Busy Season

I've been so busy I haven't posted anything in weeks. So far our holiday is going pretty well. Its been difficult not having Brody around but we are doing what we can to keep his memory alive. We actually put one of those 6 ft tree lawn ornaments on Brody's grave. Over the top? Maybe, but thats okay.
Here we are less than a week from Christmas and I have barely even started my Christmas shopping. I'm off work today so maybe I better get on it!! Thats the one thing I hate about Christmas. I hate that I have to spend so much for it to be a "good" Christmas.
In other happenings... Trista and Scott were married last Saturday. It was a nice ceremony and the reception went well. However, it snowed like MAD!!! It was a scary drive but it was worth it to see those two so happy! :)

MERRY CHRISTMAS EVERYONE!!

Yep, We're Still Here

We've been a little slow at updating the blog or checking emails or returning phone calls... No worries! We're still kickin! We've just been busy....
Joss' employer had to do layoffs (I'm afraid its becoming a trend in our area) and he was lucky enough to keep his job, but now he has been working a different schedule and has been really wary to slip up. I'm not sure what we'd do if he were to lose his job. I don't even want to think about it!
Kaybri has been busy with her new singing class. Its been nice to get her out with a big group of girls her age since she doesn't have anyone her age at home anymore. Between singing and daycare, she stays pretty busy and, might I add, pretty sassy. I guess that's to be expected with a 3 year old girl, right?
As for me, just work. That's enough to keep me busy. I always forget how mind consuming a new job is. You never just clock out and leave. You replay the day through your head and critique yourself on everything. I've been there two months and I have several more months of training. Bring on the hysteria. I'm bound to lose my mind before its all done but it will definitely be worth it! :)
In other news, my sister Kelsie tied the knot on the 14th. The wedding turned out really nice. Especially the luncheon that followed (always my favorite part). They had a head table where people toasted the newlyweds and they served us our meal and pushed around a little dessert cart. It was not your typical Utah wedding luncheon. It was really classy. Congratulations to Paul and Kelsie!!!
What else?..... Oh! Twilight! How could I forget?! As immature as this might make me seem, Tandi and I went to Twilight Friday night and stood in the cold for almost an hour before getting in. It was ridiculous but it was worth it. How was it? Not nearly as good as the books, but still good. Worth the frost bite ;)

Six Months Later...

Six months ago today we were busy loading our car with medical supplies, signing Do Not Resuscitate orders and loading Brody in an ambulance bound for home where he was to live out the remainder of his life. As we pulled out of Primary's, the song "I Saw God Today" came on the radio. Joss and I shared a moment of hysterical sobbing as we followed the ambulance which felt more like a hearse that day. We never thought that Brody would only survive 48 hours once we arrived home. Sadly, it was a blessing. He was in SO much pain and was medicated enough that he was semi comatose. He wasn't our Brody.
I was sick and yet relieved to let him go. I remember dry heaving all day. I remember us allowing family to take turns having a private moment with Brody that afternoon just before he passed away. There were lots of prayers and even more tears. I think it was a day that hollowed a lot of us. But Brody's spirit was too big for this cruel world.
Friday marks six months since our Schubby Buddy, left this world behind. Six months that we have been fighting to go on with our lives. Six months of walking into an empty room with an empty bed. A broken clock that idly marks the time of 6:20. No more steady rhythm of an oxygen concentrator or his LTV ventilator. No more TV mounted to the wall playing Cars or Monsters or Spongebob over and over through the night. All that is left of his room is the charity that he has instilled in our hearts. The room is now filled with hundreds of items to be donated to Primary Children's, Ronald McDonald House and Gunnison Valley Hospital. Soon after Thanksgiving, the room will be empty again. But Brody's spirit and example will go on forever in our home. Forever in our hearts.

Tranquil Halloween

Our cute little witch. Kaybri had a good Halloween and got plenty of candy (too much). She went out to trick-or-treat with her Aunt Tandi and Tandi's friend Kandice for a while. After returning, she went out with Aunt Trista and her fiancee Scott. After that, we took a ride to my moms house and Joss' grandparents. It wasn't overly eventful but it was a good evening.

The Big 3 !!

Last Saturday was Kaybri's birthday. Because I had to work, we decided to have her party Sunday. She got so many toys!! Its kind of ridiculous when there are two HUGE toy chests in her room and we still can't get all the toys into them, but its okay. She had a really good time and loves her new things. That's all that really matters (I have pictures I'll post soon).

I guess we tend to go a little overboard on birthdays. Its not uncommon for us to spend a few hundred dollars on our kids for their birthdays (which is way outside of our budget!). Its just that when Brody was born, it seemed uncertain that he would live to see his first birthday. When it came, we knew we better celebrate it big because we didn't know if he'd be around for his 2nd or 3rd or... Needless to say, that same idea rolled over into Kaybri's birthdays too. To us, birthdays feel like a big accomplishment and not just a celebration of the day you were born.

However, that way of thinking doesn't really apply to Joss and myself. In September, I celebrated my 21st birthday... again ;) And in November Joss will be celebrating his 21st birthday again as well. The funny thing is that Joss really did forget how old he'd be next month. He truly thought he was a year younger. Man, it sucks getting old! ;)

New Job Update

For confidentiality reasons, I will never post much of happenings inside the dispatch center. I will say this--the job is interesting. I have not had a chance to take calls yet. I just listen in on those calls and observe the dispatchers in action. I have been doing a ton of reading and training. Its going well so far and I think that I will really enjoy the job.
Joss has been enjoying my new job too. Its taken some pressure off of him having two incomes instead of us depending upon his. He has been really supportive of my new job and been really good to help out all he can in Kaybri's daily activities and in some light housework. (I could really get used to his helpfulness!)
Kaybri has been such a good girl. With my returning to work, I thought it would be really hard on her for a while since I have been a stay-at-home mom for a year and a half. She taken it really well so far. Thanks in large part to my in-laws and my mom. They have been great to babysit and keep her distracted and happy while Joss and I work. Thanks guys! :)

Hurtful Remarks

I recently read a post from one of my friends (pam and rhett). It talks about her recent trip to their local toys-r-us store. Rhett has Downs Syndrome and is as cute as a button. While in the store, the girl at the checkout made some very rude and very uncalled-for comments to Pam about Rhett. I was appalled and disgusted to think that they let people like that work in a place revolved around kids of various lifestyles and backgrounds. I encourage you all to read their story and put yourself in Pam's shoes for just a moment. I pray that a day will come when people will see these special needs kids for what they are-- beautiful blessing that should never be taken for granted.

*Pam's post is dated Oct 5 under "okay seriously, why do I run into all the idiots?" (so true, Pam!)

TAG

I am- a wife and mother
I want- health and happiness for my family and friends (and some $ wouldn't hurt either!)
I have- so much to be thankful for
I wish- I could hold Brody just one more time
I hate- my new found anxiety. I am always keyed up!
I fear- losing another loved one
I hear- the sweet laughter of BOTH my kids
I search- for ways to improve the lives of those around me. I'd do anything to help.
I wonder- what Heaven is like and what Brody is doing there.
I always- regret my sarcastic nature. The last thing I want to do is offend someone.
I usually- give my opinion way more than what it is asked for.
I am not- perfect nor will I ever be.
I dance- when I have the MP3 player blasting my ear drums.
I sing- as loud as possible in the car. It is my most effective stress reliever.
I never- give myself or Joss enough credit. We may not be perfect but we have successfully done hundreds of truly amazing things in our lives.
I rarely- tell Joss how much I really appreciate the sacrifices he's made in order to bring happiness into our family. He is such an amazing husband and father and I love him so much!!
I cry- when I get frustrated. (and when Kaybri tells me that she wants to go to Heaven and visit Brody and Jesus)
I am not always- appreciative of all the opportunities I've been given in my life.
I lose- it! (If you had lost your house, your car, been forced to quit your job, and then lost your child all within a six month period, you'd probably lose it too!)
I'm confused- how anybody could make fun of a special needs child. It happens a lot and it is SO incredibly painful to see. These kids are amazing and bring with them so many blessings. Not many things anger me more than this!
I need- a nap. I came home sick from work and I feel awful but can't sleep.
I should- be at work. I am shaky and feel yucky but I feel so useless and ashamed by coming home sick. I hate when I feel like I might have let someone down.
I dream- of a world in which children are not sick or abused. A world where less than great parents could realize the blessings that only a child can bring.
I TAG- anyone who would like to share a little about themselves with us (its quite therapeutic)

Crandall Canyon Memorial

This week I attended POST (Peace Officer Standards and Training) in Price. I actually learned quite a bit from the class. At night it was quite difficult for my co-workers and myself to find anything to do. Price is a little boring. The second night we were there, we decided to take a trip just South of Price to visit the Crandall Canyon Mine. I'm sure everyone remembers holding their breath last August as the news headlines told the story of these six men trapped miles under ground. And also how the story became more tragic when three of the rescuers trying to reach them were also trapped. Incredibly tragic.... The memorials set up in honor of these men was really amazing. It was sort of eerie and peaceful at the same time. Here are some pics:
Huntington Cemetery: Heroes Among Us

Near the trailhead at Crandall Canyon Mine: You are now entering sacred ground dedicated to the men who died in the Crandall Canyon Mine disaster of August 6, 2007 and who remain forever buried in this mountain... walk with respect. reflect in grace.The bench of one rescuer reads: Greater love hath no man than this: that a man lay down his life for his friends ... John 15:13
6 engraved headstones for the miners and 3 engraved benches for the rescuers

Update

Its been a while since I've updated. We've been quite busy. First with trying to potty train Kaybri. I trained myself to take her every thirty minutes but she didn't quite get it. We decided to wait a couple more months. I try to remind myself that she has been through an awful lot the past few months.

We've also been busy with our jobs. I began training this week for my sweet new job. Its a little overwhelming but I'm so excited for it all. Joss has been busy working all he can except that the mine had some issues and Joss has been off since Friday night. Hopefully things will be back to normal tomorrow.

Other than that, not much going on. I'm working on getting all the pics off my cell phone and into my email so I can post a slideshow of them. Hopefully I'll have it done soon.

Also, I just wanted to update everyone about our donation project. Things are still going well and we appreciate everyone's support with this. It means so much! For those of you who may not know the details, it is in a previous entry posted in July titled Giving Back. You can find this quickly by typing Giving Back into the search column on the upper left of the blog page. We are anticipating gathering items through Thankgiving weekend then deliver it all the next week. Again, a big thanks to everyone involved!

Dispatcher

Its official! After nearly 4 months of testing, interviews and thorough background checks, I have officially been offered the job. I will start in a few weeks and I'm really excited to be able to help others. I just want to thank all of you who were references for me. I really appreciate it!! I know I couldn't have got this far without you!!

Vagus Nerve

So after Kaybri's whole ordeal last week, we sought out two different doctors for answers and they seem to agree that what had happened to cause her fainting was a Vagus Nerve Stimulation. The Vagus Nerve runs from the brain stem down through the neck and eventually reaching the abdomen. When she threw up, it stimulated this nerve causing the heart to slow down and then for her to faint. We've learned that many factors can stimulate this nerve such as persistent hiccups, vomiting, rapid swallowing, stress, difficult bowel movement, urination and more. These things can possibly cause her heart to slow or even, in rare cases, stop. At this point, the doctors do not seem overly concerned. The only thing that appears to cause this stimulation in Kaybri is vomiting. There doesn't seem to be any necessary treatments or anything. Our best suggestion is to simply lay her flat with her chin up (to give her a good airway) and let her heart rate pick up. If the heart stops (although it is unlikely) initiate CPR and call 911. . . Just another thing to keep us on our toes I guess!

Another Engagement

Sunday I received a phone call from my sister, Kelsie, announcing her engagement to her boyfriend, Paul. She is currently living in Cedar City going to school and that is where they met. I really don't have many details to share at this point, but I'm pretty sure I am going to be one busy person this fall with all the wedding planning but that is okay. I'm excited for them!

CONGRATULATIONS TO PAUL & KELSIE!!

Shaky Hands

With Joss' family, we gathered last night for a small town country concert. Trista and her boyfriend Scott arrived several minutes late. They were both blushing. I told them not to be embarrassed, that it hadn't really started yet and that they didn't miss anything. Trista just laughed and looked down anxiously at her very shaky hands. A beautiful diamond ring on her finger (the picture doesn't do it justice!) Congratulations to Trista and Scott on their engagement. I hope Trista might be able to find time to start her own blog and share the whole story of the proposal with us. (hint hint, Trista!)

Ambulance Ride

Yesterday I was quite sick and had symptoms of stomach flu. It came on VERY fast and today I felt quite a bit better but still had the "hang-over" type of feeling. I finally managed to get in the shower around 11 AM. During my shower, Joss burst through the door with Kaybri in his arms and she was vomiting. I felt really bad that I had past on whatever stomach bug I had been dealing with. Just then, she began to fade out of consciousness. Joss shook her a little to awaken her and she puked a little more and fainted again. All at once she turned a blue/gray color (one color I know all too well from experiences with Brody). We called 911 and an ambulance soon arrived and rushed her to the hospital. Joss rode with and I trailed behind in the car. When I arrived, she was awake and seemed to be feeling a little better. They ran blood tests and determined that she didn't have any bacteria or viral illness. They proceeded to do a CT Scan of her brain which came back clear. Then they listened to her heart but didn't do any formal testing. We were released to take her home. She was feeling much better but we still don't know why it happened and whether or not we can expect this type of thing to happen again... As she lay in Joss' arms unconscious and blue, we couldn't help but think of Brody and wonder if he was trying to call her home to heaven. She looked HORRIBLE! As of right now, she is playing and eating and acts as though nothing ever happened. I'm oddly disturbed by the fact that they didn't find any cause for concern. My instincts tell me otherwise! This incident was very unexplainable and I can't help but feel that it will likely happen again. Lets hope I'm wrong!!

Kaybri's Struggles

Last week marked 3 months since Brody died. The past week or so has been quite difficult on our family. We've all been a little edgy and easily discouraged. I guess that is to be expected. The hardest part of all is watching Kaybri struggle with everything. She has been easily upset the past week. She goes through unexplained crying spells and has a hard time leaving mine or Joss' side. Its really heartbreaking to see. The worst part is that I have no idea how to help her. We have always been sure to discuss Brody with her often to keep his memory alive. In his room, his bed is still made up with the same blankets as the night he died. Kaybri has asked me if she can sit in his bed for a while and I let her in hopes that it will help her feel some peace. She frequently asks to go to the cemetery to visit his grave and so, of course, we do. I'm just not sure what to do for her poor little broken heart. Help! :(

Staying Busy...

The past couple weeks have been filled with us making the early arrangements for our special project--our donation to Primary's, RMH, and Gunnison Hospital. We have a long way to go but things are starting out really well. I want everyone to know how much I appreciate their eagerness to help out. Above is a pic of just a few of the journals we made by covering some plain notebooks. As for us, things have been going alright. Joss has been working really hard. Usually 12 hour days. This week he has been helping a friend who owns a towing business with a few of his tows. So Joss has been especially wiped out. And when he's not doing all that, he is working to lay tile in the house. The poor guy is overworked!! Kaybri has been growing up so fast and learning so much. What a smarty! She already knows all her colors, can count to 10 (except she always skips 6) and knows some of the alphabet. I know that its not uncommon for two year olds to know all these things but I still have to brag her up! :) As for me, I haven't really had a lot going on. My sister in law talked me into reading the Twilight Series. Vampires and all that Science Fiction stuff is not for me, but I love these books. They are much better than what I was expecting. Other than that, I'm not up to much. I'm still anxiously waiting to find out about the 911 dispatcher position. Its been 3 months and they are still not done with background checks. There were two open positions. One person was selected last week so I'm hoping I'll hear soon--one way or the other.

So, we're just doing what we can to stay busy. Nothing will change how much we miss Brody. We are doing what we can to incorporate him into our daily lives. I think its going well. The days seem easier sometimes. However, when we have bad days, they somehow seem worse, but as long as his memory stays so strong, that is alright with me!

Giving Back

Memories are the glue that holds you together after losing someone you love. I wish to say thank you to the hundreds of people in the medical industry who helped to make those memories possible. I know that I will never be able to repay them for all they have done to give us four incredible years with Brody, but I'd like to try. We are excited to announce that we are planning a service project to donate items to Primary Children's Hospital, Gunnison Valley Hospital, and the Ronald McDonald House. We just want to do whatever we can to help out sick children and their families. We anticipate to donate twice a year, May 26 (Brody's birthday) and November 26 (around Thanksgiving). In order to gather things for Novembers donation, we are starting now. Unfortantely, we can not do it alone. Anyone who is interested in getting involved, please contact me by leaving a comment or by email at crazy_amie83@hotmail.com Here is a list of items we will be collecting for our donation:

Primary Children's Hospital (Ped ICU):
-Games: card, board, electronic
-Books: for reading levels infant to young adult
-Blankets: both fleece and non-fleece (none made entirely of red, it bleeds into other fabrics)
-Journals: notebooks decorated with fabric, scrapbook paper, ribbon and other embellishments
-Art Supplies: paper, washable markers, paints, glue, crayons, etc.

Ronald McDonald House Charities:
-Hygiene items: shampoo, body wash, toothbrush, tissue paper, etc.
-Cleaning supplies: laundry detergent, disinfectants, dish soap, paper towels, etc.

Gunnison Valley Hospital:
-Blankets: both fleece and non-fleece of any color to be donated to children at the hospital
-Toys: for both infants and young children

Zoo, Temple Square, & The Mayan

Last Saturday we took a trip up to Salt Lake with Joss' family. We started out at the zoo. Then we went to Temple Square and then ended the day at the Mayan restaurant for dinner. It was so much fun! We all went home utterly exhausted, but it was a good time! Here are a few pics from our day:

Kaybri Jo striking a pose in Temple Square

Joss and Kaybri hanging out with a gorilla














Me and Kaybri taking a break from the heat





Joss' sister Trista and her boyfriend Scott near the zoo entrance











Joss' sister Tandi and brother Skylar accompany Kaybri on the zoo carousel

Sweet Memories

Adapting?

Last night I was very sad as I started thinking that I might be adjusting to only having one child in the home. Afraid that I was getting used to only dressing one child. Only washing one child's clothes. Only kissing one child goodnight. I hate thinking that I am adapting!! I'd give anything to be up 5x night giving medications or starting the Cars DVD over again. However, this morning as the alarm went off, I began to head for Brody's room to check on him like I used to do each and every morning. I didn't get as far as the hallway when I realized his room is empty. Not a bedroom but more like a shrine of what used to be. The bed and blankets are still on the bed from 7 weeks ago. His wheelchair, pictures, and toys on display around the room. From my bedroom doorway, I quickly realized that I couldn't see that familiar glow of his TV screen from down the hall. Or hear the rhythmic sound of the ventilator. Just cold, dark silence. It was in that moment that I realized that I will never adapt to his absence. And that's okay with me. I've said it before-- if losing the pain means I have to lose the memory, I'll keep the pain forever.

Difficult Days Bring Storms of Tears

This past week has been especially difficult for me. Wednesday marked 6 weeks since Brody died and the day also brought more bad news. We discovered that a family member has a potentially serious illness. Out of respect to this person and at their request, I will not discuss this in any more detail. The following days brought a lot of tears. Tears for Brody. I've found that I can not fight the tears off. I wept like a baby in church a couple weeks ago for no reason whatsoever. Another time I was in Wal Mart and just began to bawl as I stood next to the bath towels. Again, with no association to anything in particular. Yesterday had to be the worst. We were role playing in our Sunday School class (Marriage and Family Relations). We saw the chair that had "Death of a Loved One" posted on it and was careful to avoid that seat. As the role playing went forward, the topic soon turned to loss of a child and all eyes were on Joss and I. We began to cry. Joss stood up and excused himself from the room. I remained there in heavy tears as people talked about us and to us. It was totally harmless and was not meant to be directed at us, but it just went that direction. It was difficult to handle. But I am really appreciative of the members in that class who helped us to let our emotions show. We went straight to the cemetery after church and wept. Kaybri ran around chasing butterflies next to Brody's grave. Thank heavens for her! She helps keep us going. We love her and Brody so much and always will!

Keeping Busy!!

Saturday we had a girls' day. Trista, Lori, Kaybri and I went to Provo to shop. It was such a good time :) Yesterday, Tandi and I went back to Provo. She had missed the previous trip because of work. We took Tandi's new car and she drove. This was her first time ever driving in the city or in an area where the freeway has more than 2 lanes. She did surprisingly well. We did some quick shopping and had lunch then headed back home. I then had to run around gathering papers, making copies and having things notarized so that I could return my 32 page FBI background papers for the potential Dispatcher job. (A huge thank you to all those of you who have agreed to be listed as personal references of mine on that all-important background check!!)... Joss has been super busy with work. The poor guy spent his whole afternoon and evening sleeping on the couch. I'm trying to convince him not to work himself into exhaustion but he is being a little stubborn. He argues that he has to work hard so that he can save up enough to buy a boat in time for next summer (who are we kidding, we'll probably never afford a boat)... Kaybri has been spending the majority of her time at Grandma's house. She loves playing with all the daycare kids. Sunday, after church, we visited the cemetery for a minute and Kaybri was trying to see Brody in the sky (in Heaven). We told her that you can't SEE Brody anymore but you can FEEL him--in your heart! Later in the day, she got really excited and was trying to get Joss' attention. She said "Daddy, Daddy! Brody's in my heart!" It was so cute. I love her sweet innocence and that she refuses to forget about Brody although he is not physically in our presence. However, she was playing in her room alone the other night and she was talking to someone and giggling. When Joss went to investigate, she just looked at him and grinned mischievously. I don't know, perhaps he is still in our presence afterall.

Father's Day

Yesterday we went to Fishlake and rented a fishing boat. We went out on the water for about 3 hours. We had no luck catching any fish but it was sure relaxing anyway. We then left and headed south around Otter Creek Res, through Kingston, past Paiute Res, making our way home. It was a really nice day. Last night, we went to the Manti temple grounds for the Mormon Miracle Pageant with Joss' family. I'm embarrassed to say that this was the first time I've ever been. Its a shame that its only 40 minutes away and I've never been. I really enjoyed it! It was better than I expected. I highly recommend it! Kaybri was a little upset that we didn't get to actually go inside the temple. I promised her we'd take her inside one day real soon... When Joss and I go to seal our family this fall :) Today, we are at Joss' parents' house for dinner. Its been a pretty good weekend. Yesterday marked one month since Brody left us. Its been hard but we are getting by. Thank heavens for our family, friends and our faith. We are grateful to have them all in our lives.

Normal People Doing Normal Things

Nothing exciting--No health updates or stories of midnight life flight. Just stories of normal people doing normal people things. We went camping at Fishlake last weekend with Joss' grandparents, Niles and Glenna. It was fun but COLD. The first time in our new ward Sunday, the first speaker spoke about loss of a loved one and to know better than to blame yourself. The next speaker spoke about sealing your families in the temple. We felt like they were both speaking directly to us. Tuesday, I had testing for this job I am trying to get--a 911 dispatcher. Aptitude and typing tests. I passed and am scheduled to be one of many interviews held next Wednesday. I then went test driving cars with Tandi. She is in the market for something new. Its always fun to get to hot rod someone else's car around. That night, Joss and I had dinner with friends, Jed and Selanie at their house. Our kids played pretty well together. It was a nice evening. Other than that, nothing new. Although we are still busy, it just doesn't feel the same. Its weird to just get up and walk out to the car and drive off. No advanced planning, no medical equipment.... No Brody :( But on the day to day, we are actually doing pretty well. We have more peace and faith than I thought we would. So we just keep hanging on and leaning on each other. As I've always said--One day at a time.

Tag! You're It!

Okay, I've been tagged. Here's how to play the game of tag. Post these rules on your blog. List 3 Joys, 3 Fears, 3 Goals, 3 Current Obsessions/Collections, 3 Random Surprising Fact About Me. Then tag 5 others at the end of your blog by leaving their names.
3 Joys:
Joss--The love of my life. My rock. My protector. My saving grace. My better half. He really does complete me. :)
Brody--My angel. He taught me so much about myself and I miss him SO much.
Kaybri--My little firecracker! Never a dull moment. She keeps me on my toes!
3 Fears:
Failure--I'm afraid one day I'll wake up and wish I'd done things differently.
Heights--I can jump high enough to scare myself. And I hate others being up high too!
New Things--I'm really hesitant to try new things. I think this goes back to my fear of failure.
3 Goals:
Temple--Joss and I have been working toward sealing our family in the temple. We are planning for August but have not set a date. This is my top priority by far!! I only wish we had done it sooner.
Career--I really enjoy working and look forward to returning to the workforce soon. I have a couple great jobs in mind to try for right away. If I don't get these jobs, I will likely return to school and get a degree--maybe in something medically related.
Charity--I fully intend to honor Brody by giving back. I want to do what I can to return thanks to all the hospitals and community groups that have helped us out so much over the years. I've also considered becoming a 911 dispatcher and/or an EMT. I just want to help.
3 Current Obsessions/Collections:
(I don't think this really applies to me. I don't consider myself to be an obsessive person and I really don't collect much--except maybe a little dust around the house)
3 Random Surprising Facts about Me:
Depression--I was quite depressed in high school. I remember contemplating suicide at one point. My depression didn't last long and one day I just realized that I have so much to live for. I look back on it and wonder what the heck could have been running through my mind. Look at all I would've missed.
Wild--I partied a bit in school. Mostly my Junior year. I think this goes hand-in-hand with that bought of depression I mentioned.
Not a Housewife--I know I've been playing the part for years but I'm no Betty Crocker. I don't bake and I don't sew. I have enjoyed being a caregiver for my family, but the rest I could do without. I'd much rather work a 14 hour day than have to bake a bunch of cupcakes for a birthday party. No thank you!!

This is the part where I tag 5 people so I'm going to call out... Kelsie, Nancy, Tanya, Jenn, and Jami and anyone else who would like to participate. Even if you don't have a blog, it would be fun to see your lists as a comment on my blog. :)

Convenience Doesn't Always Make Things Easier

Joss, Kaybri and myself went with friends camping this past weekend. The closest thing to camping that we've done in years is when we stayed in a camp trailer in Primary Children's RV Parking for several weeks last fall. Not exactly my idea of a relaxing vacation. This weekend, we were able to go fishing and four-wheeling. It was really nice to escape the world momentarily. Kaybri caught her first fish and loved it! A HUGE thank you to Joss' parents for giving us their camp trailer as a gift after Brody passed away. Its been a blast so far! We anticipate going again this coming weekend.

Its been really weird to just get up and go somewhere with limited planning. Joss and I are strange because we actually really miss the hospital scene. Joss' sister was a little upset to her stomach last week and we were practically begging her to let us take her to the hospital. Its been such a huge lifestyle change. I guess you can say that things are a little more convenient, but I wouldn't say they are any easier. We miss him so much and think of him constantly. However, we feel like he is with us in many of our daily activities. Even if he's not right by our side physically, we know he is spiritually. And he's always in our hearts and in our prayers.

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.

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.

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.

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.

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.

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.

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.

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

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".

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. :)

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.

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!

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.

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!!

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!

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

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.

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.

Peacefully Medicated

Brody is resting peacefully right now under heavy sedation. I've hardly seen his eyes today. It seems that when he is awake at all he is storming. And there is still some question as to whether these storms are as painful to him as they appear. But at least, for a moment, he appears to finally be comfortable.
I met briefly with a member of the hospital's palliative care team who call themselves the Rainbow Kids. Its a group of 5 people who are here to "offer comfort, advice, and support to families, wherever the path may lead". They said they are not affiliated with any unit of the hospital. They are, in part, here to help bridge the communications gap between families and caregivers. And to see that our wishes for our child's care are honored.
I miss my family being whole. I hate that I haven't seen Kaybri's precious face for nearly two weeks. Its so hard and unfair. I always try to put on a happy face and remain as strong and steady as possible but I am breaking down. I continue to pray often. And from there, what else can I do?

"Stormy" Night

The "storms" came and went all through the night, making it nearly impossible for Brody to get any rest. Yesterday, the sedatives were ordered to be given as needed. Today, the doctors decided to increase the doses and to order them to be given around the clock. I've made it very clear that, if nothing else, just keep him comfortable. Last night as I left the hospital in tears, I turned on my car as a country song started on the radio. Rascal Flatts "Everyday". With its strong lyrics saying "Everyday, you save my life". And immediately after, George Straits "One Night at a Time". I know these are meant to be romantic songs but the lyrics stood out strong and made me feel that, at least for now, we need to keep on fighting for him. To work hard everyday to save his life and take it one night at a time.

The Inevitable Decision

Brody is being given multiple sedatives and its not really helping his "storms". His moments of peace are almost non-existent tonight. My heart aches.
Tonight I was approached by a doctor with some very serious thoughts. She wanted us to know that it is our right to end his life and also our right to keep fighting. We logically discussed that he has several severe and immediately life threatening conditions. She said that we need to know that its alright for us to choose to cancel upcoming surgeries and clinic appointments and make the most of what little time we have left. She was not pushy in any way and I was not offended by what she had to say. She was very thoughtful....
I am terrified that sooner or later Joss and I are ultimately going to have to decide whether we let Brody live or die. The worst decision any parent should ever have to make. Do we allow him to suffer day in and day out or do we watch him die and do nothing? Is there really a right answer?

Thalamic Storms

Brody's agitation has been increasing throughout the day. The assumption was that his belly was hurting due to gas or stool. We've been actively treating for that, but his agitation level has not come down. Then, as Brody was having one of his spells, the Resident Doctor stood and watched. He seemed to be in deep thought and quickly left to go find the PICU Attending Physician. A few of them rallied around for a few minutes and concluded that Brody's agitation has nothing to do with his belly. But rather his brain. They call it Thalamic Storms. I don't know much about it. It was described to me as sudden and often severe spells of high blood pressure, increased heart rate, hypothermia or fever, and general signs of pain. Basically, the brain tricks the nervous system into responding as if there is severe pain or trauma. However, the body doesn't actually feel pain at all. Strange, I know. And this condition is likely permanent...but manageable. Typically, you respond to these "storms" with sedatives to get the brain to ease up on the nervous system. The Attending said that they absolutely will not release us until we get to the bottom of this and find someway to manage these "storms". I will try to find more info on Thalamic Storms and update the blog as soon as I do.

Painful for Him, Painful for Me

Although I feel my complaints were justified, I still feel selfish for whining about our discharge plans. Some parents will never get the option to take their kids home, if you know what I mean. We are lucky we get the option. He's been so close to death so many times. I really am grateful that we still have him in our lives. But I am still upset that his pain and agitation isn't being addressed properly. I know that Brody will never be healthy and that, well, his days are numbered. But does that make him less deserving of peace and comfort than you or I? Should he have to just deal with the pain? Above all, I just want to make him as comfortable as possible until the day our angel returns to heaven. I'm not expecting a full recovery or even a long life. I know better. I hate thinking that what may be the last weeks of his life will be filled with pain and discontent. Its painful for me to think about. I just want to see him at peace.

The Child First and Always?

This hospital is great and I'm grateful for the services they provide but the past few days have been a joke. A total let down. Besides getting all the supplies ordered and still not being able to figure out insurance claims for our discharge... Today, Brody's blood pressure went high again. His stomach has been giving him so much pain that he holds his breath and his heart rate doubles. He has been sleeping more. Sweating more. And he went several hours without urinating. When the resident doc came in to address these concerns, in the same conversation, he wanted to confirm that we were still leaving tonight. Hello?! And when I try to discuss my concerns, they still urge us to go home and just go to our local hospital and asked to be transported back if it continues to be an issue. At this point, its a given that there are going to be immediate issues. Physically, he's not tolerating his tube feedings well. Not the feeds but just having the tubes down there creates pain. And they said that they can't give him anything for it. Basically that he'll just have to deal with it. Good thing its temporary until he gets his G Tube placed next week. Oh wait! That's right. The GI surgeons told me they can't get him in until May 22. And to expect at least a week here to recover. Which puts him here for his birthday May 26. What happened to doing it next Monday?! And what about the hospital's motto: The Child First and Always? Don't get me wrong. I love this hospital dearly. My home away from home. Its just that we are usually taken such good care of but right now, I feel a little let down.

Insurance Set-Backs

We are working on gathering up various equipment and supplies so that we might still go home today. I'm starting to worry about where I'm going to put it all. There is so much stuff. And we've already run into one serious problem. Our insurance won't cover the formula he needs. And because of his kidney failure, he really doesn't have any other options for formula. Plus, its super expensive and has to be special ordered. So we are going to be fighting with the insurance company and I'm concerned that we won't have the problem resolved in time to go home today. But they might surprise us. I'll keep my fingers crossed.

Familiar Faces

As if being here ourselves isn't bad enough, we have recently spoken to a couple families from our community who also have children here at the hospital. One family for complications of a tonsillectomy. The others for an unknown reason, maybe heart problems. They don't know yet. Unfortunately, we see people we know from our area nearly every time we are here. Its sad to know that there are so many families that have to go through such trials. I hope these families know that our thoughts and prayers are with them.

Minor problems

Yesterday Brody had several small problems with various things. We were glad we were here. His feeding tube had trouble going down his throat and we almost couldn't place it. His blood pressures were on the rise. We soon learned that his BP patch had fallen off. Simply replacing it seems to have helped. And he's been quit agitated. More than likely due to gas pressure in his tummy. His heart rate would get really high and he would tighten up and try to hold his breath. Poor kid. There isn't much of a solution for that right now. We just have to wait for his surgery when we "fix" everything. So, as of right now, our plan is to go home tomorrow or Tuesday. I think we are now ok with this and feel like we can handle it on our own. But I guess we'll see what tomorrow brings.
Thank you to everyone for your comments, prayers and continued support. You are really helping to keep us going strong.

Happy to Stay...For Now

I'm glad we didn't have to be evicted from our hospital space today. Brody's blood pressure is up a little and he'll need some medication adjustments. Also, his potassium is a little high so we'll have to address that. His Ph probe is nearly done and I bet Brody will be glad to be able to have more in his tummy than apple juice. Other than that, we're just hanging out. Waiting for all the loose ends to come together.

Getting the Boot?

Shortly after my last post, I returned to Brody's bedside and was informed that he was going home tomorrow. Brody still has multiple health concerns that have not been fully addressed. Also, we were anticipating to meet with surgeons early next week to discuss the various GI procedures we need to consider. I told the PICU team that he just isn't ready and doesn't have the necessary equipment. They told me they would "make it work". Joss arrived today and was made it clear that we don't feel Brody is ready and we are NOT going home under these conditions. His emotions took over and he started saying things like, he's already held his sons lifeless body once and he'll be damned if he'll do it again just to clear up a bed space. They quickly backed off and said we'd wait until we met with the surgeons and go from there. Through it all, Joss was good not to raise his voice and handled himself pretty well. He soon apologized for letting letting loose, but at least he got our point across and got them to listen. :)

Surgery Delays

Despite earlier predictions, Brody will not be getting surgery on Monday. In fact, the surgeon I spoke to today said they'd be surprised if he'd get it at all next week. So we're looking more into the first part of May. At one point, we were told to anticipate him still getting his scheduled VEPTR procedure May 8, but now that would put those surgeries within a couple days of each other and it just seems a little risky. So, at a cost of roughly $6,000 a day... we wait!

Slow to Go

The doctors tell me that Brody has a slow GI tract. I was not surprised since he's always been a little "slow to go". It appears that his stomach is tilted and his intestines are twisted. He doesn't have any bowel obstructions or anything but he has potential for problems in the future. So, in addition to a G Tube placement Mon or Tues, he will likely have his stomach and intestines repositioned. Its unlikely he'll have the Nissin procedure but we haven't ruled it out yet. None of these GI issues seem to be bothering him much. Last night, he laughed at me. The full belly shake, big toothy grin, and the twinkle in his eye. It may have been gas or something but I'm going to take credit for it anyway. Either way, it was nice to see what resembled happiness. And that moment alone makes this horrible experience all worth it in the end.

"PICU Perspective"

This hospital gets to you. You can't help it. As one friend recently described it "The PICU Perspective". To me, its this realization of what matters most in life. And all of the silly materialistic things we can leave behind. Its this overwhelming feeling of gratitude. The unspoken bond you feel with other parents. The ever increasing faith you have in God. The anxiety of knowing that each day is uncertain. Its nights of never ending prayers. A river of tears. And sometimes the sorrow of letting go... We've met some amazing families in the PICU. Our thoughts and prayers are with them today and always.

Tests Before We Make Decisions

Yesterday it was decided that Brody would benefit from running a few tests prior to making a decision as to how we'll be feeding him at home. He will have a 24 hr Ph Probe placed on Friday. He will also need an upper GI test which means they will take him into radiology, put dye in his feeding tube and watch the course it takes as it digests. And if we opt for a surgically placed G Tube, he will likely go for surgery Monday. He may additionally require a Nissin which is basically just a procedure to block a portion of the GI tract at the bottom of the esophagus to ensure he won't have issues with acid reflux or vomiting. As for yesterday's Rehab consult, their great conclusion was, "lets watch and see what he does". Thank you much! Really going out on a limb there, arent' ya?! (Sorry, I get a little irritated with docs who insist on billing me hundreds of dollars for consults, but don't do a darn thing) But today, Physical Therapy did a better assesment and has come up with some ideas. Aside from the lack of a swallow reflex, we've learned of 2 other main areas of the body that have been impacted due to brain injury. 1) His muscle tone and 2) His sensitivity to physical stimulation. His muscle tone used to be low, meaning he was floppy and weak. Now it is about normal although he still doesn't move much. As for stimulation, he used to hate to be touched. Now he aknowledges he is being touched but doesn't seem to mind it at all. One suggestion PT has is to pick him up and hold him. This is a hard concept for Joss and I where Brody always hated to be held before. But now it may be an enjoyable experience for him--and us :)
At home, Joss has finally got all our belongings out of our old house. He said that's the easy part. Now he has to try to put everything away. He's had a lot of help from family and friends. Again, we're really grateful to all them for their ongoing support.

Beating all Odds and Moving Forward

Brody is back on his home ventilator and doing well. Today we are anticipating several consults from different specialties. Rehab and Physical Therapy will help us to know what things we can do to maximize his recovery. GI will assess and give us options for long term feeding. More than likely a "G Tube" which will go directly through the abdominal wall and into the stomach. The ICU is trying to get us set to go home soon, but GI said they may recommend a scope to check for any acid reflux before he leaves and he'll have to be off of certain meds for 72 hours prior to that. So we may still be a few days out but we're heading in the right direction. And I'm very pleased to see how comfortable he has seemed. He really looks quite peaceful.
Interesting Factoid: Its said that the survival rate for a full arrest is about 9%. Talk about defying all odds! What a trooper!
On the home front, Joss has been busy between work and getting our home moved from one place to another. He's had lots of help from the community and our family. We're so thankful to have them :) And Kaybri has been good to try to help Joss move the heavy furniture and has already picked out the room she wants. She's such a sweetie.

The Results are In

MRI results confirmed what we already knew in our hearts. The brain damage is real and most likely permanent. They said they are pleased that the damage is only in various sections of the brain and not widespread. However, they are unable to give us a clear idea of what the future may hold. They tell us that with regular rehab and physical therapy, he may improve slightly over the coming month and years. But for now, what you see is what you get. He isn't very active but does move extremities on occasion. He sleeps a lot but does wake to a semi-alert state and look around the room. He is drooling a bit. They had him do a "swallow study" and he failed it. He couldn't swallow well and the blue dye was soon sucked from his trachea--meaning that the part of the brain that controls his ability to swallow is damaged and that he will aspirate what he takes by mouth, putting that directly into the lungs. So he'll have to be tube fed for now, up the nose and down the throat directly into his intestines. They were glad to see he had a strong gag reflex and was able to cough which suggests he may regain his ability to eat by mouth. With his brain injury, there is a chance that the damaged parts of the brain may trigger seizures later on. So, we have MRI results but they don't tell us anything concrete. Only time will tell. As for the functions of his other major organ, they are slowly doing better and better. The docs actually told us that we may go home in a few days. . .
I'm pained to see Brody's overall health is diminishing. But I know that his soul has never been so alive. He has touched so many lives. He's here on this earth for us. To teach us to love and learn and never take a moment for granted. He's our guardian angel and we love him dearly!

Thank you to everyone for prayers and warm wishes. Its amazing to see how many lives our sweet angel boy has touched....
This morning Brody is still sleeping a lot. If his brain damage is reversible at all, sleep is going to be the best way to help it heal. The MRI results are still pending. It has to be a neuro-radiologist to read it and we hear they were short-handed this weekend. We anticipate results tomorrow. Heart, kidneys, liver, respiratory--they are all improving little by little with each passing day. I truly think having so much family and friends around him has contributed to what bit of recovery we have seen. And never underestimate the power of priesthood blessings.
If there is one think I can plead with all of you, learn as much first aid as you can. Although Brody has medical issues, we never saw this coming. Had it not been for us doing CPR, Brody would be only a memory. Also, its National Donate Life Month. I encourage you to consider signing up to become organ donors. Its said that one donor can save 7 lives. And most importantly, don't take life for granted. Log off now and go hug your kids!!

Offering no explanation

I know some of you are anxiously awaiting MRI results. So are we. Still no news. No significant changes in Brody either. Its quite apparent that there is some degree of brain damage. The question is how much and whether its reversible or permanent. Only time will tell. And still no answer to what may have triggered all this. Its doubtful we'll get an answer at all. Many theories but nothing concrete. So, as frustrating as it is, we'll just continue to wait.

No news

Brody has now had both the EKG and the MRI. But they said we would have to wait until the radiologists looked at it and typed a report. We were hoping to get news tonight. It may not be until morning. He is still quite out of it. So, as much as I'd like to be posting any kind of update right now, I just don't have any news.

Uncertain

Brody's body movements seem slightly more deliberate today although his movements are slower and fewer. However, he is sleeping more. When he does open his eyes, he just has this absent stare and won't blink for long periods of time. Despite yesterdays hopes, it seems his neurological state is diminishing. We are anticipating an MRI at some point today as we reach that crucial 72 hour mark. His kidney function is not improving but is not worsening much. They will also be doing an EKG today to determine the function of the left ventricle of his heart. He has always had a very slight murmur but it has become more apparent since the resuscitation. And his liver has been enlarged which correlates with his questionable heart problems. Brody has always been such a little fighter. He's already held on years longer than anyone expected. Hopes and Prayers.... A huge thank you to all our friends and family for their love and support.

Wait and wait some more

His happy movements are questionable. One moment they look like just that--happy movements. Other times it seems involuntary and maybe painful. Its really hard to say. He is very slowly becoming more aware of his surroundings. But we are only about 48 hours out. They don't want to assume anything until after we've reached that 72 hour mark. As for his kidneys, they seem to be struggling the most which is to be expected since he was already rapidly approaching end stage renal failure. However, at this point they just want to watch his kidney function and not start dialysis just yet. For now, we just wait.

My mom just found me as I was posting the last blog. Brody is awake and smiling and doing his usual stimming. It seems for a brief moment that things are looking up. But I have to run cuz I wouldn't miss it for the world!!!

Brody is more alert this morning and his pupils are reacting faster to light. He is tracking more (moving eyes left to right) instead of that absent stare where he seems to look through you. His movements seem to be mostly involuntary at this point...similar to when you are lying in bed nearly asleep and you suddenly kick or have a spasm. As for his kidneys, the function appears to be trending downward still. We will meet with Nephrology to discuss possibly starting dialysis and/or begin screening family for donor matches. We are less than 48 hours out since the horrific event and we just don't yet know how substantial his injuries really are. We are hopefully pessimistic. And the most unsettling thing is that we still do not know what caused the event to begin with. A blockage in his trach... a severe asthma attack... a seizure? Although Joss did everything exactly as we are trained to do, he still blames himself and is really having a hard time. Prayers all around!

Doubtfully Optimistic

CT Scans last night showed no significant damage at this point. However, it could take up to 72 hours before we know the full extent of his injuries. He is sleeping a lot without sedation which concerns us. But he is somewhat responsive to being touched and things. He occasionally opens his eyes and he does move his extremities. As of this morning, his pupils are finally responding to light, dilating appropriately. Like I said, we really just don't know what kind of damage if any has been done to his brain. As for his poor kidneys... Not so good. His kidney function has decreased greatly and we are discussing starting dialysis very soon if things don't perk up. He is having a blood transfusion right now and we hope that will help him to be more conscious. They say no news is good news. I guess we'll see.

Horror

Yesterday was the most horrific and traumatic day of our lives. The events keep replaying in our minds. Haunting us. Tormenting us. We had been at Primary's for a regular check-up. On the way home, we stopped in Provo to get some food to go. I went into Cafe Rio and when I came out, I could hear Joss' piercing screams. I ran to his side to find that Brody had apparently began choking. He tried to suction and couldn't get into his trachea. He immediately pulled Brody from the car and layed him on the snowy asphalt to do an emergency trach change. The trach went in briefly and came back out. We called 911 and worked together to do CPR the best we could. He went into full arrest. We worked on his lifeless blue body desperately. No heart beat, no breaths for upwards of 7 minutes before he was finally revived by paramedics at Utah Valley Hospital. He was soon transported by air back to Primary's. We were sure he wouldn't survive the flight. We contacted our families to come say goodbye. But when we arrived in the PICU, he was semi-conscious and fighting for life. There is much trauma to his body and only time will tell what his neurological state is. All we can do is PRAY!

One day at a time

Well, for now things seem to be going ok. As well as can be expected. As of Friday, Brody's labs looked slightly better than the previous few weeks. A glimmer of hope. Kidney transplant is inevitable. But if we can hold off a little longer until we can get him off of the ventilator, it would help his chances significantly. And when the time comes, our family will have to relocate to be closer to the hospital. Until then, we'll carefully monitor everything he eats and administer over a dozen meds several times a day. One day at a time.

Talk about Transplant

Today Brody had a scheduled visit to the Renal Clinic. We found that despite all our efforts, Brody's blood pressure is still very high. Today was 150/100. And that his renal function labs keep coming back with critical values, meaning his kidney function is not improving. In fact, it is worsening. In January we were told that they estimate Brody's kidney function to be about 30-35%. Today it was estimated at 25%. That great of a loss in under three months. I asked them at what point do they generally start dialysis. They said usually at 20%, but with Brody and his other health issues it would be in his best interest to skip dialysis and go straight for transplant. And with the downward trend in his kidney function, I think its coming fast. To say I'm terrified would be an understatement. Transplant is difficult enough for moderately healthy children. Let alone a child with a myriad of other serious health complications. We know through our research of Jeune Syndrome that over 90% of these children die from Respiratory or Renal failure. Brody has both at the same time. But we've come this far and there hasn't been a mountain we haven't climbed. We're not giving up without a fight!!

Busy with Blankets

As I mentioned in a prior posting, our friends, The Pearson's, are doing a service project in memory of their son, Ian, who passed away in November after heart transplant surgery. We are collecting boy blankets, girls hair accessories, and craft items for Primary Children's. Also, hygiene items and housekeeping supplies for Ronald McDonald House Charities. We decided that we would do all we could to help out. So we have been busy making blankets. Simple fleece blankets with the knotted fringe. They are inexpensive and quick to make. We'll also gather craft items. Its really nice to know that all this hard work will pay off when we donate the items in May. It will be fun to see how many of the things we donate come back around and are used by Brody during his future stays. We will collect items until Brody returns to Primary's for surgery May 8. Anybody who would like to help in any way, please just let me know. Thanks! And for more info on the project, you'll find details on the Pearson's blog. There is a link on the left side of this page. :)