Jo just seems to get better every day. Mom and dad are trying not to get our hopes up for fear of another setback, but we both are so encouraged by what we see. Jo has less and less discomfort and needs only minimal support overall.
Today Jo was visited by his buddies and he was alert and seemed happy to hear their voices and see their faces. The picture below is bittersweet as we were so happy to see his friends here with him, but knowing how Jo would have interacted with them absent this injury is hard to ignore. At times like this I feel bad for ever judging his friends when he got into trouble, deep down it is clear they all have good hearts and truly love and miss Jo.
Seeing and posting photos of Jo can be crushing for Dad. Unlike Mom, Dad rarely looked at those pictures and took the time to see the details. His beatiful smile, the twinkle in his eyes, those dimples, but beyond that the pictures were such an amazing window into Jo's soul. It's hard to believe that a picture can show kindness, warmth, genuine joy of life, and compassion, but Jo pulls it off flawlessly. It makes me feel extremely shallow for not seeing all these things sooner. When I look at his pictures, see that smile, my only thought is "when will I see it again?". I tell myself to be patient and trust God, but it is the most difficult thing I've ever had to do. I miss him so much, when I see that smile it both breaks my heart and lifts me up. Jo is a gift to all that have had the pleasure of knowing him, and the most common trait they will share about him is "Jo has a great heart, and he cares". What greater compliment could a parent ask for?
Despite how hard it can be personally I'll keep posting his pictures, they are too amazing not to share. God willing, someday soon I'll be posting new pictures of our baby boy smiling ans laughing along with his friends.
Jojobinks we know you will be coming home soon! We can't wait! Keep resting with God and embracing his healing touch. You will serve as testimony to everyone that a life lived pure in God's light makes the impossible possible, one miracle at a time. We love you to the moon and back sweet angel, YOU'VE GOT THIS!
Jo is doing great, and today and yesterday he opened BOTH EYES! THIS IS AMAZING PROGRESS!
Jo finished his antibiotics today and the culture cam back negative! Looks like the infection has passed!
Jo had his skull staples removed and handled it like a champ! Just needed a little tylenol.
Jo has worked with PT/ OT and has been successful in the wheelchair 3 times in the last week. He gets better everytime we try it!
Right now Jo could be home as early as next Wednesday! I will keep the updates coming, please keep us in your thoughts and prayers. This kid is amazing!
Jojobinks mom and dad cant believe how strong you have been. Your strength gives us the power to make it through everyday. You are so loved! Keep healing and leaning on God. He is with you, he will not let you fall. Don't worry sweet angel, mom and dad will take care of you at home soon. We love you to the moon and back sweet angel, you've got this!
Sorry I haven't written in a few days. Jo has really been in recovery mode since the skull surgery. At times it hard to update when there isn't much to say other than we hope he keeps improving. Well true to form Jo seems to be back on a solid path to recovery, but the last few days have been some of the hardest for mom and dad.
Jo had been struggling with obvious pain and discomfort for what seems like forever but actually only amounted to about 5 days. For anyone who has ever seen a loved one in pain, and felt helpless in relieving it, I'm sure you understand just how difficult these times are. If it is your child, it is an indescribably horrible feeling. Jo would wake up, and scream silently in pain numerous times a day, and even more so at night. We tried multiple pain relievers with only minimal effects initially. We tested for everything under the sun, including another CT scan. The process of waiting for results from that 15 minute procedure is torture. Anytime they review Jo's brain, mom and dad hold their collective breath until the moment we receive an update. Fortunately nothing new was found and we thank God. They did discover a staph infection which is scary but with antibiotics and the amazing care here he should resolve shortly, as of this writing his temperature is normal, a great sign.
Jo has been so strong and courageous throughout this entire time, he just did it again. It seems what he needed more than anything else is time. Noe over a week past his procedure he is sleeping peacefully through the night, and during the day responding well to PT/ OT. For the second time we put him in a wheelchair to test his tolerance, not surprising Jo passed with flying colors. We hope to build on his time in the chair daily, culminating in a walk around the hospital! Pray for this!
Jo is such an active kid, and he has been in a bed for 60 days. Just writing that down crushes me. We are certain that a big part of his uneasiness is just being angry about being in bed, we are going to get him out and about soon!
Mom and dad are planning for discharge within the next 2 weeks. We are training on home care, interviewing nurses, arguing with insurance, and the angels continue to put the finishing touches on our home. Summer has all but started for the other kiddos and we are trying hard to return to some sense of normalcy for everyone, I really don't think we are fooling anyone...Jo is a centerpiece of our family, such a crucial part of who we are, without him we like a car with a tire with a slow leak, you can get around for a little while but eventually you realize we have got to get this fixed. For us that begins with having him at our home, away from the amazing care, but with us everyday in our house. We are terrified but excited for the next phase of Jo's recovery, it is coming soon.
Jojobinks mommy and daddy can't wait to get you moving around. We know you are fighting so hard to get back to yourself, we are going to help you get there soon! Rest and heal with God one miracle at a time. We love you to the moon and back sweet angel, you've got this!
Jo is doing well, resting and healing. He still has uncomfortable moments, but it seems like we have the pain management somewhat under control. His periods of rest exceed his periods of restlessness so mom and dad are happy with that.
Jo has been running a low grade temp since the skull surgery and they have been investigating the cause for several days. CT Scan showed no issues, but he is fighting a staph infection. The docs started his antibiotics in advance of the positive culture so we are already almost through the dosage and he is already showing signs of improvement. We are blessed that this occurred here under the oversight of MBH he is on his way to recovery!
Jo could be home within a few weeks! Please keep the prayers coming, we love you all and feel your presence!
Jojobinks mommy and daddy are here and we are so happy you are feeling a little better. Stay strong and keep letting God lead you back to us. Every day you are one step closer to being with us at home, we can't wait! We love you to the moon and back sweet angel, you've got this!
Happy Father's day to all the dad's out there. Jo is doing well but is still really uncomfortable post surgery. He has swelling on the right side of his head, really it's more like his face. He has been running a slight fever since the surgery, but thus far they haven't detected any infections. Blood tests were normal and a few cultures are still out there waiting on results.
In general he just seems seems really sensitive to movement post surgery, and when he moves he cries, and we hate it. He is taking pain meds, but the nature of being in the hospital means we are always moving him for this and that, and he just plain doesn't like it!
Today has been especially tough on Dad, which I expected. Jo may have been a mama's boy most of the time, but he was an amazing athletic kid. He was very humble about his abilities but he knew he was fast and could jump. When you couple those attributes with the courage to take on physical challenges it made for an exciting, sometimes scary, show. As a Dad it resulted in overwhelming pride every time he stepped on the field, especially with football. The thing about speed is you either have it or you don't, and Jo has it. He has the most effortless stride and he generally shocked people because it was hard to tell just how fast he was actually moving. He peeked in 6th grade flag football, and I've never been more proud. I was most proud not of the multiple touchdown game, but his sportsmanship. Jo spiked a football once when he scored his first touchdown. I talked to him afterwards about it, and told him to hand the ball to the ref after he scored. I said "act like you've been their before, and act like you know you'll be back", that was all I needed to say. He scored again in the same game on a long run down the sideline. After crossing the end zone he turned and looked a little lost. The problem was he had ran over 50 yards and 1 of the 2 refs hadn't reached him yet. He eventually found the ref, but for minute it looked like a comedy scene as teammates tried to high five him while he searched for the ref. I have never been more proud, mainly because he listened and he respected the game. He never once spiked a football again, and he had many more opportunities.
Jo not being physically able to be Jo is devastating beyond comprehension. Jo is an amazing physical kid, and I struggle the most with his inability to move. Discussing things like wheelchairs, lifts, specialized beds, and modified transportation vehicles crushes my spirit at times. Jo is so strong, so alive, and so gifted physically that he would make me proud just playing at the park. He climbs effortlessly, jumps onto and off anything with ease, and is always looking for the next innate object to make into his plaything. To think that he's not capable of these things right now, or in the near future, is torture.
I often think of our times playing catch in front of the house. The typical Dad and son thing that is so easy to take for granted. You see with Jimmy's issues I never experienced this type of joy until Jo. The amazement of watching his normal catch on an easy toss grow to a catching a bullet on a passing route was astonishing. Fumbled catches turn to one hand grabs, and who can forget the diving grabs that he loved to practice, and he was so excited to use in a game. Looking back I realize now that feeling, in front of our house, with my son, has never been replicated and never could be. I so dearly need it back, some day it must come back.
For the dad's out there I know you understand the feelings I discussed. I distinctly remember the first time a coach asked me "can he catch"? Outwardly I said "sure", inside I thought "wait til you see him catch". Jo was always high on life, and his friends truly loved him. Same for his teammates, the only thing he couldn't stand was a showboat. I am very proud of his judgement, at its core Jo was loved, and loved everyone back.
So on this father's day, I must be honest, I wont be happy, not even close. I have wept more times today than any other day in my adult or child life. I hate to be selfish but I need my boy back to where he was. I need our Jo back, and I can wait as long as it takes, so long as he comes back. I pray for strength everyday because I need it now more than ever. I often feel lost, and absent from the rest of my family, consumed by thoughts of Jo. I miss him so much.
Jojobinks you are amazing in every way. I cherish the time we spent together so much today especially. I want you to know I will never lose faith in your healing. You are too pure, too perfect to be anything less than what you were. You are fighting your way back to us one miracle at a time, I'm sorry I'm inpatient. We love you to the moon and back sweet angel, you've got this.
Sorry to have missed a few days with updates, on the bright side I haven't updated because Jo has been solid with nothing new to report. He has rebounded well from his skull surgery, and we anticipate staples out within 10-15 days. Jo is young and strong and healing does occur pretty fast, so it could be sooner.
Jo is not in PICU anymore which is great. In fact he has gone from a monitor with multiple areas being measured to just oxygen saturation and the periodic blood pressure measurement. Less monitoring means less oversight and less concern over stability, we like that.
We are now at the point where discussions about going home occur almost everyday. I don't want to leave with any sutures in place, so that leaves us anywhere from 10-14 days to discharge. Discharge is contingent on the following:
The top issues are related and the hospital has been amazing with setting everything up with our insurance. Soon we will meet the medical rep to review the exact equipment we will receive at home while in Jo's room. There are typically differences between hospital and home equipment and this gives us the opportunity to see those differences before we go home. In short everything about equipment and room setup could be covered and in place in a few business days, certainly not something that will keep us here longer than needed.
The last 3 issue are directly related and why we need to make the most of the next 2 weeks at the hospital. We need to act like the nurse aren't here. We need to act like the Dr isn't just down the hall, because the terrifying reality is, soon enough they wont be. In fact we are required to spend a full 24 hours conducting all care prior to be "allowed" to discharge. We will only have help if we call for it, and we will be expected to handle it all. Handling it for 24 hours without any professional help sounds scary, until you realize that is our new normal. We anticipate at least 8 hours a day of in home nursing to relieve mom and dad, but anything more than that is unknown and certainly not guaranteed. The journey continues, we know God and our friends and family will continue to see us through.
Please keep our family in your thoughts and prayers. While we are extremely happy at thought of Jo going home we are also scared. There is nothing worse than not being able to help your child. For the past two months virtually all of Jo's care has been out of our control. Since initiating the take over of his everyday care we are both excited and scared, but we are ready for the next challenge.
Jojobinks mommy and daddy are here and we love and miss you so much. Every time we feel sad or desperate, we look at you and feel renewed. You have shown amazing strength and courage, the same strength and courage mom and dad will now show you. We are as ready as we can be to put our home and family back together. Don't be scared, we asked God for to let you come home thousands of times, he answered our prayers. He remains with us as we prepare to receive you at home like we did when you were born. We know there are many more challenges ahead of us, but also many more miracles. One miracle at a time baby boy. We love you to the moon and back sweet angel, this time we've got this!
Quick note. Jo came out of surgery with no complications. He is resting but clearly uncomfortable and taking meds for pain.
The surgeons met with nothing unexpected. Jo will be watched in PICU tonight.
Thank you all for your thoughts and prayers. Please pray for strength for Jo tonight and relief from the post op pain. One miracle at a time...
Jojobinks we love you and are so proud of you! You are amazing in everyway, God is with you! Reat easy tonight and let the healing continue! We love you to the moon and back sweet angel, you've got this!
Jo is currently in the operating room having his skull re-attached with 2 metal plates. The procedure takes 1-2 hours, which seems like an eternity to us. Believe it or not the procedure is so uncomplicated that it could be viewed as "out-patient elective surgery" although it is rarely done that way because patients are normally already in the hospital. Simply amazing.
Jo's blood pressure/ heart rate issues were found to be normal after a gammit of tests. In short his body doesn't need a high heart rate to give his body what it needs. While we will always monitor it closely it would be considered part of Jo's normal range. He has been resting very peacefully for several days and never once appeared to be in distress so it makes sense that nothing was wrong. While it was happening and we were staring at a screen with his docs it was very scary. We are very happy that nothing was problematic was found, it amounts to Jo being a very, very, very deep sleeper. Something mom and I haven't had in quite awhile, ironic.
Jo's stitches will be in at least a week, and mom and dad will continue their home care training. Thank you all for the prayers and positive vibes for Jo. We all need your strength to make it through, and we can't thank you enough.
Fair warning mom and dad are pretty much bear huggers at this stage. We have hugged waiters, nurses, doctors, barbers, volunteers, teachers, cops, and off course many many friends and family. We hold a little too long, squeeze a little too hard, but we just can't help ourselves we love you all. Since day one nothing has felt as comforting as a good long hug, usually mixed with tears. In the digital world we live in, you sometimes forget just how powerful a good hug can be, until you need one. So grab a loved one and squeeze them extra hard for us, especially your beautiful kids. Give them a hug from Jo and the Witzmans, and hang on a little longer than normal. Jo always tried to squirm away from dad's hugs, and hugged mom so hard it was scary. When I did catch him I still remember what an amazing feeling it was, we will feel it again someday soon. I can't think of a more noble cause than asking each of you to hug someone you love! Go get em'!
Jojobinks your journey continues and this is the last big step between you and having you at home. Stay strong, we are here for you and we will always be. The Lord is with you, guiding the surgeon's hands and we know you will be fine. We love you to the moon and back sweet angel, you've got this!
Here's a shot of a Jo family hug!!!
Jo has been moved back in PICU for more consistent oversight of his blood pressure. They are still trouble shooting his drop in heart rate and have ordered another CT scan. They don't suspect they will find anything on the scan but just want to be sure.
Blood screens came back with no issues. The Dr in PICU suspects that this could be Jo's new normal heart rate span. Basically he needs less heart rate to keep his body functioning and we may see swings like this for the foreseeable future. Jo is in the best care possible and we are happy about that. We are confident the folks here will get this figured out in short order. He has not been given any meds to increase his blood pressure which means there are still many options out there to get things in order.
More prayers needed, keep the positive thoughts coming...
Jojobinks we are back in PICU with you. We know you are ok, and we know you are fighting. Rest with God and let him continue to heal you, we have faith that this is just another bump in the road. We love you to the moon and back sweet angel, you've got this!
Hi everyone just a quick update on Jo's situation. This morning Jo's heart rate slowed more than we would like to see. Throughout his time here Jo's heart rate has consistently run in the low 50's or high 40's when resting. In blood pressure terms, he typically runs 90-100/ 50-60. These are Jo's "normal" stats and consistent with a strong heart and an athlete at rest. When Jo is sleeping he really gets a low heart rate, mid-40's is not totally uncommon. In general we would like to see numbers in the 50's but we have seen it all in our time here.
After dropping the kids at school we talked to the nurse who indicated Jo was in the low 40's. She was with him yesterday and knew it wasn't "normal", so she contacted the Dr to review the situation. Jo does not appear to be in distress, but he seems lethargic to mom and dad. Every other vital sign is good, the EKG showed no heart issues, he has had a chest and stomach xray (nothing noted). He had a ct scan yesterday (no issues), eyes are responding not enlarged, he has a normal temp, and is oxygenating well. He seems a little pale to mom and I but nothing alarming. They are running labs, and cultures of everything just to be sure we aren't missing anything . If Jo's heart rate was at 50, everything else would be "normal" and we would probably being in the surgery waiting room right now. Just 10 points make a huge difference.
Please send out your prayers and positive thoughts for Jo's heart rate to improve. Everyone is doing their best to ensure nothing is wrong . The nuerosurgeon was fine with performing the surgery today or delaying, we chose to delay and let Jo rest and restore back to normal. We will keep everyone posted!
Jojobinks stay strong and we will let you rest today. We know that when you rest you heal, and right now you are healing so deeply and peacefully it can be scary to us. We will put our hope in God and our strong baby boy. This is just a minor setback, and yet another sign to go at your pace, not faster. Mommy and daddy are here, we love you to the moon and back sweet angel, you've got this.