Every cloud has a silver lining and rather than focus on all that has challenged Jo the last few days we will do our best to highlight the positives in what has occurred up til now.
Jo has been placed back on the ventilator (intubated) as of 0200 this morning. It was the last thing we or any of the Docs wanted to do, but it was necessary. Positives:
Jo needs oxygen support to maintain acceptable saturation levels. Positives:
Jo may need a tracheotomy after all. Positives:
Jo extended his stay at least a couple more weeks, if not longer. Positive:
The episodes he experienced the past 2 days would have been life threatening if not for the professionals at Mary Bridge. While it is a nightmare to think that he needed emergency support, and to see so many people at his bedside, when you step back you realize 10 professionals, experts in their field, are tending to your baby, what more could you ask for?
Most importantly God is in control. He knows what is happening, why it must, and how much we need Jo back. Perhaps this step back was to prevent us from moving forward too quickly. No Dr could predict the recent events, but they are learning from them, as our family will learn from this trial. Through it all Jo is fighting with God by his side and the 1000's of people praying for him.
Mom and dad are discovering strengths we did not know we had. Our children have been amazing throughout giving us strength through their unconditional love. They miss their brother so much, and have seen their parents in so much pain, I don't know how they remain so resilient. We receives texts, messages, and comments that lift us up every day. We pray bedside often. The alarms in the room can be deafening, the silence of a conversation with God brings comfort. We cannot thank you all enough, we are truly blessed, and God hasn't sent us on this journey alone.
Jojobinks we love and miss you so much. Do not be scared, you have everything you need to rest and heal. We know you are with God on this journey and it gives us some sense of peace. We must remain patient and strong for you, and we will. Rest and heal baby boy, one day at a time, one miracle at a time. We love you to the moon and back sweet angel, you've got this (superman!).
Jo was moved back to PICU today. His respiratory issues prooved to need far too much atttention than any other area in the hospital.
A coughing attack caused a heart rate spike and poor saturation numbers. A rapid response was called on the PA system, simply terrifying to think about. We were picking uo the kids from school when it occurred. Jo required immediate and substabtial supoort to stabilize, which he did.
In hindsight I'm glad we didnt see all the comotion, it would have been terrifying. He is stable but he was stable earlier today as well. The docs are watching him closely, as in the past, given time ans supervision Jo always fights back.
If you're planning on visiting please keep in mind that intensive care really limits visits to family and Jo really needs a peaceful quiet environment. Check with us first!
Jojobinks mommy and daddy are here do not be scared. God is watching over you and knows how much we need you back. Let his healing hands lay on you, rest, and fight. We love you to the moon and back sweet angel, you've got this.
Sadly Jo had an uncomfortable day/ night still struggling with coughing fits. It is extremely difficult to watch any of your kids when they are hurt, it is simply devastating to watch when he labors to breath. It is also clear the Drs are not exactly certain what is going on, and they seem to be speculating more about solutions.
He my have pneumonia, may have a viral infection, and may be still recovering from his feeding mishap. One thing is glaringly apparent, Jo is definitely uncomfortable. His cough sounds horrible, and if we don't intervene with treatment when the coughing begins it worsens to the point where he has trouble catching his breath. It is torture to watch his chest cave in with each heavy breath, and the cough sounds painful. He does recover and return to resting but it doesn't last as long as we would hope. All we can do is have faith in God and gain solace from knowing he is receiving the best care.
Jo is receiving epinephrine breathing treatments as needed (2 hours) and recently received a dose of albuterol. He was given a steroid to help with his overall recovery and is still taking ibuprofen and tylenol for the pain. During his recent episode they briefly presrcibed a mild pain reliever to help him settle down.
Mom and dad are miserable with Jo's current struggles. We recognize that recovery is typically 2 steps forward 1 back, but any kind of backward step hurts so bad. There is no greater torture than seeing your child in pain. He is fighting so hard but seeing him struggle and in battle breaks our hearts.
Today is memorial day so we offer the deepest respect to our military loved ones across the world. Your sacrifice is simply amazing to us, and we benefit so much from that sacrifice. Some of you may know that recently Jo met with soldier/ LEO friend of his to talk about the future. Jo had been struggling to find his way in the 7th grade and having trouble focusing. He could be very hard on himself when he struggled in school. At that meeting Jo shared that he wanted to be a soldier. He wanted to help people. He wanted to protect people. Jo often did this when I wasn't home and Jimmy (my autistic son) acted out towards his mom. He was no match for Jimmy's size and strength but he wasn't going to let him hurt his family, even if he didn't mean to do it. We've heard from Jo's teachers they tell us that even though he goofed around with his buddies, he always stood up for, and engaged with, kids with any disability. There is nothing a parent could ask for more than a caring, loving child who has empathy for those with challenges. Jo has always been a free spirited kid who wanted to have fun, he wanted that for everyone. I was never as proud as when he told me he wanted to be a soldier, his mother never more scared. We both know that Jo is capable of anything he set his heart to, right now he is on the battlefield in his mind. Pushing through obstacles, reconnecting broken bridges and pathways, and willing his body to a victory with the Lord by his side, thy rod and thy staff.
Jo's dreams are not lost and neither is our hope. Each time we feel weak we close our eyes and talk to God, feel his strength, and remind ourselves of all of your words of love and encouragement and it helps us get through the day. Jo is not giving up and neither are we, thank you all for everything.
Jojobinks, you are fighting so hard right now. Please try to relax and rest when you can, there are many more trials ahead. Your mother and I are right here beside you. We know what a fighter you are, and we know you will triumph given time. Let God heal you, take his hand and follow him back to us one day at a time, one miracle at a time. We love you to the moon and back sweet angel, you've got this!
Hi everyone, a quick update on Jo's breathing struggles the past few nights/ days. Jo sounds very obstructed in his airway. It has been all muscular in terms of the sounds we are hearing. Air passing through the airway with "sagging muscles" happens to some of us when we snore. It's just that Jo's is so much harder to hear considering all he has been through. Fortunately he is in the right place and they can prescribe medications we could not get at home. He just received a breathing treatment and is resting peacefully, the labored breathing has stopped and he sounds great.
Yesterday at about 730pm we had a ridiculously scary episode. We returned from a short trip to the store to find a room full of 10 people (Drs , nurses, respiratory therapist) and a red light in the hallway. I'm not sure what had happened before we arrived but clearly it wasn't good.
The professionals at Mary Bridge were on top of it and he was in recovery mode by the time we were bedside. The cause turned out to be a reflux from his feeding back up into his airway, causing a coughing spasm. According to the nurses this is very common, but when it occurs it is important to recognize it and act immediately. The scary part is that we asked the Dr. what we would have done had we been home, her response, "you would have had to call 911". Terrifying, just terrifying to even think about.
The plan with Jo is to increase his "food" intake, into regular "meals" instead of a continuous flow of formula (shake via G tube). The idea would be to let the stomach work like normal, digesting a meal, resting, digesting a meal and so and so on. Jo has been taking it like a champ without a single problem until yesterday. The chest xray showed he aspirated a bit of fluid into the lungs (nothing major) and his blood test returned with nothing to worry about. The fluid in his lungs creates a problem for a period of time until it clears, he doesn't have a true pneumonia at this time.
Jo now has a "barky" cough that sounds horrible. It sounds like a child with Croup, which sounds like a dog bark. Jo has actually had a Croup as recently as last year. Typically it doesn't occur past age 11, but as usual, Jo is the exception! The Drs are incorporating Croup treatment into to his respiratory care and it seems to be working great. In addition we thing Jo is experiencing common summer allergies, so we are doing Flonase every 12 hours to clear his nose.
Please focus your prayers and thoughts on Jo's breathing. Everything we are seeing is "normal" but it is very difficult to watch and leads us back to "helpless mode". We need everyone's strength to stay strong, and support Jo when he struggles. This is just another trial that we will pass together, but it sucks. Jo continues to fight hard, one miracle at a time, Thank you all for all of your love, positive thoughts, and prayers, they provide so much comfort for us.
Jojobinks, mommy and daddy are here. We hate to see you struggle, but we know you will get past this. Try to relax, and let the Lord continue to heal you, he has you and will not let you fall. I posted a picture in this blog from I found today from 5 years ago. You are soaring like an eagle and we know that someday you will soar again, please God please. We love you to the moon and back sweet angel, you've got this.
Jo has had a few restless nights with his cough. Today the Dr talked to us about the likely cause being dry throat from mouth breathing. The air conditioning definitely leaves you with dry mouth and when he coughs it sounds very dry and irritating.
It can be very challenging listening to Jo breath night over night. He sounds like he is snoring or like I do when I have an asthma attack. The Dr assured us that the sound is air passing through the airway with weak muscular support. Over time this could improve, or it could not, but even though it sounds bad he is not struggling to oxygenate. We asked for a blood test yesterday and the results showed no need for concern, unfortunately that doesn't really make it any easier to hear. They have added a humidification tube near his face and we are using Flonase to clear up his nose a bit. We've seen some moderate improvement.
Jo is also crying more often. He opens his mouth, squints his eyes, and tears roll down his cheeks. He is clearly uncomfortable, in some pain, but where or why we really don't know. He could also be tired of being here, tired of his body not responding, or missing all of us, we hope! They upped his dose of ibuprofen and that seems to have helped.
Yesterday Alex has helped Jo open his right eye when he opened ever so slightly. When she did Jo's eye focused right on hers and it felt like he was really engaged with us. He shifted his eye to me when I called his name and we both swear he had a half smile. His left lip curled upward ever so slightly, and it was amazing. Our baby boy is fighting so hard, he smiled to let us know he is gonna be alright, it will take time but he is coming back!
Please focus your prayers on improved breathing for Jo and to keep pushing to wake up. I have received so many messages from people that have a feeling it is close to happening! Keep the prayers coming, we love you all!
Side note, we continue to receive the best care for Jo we could ever ask for. During such a trying time we cannot express how comforting it is to see someone care for your child in such a compassionate and loving way. Today our nurse is Liz (the best!), I'm pretty sure Alex and her are becoming best buds, I love seeing them chat it up.
Jojobinks, rest peacefully mommy and daddy are here. Keep fighting and show us that smile again! We love you and miss you so much baby boy. You are in good hands here and God has you with him, follow him back to us. We love you to the moon and back sweet angel, you've got this!
Jo is doing great, we still haven't seen his beautiful eyes but we are keeping hope. He is crying more, which under normal circumstances would might not be good news, but it does give us peace when our 13 year old cries, its NORMAL. Jo is taking tylenol and ibuprofen for pain, and other than his G tube, he has nothing poking him, or providing him with any additional support. One miracle at a time.
Today was a busy morning for the family running here and there and some mundane errands. We had to take the dogs to the vet to update their vaccinations for a weekend / holiday stay at the kennel. I arrived just as the vet opened to find a few other folks already in the waiting room. As I spoke with the friendly rep at the desk a young woman entered to my left. At first I didn't notice her than I heard a sound that has become all to common the past month, the sound of weeping. When I turned to see her I almost didn't notice the huge great dane leaned close to her body. He was a beautiful grey color with old man whites all through his muzzle and snout. She mumbled something to the rep next to me and I immediately felt my heart drop, this would be Duke's last day with her. For the dog owners out there, I need not explain how painful this experience can be. My heart wept for the young woman, she was really struggling.
One of my favorite quotes is "be the person your dog thinks you are". That is my Jo, and all my children for that matter. Playful, loyal, sheepish when they mess up, unconditionally loving, innocent, and never acting with malice. Full of God's grace. As tears swelled in my eyes over Duke I realized that everyone's struggle is different, and our mission is to show that anything can be done through faith. Duke was on his way to a better place, and while it hurt to let him go, this woman showed such great courage in letting him rest. Jo rests in his bed, in some minor pain, healing, waging a battle in his brain to open his eyes and regain his strength. Our courage as parents comes from our belief that he will come back to us whole. That he will live as a testimony to God's love. It can't be rushed, and as bad as we want him hear now, we must have faith in God' plan.
Jo introduced us to his favorite artist John Bellion a few months ago. Like most parents I heard a bunch of pots and pans, the occasional expletive, and too much base...I am officially an old man. Off course now I've just about memorized every word of this album, and wouldn't you know it, he talks about God! Amazingly fitting lyrics:
John Bellion :
Album/ The Human condition 2016
Although I guess if I knew tomorrow
I guess I wouldn’t need faith
I guess if I never fell, I guess I wouldn’t need grace
I guess if I knew His plans, I guess He wouldn’t be God
So maybe I don’t know, maybe I don’t know
Maybe I don’t know, maybe I don’t know
But maybe that’s okay
Maybe that’s okay, maybe that’s okay
Maybe I don’t know, maybe I don’t know
But maybe that’s okay
Hand of God
I am just a man, I am just a man
Who lusts, gives, tries
Sometimes I lose my way
[Chorus - Jon Bellion:]
Tears at a funeral, tears at a funeral, I might break
Angry at all the things, angry at all the things I can't change
When you're lost in the universe, lost in the universe
Don't lose faith
My mother says, "Your whole life's in the hand of God"
So I leave you with this "be the person your dog thinks you are". I picked up the tab for Duke, he is resting now, I pray his owner rests as well, knowing he is running through heaven!
Jojobinks, mommy and daddy are here. We miss you so much. Today we helped you lift your right eyelid and for the first time you looked into our eyes! You even started a smile! We see you fighting, we are here! Stay with God Jo, he will send you back to us soon! There are thousands of angels praying for our family, we know you can feel it! We love you to the moon and back sweet angel, you've got this!
We arrived at Mary Bridge in a panic, my wife and son by helicopter and me by car well above any posted speed limit. It seems like yesterday, and I still wake up suddenly from that memory as if from my worst nightmare. 90 minutes earlier our baby boy had collapsed in the car just outside the Covington emergency room. When I arrived the van was parked haphazardly in front of the ER literally halfway in the front doors, that something I would do, not my wife. In a whirlwind he was sedated, intubated, sent for a CT scan, and it was obvious our life had changed forever. I still remember getting a hug from the on duty ER Dr. and I recognized he initiated it as soon as I said I was Dad. The hug was as much for me as it was for him, he seemed almost as scared as I was. My wife stood bedside in pure shock as I sat in the waiting room with Bella and Jimmy. I hit my knees and began to pray. I couldn't think of anything to say except "please God please" over and over and over. I repeated that phrase out loud at least 1000 times on my way to the hospital. As it were, when I pulled up from my 26 mile drive in rush hour traffic, I beat the chopper by 2 minutes and saw it land. Please God please.
Jo was rushed directly into the OR. We sat and waited for what seemed like hours until we we met what would be our first Dr./ Surgeon. I still remember his tired expression as he described the "successful" surgery, and then said those fateful words "brain damage, is unknown, we will see". I prayed again, please God please.
Today Jo was fitted for a wheelchair. I cannot describe the emotions I felt as we used a lift to take my strong, athletic, 13 year baby boy into a body sling attached to a lift to sit in his first wheelchair. It still doesn't seem real. I cannot look back, I cannot think about where he was 31 days ago. I am broken in so many ways, but nothing hurts more than looking back.
The therapist went through a series of websites with pictures of different "new necessities" for our home. Lifts, shower seats, wheel chairs, and rail systems. My boy who used to take the bus to school, now would travel by cabulance to anywhere we had to go. The only place he has to go anymore is Dr. appointments. How could this be? Lord help me understand your plan, help me keep my faith in your healing powers, grant me the strength to wake up the next day. Please God please.
These beautiful Washington days are the types Jo lived for. He would light up with the idea of being outside enjoying the weather. Jo is amazed by earth's beauty, and he reflects about it often, something not common for a teenager. He loves bald eagles like his mom, he would get such great joy from pointing one out to her. They share a special deep connection, I'd often find myself jealous. To say Jo was special to her would be largest understatement ever made.
Jo is such a critical part of our family. His sisters want nothing more than to be close to him, we've learned this is also true of almost everyone that knew him. I can't express how it feels to have kids talk about missing Jo, it immediately brings us tears of joy and pain. Lord please bring him back to all of us soon, he is so loved. Please God please.
I had a dear friend once counsel me soon after my son Jimmy was diagnosed with Autism. As young parents we were devastated by the diagnosis and thoughts of the future were terrifying. She told me to remember to never ask the Lord "why me?" Instead know that my wife and I were chosen for this journey because we were perfect for it. Jimmy was given to us because we could give him a life others couldn't. At times we reflect on the trials of our life and see their true meaning, why we were chosen. Jimmy has prepared us for a fight, mentally and physically, a fight I'm not sure others would be suited for. So we will fight, we will not give up hope, it is what God expects of us. We will cry countless tears, our hearts will bend but not break, we will run towards the future not shy from it, and we will show our children what unconditional love looks like. Please God please.
Our family and friends have shown their unconditional love for us from the moment this tragedy struck. Leaping into action to support us in so many ways. Sending their love everyday, praying for us constantly, and willingly donated their time and money each and every day. We cannot thank you enough, faith in God and your love carry our days. We pray that you all know how much you mean to us. Please God please.
Jojobinks, mommy and daddy are here and we love and miss you so much. Today was probably tough for you to understand, it was the most challenging thing I've ever done. We have faith that your struggles are temporary. That your strength will be restored and you will live as a testimony to belief transforming into miracles for everyone to see. Open your eyes sweet angel, crack that smile, the lord is with you he will not let you fall. We love you to the moon and back sweet angel, you've got this.
Jo has had a very good day with no issues. He was visited by the surgeon who is planning a CT scan Monday to review the possibility of replacing the piece of his skull. Short story is he needs to ensure he is not "forcing anything back in place". Provided he is comfortable with what he sees, the surgery could be next week ( yikes!!). This would mean two things, first he would be intubated again for the surgery, secondly he would return to PICU and be closely monitored for brain swelling. What a horrible roller coaster... We would be crushed if progress was lost with Jo's recovery and intubation, extubation, and brain issues are all complications that could occur. We are terrified but know this is part of the process for getting Jo home, God give us strength.
The last few days seem some of the hardest we have spent here. Partially because we have blocked out so many of the days leading up to this week. Fueled by adrenaline and focus on Jo's survival decisions were made quickly and thoughts about complications weren't even factored in to the equation. Now, idling waiting for Jo to show more improvement leaves us in a state of panic if we see the slightest change in his overall stability. We have listened to Jo breath for so many consecutive days we know it by heart. We also know when it doesn't sound right, and at times you trick yourself into thinking you heard something you didn't.
That breath seemed more labored...he paused too long between breaths...his respiratory rate has declined...his heart rate is too rapid. Off course none of these things are true, but the devil sneaks into the smallest crack and with him brings doubt. It is at these moments we bow our heads and pray and feel the strength of each of you praying with us.
We will not accept that we can't have our Jo back. We refuse to question the plan. We are up to the challenge no matter how painful or difficult, we are not alone. The Lord is with us and we can feel it, each of you provide an added strength that cannot be measured. We will wipe our tears, steady our gaze, and fight by Jo's side. There is no room for doubt, we will put our hope in God. One miracle at a time...
Jojobinks, mommy and daddy are here. Please open you eyes and let the light back in. Mend our broken hearts and show us the miracle that you are. We are on this journey with you, we miss you so much. We will never give up hope, and we know you will never give up the fight. Take God's hand and come back to us soon. We love you to the moon and back sweet angel, you've got this!
We (all 5 of us) are sitting bedside with Jo as he rests. His vitals have never been stronger or more steady. The only remaining procedure we must do is the skull replacement. Everyday the neurologist reviews the head and waits until he sees less mass resting outside the skull. This sounds horrible, but actually it is why the procedure was done in the first place. Jo does not have any dangerous swelling on his brain, we are just waiting for the brain overall to shrink back to its original size before closing the skull back up. It sounds like we will have a CT scan later this week or early next which should tell us when the procedure will be planned.
The waiting for Jo to open his eyes has been very difficult for us. His right eye does open just a sliver at times and although it is very encouraging, and a great sign, it elicits joy and equal pain. We are so close yet so far. Can he see us? Can he hear us? Is he reacting to our request to open (which we say over and over)? It can be a very desperate moment for us. It is so far removed from our overactive, goofy, and coy little boy. We miss him so dearly and at those moments when we are asking for just the smallest recognition of us, it can be devastating when we can't see his response. We know he is fighting to get back to us, we don't know how many miracles have already occurred and hate to be selfish. We pray so strongly at those moments for God to give us and Jo strength, and at these moments we fall on the strength of each you who send us prayers and encouragement every day! You are our prayer angels, lifting us up, we love you all.
We are being visited more and more every day by friends, family, and the PICU nurses! They swing by to check in on Jo and us. They are the most amazing, talented, loving, and caring group of professionals we have ever met. Since we moved to our new room outside PICU we have been blessed with another group of angel nurses again! They care so much, check in often, teach us, and show such compassion for Jo and his family. We are so lucky.
I've said this before, but Alex and I can barely comprehend how much people have done for us and continue to do. The number of selfless acts is too long to list. The amount of time friends have donated to our betterment, away from their loved ones, is astounding. The generosity of each of our friends and family is overwhelming. We have never once wondered where our next meal was going to come from. The financial support we have received is extremely humbling, and the donations occur every day. Please accept our sincere thanks from the bottom of our hearts, we are truly touched and overcome with emotion when we think of just how much has been given. We are blessed beyond belief.
A quick note on Mom and Dad. The silence can be deafening when we are alone with Jo. He looks so great, just like he's sleeping, which leaves us begging for him to wake up. Breakdowns have become just another thing we do regularly (pretty much a daily thing), and anyone that has hugged us recently has experienced that personally :). So, even if you're not a hugger, when you see us, expect a hug, expect some tears, and know that it makes us feel better. Once again you are helping us through this, and without those hugs we would be lost. Than you all so much, we love you.
Jojobinks we cry by your bedside because we are trying so hard to be patient, so hard it hurts. We are going to be strong for you baby boy. You keep fighting, we will keep praying and crying (sorry it's just our thing now). Your Mom misses your hugs so much, and I miss seeing her light up from your touch. Across the country, and the world, angels our praying to God to stay by your side and guide you back to us. Without you the world is just a little bit darker, we know you will bring that light back soon. We love you to the moon and back sweet angel, we miss you so much!
It's been a busy day but wanted to get this out.