small spells this evening where he was very mad... it seemed to me that he was suffering from withdrawl since his morphine drip has been turned off. They have been giving him doses here and there, especially when they do his chest dressing changes, which are every 4 hours! They have to do it so often because the docs want his incision to stay as dry as possible so it can heal. The bad part about doing so many dressing changes is that his skin is raw where the bandages are taped down and removed over and over again.

Will's hermadocrite dipped down again, so he required another blood transfusion today. This wasn't that big of a deal. In fact, the pediatric general surgical team said they won't come back to check up on him unless something happens and he isn't stable anymore.

The docs also had to increase his ventilator rate from 30 to 34 because his CO2 level had increased when they did a blood gas this evening. This should be easily weaned down when Will is feeling better.

Sunday 2nd Update

2006-02-26T22:39:00.000-06:00

Will & Wyatt "Heart Buddies"

Checking Each Other Out

Wyatt: "Hey, I Remember This Place!"

Will & Cass Lowrie

Lori & Wyatt

We had a wonderful visit with the Lowries this afternoon. Wyatt looks great!

Will is still stable... nothing new to report.

Sunday, February 26th

2006-02-26T07:57:00.000-06:00

Will remained stable overnight.

Pediatric surgery came by again this morning and recommended that Will have abdominal x-rays done everyday; remain off feeds for 10-14 days; keep all his meds going through IV (instead of orally).

He was awake for a little bit this morning, he was in a good mood until he had another bloody diaper and his trach needed to be suctioned. After that, he fell asleep.

On a good note, we look forward to seeing Lori, Cass, and Wyatt Lowrie who are coming to visit us this afternoon. I can't wait to see them!

Saturday 2nd Update

2006-02-25T20:21:00.000-06:00

Something serious is definitely going on with Will's digestive system. It could be his colon or his intestines, but they don't know exactly what. It could be an infection; it could be that he has bowel shock - meaning that parts of his gut may not be getting sufficient blood flow.

When the general pediatric surgical fellow examined Will's anus with his finger, he had more blood come out. He also said that Will's stomach felt more distended. The surgeon decided to put an N-G tube through Will's nose and into his stomach. This tube is suctioning anything that may be in his stomach. Will's feeding tube is draining as well.

The surgeon also said that it will be another 14 days or so before Will can be started back on his feeds again.

The key for Will right now is to stay stable. So far he has done so.

The surgeon said that Will has been through a lot, but with him being such a fragile patient, a serious infection could be "catastrophic" for him. Not something I want to hear. We're going to "wait & see" what happens. I'll keep updating as I get new information.

Saturday, February 25th

2006-02-25T17:20:00.000-06:00

Will is experiencing some problems this afternoon, and the docs don't seem to know what's causing them.

A little after 4:00 this afternoon his blood pressure and oxygen saturations dropped suddenly for no apparent reason. When they did a blood gas, it showed that his hermadocrit was low (27) so they decided to give him some blood, in addition to some albumin. They also stopped his feeds. It seemed to work and his blood pressure and sats went up. They also did a chest and an abdominal x-ray, and neither showed any changes.

Just a few minutes ago, his nurse was changing his diaper, and Will had a very large bloody stool. This explains why his blood pressure and sats were low, but they don't know what is going on.

Right now, they have turned his g-tube (feeding tube) to suction, so his stomach will be empty and can rest. They have just run some blood work, so hopefully they can find out really soon what is going on.

I pray that this is nothing too serious, and can be corrected quickly.

I'll keep you updated!!

Friday, February 24th

2006-02-24T08:23:00.000-06:00

Will has had a minor setback.

His incision on his chest is infected. The infection, like Dr. Bove had feared, came from his trach. It's nearly impossible to prevent this because the incision is so close to his trach site. The attending docs said they want this infection completely cleared before he is sent back to Vandy... they want to make sure this infection doesn't get worse and get in his bloodstream or cause Will any life-threatening problems.

They have put Will on some powerful antiobiotics, but it could take up to 10 days before it is cleared. So, at the very earliest we will be back in Nashville the week after next.

Thursday, February 23rd

2006-02-23T09:04:00.000-06:00

Watching Mommy Make Faces

Telling Us What He Thinks

Will has developed quite a personality. Over the past couple of days he has been "talking" to me. He moves his mouth and his tongue like he has something to say.

Will's favorite thing to do is watch Mommy make all kinds of silly faces. He just smiles and smiles. Then, for the first time yesterday Will laughed! It was so special... I just wish Daddy could have seen it.

Prayer Request for Jorianna Nichols & Family

2006-02-22T17:47:00.000-06:00

Will is doing fine, but one of our friends that we have come to know and love, is not.

Some of you might recall Josh & I telling you about the miracle baby at the University of Michigan, Jorianna Nichols. She is 10 days older than Will and has been at U of M's ped's cardio-thoracic ICU since she was born. She had a heart defect that has never been seen before, and Dr. Bove managed somehow to "fix" her. Dr. Bove had even said that it was a "higher power" that saved her, not him. Since this surgery, Jorianna had many bumps in the road, and went through a lot of the same things that Will has.

Over the past few months, Jorianna's mother, Ruth, and I have become quite close. Ruth was in the waiting room with us the day of Will's surgery, crying and praying with us, asking that God please restart Will's heart.

Jorianna was supposed to go home on Monday and had been in U of M's stable ventilator unit. Overnight, she became septic (developed some sort of infection) which made her blood pressure drop, and she was urgently taken back into the ICU.

Unfortunately, Jorianna could not win this battle, and went to be with Jesus this afternoon. She was surrounded by her loving family. Her parents are on their way home right now to Grand Rapids, Michigan to tell their two children that she has passed away.

Her mother is going to let me know the funeral arrangements in the next few days. I hope I will be able to make it and show her the support that she has given to us.

Tuesday 2nd Update

2006-02-21T18:01:00.000-06:00

Will had a good day. Nothing new to report really.

During rounds this evening, the docs said they thought Will would be ready to be transfered back to Vandy next week. They will discuss this further on Friday when Dr. Bove gets back in town from a trip. So, as long as Will continues to make progress and Dr. Bove is ok with it, we'll be back in Nashville really soon!! Yeah!!

I'll let you know when I get details!!

Tuesday, February 21st

2006-02-21T09:52:00.000-06:00

Will is sleeping soundly this morning. He looks like an angel.

Will's blood gases weren't looking all that great early this morning, so they had to go up on some of his ventilator settings this morning... his rate went from 24 to 30. After the changes were made, another blood gas came back and it was perfect... in fact, it is the best one he has ever had.

Other than that, not much to report. Once his pacer wires come out the neurology team wants an MRI done to get a good look at Will's brain anatomy, and to see if any intervention is needed with his VP shunt.

I'll keep you posteed on his progress!

Monday 2nd Update

2006-02-20T15:24:00.000-06:00

I just talked with the neurology team and they said that the EEG this morning showed no seizures!!!

They have increased his dosage of phenobarbital, and they'll keep a close eye on him. Praise God!!

Other than that, Will is still doing well. He is off of his milrinone drip, and he is still on a low dose of dopamine. They have removed his foley catheder and one of his picc-lines. The fluid coming out of his remaining chest tube has slowed down quite a bit, so hopefully it will come out soon as well.

I think that I am going to have a head full of gray hair by the time I'm 30! I found 6 grey hairs this morning as I combed it. I guess that's better than Josh... he won't have any hair!!

Monday Update

2006-02-20T12:12:00.000-06:00

The preliminary results of Will's cranial ultrasound shows no changes. The results of his EEG may not come back as late as 4 o'clock this afternoon.

I'll keep you posted as I get more information!

Monday, February 20th

2006-02-20T11:05:00.000-06:00

Unfortunately, Will has not had a good morning.

Around 7 am he had a seizure. His right arm and hand twitched for about a minute. This happened again about an hour later. The doctors aren't completely sure it was a seizure... it could have been a normal newborn movement. But, with his history of seizures, brain bleed, and swelling they performed an EEG and a cranial ultrasound. It will be a little while before I get the results.

I can't remember if I had posted anything about this on the blog before surgery, but neurology did a cranial ultrasound before his surgery to get a baseline in case he had any neuro problems post-op. They did find that his VP shunt isn't working as well as it should. A small part of one of his ventricles is still swollen and compressed. This shouldn't occur if the shunt is working properly. Unfortunately, they can't tap his reservior on the top of his head to get rid of this extra fluid because the catheder doesn't go down far enough into his brain to get it out. So, I was already prepared for another neurosurgery to repair or replace his VP shunt. This small bit of swelling could have caused an irritation in his brain, which could have led to his seizures.

It is also possible that his phenobarbital (anti-seizure med.) is not at a therapeutic level, which could have caused him to have a seizure.

The docs also told me that his blood pressure did not change during his "seizures," which could suggest that this was not a seizure as well.

So, right now I'm trying to stay positive. This may not even be something serious. But, even if it is, this is something that God's Will can't handle.

Sunday, February 19th

2006-02-19T18:58:00.000-06:00

Will is still moving right along!

A cardiac surgical fellow took out one of his chest tubes this morning. Will's dopamine drip has been weaned down some more... he should be off it soon. He is also down on his ventilator settings. Couldn't ask for anything more. I'm so proud of him!!

Saturday, February 18th

2006-02-18T20:01:00.000-06:00

Check out Will's hair! A bad case of bed hair!

Will had another great day. His epi and vasopressin (blood pressure meds.) have been turned off, and now they are weaning his dopamine and milrinone. His ventilator settings are down as well.

Will was wide awake all day today. He liked it whenever Mommy made silly faces at him. His nurse commented that she had never seen a baby respond to his mother (or anyone for that matter) as well as Will does with me. If I am next to him he just stares and stares at me (unless his monitor screen catches his eye). Now that he is more alert, he is starting to look at me like he wants me to hold him. He got very spoiled when I started to hold him all the time. You can't make a baby understand that he has too many lines and tubes coming out of him to be held. Hopefully, it won't be TOO much longer... it's so hard to show restraint, especially when he looks as cute as he did today.

Friday, February 17th

2006-02-17T20:59:00.000-06:00

So serious! Will was like this all day today.

Will did great today. The surgeon was able to complete his chest skin closure this evening. Thankfully, Will didn't need a skin graft. He tolerated it just fine! Now, we can work on getting him stable for transfer to Vandy! They will need to remove two chest tubes and pacer wires, as well as wean his ventilator settings and get him off of his pressure meds. There's no way to know for sure how long this will take, but hopefully not any longer than 2 weeks.

I'll keep you posted on his progress!

Sweet Baby Will

2006-02-16T18:09:00.000-06:00

Nothing to new to report... just thought we'd share these pics of Will that we took this afternoon.

Thursday, February 16th

2006-02-16T09:55:00.000-06:00

Will is doing better this morning. He has been awake for a little bit, and his blood pressure is back to where it needs to be.

I talked with one of the cardiac surgical fellows, and she said that she wants to complete Will's skin closure tomorrow. When I asked her when she thought they would try to close his sternum, her answer surprised me. She said that they were going to leave his sternum open. She says it is rare for them to do so, but in Will's case they have to. She said that when he comes back for surgery in a few years to replace his conduit, they will try to close it then. She said that leaving his sternum open should not cause him any problems; he will have to avoid contact sports for sure.

It does make me nervous that the only thing protecting his heart is some tissue and skin, but they have reassured me that he will be fine.

The good thing about it is that we won't be here as long as I had predicted. Once Will is off of his blood pressure meds and seems stable from a cardiac standpoint, we can be transferred back to Vandy so we can prepare to go home!! What a day that will be! My estimate is that it will be another 2 weeks at least before he will be ready to transfer... if he has no complications. And knowing Will, it's definitely a possibility!

Wednesday 2nd Update

2006-02-15T21:13:00.000-06:00

Will hasn't done as well as I would have liked today. He is in somewhat stable condition... he is sort of walking a fine line at the moment.

He still hasn't come out of his sedation from his trip to the OR, which is bothersome to me, but the docs told me not to worry. (easy for them to say) His urine output has slowed down, but this is to be expected since his chest has been closed a little bit.

The doctors are watching his blood pressure very closely. It is a little lower than they like, and when they try to up his blood pressure medicine dosages or increase his volume, it doesn't make a difference. They can't seem to figure out why this is going on, but they aren't too concerned. Typical Will if you ask me. I think he likes being a challenge!

He will probably be fine in a couple of hours. It takes him longer to recover than most babies.

I'll continue to keep everyone updated!

Wednesday, February 15th

2006-02-15T11:04:00.000-06:00

Will just came back from the OR. It was a long morning.

The surgeons attempted to do just a skin closure, but they quickly realized that he couldn't tolerate it. His lungs couldn't ventilate properly with that much pressure. So, after about 20 minutes they opened up the middle part of his incision to relieve this pressure.

As I expected, Will is back to square one again with his blood pressure medicines. He is on high dosages of epi, dopamine, vassopressin, milrinone, and morphine. If everything goes well, it will probably take another week or so to wean off these medicines.

I haven't been able to talk to Dr. Bove yet, as he has 2 more surgical cases today. When I talk to him later, I should have a better idea of what we should expect for Will.

Will is very fragile right now and we just hope he remains stable over the next several hours.

I'll continue to keep you posted!

2nd Valentine's Day Update

2006-02-14T18:44:00.000-06:00

Will's First Valentine's Day

Our Special Valentine

Will is scheduled to go to the OR tomorrow for removal of his chest stints and a possible chest closure. They think he will be first case... around 7-7:30 a.m. But, you never know, it could be moved to a later time. It should only take an hour. We'll let you know how it goes!

Tuesday, Valentine's Day

2006-02-14T12:41:00.000-06:00

Will is doing great!!

He is almost down to his dry weight. He looks so skinny compared to what he looked like over the weekend! He is off of his epi drip... he is also down on his dosages for his milrinone and morphine drips.

Dr. Bove stopped by earlier and said that he is going to take Will down to the OR later this week to see about closing his chest. While in the OR, Bove will be able to get a better look inside his chest to see what is Will's best option. He will either do a skin closure, which will leave the sternum open, or, Bove will close his chest completely. Bove's biggest concern with closing Will's chest completely is that he will get sick again and require a lot of support.

Will is a brand new baby since the surgery. He looks better than ever. It's so nice to have a pink baby for Valentine's Day!! We are so blessed.

Monday, February 13th

2006-02-13T20:03:00.000-06:00

Will is still making progress!

He is off of his vasopressin drip, and he is almost off of his epi drip. They have also weaned his milrinone, dopamine, and morphine drips. His ventilator settings are the same, but that's fine. He also lost a pound of fluid over a 24 hour period. This is also a big achievement!! Go Will go!

Currently, Will has 2 tubes that are keeping his chest open. Dr. Bove is thinking about removing these tubes later this week and see how he does without them. The main concern is how much pressure his chest wall will put on his conduit and his heart once these tubes are removed. Once they see how he does, they can think about what they should do about closing his chest. They may have to do a tissue/skin graft over the opening until they feel his chest can be closed safely. The main reason they would do this is to prevent an infection, while giving his body time to grow so he can tolerate a chest closure.

Sunday, February 12th

2006-02-12T21:05:00.000-06:00

Will has had a good weekend. He is stable and continuing to make progress.

His ventilator rate is down to 28 and his oxygen is down to 40%. They have also been able to slowly wean on his medicines. This is such a slow process, but every small improvement is a big victory for Will.

Will has been having problems with effusion (fluid) outside of his right lung. The chest tubes usually help with removing this extra fluid, but for some reason his chest tubes didn't to the job. This is a concern because it can cause him to have trouble ventilating properly. So, this morning a cardiac surgeon fellow had to go into Will's chest and suction out the extra fluid and redo one of his chest tubes (he has three). The procedure went well and it seemed to do the trick.

Other than that, he is making some headway on getting all the extra fluids off. This takes time as well. We have to be patient!

I'll continue to keep you posted as always!

Friday 2nd Update

2006-02-10T21:47:00.000-06:00

Josh & I are on are way back to Ronald McDonald, but we wanted to let you know how Will is doing this evening.

He is continuing to make small strides. His ventilator rate is down to 38 and his oxygen is down to 70%. They have also weaned his epi (pressure med.) down a little bit as well. His urine output is also improving, which is very important because he needs to get all of those fluids out of his body!

He had an EEG and a head ultrasound this afternoon to make sure that he isn't having any seizures like he did with his 1st surgery and that his brain looks ok. We're happy to report that his brain looks good with no seizures!!

He's been awake most of the day and has been happy. He finally went to sleep this evening and he is resting peacefully. He does have a bad case of bed hair though... it is still a little sticky from the glue they put in his hair for his EEG, and it's standing straight up!!

We'll continue to keep you posted as always!!

Friday, February 10th

2006-02-10T10:18:00.000-06:00

Will did very well last night considering what he's been through.

A few minutes ago, I was sitting at Will's bedside holding his hand, when Dr. Bove came in from behind me and gave me a hug. (This took me aback because to me, it seemed out of character for him to do that.) He asked how we were holding up, and I said that we were hanging in there.

Dr. Bove said that Will was "a tough cookie." He said he hated to continue to use the word "surprisingly," but he never expected to see Will not only make it off the bypass machine, but to have a relatively stable night. Will had his ups and downs, but he did very well considering what he's been through.

They were able to make progress on all of his medicines, except for milrinone because it helps keep the heart from working too hard. They were also able to make headway on his ventilator... rate down from 50 to 46 and oxygen down to 80% from 100%.

Will has been wide awake most of the morning. He seems happy; not in any pain.

What happened to Will last night was nothing short of a miracle. God continues to hear our prayers. Will is truly "God's Will."

Thank you to everyone for praying. Keep the faith!!

Thursday 5th Update

2006-02-09T19:56:00.000-06:00

What a long day it has been... I feel like I have been run over by a truck.

Will made it off of the bypass machine and into the ICU... this surprised everybody, even Dr. Bove. Nobody expected him to make it. Bove said that Will was indeed a fighter!

Dr. Bove said that when he opened Will's chest, his heart muscle was thick and full of fluid. He said that his pressures were higher than what he had anticipated. Bove also found that his pulmonary artery was a bit small, so he made a patch (which did require him to put Will on circulatory arrest... but not for very long; nothing like the Norwood). He said that the artery is still small, but over time it will get bigger. He said that the Rastelli repair itself went very well. The echo afterwards showed that the heart was functioning well.

The pressures inside his heart are at a good level for him. And, amazingly, Will didn't need the pacemaker for very long... he came up without it.

We are still not out of the woods by any means. He is very critical. The next 12, 24, 48 hours will be very telling in how (or if) he recovers. Will is on extremely high levels (even maxed out in some cases) on several medications (epi, vassopressin, milrinone, dopamine, fentnyl). He was also bleeding out a little more than he should, but the blood flow has decreased over the past few minutes.

Dr. Bove had to leave his chest open due to the pressures and mainly because of the position of his conduit. He even placed a tube across his chest to make sure that his chest does not close a little bit on it's own, because even the smallest bit of pressure could cause problems with his conduit. After five or seven days, Dr. Bove (or one of his plastic surgeon colleagues) will take some of Will's tissues to help close his chest up a little. This is sort of a temporary measure to protect his chest opening from getting infected by his trach. It will be a good while we think before Will can tolerate a normal chest closure... even then, Dr. Bove will have to take him down to the OR to do the procedure. (They normally due this at the bedside.)

Josh & I are sleeping in a sleeping room tonight next to the ICU so we will be in close proximity in case he codes. We have asked that they not put him on ECMO (a means of life support) in case this happens. With his history of a brain bleed, ECMO would more than likely cause severe brain damage, and just delay the inevitable.

Will is the strongest baby I have ever known. When I just went back to see him, I held his hand and kissed his forehead. He immediately opened his eyes and looked at me, which is surprising considering all of the sedation meds he is on. Seeing him do that is so reassuring... He is giving it all he has!!

I'll continue to keep you posted.

Thursday 4th Update

2006-02-09T14:41:00.000-06:00

We have a little hope.

The next time they came in after the last update they said that Will was not coming off the bypass machine and that they would give it another 30 minutes, before trying to keep him alive long enough so that he could pass away in my arms.

An hour later they came in and said that they have been able to slowly wean him off the bypass machine, and now he is on a quarter flow. They also put in a pacemaker to help speed up his heart. They will try to slowly wean him off the rest of the flow on bypass and take him up to the ICU.

We hope to hear from them soon. We'll let you know what happens.

Thursday 3rd Update

2006-02-09T12:48:00.000-06:00

We just got word that Bove completed the patch between the right and left ventricle. He has moved on to placing the conduit from the right ventricle to the pulmonary artery. Bove still feels that it doesn't look good for him.

When Bove completes the operation, he will leave his chest open as he takes Will off of the heart & lung bypass machine. They will observe the heart in action to see if the procedure was successful and if he needs to make any changes to make his heart work better.

We should hear back in the next hour/hour and a half.

Keep the prayers going!!

Thursday 2nd Update

2006-02-09T11:49:00.000-06:00

We just got word that Dr. Bove is not very hopeful. He doesn't think the anatomy of Will's heart is going to take this procedure.

Please pray for him.

Thursday, February 9th

2006-02-09T09:56:00.000-06:00

We just got word that they opened Will's chest and are now starting his surgery. So far so good!

They will update us in an hour!

2006-02-08T21:16:00.000-06:00

Mommy kisses Will goodnight

Mommy & Will

"Hey! You're not Mommy!"

Just thought I'd share these pics of our special time with Will this evening. They let us hold him one last time before surgery. He was so happy. We cherish every moment with our little guy!!

Keep checking the site throughout the day tomorrow... I will be making several updates!

Wednesday, February 8th

2006-02-08T12:12:00.000-06:00

We just talked to Dr. Bove, and this is what he had to say:

The surgery will be tomorrow, and it will start sometime around 9 or 10 in the morning. This will be his only case, as this procedure will take several hours.

He has decided to do the Rastelli Procedure. As you may recall, he is going to insert a conduit from the right ventricle to the pulmonary artery, patch the hole between his left and right ventricle, and remove his B-T shunt.

Dr. Bove is going to use a cow's jugular vein for the conduit. This is a new type of conduit that Michigan started to use... it has been used in the U.K. with fabulous results. This conduit has not been approved by the FDA yet... it is currently part of a study. Bove said that he has used it on around 80 patients thus far, and all seem to be doing very well with it. This conduit will have to be replaced in about 3 years.

I told Dr. Bove that one of my biggest conerns about Will's surgery was him having another brain bleed or stroke. I asked him what his thoughts were, and it kind of surprised me when he said that he didn't anticipate that it would be a problem. He said that this procedure does not require Will to be in circulatory arrest like his first surgery, the Norwood. He said that the Rastelli will not be as hard on his brain, and he thinks Will is healthier (and bigger) than he was for his Norwood.

Overall, Bove was optimistic about Will's procedure. This totally blew us away. Obviously, there are no guarantees, and disaster is only a breath away.

These are some of the possible complications:

1. (low-risk) the conduit isn't big enough and blood is blocked from getting through
2. (higher-risk) Will bleeds out during the surgery
3. Infection after the procedure due to his trach.

(Will's chest may have to be left open after the procedure, either because the pressures inside his chest are too high, or the placement of the conduit makes it too risky. If it is left open for a few days, it is quite possible with the trach being so close to the incision that germs get in the chest, causing an infection.)

4. stroke or brain bleed
5. nerve damage
6. death

The first 24 hours after surgery will be the most telling of how successful the procedure is. What we can't wait to see is a pink baby! He will actually have oxygen saturations in the upper 90's to 100!! No more blue/cold hands and feet!

Tuesday, February 7th

2006-02-07T20:10:00.000-06:00

We finally got to speak with Dr. Bove. We didn't speak to him until late this evening... he had a surgery today that took 8 hours!! He told us that even though he hasn't had an opportunity to really look over Will's heart cath and echos, he is working him into his surgical schedule this Thursday. He said that he would speak to us tomorrow evening about what he plans to do for surgery.

Will had a good day today. He was awake most of the time. He seemed to be really happy this afternoon. He smiled while mommy held a pacifier in his mouth. (He doesn't really know how to suck on it yet, but he does like to chew on it)

I'll let you know what the plan is after I talk to Dr. Bove!

Monday 2nd Update

2006-02-06T20:03:00.000-06:00

No news yet! Dr. Bove had a long day today and he hasn't had an opportunity to sit down and really analyze Will's heart cath and heart echos. I know he went to look at them this evening, and I prefer that he takes his time to think about what is best for Will since this is not a cut & dry case. You can't rush it!

I'm pretty sure we'll talk to him tomorrow. We'll keep you posted as always!

Monday, February 6th

2006-02-06T08:59:00.000-06:00

Will is doing better.

They started him on Dopamine, which helped him get better blood flow to his kidney, which helped him pee! He has already gotten a lot of fluid off, and as of last night he weighed 9 pounds, 9 ounces.

Right now they are concentrating on weaning his ventilator settings and getting his blood sugar levels in order before surgery. They are also going to slowly start his feeds back again.

Dr. Bove has two surgeries today. We hope to speak to him later this afternoon. We do know that he has no surgeries scheduled for tomorrow, so it could be less than 24 hours until Will goes into surgery.

We'll let you know as soon as we hear something!

Saturday, February 4th

2006-02-04T16:34:00.000-06:00

Will is not doing as well as I would like.

This morning his blood gasses were not very good, so they had to go up to a rate of 44 on his ventilator before he would get where he needed to be.

Will is also struggling with his kidney function. They always want him to pee out more fluids than what he takes in. But, for some reason he isn't. His weight is up to a whopping 10 pounds, 3 ounces. I suspect that his dry weight is close to 9 pounds. That is a lot of fluid for a little guy like Will! His eyes are so swollen, and his belly is much bigger than usual. The doctors have addressed this issue by giving diurel in addition to lasix, every 6 hours. They have also given him a blood product (albumin??) that is supposed to help remove fluids from the tissues and put them into the bloodstream, helping him pee the extra fluids out.

I worry about his kidney a lot. This is not good for someone who is about to go into heart surgery. His kidney will take a big hit. I'm sure they will want to insert a PD cath into his belly again during his heart surgery, so they can dialyze him if they need to.

Friday, February 3rd

2006-02-03T14:02:00.000-06:00

Will is doing okay. He was very alert this morning... if he wasn't looking at mommy, he was staring above at his baby warmer, which has little mirrors that are great for babies to gaze at.

His hermadocrite is a little lower than they like, so they are giving him a blood transfusion. They think that giving him blood will improve his numbers on his blood gas, and then they will be able to wean him on his ventilator rate, which is still 40.

Pain Management did a consult earlier, and they decided to put Will on a morphine IV drip. Since he is on morphine, they are going to stop his methadone. They are also going to give him ativan (pain/sedative med.) as needed.

The doctors are holding their weekly conference this afternoon. If Bove's schedule permits, he will join them. They hope to come up with a plan for Baby Will.

We're staying in my Dad's hotel room at The Residence Inn until a room comes up at Ronald McDonald House. With the superbowl going on this weekend, we really have no idea when that will be.

I'll let you know if we hear anything!

Thursday, February 2nd

2006-02-02T19:17:00.000-06:00

We have finally arrived in Michigan!

Will did not tolerate his transport very well. He had a couple of spells where his oxygen saturations dropped, and his flight nurse had to administer some sedation during the flight to help.

When he arrived in Michigan they had to do some "tweaking" with his ventilator settings because his blood gas was not very good. They went up on his rate from 24 to 40. This should only be temporary... he should do better once he is better situated.

It was so weird for us being back at Michigan. It feels like it was so long ago that we were here, but it has only been 2 months! It was very reassuring to see the nurses and docs that we got to know so well. We are in such great hands!

Now it seems that the docs don't know for sure that they want to do the Rastelli Repair. They are still considering 3 options:

1. Repeat the Norwood Procedure and replace his shunt

2. Do the Glenn Procedure (2nd stage surgical procedure for hypoplastic left heart)

3. Do the Rastelli Repair

Each has it's own benefits and risks. I think the doctors' biggest fear about doing either the Glenn or the Rastelli is that both require Will to be on the heart lung bypass machine for a long period of time, which puts him at a high risk of having another brain bleed. If they did a repeat Norwood, it could buy him more time and would require very little time on the bypass machine.

The Michigan docs are not very convinced that the pressure reading of 22 from the heart cath is accurate. They think that the blood pressure medicines he was on at the time may have increased his pressure. Still, there is no way to know for sure. I know Dr. Bove can do a pressure reading once he opens Will's chest, but I don't know if he will want to wait until then to make the call on what to do. If the pressures are reasonable, it may be better for him to do the Glenn.

Dr. Bove has a jammed packed surgery schedule tomorrow, so we probably won't have an opportunity to speak with him until Monday. In the meantime, the other docs are going to watch him closely and continue to discuss his options.

Once we talk to Dr. Bove we should have a better idea of what is best for Will at this point. We'll let you know!

Sweet Baby Will

2006-02-01T21:51:00.000-06:00

As I tried to take Will's picture this afternoon, his attention quickly shifted to his nurse when she walked up to his bed. He learned a long time ago to watch them closely... you never know that they might do!
But, in all seriousness, we have been so blessed to have such wonderful nurses! I don't know what we would do without them.

Wednesday, February 1st

2006-02-01T11:33:00.000-06:00

I just noticed that on yesterday's post I thought it was Wednesday instead of Tuesday. It just goes to show you how easy it is to lose track of time...

Anyway, I just spoke to Dr. Parra and Dr. Moore, and they let me know that Michigan called to tell them that a bed space is now available in the pediatric cardio-thoracic intensive care unit. Vandy lifeflight will pick Will up at the hospital at 7:00 a.m. tomorrow morning to take him to the airport.

The earliest we could schedule our flight is for 9:30 a.m., so Will is probably going to beat us there.

Dr. Parra said that it will more than likely be early next week when Dr. Bove does Will's surgery.

We'll keep you posted!

Wednesday, January 31st

2006-01-31T19:16:00.000-06:00

Will has had a good day today. They have started him on Pedialyte and will begin his formula feedings tomorrow. Will hasn't needed any extra sedation, so his docs decided to begin weaning him slowly on his versed IV drip.

We spoke to Dr. Parra a little while ago, and he said that Dr. Moore (an attending cardiologist) called Michigan today with all of the necessary information for them to admit Will. Vandy's lifeflight has already been lined up to take him up there. Now we are waiting for Michigan to get back to us when a bed space is available. Hopefully something will come up in the morning.

We'll let you know!

God's Will

2006-01-30T23:20:00.000-06:00

I took these pictures tonight before we left to go home. He was sleeping so peacefully!

Monday 2nd Update

2006-01-30T18:39:00.000-06:00

Will got back from his CT scan a little while ago, and he was a good boy. Luckily, the pediatric radiologist hadn't left yet, and we were able to get the results. The doctor said that his belly looked much better, although they would like to see his fluid and edema (swelling) go down. But, most importantly, he is ok to be transferred to U of M.

Dr. Parra is going to call Michigan with the results first thing in the morning rather than tonight because it is an hour ahead there, and none of their day people are on right now.

So, we hope that everything will be squared away for us tomorrow to have Will lifeflighted up to U of M on Wednesday.

Monday, January 30th

2006-01-30T14:32:00.000-06:00

Will had a good weekend. He is off Dopamine (pressure med.)... all he is on now is Versed. They give him methadone every couple of hours so he doesn't suffer from withdrawl.

We still haven't received any info. on what the plans are for Will's transport. Vandy is doing a follow up abdominal CT scan to make sure his belly is ok and that it is ok for them to start his feeds back again.

Once Dr. Parra hears back from radiology about the results of the CT, he will call Michigan about when to send him up.

The CT results probably won't come back in time this evening for Dr. Parra to call them, so it's most likely that Wednesday will be the day that Will is lifeflighted up to Michigan. We'll let you know as soon as we hear something!

Friday 2nd Update

2006-01-27T17:36:00.000-06:00

Well, we just spoke to Dr. Parra about his conversation with the U of M doctors about Will.

Dr. Bove will be out of town next week until Wednesday. So, they plan on lifeflighting Will to Michigan either Tuesday or Wednesday next week. The surgery will either be late next week or early the following week. Michigan is going to call Vandy Monday morning to firm up the details.

They plan to do The Rastelli Procedure for surgery. This is what they plan to do:

1. Remove his B-T shunt. (This is currently the passageway that the heart uses to pump blood the pulmonary artery and to the lungs.)

2. Patch the hole (Ventricular Septal Defect, or VSD) between his left and right ventricle... they will do it so the aorta exits from his left ventricle instead of his right ventricle as it is now. Luckily his right ventricle is big enough that they can patch it this way... the right ventricle will be smaller, but still a good enough size to function properly.

3. Install a conduit that will run from his right ventricle into his pulmonary artery. (This will basically replace the B-T shunt.)

4. Cut open the part of the right pulmonary artery that is currently narrow and reattach it to make it a proper size.

I hope the diagrams (above) that I drew help you understand what I'm talking about.

This is going to be a very high risk surgery. There is no way to really know how it's going to turn out.

The downside to this type of surgical repair is that he will need more surgeries than he would if we had approached the traditional hypoplastic left heart 3 stage surgical repair. Unfortunately, the conduit that they will install will only last 5-10 years, because it cannot grow with him and will require replacement. He will need surgeries around 5, 10, and 15 years of age. But, Dr. Parra said that better technologies could be developed over the next 10 years, and who knows what they could come up with?

We'll let you know how things progress over the weekend!

Friday, January 27th

2006-01-27T09:48:00.000-06:00

Will is doing great this morning. In fact, his ventilator settings are lower than I have seen in about a month. His breaths per minute rate is down to 22 from 32. His oxygen is down to 40 % from 80-90%. His tidal volume is down to 40 from 65. His sats are great! It's hard to believe that this is the same baby! I have a feeling the larger trach being put in yesterday made all the difference.

Since Will is doing good at the moment, they don't want to "rock the boat" and make any changes to his dopamine and versed doses.

He is still very sedated, but he wakes up from time to time. We want him to rest and keep him from getting agitated. The only time he seems to get upset is when he is being suctioned or if you touch his belly, which is really tender to him right now.

They are still keeping an eye on his stomach, which they think is fine for now.

I will let you know when we hear from Michigan, which will hopefully be soon!!

Thursday 3rd Update

2006-01-26T19:06:00.000-06:00

We just got the results of Will's contrast CT scan. It turns out his liver is ok, with no signs of bleeding. But, they did find that his stomach was not getting enough profusion (blood flow). His doctors are a little stumped... they don't know what caused it. They think it is possible that the vasopressin he was on did it. The good thing is that the doctors seem to be underwhelmed about it. They are just going to keep a close eye on it and hope it fixes itself. In the meantime, they have stopped his feeds and oral medications in order to give his stomach a break.

I also spoke with Will's case manager from his insurance company. She said that someone contacted her from Vandy about the possibility of transferring him to Michigan, and she said not to worry that they would cover it. She was very concerned about Will (and us), and asked to call if there is anything she can do. I didn't know that charismatic insurance company representatives actually existed! I even gave her this website address so she could keep up with Will's status. Isn't that wonderful?!

The Vandy docs held their weekly conference this morning and discussed Will's surgical options. Apparently, there are a couple of ways they can do his repair. They can use a conduit and/or do an arterial switch, but that would require heart surgeries every couple of years for the rest of his life, because the conduits are only good for about 5-10 years. They could also put in another shunt (giving him 2) and give him time to grow and see if the pressures in his heart improve. I'm not really sure what route we will take. I have complete confidence in Dr. Bove, so more than likely we will go with what he suggests.

I can hardly wait to hear from Michigan! Hopefully we'll know something tomorrow afternoon!

Thursday 2nd Update

2006-01-26T14:25:00.000-06:00

The pic-team was successful in getting a pic-line in the arm that already has the arterial line.

Will's doctor wants to send him downstairs again for a CT scan again this afternoon, only this time they will use a contrast. This will allow them to better see his liver and any bleeding that may be occuring.

We also decided that Will needed a bigger trach, so I changed it out with the next larger size. He seems to be doing fine with it.

That's all I know for the moment. I will continue to keep you posted!

Thursday, January 26th

2006-01-26T10:53:00.000-06:00

Here's the latest:

Will's liver may be bleeding out a little. His CT scan yesterday didn't show any blood, but it did show fluid around it. His blood work and tight tummy makes the doctor think that it is bleeding. His hermadocrite level in his blood was low this morning and he needed a blood transfusion. The doctor thinks that when they restarted his aspirin and blood thinner yesterday, it may have caused him to bleed out a little. She doesn't think it is going to cause him any major problems... they stopped the aspirin and blood thinner, and hopefully the bleeding will just take care of itself.

Needing blood brought up Will's IV access issue again. They went ahead and stopped his dopamine and versed in his pic-line for about 5 minutes and gave him his blood through his pic. He seemed to do ok, but they really need to get him another IV line. So, the pic-team was called in, and they are either going to put in another pic-line in his arm with the arterial line or they will try to turn his single access pic-line into a double access pic-line.

We're in the waiting room right now. Hopefully it won't be too long. I'll let you know how it goes!

Wednesday 4th Update

2006-01-25T23:24:00.000-06:00

If he isn't being held, he loves to lounge in his boppy or sleep in his bouncy seat!

Just hanging out!

This picture of Will was taken earlier this afternoon. He was actually snoring!!
I think his trach may be getting a little small. You can hear his voice through it sometimes.

I just talked to Will's nurse, Mindy, to get an update. She said that he's doing good tonight. She was able to wean him some on his dopamine and that he hasn't required any extra sedation. That's my boy! Keep it up Will!

Wednesday 3rd Update

2006-01-25T17:29:00.000-06:00

We just talked to Dr. Parra a little while ago. He talked with Dr. Bove about Will. Bove should receive the CD with the pictures of Will's heart cath tomorrow, and Bove plans on showing it to the U of M's congenital heart staff during their weekly conference on Friday afternoon. This is when they will discuss his options.

Hopefully, Dr. Parra will hear from Dr. Bove shortly after the conference Friday evening. Otherwise, Dr. Parra said it could be as long as Monday morning before we hear from Michigan.

Waiting for them to get back to us is absolute agony. We just want to get up there and get the surgery over with. We are trying to be as patient as possible, but it is frustrating.

We'll let you know what they say as soon as we know!

Wednesday 2nd Update

2006-01-25T12:34:00.000-06:00

Will is doing well. He just got back from his CT scan, where they took a look at both his head and abdomen, to make sure his liver is ok after the heart cath. We should hear the results late this afternoon.

Will's strength never ceases to amaze us. They have been able to wean his oxygen from 80% to 55%. They have also made great strides in weaning his dopamine (blood pressure med.). His feeds have started back again, and he is resting peacefully. He has had a lot of edema and swelling all over his body from all of the fluids they've been giving him, but in just the last couple of hours he looks so much better.

Apparently, Dr. Parra (Will's Vandy cardiologist) talked to Dr. Bove earlier, and he came by to talk to us early this morning, but unfortunately he missed us. Dr. Parra's schedule is very packed, so I don't know when he will be able to stop by, but I will let you know what he says.

Wednesday, January 25th

2006-01-25T09:18:00.000-06:00

I just got word that it will be late Friday morning before we hear anything. Michigan holds a conference every Friday morning with all of their docs to discuss their patients.

In this conference, they will decide what Will's options are. They will look at his cath results and at his heart anatomy to decide what surgery they should do, and if it is even an option... They also need to decide if they're willing to accept him, which we think they will.

The docs also want to do a CT scan of his head today, just to make sure that everything is ok before going to surgery.

Their goal is to get him as stable as possible for transport. This will take a few days. So far they have been successful in weaning him off of one of his blood pressure medicines, vassopressin. They still need to wean him off dopamine. They also want to be able to wean him off fentnyl and versed (both pain & sedative meds). This is a very slow process. I really don't know how this will go with him being so fragile. But, I am going to stay close and watch to make sure they don't push him too far.

It did scare us that they're talking about there being a remote possibility that surgery can't help him. We think he has fought too long and too hard for them to just give up. This is a million dollar baby!!

Tuesday 2nd Update

2006-01-24T17:44:00.000-06:00

Here's the latest. Will loves to challenge the docs here.

His IV in his foot started to leak and went bad, so the nurse had to take it out. Well, normally you would stick him somewhere else to get another line, but after several tries the docs couldn't get one. He has a pic-line, but his blood pressure medicines are going through it, and you can't stop them from going through to administer other medicines. If you did stop them, his blood pressure and oxygen saturations would instantly drop. He also has an arterial line in his other hand, but it is only used to check blood pressure and to draw blood for labs.

They can't put in a central line in his leg because it could dislodge his blood clot in his inferior vena cava. They can't put a line in his head because of his shunt. His veins on his shoulders can't have lines in them because they don't want them compromised with an upcoming heart surgery. The only other option is to do a line through his liver, but that is considerably risky given 1) it's a surgical procedure that could cause internal bleeding and an infection 2) he just had a heart cath through it yesterday 3) the liver was tougher than usual and it took 4 pokes yesterday for the doctor to find a vein.

Will was off of his feeds, but they decided that it was ok now to administer some of the medicines orally. They also found that some of them can be given through a shot to the muscle tissue.

The docs here want to wait to hear from Bove to see what the game plan is before they decide to do anything with his IV access. They think for now he is ok.

I want to thank all of you who have visited this site and written these incredible uplifting messages. It means the world to me and my family. I look forward to reading them everytime I log on.

Tuesday, January 23rd

2006-01-24T11:23:00.000-06:00

We just talked to the attending cardiologist. He said that there was something else that they found on the heart cath that was very concerning.

During the procedure, they measured the pressures in all of the heart's chambers. One of the atriums pressures was 22. Normal for him would be a pressure of 5-7. The biggest problem with that high of a pressure is they cannot do the 2nd stage (Glenn procedure) surgery to fix his hypoplastic left heart.

It appears that the only way they can fix his heart is to do a 2 ventricle repair, in addition to patching his narrowing right pulmonary artery. Originally this was best case scenario, but we always wanted the option of a Glenn in case his heart could not tolerate it. The cardiologist said that there are about 3 different ways to approach the repair, and it would be up to his surgeon, Dr. Bove on what to do.

They have Fedexed his pictures from the heart cath to Dr. Bove in Michigan, and now we are just waiting to hear what he says.

The attending said that Will would need surgery in the next 7-10 days. It will probably be Friday before we know any details. It takes a while to coordinate everything... insurance; getting Michigan to accept him; getting a bed space available; working him into the surgery schedule; scheduling lifeflight.

When we asked the attending what Will's chances were, he said, "Either he is going to make it or he's not. There's no way to know for sure. But, you have the best surgeon in the world, if not in the top five. If anybody can help him, Bove can."

We're so scared right now.

Monday 4th Update

2006-01-23T18:07:00.000-06:00

Will just finished with his heart cath, and he came out just fine.

They had to do the cath through his liver, which proved to be more difficult than most patients. His liver was tougher than usual and it took a couple of pokes to find a vein. They will have to watch his belly closely to make sure that he doesn't bleed out. But, so far so good.

This is what they found: the right pulmonary artery to his lung is narrowed, which may explain his problems with dropping his oxygen sats. This will definitely require a surgical repair by a heart surgeon. The Vandy doctors will discuss it tonight and will call Michigan as well to tell them their findings.

It may be as long as Thursday before we know anything about the surgery.

I'm not sure how soon they will want to do the surgery. I just hope they can wait until he is more stable and his infection is gone, because he can have a lot of problems with his surgery. But, they will do whatever they have to do.

Monday 3rd Update

2006-01-23T11:16:00.000-06:00

Will is going to have a heart cath this afternoon at Vanderbilt.

His doctors want to make sure that this is a surgical problem before sending him to Michigan. It wouldn't do much good to go the trouble of transporting him there to do the heart cath if it turned out he doesn't need surgery.

If he does need the surgery, we'll evaluate our options and make a decision.

Will should be going in early this afternoon for his cath. We'll let you know what happens.

Monday 2nd Update

2006-01-23T08:57:00.000-06:00

Well, this is what we have found out thus far.

The attending cardiologist is leaning towards Will needing a heart surgery. He said that although blood is getting through the shunt to the lungs, he doesn't think the shunt is big enough. They have talked about doing a heart cath, but there are some things we need to consider.

We really want Dr. Bove in Michigan to do his heart surgeries, but we don't know if Will is stable enough to be transferred there. Vanderbilt still has not found a replacement, but there are 2 surgeons on staff as well as a visiting surgeon who is currently overseeing the department. Right now, I don't know enough about their credentials or success rates to make a judgement call.

Another thing we have to think about is what surgery to perform. Although Will is almost at the point where he can have the 2nd stage operation, his lungs are so sick right now that the surgery would most likely not be successful. What they probably will do is go in and replace the shunt. We hate that, because he will have to go back in the next few months for another surgery.

We are also worried about the heart cath, because that alone is very risky for Will. As you may recall, he has a blood clot in his inferior vena cava. It is possible while performing the heart cath, the clot could get dislodged.

We will have to make some very difficult decisions in the next few hours, and I just pray that we make the right ones.

I have to be honest, it doesn't look good. I am just praying for a miracle.

Monday, January 23rd

2006-01-23T05:58:00.000-06:00

Josh & I went home last night to try and get a decent night of sleep, but we got a 3 a.m. call that no parent ever wants to get.

Will's nurse asked me, "How far away are you from the hospital? Can you get here soon? Will is not doing good... you need to get here now."

It was awful. We jumped in the car and raced to get to the hospital as soon as possible. It took about 10 minutes to get there. When we got to his room, the crash cart was just outside his room and the entire staff was inside. The attending physician was bagging him and everyone was watching the monitor.

My first question, "Oh my God, is he coding?"

The attending said he almost did, but they acted fast enough that his heart rate didn't get too low. His oxygen sats were in the 40's for almost 2 hours before they could get him to go up to 60.

His blood gasses were getting worse and worse overnight. But, after their tremendous effort his most recent blood gas showed that his numbers were improving. When I left his room a minute ago, his sats were about 67.

They did another heart echo which ruled out any problems with his shunt or heart. Will's lungs are very sick. He is somewhat stable now. We just pray that it stays that way. I will keep you posted as the day progresses.

Sunday, January 22nd 2nd Update

2006-01-22T15:49:00.000-06:00

We just spoke to one of the attending physicians, and they just got word from the lab that the culture taken from Will's trach is growing some bacteria. We won't know exactly what it is for another 24 hours or so, but she suspects that it is pneumonia. Hopefully they have caught it early enough that it won't take but a couple of days for him to get rid of it. We'll just have to wait and see.

In the meantime, they have had to paralyze him and give him fentanyl to get him to rest and let the ventilator and medicines do the work.

Sunday, January 22nd

2006-01-22T09:36:00.000-06:00

Well, last night Will did not improve liked we had hoped. They did several blood gases, and his numbers did not look good, so they had to take him off his home ventilator and put him back on the hospital ventilator.

We're still waiting on his blood cultures to come back to see if he has an infection. It is still possible that thet new medication they started him on the other day caused this. Right now we are just going to wait and see what happens.

Since Will is having these problems, we are going to stop rooming in.

This is a pretty big setback for us. Once we know what is going on, I'll have a better idea of when he might be discharged. I'll keep you posted!

Saturday, January 21st

2006-01-21T23:50:00.000-06:00

We're almost halfway through our rooming in period with Will. So far it has gone pretty well.

Unfortunately, Will had a rough day today. This morning his oxygen saturations and blood pressure dropped to low levels. His oxygen saturation ranged in the 40's and 50's (normal is 70's to 80's), and his mean blood pressure got to as low as 20 (lowest they like him to go is 45).

To help get him where he needed to be, they started him on hydrocortisone, dopamine (for blood pressure), and a sedative. They also had to give him a blood transfusion because his hemadocrite level was a bit low (probably from all the blood they had to draw for labs.) They also took some cultures of his urine and throat to see if he has an infection. And as a precautionary measure, they started him on 2 antibiotics.

This was a bit scary, because we thought that the shunt in his heart was failing. Thankfully, a heart echo showed that he was getting adequate blood flow to the lungs, but it did show some narrowing at the bottom of the shunt. They don't think it is significant enough to cause any problems.

His docs think that what probably caused this episode was a new medication that the endicrinology service put him on to help with his blood sugars and insulin levels. The last dose he got was at 4 a.m. this morning, but it can stay in your system up to 24 hours. So, they will watch him closely overnight and evaluate him in the morning before weaning him off his blood pressure medicines.

Hopefully, this won't delay our discharge on Tuesday. But, I kind of have a feeling that it will. I am just so thankful that this happened here instead of at home.

I'll try to "sneak out" to the family business center again tomorrow to give you an update!

Wednesday, January 18th

2006-01-18T23:00:00.000-06:00

Look at those chubby cheeks!! He is up to 8 pounds, 7 ounces!

Will rediscovered his hand the other day and began sucking his thumb.

I don't know who is enjoying this more... "Grandmommy" Nancy or Will?

What a busy couple of days it has been! There is so much to do! I still can't believe he is coming home! He is doing really well. He got moved into a bigger room with it's own bathroom the other day... it's really nice.

We will begin our 72 hour "rooming in" period with Will first thing Friday morning. It is basically set up to mimic what it would be like at home. We will eat, sleep, and shower in his room like we would at home.

Many of you have asked me over the past few months if there is anything you can do to help us. Well, if any of you in the Nashville area would be willing to bring us a meal this weekend, or even the first week or so after Will comes home, we would really appreciate it. Just post a comment and let us know when you would like to do so. And just so you know, we already have Saturday lunch covered.

It looks like Tuesday will be our discharge day! I can hardly wait!!

Saturday, January 14th

2006-01-14T09:31:00.000-06:00

What are you doing with that thing Mommy?

Sound Asleep

We got a discharge date yesterday!!! If everything goes to plan, we will be discharged either on Monday, January 23rd, or Tuesday January 24th.Can you believe it??

We will be very busy during the next week. All of his supplies and equipment are scheduled to arrive at the house on Tuesday via UPS. We have to do our training on his feeding tube, which should be a piece of cake compared to everything else. We will also complete our ventilator training on Wednesday. Then we have to "room in" with Will, which is when the parents have to stay in the child's room for 72 hours and take care of him without any assistance from the hospital staff. We will do this on Friday, Saturday, and Sunday.

Wednesday, January 11th

2006-01-11T23:02:00.000-06:00

Mommy & Will

I got some WONDERFUL news yesterday. Josh's employer got a new insurance company, as of January 1st. We were a little anxious about what his new lifetime maximum would be. (We were about to hit our $1 million cap with our old company) Will's case manager informed me that under our new plan it is UNLIMITED... NO LIFETIME MAXIMUM!!! Praise God!!

I am continually amazed by God's work in our lives. From day one, he has worked miracles for us.

The inspection of our apartment went well Monday, and his home ventilator is expected to arrive to the hospital sometime tomorrow, or Friday at the very latest. We can't wait to learn how to use it so we can get our boy home!!

I also want to say what a great job Kirk and Robert did today on their trach training! I know it is intimidating at first, but with time and practice it will get easier. Which reminds me, Josh, I am so proud of you too. He had to change out Will's trach today for the 1st time, and he was sooo nervous. He thought that he might pass out. But, you did a great job!

Oh, and I can't forget Will. He was so calm through the whole process. I think he is starting to understand that when we have to take care of his trach, although the process may be a bit uncomfortable, he will feel better when it is over with.

Thank you to everyone for your prayers and support for the Lowrie family. Little Wyatt goes into surgery 1st thing tomorrow morning (7 am our time) for his 2nd stage heart procedure. I know he will pull through like a champ! I can't wait until the day when Will & Wyatt will play together.

Prayer Request for Wyatt Lowrie

2006-01-09T21:50:00.000-06:00

Will's Heart Buddy, Wyatt Lowrie

I know we use this blog to do updates for Will, but I would like to ask you to pray for a dear friend of ours, Wyatt Lowrie.

Wyatt and Will were both flown to University of Michigan on the same day back in October for heart surgery, and were NICU/PCTU buddies through their heart surgery and recovery. Wyatt also has hypoplastic left heart syndrome and had open heart surgery the day after Will.

Wyatt has had his ups and downs just like Will, but we have just been informed that his shunt is failing. (For those of you who don't know, the shunt is installed in the 1st surgery and it is what provides blood flow to the lungs.) It appears that the shunt has narrowed significantly and will more than likely require an immediate open heart surgery to repair it.

Wyatt was heavily sedated and put on a ventilator today before being airlifted from Grand Rapids, Michigan to Ann Arbor, Michigan.

Wyatt and his parents Lori & Cass need your prayers desperately.

Wyatt also has a website if you would like to check it out. Go to www.carepages.com and sign up to be a member. When searching for his site, type in WyattLowrie, and it should take you right to it.

Thanks!!

Monday, January 9th

2006-01-09T11:41:00.000-06:00

Now you can see all of Will's beautiful face!!

Daddy comforting Will after surgery

Will has been doing well since surgery. They have started his feeds back again and so far so good. They have been giving him feeds every couple of hours, but his blood sugars were low this morning so they are starting continuous feedings again to see if it helps.

His ventilator setting is down to 22 breaths per minute, and now we are just waiting for his home ventilator to come in. They think it will be sometime today or tomorrow. The one he is supposed to get is the size of a laptop, so it should be easy to transport.

Our apartment is going to be inspected early this afternoon to make sure it is a safe enviornment for Will.

It's hard to believe we are so close to coming home!!

Friday, January 6th

2006-01-06T20:49:00.000-06:00

Will made it out of surgery ok. Its great to be able to see his face without any tubes... he's such a handsome little guy! I'll be sure to take lots of pictures.

If all goes well, they will be able to slowly start his feeds tomorrow. I'll let you know how it goes!