keep the faith, one day at a time
Jo continues to be comfortable at home and we love the ability to see him as often as we like. Seeing him in his room peaceful is very bitter sweet. While Jo is in the bed, our Jo, the pulse of our family, the symbol of our summers, the spirit of joy is still absent at times, and it hurts.
Staying positive, Jo's reactions and neurological performance continues to be encouraging. He is awake during the day other than periodic naps and surprisingly "alert". Jo shifts his gaze when people enter the room, he would turn his head but he's not quite there yet. He moves his eyes to look at people and when you talk to him it is like he is trying to talk back with his eye contact. He definitely seems aware of familiar faces and enjoys visits. At times I think he gets sad when he is frustrated with his inability to move normally. He so badly wants to get up, it is painfully obvious and extremely difficult to cope with at times. We keep our faith in God and I often pray for strength at Jo's bedside. Jo in this state is so bitter sweet, he is here with us, he knows we are there with him, he is extremely stable, he is comfortable, but his inner battle is evident and it can be so difficult to watch. The branches of neurons regrow and attach at their own rate with God's touch, at what time we do not know, but we keep the faith.
Dad was the first to hear the devastating diagnosis when Jo had his last brain bleed setback. It is a day I will never forget, a day etched into my memory for obvious reasons. I remember it most in times of despair because his future was so bleak from a clinical standpoint. Would he ever come home? Would he need a ventilator to live? Would he ever wake up? The Dr.'s unwillingness to answer those questions directly made it clear that they felt very little hope of getting our Jo back. Now just 2 months later Jo and the Lord continue to beat the odds everyday. He is home comfortable with us, he breaths easy with no help, he is clearly awake, alert, and aware f his surroundings. He is already a testimony to God's strength and powers, a symbol of God's love. He is a miracle many times over, and we will not lose hope, this is just the beginning.
There was a time we reported even the slightest movement in Jo's right arm with great joy. Now he curls his body, stretches out, moves his ENTIRE body to get comfortable. We spent weeks helping him open his right eye with our fingers just a crack, and followed his pupil with anxious anxiety. Now Jo opens both eyes WIDE, makes direct eye contact, follows you with BOTH eyes, and is obviously engaged with his visitors. Nothing else can explain this type of improvement other than God's will. He remains by Jo's side and will restore him in time; patience, faith, and hope is all we need. Jo's journey continues and what a testimony it will be!
Our house is full with joy despite an incredibly trying time for our family. The love and support of our friends and family carries us. We are truly blessed. Jo's nursing schedule is coming together quickly and we shouldn't be surprised that EVERY nurse we've met prays for Jo and has strong faith in God. They have seen with their own eyes the miracles of the Lord and they know they will see it again. With just a glance and eye contact you will fall in love with Jo, he has a gift, and one look and he's got you! Jo's story resonates with many people and we know his journey has already saved countless kids who no longer need convincing to wear a helmet. We are all blessed.
We love having people visit our home, we love the sounds of Joy, and we love you all so much for the support! We are blessed...
Jojobinks you are making progress everyday. We know you are fighting to come back to us, do not let your heart be troubled, the Lord is with you and he will not let you fall. Soon we will have you back whole, day by day, miracle by miracle, you are being restored. No one will be able to explain how it is possible, only those with faith will see what is possible with God's love. We will be here waiting and borrowing your strength to stay patient. Your journey is still a long one, but in time you will come back to us, we know it. We love you to the moon and back sweet angel, YOU'VE GOT THIS!
2 weeks, so far so good
Sorry for the delayed posting we have had yet another very busy week. Jo has had another appointment and aside from the 40 minute ride to the doctor everything went well. It was his first G-tube change so mom and dad were stressed, it was literally a 3 second process and Dr. Escobar was a very calming influence on how simple the procedure is. In general he is calm and very personable, a great guy to have taking care of your son.
Following that appointment Tuesday Jo has been the calmest Alex and I can recall. It is a little nerve racking to be honest. His vitals are strong, he is super stable and comfortable. It's like he has finally hit his groove at home and is able to rest knowing he is safe and secure. Healing is definitely in progress, please God please.
Jo is moving more than when recall. Anytime he moves it is exciting to us, but particularly when we see "intentional movement". For example if he raise his arm towards his trach it can be perceived as "intentional" in terms of his awareness of it and purposeful when reaching for the area that is bothering him. Nervous system reactions are also very exciting. More than once we have dropped something on the floor that caused a loud sudden "bang". Jo flinches, that is a great sign! A few days ago Mom was adjusting something near Jo's face and her metal bracelet tickled Jo's nose, he immediately jumped! All good signs that Jo's healing continues, he is fighting his way back to us!
Another very exciting development has been Jo's attentiveness in bed. At times he does stare into the ceiling with a blank stare but far more often he makes direct eye contact and follows whoever is talking to him. He recognizes when new people enter the room or come next to his bed, and it is breathtaking when he stares into your eyes. Jo is definitely trying to show that he is in there fighting, and when you look into his eyes it is both amazing and painful to know that he is battling so hard. It is also very comforting to see the "normalness" of Jo when he is resting and obviously awake. Jo sleeps through the night, and is active and naps during the day, that is the kind of normal we love to see.
Jo's recent stability indicates he is very comfortable at home. Mom and Dad are still doing 100% of the care minus to 12 hour shifts covered by his amazing nurse Sergei. We are close to getting additional nurses to help but our insurance is definitely stalling. We have conducted 5 interviews and felt everyone was a good fit for Jo yet we don't have final approval for their agencies to begin staffing. It is deeply frustrating to think we could have Jo with 3-4x more support if we could just get papers pushed. Mom and dad have always looked at the "healthcare crisis" from a insider perspective because of care for our son Jimmy. Jo's experience thus far just further illustrates just how broken and callous our system can be. The professionals who can provide the best care in the world hamstrung by an impassable bureaucracy. We know we are blessed to have the coverage and support we currently have, we hate to complain.
Jo has had many visitors the past week. Being at home makes access easy and we have loved to see friends and family spend time with Jo. One amazing visitor was his dentist! She did a full cleaning for Jo, it was an amazing blessing and we cannot thank her enough. Jo even cooperated by opening his mouth and allowing her to work! Jo is so loved!
Mom and dad have also had many more visitors than we can ever recall and we truly love the company. Having friends and family here at our home recharges our batteries and allows us to stay positive, we are blessed. Thank you to everyone who has taken the time to stop by, call, or give us a hug, it has meant so much. Jo's journey continues and we will need that for a long time to come!
Jojobinks you are making great progress and healing everyday! You're friends and family are close and loving seeing you. We have everything you need here at home. More angels appear everyday to help us on this journey with you. You keep resting and healing with the Lord and we will patiently wait for you here. We love you to the moon and back sweet angel, You've got this.
1 week down, we are blessed
After one week it is a blessing to see Jo at home, comfortable, and healing. He seems more and more comfortable every day and his stats reflect it. His heart rate is strong and has had no problems oxygenating even when he is bothered or agitated. All around good news.
His first nurse Sergei has now been with Jo for over 48 hours and continues to learn all about Jo. He is caring and attentive and a true asset to Jo's overall care. He keeps a very close eye on Jo's habits, condition, and notes everything for follow up with Jo's docs. We are blessed to have him with Jo.
In the past 2 days we have met 2 additional nurses both whom seemed like great additions to Jo's care plan. Ideally we would have some type of nurse coverage every day, the industry for home nursing works hard to meet a great demand. We are blessed to have found 3 people we feel we can trust with our son.
Jo is solid and mom and dad are definitely felling more comfortable providing for all of Jo's needs. As we improve how we do thing with Jo we move quicker and Jo has less agitation. Even caring for his trach has become less scary, and mom is excellent at a speedy and efficient cleaning.
Jo continues to show more and more reactive behaviors. He flinches if there is a loud sound, opens his eyes when someone comes in the room, and focuses on the people talking to him. In addition Jo moves his body more than ever, he stretches at least 4-5 times a day and curls up his body at times and rolls on his side. He has a very strong cough, which is a great signal of respiratory muscular strength. When he sneezes his whole head comes of the bed! We are blessed.
Jojobinks there are armies of people praying for you. Everyone realizes that God is doing his work in you and returning you to whole. You have already amazed us with your progress and we know there is much more to come! One day at a time, one miracle at a time. We are home with you and love being able to spend time with you so easily. We are here patiently waiting, rest and heal baby boy. We love you to the moon and back sweet angel, you've got this!
a little better every day
Jo is doing great at home. he has really stabilized in all of his vitals. He still gets agitated at times and seems frustrated, but who wouldn't be. He is getting more visitors now that he is home and we know he enjoys the company. He is very engaged with whoever is talking to him, even if for short periods. It is clear when Jo is awake and when he is resting, that type of "normalcy" brings us great peace.
Jo has a hectic schedule over the next 3 weeks, upwards of 5 appointments to check on this and that. He met with his new pediatrician and their office did not an amazing job accommodating us with our new normal. They were efficient, kind, and everything went off without a hitch. Another difficult visit emotionally as we recall the last time we were there Jo was getting his physical for the upcoming football season...
Jo's days are fairly simple, a small medication routine, a detailed feeding schedule, some respiratory procedures, and last but not least consistent routine re-positioning in the bed. Jo is almost in his 3rd month on his bed, and with the exception of a few trips in his wheelchair he has spent many many hours resting on his back. It is absolutely critical that we maintain a rigorous routine of rotating Jo side to side every 2 hours. Every 2 hours all day everyday, morning noon or night. It is one of the most difficult parts of his care actually, it can take 2 people to be efficient and you can imagine how time flies between each move. Mom and dad have got this, along with help 2 days a week from Jo's amazing home care nurse Sergei, he is amazing!
We are working with a few different agencies to fill other days with nursing care. While we will still be a huge part of Jo 's daily care it gives us the chance to get some of the other parental things done around the house. If anyone out there has a great nurse in mind please let us know!
I'm sorry I haven't written in awhile, I'll do my best to keep something posted daily. As things settle in it should be easier to keep everyone up to date. Jo looks great and it is such a blessing to be at his bedside whenever we want to. For dad, in times when my hope or faith is tested all I need to do is visit Jo, pray and I feel better. I could never imitate the connection Mom and Jo have, is beyond touching and brings me to tears. We hold steadfast that Jo will make his way back to us one smile at a time. He's got this, and every day he gets a little better.
Jojobinks we are so happy our family is back together. You are an amazing fighter and we are so proud of you. Your story has touched so many and it is far from over. You have so many more people to amaze! Mom and dad are still learning the best way to make you comfortable, please be patient with us and tell God to continue to give us strength. Rest with the Lord and let his healing hands restore you whole, we are so excited about watching you come back to us. We love you to the moon and back sweet angel, you've got this!
30 hours in the books
Jo has been doing great his first full day with Mom and dad alone caring for him. No Dr.s, no nurses, just the love and support of our friends and family. Jo has made it easy on us, basically the perfect patient. Uncomfortable for brief periods, but all in all peacefully resting.
Jo has had many visitors since he got home, it's nice to see his dear friends Jackson and Ashton have such easy access to him again. Each time they visited Jo opened both eyes and engaged them. He clearly is happy to have the visits and I'm sure a little frustrated by his current condition. Like most kids Jo loved the summer and I'm sure he missed being outside all day with his friends. We are blessed that they take the time to stop by and spend time with Jo.
Mom and dad had full night care last night and we are both pretty tired. A small price to pay for being so close to Jo. Jo has to be moved and fussed with every 2 hours, so long spells of rest will have to wait for awhile, we've got this.
If you've followed our posts from the beginning you would know that Jo's heart rate/ pulse have been an interesting learning for mom and dad. Jo's resting heart rate frequently is about 55-60 BPM. Last night he was so comfy he was less than 50 at a brief moment or two. Mom handles that better than Dad, and as I begin a small meltdown she simply reassures me that Jo is just resting, and reminds me how good he looks. She is right, he looks great!
Jo is a champ in every way. He is on the road to recovery, one day at a time. He is amazing.
Jojobinks we love you and miss your laughter so much. We are so happy you are home but still a little scared. We just don't want to mess up! So far so good, every day we get a little more comfort with you care. Stay strong and let the Lord heal you, and remind him to help mom and dad. We love you to the moon and back sweet angel, you've got this!
Jo made it home yesterday! We finally left the hospital a little after 1pm. Jo was a champion sitting in his chair for over 2 hours total. He wasn't always comfortable but his vitals never dipped and he was stronger than ever. Mom rode with Jo with Dad close behind the whole 26 mile drive. Mom pulled another "Super Mom" episode when Jo got sick halfway to the house. She is amazing in every way, just another day for Mom, she totally got this.
Our amazing nurse Sergei was here when we got home and had prepped Jo's room for him. We connected with Sergei over a week ago, and he made himself available most of yesterday and today he is still with Jo. He is kind and caring and we couldn't be more happy to have connected with him. We are blessed to have yet another angel in our lives.
Jo slept the night with Mom and Dad running the show. It was definitely stressful when we stopped to realize we had not other support, but it was equally rewarding to get through an entire night with no issues. I prayed before bed, thanking God for for bringing our baby boy back home. Driving home behind Jo I lost it for a few moments when I recalled how uncertain I was this day may never come. How many nights we feared the worst, how many close calls we endured, and how often we prayed and asked God for his healing hands to bring Jo back. This day was just another miracle, another example of the Lord's grace. Our family is once again complete. Now it is time for the next chapter in this journey, the long road to full recovery. Please God please.
Over the next 30 days Jo has 6-8 Dr. appointments! We have to book transport to each, and each time it will get easier, but right now it seems daunting. Now that Jo is felling more comfortable in the chair, it also means we can go on a walk soon! Right now we are just focused on settling into the new normal and letting Jo continue to heal. We've been told many times that we will be experts in Jo's care in no time, please God please.
We cannot thank the professionals at MaryBridge enough for saving our son. Leaving the hospital was bittersweet as we felt we were leaving our second family. We received far more than medical support from that team. You cannot fake compassion and genuine caring and we never felt anything but love. They picked us up when we were down (at times literally), they cared for our baby like he was their own, they kept watch over him in times of need, and always made sure we were as comfortable as possible. We laughed and cried together, we made new friends, and we learned so much. One day we will walk back through those doors with Jo by our side so that he can say thank you himself. Please God please. God bless every one of them, you will forever be in our hearts and minds and we owe you a debt we could never repay.
We would have been unable to even think of going home had it not been for the angels that made our house into our new home. Jo arrived to a room that could rival any for design, function, and support. Doorways were wide and open, everything was fresh and clean, and we could not have felt more comfortable bringing our baby boy home. Truth be told we don't even know how many people were here, who did what, or how many days they sacrificed to pull of this small miracle. While Jo's comfort and support was most important this group of angels allowed our entire family to start anew. We walked in to find a peaceful beautiful home we still can't believe is our own. In this home we now can focus on adjusting our lives and settling into our new normal, not a leaky sink or torn carpeting. We realize that every day from now on we will experience a new challenge, our home gives us the strength to focus on overcoming anything, we are blessed.
I will continue to update the blog regularly and apologize for not writing sooner. I know there are so many people following Jo's journey, I will keep you posted! We love you all, keep the prayers coming! One miracle at a time...
Jojobinks you are home with us! You look very comfortable,, and we know the more you rest the more you heal. Thank you for being so strong. Mom and dad are here and we've got this. As you rest and heal with the Lord ask him to continue to look over us in our care for you. Allow us to be wise in our decisions and ensure you are always safe. We love you so much, we are so happy we are together as a family again. You are getting better everyday. We will never give up the fight to get you back, and we know you will never stop pushing yourself to heal. We love you to the moon and back sweet angel, YOU'VE GOT THIS!
Quick note on Jo's healing. He regularly opens both eyes, wider and wider each day! He is obviously "awake" and sleeping at different times throughout the day. He responds to conversations by shifting his gaze towards the sounds and seems to be more responsive each and every day. It is amazing to think opening both his eyes is the new normal! Jo has always added more movement to his body overall. He will curl his body and roll to one side at times. It reminds me of the opposite of how we stretch out, Jo stretches in because he has been lying flat for so long. I imagine for Jo curling up for a brief moment is a little painful but also a great relief to engage different muscles. This is also becoming more common. It is a great feeling to see Jo move his arms and legs, it shows the neurons are firing and healing. Progress, one miracle at a time!
Jo is coming home today or tomorrow! As of this writing we are awaiting a call from the Dr. on duty to discuss the exact time and date. Are plan has always been today, but we noticed a normal scheduled neurology appointment tomorrow at 10am. Assuming that appointment will occur it doesn't make logistical sense to go home today.
Jo is doing great, he has been resting and healing consistently now for several days with minimal to no discomfort. We think he is feeling ready to go home too. Off course the idea of going home is both extremely exciting and terrifying to Mom and Dad.
We have been involved in every aspect of Jo's care for over a month. At times nurses who are just meeting Jo for the first time ask us for the best way to care for him. Clearly we have become relative "experts" in his daily needs and care but the idea of not having support readily available is scary. Many times we would be in his room watching him rest and think to ourselves "he is ok right?". In those times the nurse or Dr. is just a phone call away to reassure us, those times of quick confirmation of Jo's status are just about over. We still remember early on when the nurses and Dr.s would tell us "look at Jo, not the monitor. Jo will tell you how he is doing." When we get home, that is what will be doing all the time. No monitors, alarms, we check his vitals, we turn him, we handle all his feeding, all his meds, and we own 100% of his care, we are up to the task! In many ways Jo's care when he's home, and any parents care for their kids for that matter, hasn't changed at all, it's just different tasks to keep your kid safe, we've got this.
I don't think we are ready to review where we have been with Jo. These blogs will be the best way for us to remember the worst 60 plus days of our lives, but not now. We have to remain focused on Jo's care and the new normal for our entire family.
Since the day this occurred we have been surrounded by angels, and still are. Some here on earth in the form of family and friends. Some as part of amazing cross country prayer lists. Dozens of angels caring for Jo everyday, nurses and doctors. The angels that fixed our house so that taking Jo home is possible. There were also angels we could not see doing God's work with Jo. Making the impossible possible, always watching over him. Giving his mom and dad the strength they needed to get through this, one day at a time. We will never know how many miracles have already occurred, we are confident more are coming... We cannot thank all of you more, our lives were forever changed by this tragedy, but equally changed by the outpouring of love and support which we never could have imagined.
We will update later today with Jo's final plan for discharge. Thank you all so much!
Jojobinks, you will be home soon! We are ready to have you close, ready to care for you. We know that God will give us the strength to provide what you need while you continue to heal. He will not leave your side until you are whole. We can't wait for your arrival!
we are blessed
I apologize for the lack of posts the past few days. Jo continues to rest with little change to his condition as we actively prepare ourselves for his discharge. He has been uncomfortable a few times in the past 2 days. Nothing specific causing him to feel that way, Mom and Dad think he just wants to be home!
If you’ve read my earlier posts, I remember writing about waiting for the wave of emotions to hit me. How things just didn’t seem real, how I still thought I was in a nightmare. How the rapid pace of making decisions about Jo has kept my adrenaline going, not giving me time to reflect. How terrified I was of how I might handle the harsh realities that we will face in our immediate and long-term future. How much are lives have changed forever, how our new normal is only a best guess. These thoughts absolutely consume me in silent moments of reflection. There is crying, but sobbing is a far better description. I fear that the wave is still nowhere near the shore.
As we’ve discussed before a group friends we call our “angels” have been busy remodeling our entire house for Jo’s arrival. We have been out of the house for more than 2 months and we finally got to see the final product on Friday. It is truly like a dream, it baffles us to think that anyone would take on the monumental tasks that were undertaken in the name of Jo. There is little that reminds us of our old beat up house. As Alex has said these angels made our house into a home. I will post pictures in the upcoming days but want to wait until Jo is home and our family is re-united. The amount of time and personal sacrifice that was so willingly given leaves us breathless. The selfless acts are far too many to count. The donations from vendors, suppliers, friends, and family leave us forever grateful. In the worst of times it is so apparent how blessed and loved we are. That love has carried us since the first day more than 60 days ago. The Witzman family could not have made it this far without each of you, you saved us.
Jo has had prayers from across the country each day. One day we surmised that more than 10,000 people were praying for Jo, and I think that is a low estimate. Jo has rested and healed with the lord by his side whilst feeling the amazing power of prayer to keep him calm and strong. We began this journey with Jo with a single thought and hope, “let us take Jo home again”. That miracle is coming true. We expect him on Wednesday but even if it takes longer we know he will be with us at home soon. We praise the Lord for the miracles he has already granted and those he will grant in the future. We are blessed.
I have not gone back and read a single post since I started writing more than 60 entries ago. I am not strong enough. Someday we will sit side by side with Jo and read them together and show him what a miracle he is.
Mom is so much stronger than Dad, she has watched his videos and reviews his photos daily. Dad is not ready. If I look at any picture of Jo for more than 20 seconds I weep uncontrollably. The sound of his voice and laugh bring me to my knees. When I feel the most pain, I close my eyes and talk to God. I do not ask why, just to help me get through it. Many times the only thing I can think to say is the Lord’s prayer over and over. I don’t know how we’ve made it this far.
Yesterday some of the angels who remodeled our home joined us a for a meal. It was the most bitter sweet experience of our lives. You see Jo thrived in times when people gathered, he was filled with joy. He so enjoyed when we got together with friends and family, so while we were overwhelmed with joy about our new home, we also wept. We just miss him so much.
Hopefully through my blogs you’ve come to understand just how special Jo is, he is truly and angel among us. When I allow myself to doubt Jo’s recovery I remind myself that Jo lived in God’s light. He was not spiteful or dishonest. He cared for people dearly, he always compelled himself to do the right thing. He was pure joy and hope in the form of beautiful handsome young man.
Jo has made unbelievable progress throughout this journey. I’m certain there are many Dr’s that did not believe he could recover the way he has. We are blessed.
Jo has both eyes open now. He is awake, but the road ahead is still long and treacherous. We need to hear his voice again, we need that smile back. Jo is strong, God is great, and one miracle at a time Jo will make his way back to us.
Jojobinks you will be home soon. Mom and Dad are scared to leave the exceptional care of the hospital but know that home is where you belong. We will not let you down, the Lord will guide us as he has your Drs and nurses and we will rise up. You have showed incredible resolve, now it is our turn. We love you the moon and back sweet angel, don’t worry Jo, WE’VE GOT THIS…