Tuesday, May 27, 2008

Brody's Birthday

Yesterday was not only Memorial Day, but Brody's birthday. We took various toys to his grave. We also took balloons and let about half of them go. Kaybri told us that they were going to heaven for Brody and Jesus. With everything that has gone on, I'm sure its all very confusing for her, but she is handling it so well. I'm shocked at how much she really understands. Yesterday, we also had steak lunch with family and watched old home videos of Brody's 1st birthday. It was a really nice weekend. I'd have to say that we are really getting along fairly well since Brody's passing. Its hard and painful yet peacefully enlightening. We love him so very much and enjoyed devoting this weekend to Brody and the legacy he leaves behind.

Friday, May 23, 2008

The Pain

Its still so hard to wake up each day and realize all over again that our precious boy is no longer down the hall in his bed watching cartoons and smiling. When Brody died, a huge part of us went with him. We miss him terribly. They say time will ease the pain. If losing the pain means the memories fade, I'll keep the pain forever. We know without a doubt that he is in a better place. Occasionally, we feel his sweet presence comforting us. However, its still so hard. I know that as each day passes, Brody will be on our minds. We love and miss him so very much.

Wednesday, May 21, 2008

Thank You

Brody's funeral was so incredibly special. I was shocked to see how many lives our little angel boy had touched. I don't think there was an empty seat in the chapel. Everyone who participated in the services did an amazing job--whether they spoke, sang or prayed. They really shined. After the grave dedication, some friends started up their dirt bikes and four wheelers on the ATV trail adjacent to the cemetery. (Brody had absolutely loved the sound of four wheelers) As they did "one last ride" the wind suddenly gusted just briefly and then stopped. The crowd sobbed. It was so awesome to know Brody was there. We are extremely grateful to everyone who's been in contact with us since Brody's passing. The gifts, the cards, the thoughts, the prayers....You have really touched our lives. I have several hundred thank-you cards to write. I'm hoping to complete them by this weekend. Until then-- Thank you, thank you, thank you.

Thursday, May 15, 2008

Sweet Angel Boy



Our precious Brody was a gift from God. We will cherish the memories we have of our Schubby Buddy. He has touched so many lives and helped to show us the way. We will miss him terribly. Our sweet angel boy. Thank you to all our friends, family, and our community for the outpouring of love and support. Thank you to those who stood by our sides in our darkest hour last night. Thank you to all the medical teams who have worked closely with Brody to make his life as sweet as it was. Even more than sadness, we feel tremendous peace. In Heaven, our angel awaits...

Funeral services will be held Tuesday, May 20, 2008 at 11:00 A.M. in the Salina LDS Stake Center, 98 West 400 North in Salina, where friends may call for viewing Monday evening from 6 to 8 P.M. or Tuesday morning from 9:30 to 10:30 prior to the services.


Wednesday, May 14, 2008

I Saw God Today

This evening at 6:20 PM, our sweet angel peacefully returned to the loving arms of his Father in Heaven. He was surrounded by friends and family. Thank you to everyone for your love and support.

Tuesday, May 13, 2008

Day to day, Brody is fading. He's been a fighter, but he's ready to go Home. We will be doing family pictures in our home Wednesday evening. Anyone who would like to come see him, please come anytime! We don't expect him to last through the weekend. I hope not. He's been through enough. Its time to let our angel fly.

Monday, May 12, 2008

Homeward Bound

(Posted by Aunt Trista)
Joss and Amie have asked that I update the blog and just let everybody know that they are headed home. I don't have a lot of details, I just know that they left at around 2:00 and should be home between 4:00-5:00 this evening.

We want Joss, Amie, BRODY, and Kaybri to know WE LOVE THEM VERY MUCH.

Also, thanks to everybody for all their love and support. It is greatly appreciated.

Big Day of Planning

We will be meeting with several groups of people today to determine when exactly we'll be going home and make necessary arrangements. Brody has been pretty peaceful. Two days ago we found out that the staph that had been on his hardware last fall is still there after all. The Orthopedic Surgeon had wanted to take him back to surgery to irrigate the area and clear out the infection. However, going to surgery requires him to have IV fluid that Brody may not be able to flush off due to his kidney failure. We will meet with the surgeon this morning to discuss whether or not it is really in Brody's best interest to go to OR today. That will be the deciding factor on whether or not we will be home tonight. We have lots of things to get in order today. We will try to update this later today... Also, a huge thank you to everyone who helped out with blankets and books for the Ian Pearson Project. His parents will be arriving today to donate those items and I know it means a lot to them. It means a lot to us.

Sunday, May 11, 2008

Going Home

We have decided that we want to let Brody go home and enjoy as much as he can. To be surrounded with family and friends. We are meeting with several groups of people tomorrow to help coordinate his care at home and arrange his peaceful passing. We will likely be home tomorrow night at some point. As long as he'll tolerate it, we plan to get family picture, go for walks, sit in the pool, and anything else that might brighten his final days. Thank you to everyone for your prayers. Please feel free to call or visit us anytime. We are bringing him home to share with the world one last time. Our precious angel boy.
My brother had this lovely thought to share with us. Thank you so much, Trestin...

Joseph Smith had a vision of the Celestial kingdom that he recorded:

And I also beheld that all children who die before they arrive at the years of accountability are saved in the celestial kingdom of heaven.
D&C 137:10

Saturday, May 10, 2008

Chosen Ones

Brody's grandparents found this beautiful poem for us and in case you didn't see it in the "comments" section, we'd like to share it with you:

THE CHOSEN ONES
I had a dream the other night. It came to me so clear.
I stood before the throne of God,afraid to come too near.
God said to me, "I hear your prayers. There are answers you can't find.
I brought you here to talk to me and help to ease your mind.
"I said,"Well, yes, God, I am upset...About my special one. This punishment is awfully harsh...Whatever have I done?"
God looked at me and shook his head, He said, "My Dear, you've got it wrong.
I sent this special child to you because you are so strong.
I searched and searched to try and find someone with a love so rare. Parents so unselfish they could give him that special care.
I try to save my special gifts,like those you're speaking of,for a special kind of parents I call the 'Chosen Ones.
'Of all the ones to choose from,I know I've got it done...Parents who deserve my best,an honor you have won." -Unknown

How Do You Say Good-Bye?

I don't care to go into a lot of detail at this point, but we learned that Brody will not be physically able to receive a kidney transplant. So... Brody will soon die. I don't really have a time frame or anything. Its now up to us to decide how much more we let him endure. Our main focus right now is keeping him comfortable. That is all we can do. Its the only option we have left.

The Usual

No care conference yet. I told them its not necessary because the only people I really want to corner is Renal. We are working to arrange something for today if possible. Brody had a pretty good night. He has been needing less sedation each day. With Brody's arm, the big issue is this big, black bruise that just appeared a few days ago. Yesterday, I noticed a small, but similar bruise on his side and one on his shoulder. The doctors are still baffled. Yesterday, I mentioned that the doctors thought it could possibly be Lymphoma. Wrong. They meant Lymph edema. Totally different. However, they don't seem too sure that's what is going on. For now we'll just do The Usual-- "wait and see what happens".

Friday, May 9, 2008

Care Conference

Brody's night went pretty well. He looks slightly less puffy today, but his kidneys still aren't working like they should. They are trying to arrange a care conference for today. I will have most of Brody's regular doctors, in all specialties, in a room together to discuss our long-term goals. I mainly just have questions for Renal, but the other specialists may have some good thoughts to add. Until then, our plan for today is start an additional medication to help jump-start those kidneys. It has to be given IV through a dedicated line so he's been poked quite a bit this morning. As for his arm, it looks terrible. Worse everyday. The doctors are baffled. Possibly Lymphoma or maybe some strange side effect to numerous blood transfusions? On a happy note, his cultures from his Titanium Ribs came back negative. No more staph infection! So we were able to discontinue that antibiotic today. On an even happier note, we have lots of family coming today. I've been looking forward to this day all week and I'm sure Brody will really enjoy having the extra company. He always does better when surrounded by loved ones. :)

Thursday, May 8, 2008

Tough

We managed through another day without dialysis. I know I should be thankful for that, but a part of me feels like we should focus on trying to preserve what little bit of kidney function he has. Then we can focus on the next step--transplant. I'm hoping to get some time with the Renal Team tomorrow to discuss the long-term plan for Brody. Also today, our nurse was finally able to draw the attention of the doctors to that poor injured arm. Its quite swollen, very bruised, and completely immobilized. They did repeat x-rays and ultrasounds and still did not find anything wrong with it. However, they seem a little disturbed that the arm appears to be getting progressively worse and so they are watching it closely. Through the day, I've seen more of "Brody" than I've seen in a while. He would get upset with nurses and x-ray techs and begin to kick and thrash around. That shows me that his "permanent" mental status may be improving some. I love to see the fight in him. He may only be 3 feet tall, but he's one of the toughest people I know!

Each Day is a Gift

Thanks to everyone for your encouragement. I'm really ashamed that I let the stress get to me like this. Things don't look good at all. The future is very unclear, but we will continue to do all we can. I refuse to look back on this whole experience and wonder if I really did all I could. Its so upsetting that I can't even talk with some of Brody's regular nurses because they begin to cry about the situation, but I'm glad they care...
Through the night Brody's urine output decreased even more. There is one last medication they can try but its a long shot. At the rate his kidney function is declining, the question is whether we have the time to mess around with more medications or if we need to start hemo-dialysis right away to preserve what little bit of function he has. We have been keeping him full of sedatives and narcotics for comfort. I've only seen his eyes just once since surgery Monday. Its impossible to describe the pain I feel when I see him like this. I just need to remember that he has been with us 4 years longer than ever expected. Each day that we have him is just another gift. He is our saving grace and we will do everything in our power to fight for his life. If he's not giving up, neither are we.

Wednesday, May 7, 2008

Kidneys =(

Well, Brody's kidneys are getting a little sluggish again. They said they'd watch him through the night and see if things improve. Honestly, I will be really surprised if we make it through the rest of the week without doing emergency dialysis. If they decide he'll need the dialysis regularly, we will likely have to relocate to the area in order for him to be brought in 3x week for several hours at a time. Or if we opt to go straight to transplant, we'll have to start screening donors. Even then, we will have to relocate. All organ recipients are required to live near the hospital for several months following the transplant so they can be carefully monitored for complications. And what if Joss or myself don't match? We've had several family members offer their kidneys, but I'm not sure we could accept it. Some people have pointed out that, no matter what we try, we can not ensure he will have a long, healthy life. Delaying the inevitable some say. Cruel words or a heavy dose of reality? Either way, Joss and I are doing our best to remain hopeful. We will see how things go. One day at a time.

Very Slight Improvements

Brody's urine output improved slightly through the night, but he's still not where he should be. They have increased his water pills to help maximize his urination. We'll see how it goes. They keep disregarding that poor arm of his. The new resident tried to tell me that they aren't concerned because the size of the arms are symmetrical. I disagreed with him and he kind of blew me off. We've been measuring the right arm around 16cm and the left around 21cm. Hardly symmetrical! I really try to be as pleasant and cooperative as possible but I am so close to laying into this new resident. He seems quite intelligent but the arrogance has got to go!

Tuesday, May 6, 2008

Emergency Dialysis?

Brody's kidney function is still poor. Its estimated that his kidney function is about 15%. Since his kidneys are still producing urine and maintaining an okay balance of electrolytes, they say that dialysis for his chronic kidney disease is still not necessary. However, if his kidneys don't start producing more urine than they have today they may have to do emergency dialysis which will likely be temporary as long as his can maintain a good balance on his electrolytes. We will be watching him very closely. I feel a little more confident in the staff as the day has progressed. Also, I took off for a couple hours and got some rest. So I'm feeling much better too. Now if we can just get Brody feeling better too, we'll be set.

New Residents (Ears and Open Minds Sold Seperately)

Its been a yucky day. I haven't been feeling well and debated even getting out of bed to come up here today. I'm glad I did. Brody's kidneys are really struggling. The PICU doctors have been giving him about the highest pediatric dose of Lasix (a water pill to help him pee) that they dare give--along with a couple other similar water pills. He still hasn't been urinating much at all. He is super puffy. His eyes look like little water balloons. I'm not sure he can even open them. The PICU doctors have been trying to "straight cath" him. This is when they use a catheter to force his bladder to empty and then immediately remove the cath. This has never been very effective for him and I warned them of that yesterday. The new team of residents disregarded my concerns. Today, they took my advice and placed a more long-term catheter. We'll likely leave that in for a few days. Also, Brody is quite anemic and could probably benefit from another a blood transfusion in the next couple days. However, they will not consider that if he is not urinating because getting a blood transfusion puts a lot of extra fluid in the body which can be really harmful if he can not flush it off. In an attempt to decrease his fluid intake, the doctors have switched his formula to Suplena. He has had trouble with this in the past. He throws it up. With a trach, you run a higher risk of aspiration which could potentially be fatal. However, this different formula will cut his fluid intake in half. Its a risk we're going to have to take. Also, with that dang arm of his, they still just want to "wait and see what happens". Hello?! Its completely immobilized! I wish they'd look into it a little better. Granted, its not life threatening, but its hardly fair to make him lay around day after day with a potentially broken or clotted arm....
I just want to go home and take a big old pill and slip into bed until I feel better, but I don't dare leave his side for more than a few minutes because there are times when I seriously doubt the intentions of the staff, namely the doctors. So I'll stay here and fight for his rights and ensure he is taken care of properly.

Monday, May 5, 2008

Quick Procedure

Brody had his VEPTR surgery this morning to expand his chest. It went really well and turned out to be a really quick procedure. We had anticipated 90 minutes but it took less than 45. His chest is noticeably bigger now. Also, we are hoping to have a repeat ultrasound of his arm and maybe his chest today to see if we can't figure out why his elbow appears to be injured. Other than that, it should be a pretty slow day. We are keeping him extra sedated to help keep the pain at bay. We'll see how things are going tomorrow and I'll post any updates then. Thanks to everyone for all the prayers!!

Sunday, May 4, 2008

With Brody's elbow, we still have no news. They may do a repeat ultrasound tomorrow to look for blood clots further up his arm, closer to his heart. As for his kidneys, the renal doctor today said that his oversized belly probably isn't so much excess water from poor kidney function, but rather gas. Joss and I agree with him entirely. Also, renal said that the reason his renal function numbers are starting to indicate increased kidney failure is likely due to the 12 hours of IV fluid they gave the other night to try to boost potassium levels. He said that he thinks the PICU had the right idea but went about it wrong. Also, there are several various things they check to determine kidney failure. All of these things remain the same but one. The renal dr suggests that it will likely improve over a few days, which is great to hear!

Saturday, May 3, 2008

A Nice Day

I haven't had a chance to post since yesterday. Joss and Kaybri came up last night and I've just been too busy enjoying my family. Joss and I took Kaybri to the zoo today while Joss' family was here visiting with Brody. It was nice to get away for a bit. I've noticed that, on the days Brody is surrounded with family, he is much more content. There is definitely something to be said for that! This evening, the Attending Physician informed us that Brody's kidneys are starting to trend towards failure again. At this point, we'll just try a few medications and hope that helps. Other than that, its been a fairly nice day for him and therefore, a fairly nice day for us. :)

Thanks Grandpa "Joe"

Brody

The storms of life seem to visit us all,
and it don't really matter who we are.
Some storms are light, and just flurry on by,
and some shake us clear to the core.

Some storms come in so hard and fast,
we don’t know it until they’ve gone by.
And some come in kind of slow, then they stay,
and all we can do is ask why.

And why do some folks have more storms than others?
It aint right and just don’t seem fair.
Cause Brody, who’s my Schubby buddy,
has certainly had more than his share.

Now I know God’s a watchin’, lookin’ over us all,
but sometimes it just don’t seem right.
A little boy like Brody, barely four years old,
just the thought of it makes my jaw tight.

Well I guess Brody must be special in God’s eyes,
cause the storms of life are meant to make us tough.
And the storms that he and his family have seen,
Well they’re almost more than enough, yet…

With each new storm that seems to enter his life,
Brody just keeps beating the odds.
I guess he hasn’t fulfilled his full purpose in life,
he’s not ready to return to the Gods.

So we’ll hold our angel just as long as we can,
and we’ll love him every single day.
And we’ll fight the storms right there beside him,
just as long as he’s willing to stay.

Greg Harwood

Friday, May 2, 2008

Brody has been sleeping like a rock all morning. It seems he is either Storming like crazy or sleeping like crazy. Still working to find that happy medium. No news on his elbow yet. I don't think the PICU team has really had time to address it yet today. His potassium levels are usually high due to his kidney failure, but its low today. They are working on that right now to get him level before we see serious complications associated with low potassium, primarily heart and muscular problems. Other than that, its been a really uneventful day so far. Just the way I like it.

Thursday, May 1, 2008

As I previously mentioned, Brody can hardly bend his left elbow. They did an ultrasound to look for blood clots associated with the PICC line he had last week. No clots. So now they wonder if its not the bone. They will likely xray it tomorrow. As for his VEPTR, they were able to squeeze him onto Monday's schedule. It should only take an hour and is a relatively minor procedure in comparison to when he had the VEPTR hardware placed last fall. Throughout the day, Brody has just been sleeping a lot. He's a little over medicated. We're working to find a good balance so that we can manage the Storms without knocking him clear out. Oddly enough, I'm starting to think Brody has been Storming all along, just on a much milder scale. Ever since he was born. We always likened them to "autistic tendencies" but I am now beginning to think they were Storms. Sudden and unexplainable spells of agitation. I don't know. Maybe I'm just overthinking it.

Better Spirits

After my last post, I returned to Brody's side to find him awake and quite alert. He looked up at me with those big blue eyes and gave me a very faint grin. My heart melted. The happiness was short-lived and the Thalamic Storms soon returned. But in that moment, I felt so much peace.
Today, I met with the orthopedic surgeon about whether or not we would proceed with the rib expansion procedure next week. They said that as long as he is stable and the PICU doctors think he is up for it, they see no reason no to go forward. In fact, rather than doing the VEPTR surgery Thursday, they are going to TRY to move it up to Monday just so we don't have to go home just to turn around and come back. Also, upon further exams by Rehab and Physical Therapy, they have noticed Brody's left arm will not bend well. It doesn't appear to be anything related to the bone but rather a possible side effect to the PICC line (a type of IV that is placed in the arm and is threaded up the vein to the heart) They may do an ultrasound today to see what problems, if any, there may be. As always, I will update the blog with any updates.