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!!