Gavin's Story published

One of the writers at the American Liver Foundation heard about Gavin's story and wrote an article about him. It's on the front page of their website:

http://www.liverfoundation.org/

Gifts from Gavin- new journey, new blog

I decided to start a new blog. I have been thinking about it a lot, trying to decide if I would, or if I would just continue to post here, or if I would make it public or private...finally I decided that there have been so many people that have shared in Gavin's story, followed him during all of his ups and downs, read all of our feelings and emotions and how we were dealing with it, gave us so much love and support...that I will go ahead and write about how our lives are now and how we are dealing with this. If anything I think it will help me to have an outlet, but perhaps maybe it can help others going through this to not feel as alone, and maybe help those who haven't gone through this to better understand "those that mourn".

Also, I hope that eventually I will be able to continue creating awareness about liver diease, Alpha-1 and organ donation. I feel like there is so much more I can do, that I *want* to do...I don't want anyone else to ever lose a child to this. It is like losing Gavin all over again. So hopefully within the next year I will have something planned. I know we will at least always do something on Gavin's birthday each year (Oct 6th), most likely have a toy drive for the hospital...but I also have other ideas I am thinking about.

The new blog is called "Gifts From Gavin"... http://giftsfromgavin.blogspot.com/

Book for Gavin

I am putting a small book together with pictures and stories about Gavin (mostly for his silblings, but also for us!). I read about the idea from another mom who had lost a child and she said it helped her other children remember their sibling. I thought it was a nice idea since Joenick and Evienne are so young and we might forget a lot of these special little stories over the years. I want them to be able to know Gavin as others knew him and to be able to sit down with the book whenever they miss him or want to feel to close him.

If anyone has any small experience or story that involves Gavin...just anything, can be funny, sweet, spiritual, a description of a time you spent together with him, things you remember about him, first impressions, etc, any small memory at all...if you could just jot it down real quick sometime this week and email it to me, I would really appreciate it. (The kids would be especially thrilled to read stories that involve them, too, if you have any!) If you have more than one, you can send them all! They don't have to be written "perfectly" just write whatever comes to you. They can be just a few lines or as long as you want.

Stories can be sent to: info@giftforgavin.org.


Thanks so much!

Poems

There were two poems included in the program at Gavin's funeral. It is a sort of a "tradition" in our family. One was written for him by my Aunt Nanette, and the other was written a long time ago by my Great-Grandma Vida when she lost her infant son, Robert. Knowing that she went through so similar an experience has helped me a little bit.

Gavin's Gift

Our gift was so precious,

With big brown eyes that stole our heart.

His tiny hands and feet so small,

A perfect baby from the start.

Our gift soon found new meaning,

His health seemed so unsure,

We never would have imagined,

A trial like this we would endure.

This road has not been easy;

We have shed a lot of tears,

But through these many trials,

We have memories to last for years.

He taught us how to love,

And how to truly give,

This special little guy of ours,

Has taught us how to live.

And we know if we could hear,

The words he'd share today,

Would be how much he loves us,

And then we'd hear him say:

I can't wait to be with Joenick,

And give hugs to Evienne, too,

I will walk right beside them,

As they journey this life through.

So don't think I'm not with you,

I won't leave you alone,

I will walk with my family,

As you journey towards your home.

So thank you for being,

The best parents a son could have,

You gave to me the most precious gift,

By being my Mom and Dad.

All my love, Aunt Nanette

Another little baby came to fill our hearts with love,

A tiny little stranger sent to us from Heaven above.

His hair as black as midnight, and he looked just like his Dad,

The sweetest little treasure a Mother ever had.

And oh, the joy and comfort this little fellow brings,

To be the Mother of this lad was sure a wonderous thing.

He did not tarry long with us, his days of life were few,

And Father's called him home again, a grander work to do.

We cherished him, and loved him, we were so proud each day,

It seemed we could not do enough his wonders to display.

And now he's gone to Heaven Above, great glory there to win,

Oh, just to be his Mother was sure a wonderous thing.

We do not feel to blame the Lord, for He knows always best,

He sent our precious baby here, then called him to his rest.

He came to get his body, but his spirit was so pure,

He did not need to take life's test salvation to secure.

And we know we shall meet 'ere long, if we keep free from sin,

Oh, just to be his Mother was sure a wonderous thing.

written by Gavin's Great-Great Grandmother Vida,

after the passing of her infant son

Gavin's Funeral Service

{you may scroll down to see more pictures from the funeral service; remember to turn off the music in the sidebar before listening to the links}

Opening remarks by Bishop Free


Opening Hymn "Teach Me to Walk in the Light"


Invocation by Gavin's great-grandfather "Papa"


Bishop Free outlining program


Musical number "Jesus Savior Pilot Me" by Bethany's cousin James


Life Sketch by Gavin's "Grandma Ann"


Piano Medley "Primary Children's Songs" by Gavin's great-uncle Doug


Talk by Pres. Robinson, family friend


Special Musical Number "Mary's Lullaby" by Crystal, family friend


Closing remarks by Bishop Free


Closing Hymn "I Lived In Heaven"


Benediction by Gavin's great-uncle Robert

Bethany's cousin James

Bishop Free

Gavin's "Grandma Ann"

Pres. Robinson

Gavin's great-uncle Robert

Thank you to all our dear family and friends who helped us honor and celebrate Gavin's sweet life. The service was beautiful...the programs, the music, the pictures, the flowers, the guestbook, the video. Everything was perfect. It meant so much to us to have you all there, and we missed all those who were unable to attend.

Obituaries

Obituaries were printed in both the AZ Republic and the East Valley Tribune on 9/26.

Online Guestbook

The day after

Thank you for all your support. We have been surrounded by family and friends, and can feel all of your prayers and love lifting us up during this hard time. We love reading the comments...it helps so much. Our extended family gathers around the laptop and we read them aloud often.

It has been a long week. I will continue to update this website, and will post pictures and insight from Gavin's funeral soon. For now we are holding fast to one another and trying to make our way through this.

It is our deepest sorrow to inform you that Gavin Charles Sprague passed away Monday evening. Information on his viewing and funeral arrangements will follow.

Thank you to all those who loved our special little boy so much.


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*Gavin's funeral will be held this Saturday, September 27th at the LDS Mesa Central Stake Center at 925 N. Harris Dr. Mesa, AZ 85203. Visitation will start at 10:00am and the funeral will begin at 11:30am. Graveside dedication will follow at the Mesa Cemetary at 1212 N. Center St. Mesa, AZ 85201.

We would love to see everyone there who has been touched by our sweet little boy's life.

Flowers can be sent to the Bunker Garden Chapel Funeral Home at 33 N Centennial Way, Mesa, AZ 85201 prior to Saturday. Flowers sent to arrive on Saturday should be sent to the LDS Stake Center.

Fast tonight

If you are able, we are asking our friends and family to fast and pray for Gavin starting tonight.

They re-did his catheter but so far there hasn't been any urine. He just got a big dose of the diruetic and they are hoping that will do something positive. If it doesn't, they are going to put him on dialysis tomorrow morning. Tonight is going to be a very long night. We could really use some peace and comfort during this time.

Its going to be tricky to put him on dialysis b/c he is still on the oscillator. Today while they took his lung culture (which they have to turn off the oscillator to do) he didn't drop any of his numbers...so the doctor is hoping that they will be able to switch him to the ventilator or hand pump it for at least a couple of hours so they can do the surgery. They won't be able to take him into the OR b/c of his condition, so they will try to do it in his room.

His white blood cell count keeps rising, leading them to believe that he either got another bacterial infection, possibly from his abdominal drain, or the fungus has spread. The infectious disease doctor said there aren't really any other options for the fungus, but they will add another antibiotic, Vancomiacin, in case it is a new bacterial infection. Nothing has grown out of any of the cultures though.

His blood pressure kept dropping into the 50's and they had to turn up the dopamine to 18 and turn up the epinephrine. They also gave him some calcium b/c that was low, probably b/c he didn't get his TPN last night since he wasn't urinating. It is stable again now and we pray it will stay that way.

We do have some positive things to be thankful for. At least this time his oxygenation has been stable, he hasn't needed to go much higher on the oscillator, and he is not so bogged down with fluid as before. These are little bits of hope we have to cling to, and we pray that they will make the difference while he fights through the next 24 hours.

We pray that the diruetic will help him tonight. We pray that he won't need the dialysis, but if he does, that he will get through the surgery. We pray that this new infection will be identified soon and that they will be able to treat it successfully. We pray that Gavin is given the neccesary time to fight this battle and stay here with his family who loves him so very much.

please pray

His blood pressure keeps dropping, its only in the 80's right now. His chest x-ray looked worse today. They don't know whats wrong. They think the infection may have spread through his body. They turned the oscillator back up to 22. Please please pray for him. He's come so far...we can't lose him now. I don't know what else they can do. We're just sitting here waiting and praying. I don't understand why this is happening. Please let this only be a setback...please let him get better. Its going to be days now before he can get off the oscillator...his kidney numbers have to improve, there's nothing else to do.

Monday morning- kidneys getting worse

Gavin has taken a turn for the worst...within the last 24 hours he has stopped urinating completely and his kidney function numbers have risen from 0.7 to 1.1 (they have been saying all week that when it gets to 1 its really bad). His blood pressure dropped again last night and they had to turn the dopamine back up to 12 and the oscillator back up to 21. He drained a lot of bloody fluid from his lungs, so they think that was making it harder for him to breathe.

There have been blood clots in his urine so they don't know if he has an infection that spread to his liver/kidney/bladder or if there are clots in his bladder. They just don't know. They took out his catheter and are doing an ultrasound on his abdomen right now. Then they will try putting a new kind of catheter in.

I don't understand why this is happening. He has come this far only to get even worse. Why???? We are terrified. After he had so many good days I didn't expect him to crash like this so suddenly. Everyone was so optimistic. I don't want this to happen. He was supposed to wake up tonight. My heart is breaking again.

Please pray that this infection hasn't spread to other organs and that it will turn out to be something easily fixed. Please bless his kidneys. Please bless he will start urinating again. Please bless he can get off the oscillator. If they have to end up doing dialysis on him, he has to be off of it completely, or there are no other options.

Sunday night

They turned down the oscillator to 20 tonight! So far, so good. Heart rate is in the 130's, blood pressure is staying steady in the 100's, and his oxygenation is still at 100%. Tomorrow morning(if all goes well) will be 19...tomorrow night switch to the vent!

He had a pretty stable day, and only a couple hiccups...this morning his blood pressure dropped for a minute so they turned up the dopamine again (they had just tried to turn it down). His doc said that was fine though...if he has to be on the dopamine until he's off the oscillator and the vent, its okay. She also said that the oscillator can make your blood pressure lower, so that maybe he's just ready to switch. 

Then later this evening his oxygenation fell below 94% for about a minute, but it went back up so it wasn't a concern. Still those things scared the heck out of me, I am so paranoid today. I do not like hearing that alarm!!! His fever went down this afternoon, so hopefully that will stay away for awhile.

Church was really nice today...the building is really neat, its an old one from the 50's with a balcony and a courtyard in the middle. I love those ones! We only stayed for sacrament, but next week, depending on how Gavin is doing, we will stay for all the classes. I am excited...its been awhile since we've been able to go to church together! The compassionate care person is already getting info for me for the playgroups and mini meets. 

We are still praying nonstop that his body will tolerate getting off this thing. They will be able to turn off the paralyzing meds when they switch him to the vent, so he will have periods of awake and awareness. I am so excited!

Sunday morning

During the early morning they turned the oscillator down to 21! He is handling it really well. So tonight will be 20, and tomorrow morning they'll try 19, if he tolerates that, they'll switch him to the ventilator sometime tomorrow. I can't even express the joy and thankfulness I felt when Andre called and told me (I slept at the hotel, he stayed at the hospital last night). I was just in tears and very quickly on my knees to thank my Heavenly Father. I don't think I've stopped saying "thank you" in my mind all day.

They turned his last blood pressure med down to 8 from 10, and lowered his diruretic again (the nurse said she actually had to call and double check the dosage b/c it was so low she thought it was a mistake!). His kidney numbers went down another point, so that is a very good sign. His oxygenation is still 100% with only a teeny bit of help from the oscillator. His blood pressure is in the 90s/100s, and his heart rate has been in the 140s.

He did spike another small fever this morning, to 100, so they are putting ice packs on him and keeping an eye on it. But again, they said its normal while he is fighting off this infection. One side of his chest looked higher than the other, too, but they did a chest x-ray and multiple doctors have looked at it and they don't think its anything to worry about. It makes me nervous, but they said it would be messing with his ability to oxygenate if it was fluid build-up or something.

The ward members here in LA are taking us to church for sacrament today, and then to the temple afterwards (we're not doing a session, just walking around). It will be nice to be able to show our gratitude in God's house though.

I am still super nervous about any setbacks that may happen. But things have been so good the last couple of days. We are so grateful that drain in his abdomen has seemed to help everything. We all feel that Andre was inspired to mention it to the doctors that morning.

I just can't wait to see him awake. I get in tears just thinking about it. I just want to hold him and hug him and see him looking at me. I am so thankful to all the doctors and nurses and medical staff here at UCLA. I don't think he could be anywhere better. And thank you, thank you, thank you to all our friends and family that have been so diligently praying for Gavin this whole week. I can't express it enough.

He still has a lot of road ahead of him, so he still needs all the prayers he can get. But today is a very good day. If he can just get through the rest of the weekend and onto the vent, he'll be in a much better position. We have been reading all the comments on the blog to Gavin, so comment away! We love to read them. :D

Saturday night

Gavin is down to 23 on the oscillator. His blood pressure dipped to the 80's for awhile, but it finally stablized in the 90s. (they don't want it to go under 80) The infection is what makes it hard for him to keep his blood pressure up, so we are praying that the anti-fungals will continue to hammer away at the fungus. We keep telling him to think of little army guys killing all the bad fungus buggies.

They have his oxygenation level at 30% (which is really only like 2%, because there is normally 28% in the air anyway). When they took his lung sample today, they had to turn the oscillator off for a minute and none of his levels dropped, which was really good.

They also turned off one of the blood pressure meds, and took him off the continuous Lasix (diruetic) which will really help his kidneys relax a bit. His urine output has been stable today at around 3 mLs an hour (normal for his size would be 1-2 mLs). His fever went away this evening and seems to have gone into remission, for awhile anyway. His heart rate right now is in the 130s, a little high, but okay. They don't want it to go over the 150s.

This is so nerve wracking. I am so nervous and holding my breath that he will remain stable through these little changes. I am trying to figure out how to be happy that he is doing well right now, while remembering that he still has a lot left to work through, and showing my thanks for our blessings today, while still praying for him to get through the next challenge tomorrow. As they say a LOT around here..."its a balancing act."

The main goal right now is for this infection to clear so his blood pressure can stabilize, and he can be weaned off the oscillator. Secondary goal is for his kidney function to get better and his urine output to stay good.

This was Gavin last week, just 3 days before he went to the PICU. He had just learned how to wave when people say "hi" to him. I can't wait to see him awake and opening his eyes and smiling and waving again. He is turning 1 year old in 2 weeks (October 6th!)...I hope, hope and pray that he will be awake by then.

Saturday afternoon

Gavin had another stable night. They moved the oscillator down to 24. And they've turned down some of his meds, his blood gas is good, his blood pressure has been stable, and he is about half the size he was yesterday- he looks so much better! His kindey function numbers went down by one point.

He did develop a fever during the night, and it has been up and down all day today, but the infectious disease doctor is not too concerned about it. He said its totally normal for him to spike fevers during the first couple of weeks while he is fighting this infection. With ice packs they have been able to keep his temp under 100 so that is good.

His heart rate has been a bit high today around the 140's, so they have been adjusting his pain medication and his paralyzing meds. He has been really sensitive to the paralyzing drugs, so they have to keep moving it up and down...one hour he will be "too out of it" and the next he'll be twitching his toes and fingers and moving his chest. That is not good b/c then he fights against the oscillator which wears him out.

They are hoping to have him weaned off the oscillator by Monday. Please pray that his body can handle it! They will try turning him down to 23 this evening, and down to 21 tomorrow. We just pray pray pray that he will tolerate it this time.

I bought some books from the gift shop to read to him, the Golden Book Classics like the Pokey Puppy and The Little Red Caboose. We are trying to encourage him and talk to him a lot.

He is still "deeply, deeply in the woods" according to his doctors, but he is making baby steps in the right direction today. Today is the first day he has had a positive move forward, so hopefully it will stick. Two nights ago they were bringing up end of life options. So this is a small tip toe away from that. Thankfully that drain seems to have put that off for at least another day.

So today we have a lot to be thankful for. It doesn't mean that he can't back track or that tomorrow he couldn't crash again. Its really scary to think of that. We are all still holding our breath that the fungus hasn't spread anywhere else to his body, and that he can remain stable throughout the weekend. We are praying to thank our Heavenly Father for more time, and for the generous blessings we have received. We pray that Gavin can continue to move forward and his body will be able to heal and fight this infection. He still has a very long way to go.

Friday Night

Gavin has had a good day. Everything has remained stable. Most of his numbers are looking better than yesterday. His urine output doubled after the drain was put in! That is so so so great. They will start weaning off the diruetic, which will also give his kidneys a break. Hopefully his urine output will remain the same, even without the extra drugs. That would be such a great step in the right direction. We are praying specifically that his kidney numbers look better in the morning, it is crucial for them to go back down at this point.

They are just letting him rest tonight, and not trying to wean him off the oscillator just yet. Hopefully it will be a quiet evening. We are praying that his little body will be able to heal and rest tonight, and tomorrow he will be ready to fight again. We hope and pray that tomorrow we will see more improvement as his lungs heal and are able to breathe more freely. We pray that this fungus hasn't spread to anywhere else in his body.

Two elders from the ward here in LA came to see us today and help give Gavin a blessing. They were so kind, and are arranging some meals for us this next week. I am so humbled by the willingness of their ward members to help a family they don't even know. We are hoping that maybe we can attend a meeting soon.

He is not out of the woods yet. He can, and probably will, still have some setbacks and bad days. But today he was stable. And right now that is the best blessing we can hope for. One step at a time...hour by hour, day by day.

It is a little scary, letting this hope creep back in after yesterday looked so grim. We are trying to hold onto it though, no matter what happens in the days to come. He can do this. He has made it this far. We have been in continual prayer of thanks to Heavenly Father for these blessings today. We are thankful for hope. We are thankful for the outpouring of love for our precious Gavin. We are thankful for one more day.

Drain successful

The drain is in, it was successful and went in quickly. They already drained 1/2 a liter of fluid from his abdomen. (think of a 2 liter bottle soda...1/4 of that!) I'm sure this will help him breathe a lot easier.

We are so extremely grateful that this is in and it is working. We continue to pray that will strengthen his body and continue to work properly and avoid any new infection or bleeding. We pray that this will give Gavin the chance to relax and heal and get off the oscillator this weekend.

Now we wait for the results of the fluid culture...

Friday

Gavin remained stable the rest of the night and this morning. They needed to turn up his oscillator and start some different meds to help with his blood pressure and heart rate, but he responded to them appropriately and quickly, so that is is okay, even if its not the best scenario. The only problem with this is that the more meds = the more damage to his liver and kidneys.

He did start urinating some more though, so was great news. His kidney function didn't worsen either. We are soooooooo grateful. Right now that is the main concern. His kidneys can not fail. His blood gas oxygen levels were better as well.

They actually had a fungus grow from his lung cultures, and it was a different one than they were thinking, although they present very much the same and do pretty much the same thing. The anti-fungals he has been on are good for both though, so at least we haven't lost any time. His chest x-rays are still about the same, but they said those usually lag behind the patient's real condition, and they aren't as important.

They are putting in a drain into his abdomen right now to help relieve some of that fluid. There are risks, but right now the benefits outweigh them. Hopefully this will take some of the pressure off his lungs, helping him to breathe, and the strain on his kidneys. They are going to be testing the fluid to make sure the fungus didn't spread. Please please pray that it hasn't spread past his lungs.

We have faith that Gavin can make it through this. He is such a fighter. He just needs more time to fight this infection and let his lungs heal. If he can only do that then he will be okay. This weekend is going to be a big deal. He is pretty much hour to hour right now. We are so grateful for all the prayers in Gavin's behalf. We are so thankful to our Father in Heaven that Gavin has made it this far. Please please continue to pray to our Heavenly Father in his behalf. Thank you all so much.

Please pray

Gavin is having a really rough day. His kidneys are in bad shape. His blood pressure keeps dropping. He isn't urinating very well. And his bleeding is bad. Tonight is crucial. Please pray for him. He needs more time for his lungs to heal. All he needs is more time. Andre's mission president came and gave Gavin a beautiful blessing. We are all trying to have faith he will fight through this night. Please please please pray for him. He has to make it. He has to make it through this night. Please don't give up on him.

Two steps back...

Gavin made some good progress yesterday, he was down to a 23 on the oscillator, and off both drugs that were keeping his heart rate and blood pressure stable. But by tonight they had to switch the oscillator back up to a 28, where it was Monday evening when I first got here, and had to restart the med for his blood pressure again. He also had more blood in the samples from his lungs again. If this fungus did start in his lungs like they think, that means its been there for over a month and has done a lot of damage.

Its so disheartening. I am so worried about him. I just wish I could fast forward through the rest of the week and see him off these vents and awake. Its so hard just sitting here waiting, and then having his progress undone. Its like the last two days didn't count. Fungal infections are so hard to treat, and on top of everything else...it just feels like drowning.

There has still been nothing growing out of his cultures. They did an ultrasound of his head just to make sure he was not bleeding in his brain. They had no reason to think he was, but they wanted to check just in case since is he having bleeding in other places and its easy to do an ultrasound without bothering him anyway. He hasn't needed blood products at all today though, so that was good.

They changed his sheets today, put in new tubing on all his stuff and washed his hair, so that was nice. I have been playing music for him today to help relax him...like Enya, nature-y stuff.

Thank you to all those who fasted and prayed for Gavin today, we really appreciated it.