I apologize for not writing sooner, Jo is doing fine, no setbacks to speak of, he is his usual strong and steady warrior. He is amazing.
I can't describe the pain I've felt lately. Seeing my son in bed day after day just has a way of slowly crushing your spirit. I pray often, cry even more, and try to match the strength my son has shown me the past 5 months. My wife is amazing, but at times are eyes meet and the desperation shows. It is rare that tears don't well in our eyes when talking about Jo, it just hurts so much.
Jo continues to show progress in his recovery. He shows amazing strength and determination with PT and has increased his ability to sit up to over 15 minutes. He is clearly uncomfortable at first, but he fights through, stabilizes, and amazes us each time. It can be difficult at times to recognize the substantial improvements Jo has made when you see him every day. Anyone who visited Jo just a few months ago would tell you his progress is astounding, but as parents it is painfully slow.
I still have a hard time looking at his pictures. My daughter was watching some of his youtube videos the other day and heard his voice from across the room, instead of lifting me up it brought me to tears.
Summer has gone and fall is beautiful in the PacWest. Jo loved this time of year as well, he is the only kid his age I've seen genuinely in awe of the beauty of nature. He would look at a tree with changing leaves and tell his mom "isn't it pretty", not common for a 12 year old boy. Jo is so special, just like all of our children, without him we are simply not whole.
In our house we laugh, have fun, and are often happy despite our situation. God gives us strength enough to make sure the rest of our family doesn't mope around and wallow in our thoughts of better days. What is most obviously missing from our life is true JOY. You know, those rare moments that you stop, look at your family and life, and reflect on how lucky you are and smile. There is always a lingering feeling of helplessness that takes constant restraint to overcome.
On a light note Jo has been smiling more. It is magic to see, and it lifts us up so high when he smiles. His favorite thing to smile about is anyone making fun of his dad, some things never change. I am also guaranteed a smile when I dab. That's right dab! You see I'm not good at it, neither is mom, and it's easy to see why he finds it funny. Before this tragedy he would have laughed out loud to see us try that, I pray someday soon we will hear the laugh that comes with that intoxicating smile.
I'm back at work and have never felt more humble. I can't say how many people have hugged me back to life. I've done my fair share of turning handshakes into hugs, please accept my apology and don't report me, but a handshake just doesn't feel right. The amazing support around me and my family is still surrounding us and doing even more to make our lives better and Jo's recovery more attainable. I will post a flyer for an upcoming fundraiser benefit for Jo in this blog. If you can find the time to swing by and say hi we would be so touched. So many have already done so much, we could never explain how special that makes us feel.
Please keep praying for Jo and our family. The deep sadness comes in waves, and for my wife and I the past few days have been especially hard. We dream of Jo talking, walking, and playing and don't ever want to wake up. When we do it is hard to get up and begin the day. With the support of our friends, family, and God's love we power through the bad days with hope and faith in the future. We could not do it with each of you, thank you does not begin to express our gratitude.
Jojobinks keep being strong and healing. You are a miracle, every day you come one step closer to us. Life without you is unbearable at times but we will be patient and be right here waiting. We love you to the moon and back sweet angel. YOU'VE GOT THIS!!
Hi Everyone, thank so much for the prayers and comments about Jo's progress. He really is getting better every day, and we are confident the love and support he receives and God's healing hands make all the difference. Following Sunday's great day with Jo his buddies and family we had a very tough yesterday. JO IS FINE, but yesterday was a day we relied heavily on our faith in God and friends to make it through.
I'm pretty sure most of you know that Jo is currently fed via feeding tube as he heals. The tube (G Tube) is directly into his stomach and we administer formula and meds multiple times a day through the tube. It is both very common, and safe, and complications are rare. Yesterday Mom noticed that the tube seemed to be out of position, definitely different than in the past. It should always be flush against the skin and in this case it was protruding a couple milometers. The site was generally clean but looked a little irritated. Mom and dad have been trained to look at it, take it in and out, and what signs to look for of potential issues. Slightly protruding and redness in the area means we need to investigate what's going on.
Cutting to the chase, it would need to be reset in place by a doctor. Jo was generally comfortable but if we did any investigating of the area or tube Jo would be in obvious pain. Now comes the tricky part. Jo is uncomfortable, he may have an issue, and we have to get him to a Dr. ASAP. Call 911. Not an emergency but the fire trucks and ambulance arrive. The local hospital is under construction (awesome, ugh). Back to Mary Bridge Children's we go, 26 miles away, in the back of an ambulance. Back to Jo in the car, right after a feed, with no meds to help calm him down (we use the G tube to administer meds).
Jo gets there, and off course gets car sick. We go into the ER and the Dr. looks and says no problem, we will reset and send you on your way. They attempt to do so and, we have a problem. Jo is in pain during normal insertion which should not be the case. It should be simple in and out, with little to no discomfort and since Jo is hurting something else is wrong. Xray with dye to determine where is the fluid going if not the stomach? Xray shows it is still in the stomach (great news) but it is out of position and that is what is causing the pain. A radiologist team will have to re-insert during passive radiation to make sure it is placed properly. While all of this sounds scary and crazy, and it feels that way to Mom and Dad, it is not life threatening or anything to panic about. Worst case scenario would have been surgery again, and we have determined that is not necessary (phew).
We have no been at the hospital 3 hours. At least 2 hours of which have been just sitting and waiting. Wait for the Dr., wait for the xray, what for the radiology team, wait for the Dr. again, wait for the surgeon to review, wait for the room for the procedure, wait for another review....just brutal. Jo is comfortable the entire time, no issues, he is a champ. Dad has to leave Mom because kids are getting home from school. Mom is solo now playing the waiting game.
5 hours later they are done with placement, determine the cause was poor placement when re-inserted earlier in the week. As soon as the Dr. looks at Jo again he can be discharged. 60 minutes no Dr. Nurse has everything ready to go, just need that review, 90 minutes later still no Dr. One more wrinkle in this; we have no transportation ability for Jo, either in his chair, or lying down like this time, we are completely reliant on state run transportation services. He would have to take an ambulance home...If we had the right vehicle it would have been in the chair to the hospital, and home when we were done.
We arrived at the hospital at 1pm we were finally discharged at 715pm. The staff reached out to the cabulance company, transportation should be enroute. 815pm nothing. 9 pm, nothing. According to the staff there was a "miscommunication" and they have only now called, they should be here soon. 1015pm Jo is in the ambulance headed home. Brutal, just brutal. I spared the details of the phone calls and discussions with hospital staff about the ridiculousness of the process. This is still the hospital that saved Jo's life, the experience was horrible, but Jo is now home and resting, in no pain, and doing great!
The most difficult part of this entire experience is reliving the helpless feeling we get at times caring for Jo. We can handle so many things, but the moment something goes wrong we have to get help, and that process can be just as stressful as the issue itself. We prayed alot yesterday, it was the only comfort I could find.
Jojobinks we are so sorry you had such a tough day. Everything is fine now, you are home, resting, and improving. Don't ever fear because God is with you, and we are by your side. You never stop amazing us with your strength and resolve. Rest and recover, we love you to the moon and back sweet angel, YOU'VE GOT THIS!!
I apologize for not keeping everyone up to date but let me start by saying Jo is doing great! He seems to improve a little bit everyday, and it gets hard to keep up with postings in the midst of school starting and life in general.
Jo should be starting 8th grade this year, obviously this is a bitter sweet time for us. It is great to see Jo making progress but equally painful to see life move on around him so rapidly while his recovery moves so slowly. He should be at school watching his younger sister in 7th grade. Secretly Bella was really looking forward to having her big brother with her at school, it breaks our hearts that he can't be there right now. One day at a time...
Jo is so alert and happy when his friends visit it is just amazing how engaged he is. FULL EYE contact, smiling, almost laughing! Jo loves his buddies so much, he loves hearing them laugh and giggle, he wants so badly to make them laugh again, soon we hope!
Jo had his first in home physical therapy appointment and he did great! For the first time in 4 months Jo sat straight up in bed! Dad supported his back and mom his legs as he sat on the end of the bed. What amazed us both was his strength. We had grown used to thinking Jo was still to early in recovery to support his own body weight. We both felt he would be to "loose" to sit up straight, we were definitely wrong! Jo held himself straight up with minimal assistance and his head and neck needed no support at all. He smiled and turned his head left to right, it brought us both to tears to see such progress! It also immediately reminded us we have to keep pushing Jo and believe in his healing. God is working miracles and we need to let Jo show us! Our goal is to do this at least 2 times a day gradually increasing the total time sitting up. Small steps but very encouraging!
Jo is also communicating via blinking more. He can respond "yes" with one blink and "no" with 2. It is so powerful to include Jo with discussions about his care, comfort, preferences, and just to know that he is in there fighting his way back. He regularly watches Netflix (mostly walking dead marathon). It is so powerful to watch him engage in something as simple as watching TV, it is such a wonderful sense of "normalness". Jo performs miracles every day!
We continue to argue over everything that insurance provides and/or doesn't provide. Just the other day we realized that over 90% of initial requests have started with a denial only to be approved weeks later. They delay hoping you'll forget or give up, whilst leaving the patient without what they need; playing this stupid approval process game. If you run out of something and they have yet to approve the next shipment, you're left with no options but to purchase what is needed now. It is a horrible cycle, it can be maddening to say nothing of the cost. Jo should not be receiving his first PT appointment 4 months later, but here we are. The amazing people caught "in the system" understand how it works and can do nothing but empathize. We keep fighting, keep pushing, and despite the challenges we have done better than most, thanks to the amazing support of our friends and family. Thank you all!
Jojobinks we love you so much and are so happy to see how strong you are. Mom and dad are right here waiting patiently for more miracles. We are going to push you and give you every opportunity to show us how amazing you are! Be patient with us and help us understand what works and what doesn't, we will not let you down. Rest with God and let his healing hands continue to perform miracles. 1000's of people are praying for you and know that you are coming back to us, day by day. We love you to the moon and back sweet angel, YOU'VE GOT THIS.