Jo continues to be at Children's hospital in Seattle, receiving exceptional reahab care, despite the continuous ridiculousness of insurance denials. It is both infuriating and extremely sad to see the games they play even in a case like Jo. You'd think that if it was fraud they were worried about they'd chose another case with less obvious need. It really has nothing to do with the case, the patient, the circumstances, or any other human factor, it's pure greed. In the past year, and in previous years dealing with Jimmy's medical needs, I can factually prove one undeniable fact; The first step in any insurance claim is denial. The insurance company hopes you will miss a deadline, be too busy caring for your loved one, or too distracted or distraught to follow their bureaucratic laborious appeal process. They hope your caregivers are too busy to fight for you, that you will give up, and that all these expenses will just go away. In our case they hope we will give up and turn to Medicaid, costing them nothing.
Jo's pharmacy has been denied. Jo's in home nursing has been denied. Jo's in home PT and ST have been denied. Jo's nutritional needs have been denied. The best one yet his in patient rehab was denied 2 days ago (he's still there). Each denial requires its own separate appeal within 30 days. The clock starts the day they make the decision not the day you receive written notification, and that can take up to a week. There denial letters read like a supreme court justice opinion on case law but typically end by saying, he doesn't need it, it is not a medical necessity. The most recent letter denying his home nursing ended with, "The Physician involved in making this decision may also be reached at 000-000-0000".
We have a case manager who really does care, and she really tries to help, but even she has admitted I know the process better than she does. She can't believe that everything I've said would happen has happened exactly as I described. She isn't even allowed to discuss the reasons for denial and cannot connect me with anyone who can. The only person who can talk about the denial is a Dr. caring for Jo. They can "compare notes" and "clarify" Jo's condition with the hope that the medical director will reverse their position. They will only do that if it costs less than approving the request. So if Jo didn't have a nurse they want to know how likely it would be he could end up at the ER? What damage could be done without a nurse nearby that may cause a hospital stay to recover? Why can't mom and dad handle it? I'm not joking, these are really what they ask! Thank God we are surrounded by people who are more than wiling to take up arms to get this fixed, I'll close my rant by saying, none of this will deter us. Jo will get EVERYTHING he needs no matter the process, God by our side we will prevail. Enough negativity for one post, thanks for listening.
Jo had his medicine pump procedure on Saturday and his recovery was extremely difficult. He was in a lot of pain through Monday. The pain has subsided now but it was very difficult to see him so uncomfortable, it brought back many painful memories from his time in ICU. We are so glad the worst is over, and the pump has really helped his muscular issues, and it is clear the short term pain, will have a long term gain in his recovery.
Despite what Aetna thinks Jo will be at Children's for at least another week. It leaves us with more time to argue and fight for what he needs, we will get it done. I am certain that the Drs who are caring for Jo are far better suited to describe Jo's medical needs in a "peer to peer" setting and Aetna's mysterious Kirk Shamley "medical director" will relent and agree to provide what Jo needs. After all his decision wasn't based on any of Jo's conditions to begin with, it was based on money, and to him Jo's not a boy on the road to recovery he's a number and an expense. Aetna is playing a game, taking the odds that we will give up, they will lose. I honestly don't know how this guy sleeps at night, it is truly amazing. I'll update when we know more, but for now pray for us, pray for Jo, and pray for the people at Aetna towing the company line despite its impact on families like ours. Forgive them for they know not what they do.
Jojobinks your strength inspires so many people to never give up. We will never give up in getting you what you need. We know someday you won't need any of it but for now rest easy WE'VE GOT THIS. They don't realize who they are dealing with, and who we are fighting for. Stay strong, rest and heal with God by your side, keep the miracles coming! We love you to the moon and back sweet angel, YOU'VE GOT THIS!
Updating my last post Jo is scheduled for his first surgery (backlofin pump) on Saturday. Initially we had hoped it would be done today but due to emergency surgeries for other children the procedure was delayed. It is disappointing only because with all of Jo's activity the reason for the pump is becoming more and more obvious. Jo is clearly uncomfortable more often and the pump will make a huge difference to his day! Saturday it is!
Jimmy was discharged today at about 230. He was fairly well behaved in the unit. Obviously we want that, but it is bitter sweet because without witnessing the challenges we experience at home in the unit it is very difficult to test the effectiveness of treatment. The unit also focuses on one on one counseling and discussion about why the patient is there, strategies for reducing aggressive behavior, and identifying triggers and solutions. These meetings are meant to be with the patient and family, and while we greatly appreciate being there for Jimmy, by design Jimmy himself doesn't benefit as much due to his complete lack of participation. He can't tell anyone what is wrong, why he acts out, what would make him feel better, or even comprehend why he is in a new place away from home. I've joked and said he started out thinking he was at camp, and by day 2 I'm convinced he just thought it was a boring camp....As a parent you also feel pretty lousy trying to convince people how bad your kid is. "No really, he's never this good" You can't help but feel like you are being judged for how YOU handle the situation, and whether or not you are the reason these things happen. Brutal, just brutal. In his 5 nights in the unit he acted out 1 time, damaged nothing, and basically relaxed his days and nights away. Despite a few times he "looked" frustrated there really was very little to report, and even less opportunity to see if the new meds are effective, as is always the case, we have to find out at home. We weren't gone from the hospital more than 30 minutes and Jimmy had already acted out. We got home and it happened again almost immediately. About an hour later once again. We will give the meds a chance to do their work and pray for the best Jimmy needs our prayers.
Jo continues to excel in his recovery. Physical therapy reports increasing speed and strength on his left side. Moving on command and at times with force. We hope for similar progress on his right side after the surgery to relieve the muscle spasms. He is doing great in occupational therapy and speech therapy communicating more and more with his computer, buttons, eye gazes, and he even calls the nurse via a button when he needs something! He is full of smiles, he works so hard that he does get tired but he works through it. The kid is so inspirational, and his smile is unforgettable. He has one over the hearts and minds of his caregivers and it is a joy to be around them and watch his progress. God is amazing, his gifts on full display, Jo remains a testament to God's love and the incredible faith of everyone in Jo's life!
The picture below is worth 1000 words. We are so lucky to be able to be that close to Jo after all he has been through. The bond between Jo and his mother brings me to tears more often than I'd like to admit. I am convinced a huge part of Jo's constant hard work and recovery is his overwhelming desire to hold his mother again. To play with her hair, to kiss and snuggle again, to say "I love you mom" like only he can. Like he repeated over and over that fateful day on the way to the hospital. Those days are coming back we believe, we know, it is coming.
As for dad often reflect how much I looked forward to watching Jo grow into a great man right before my eyes. The games I would watch with beaming pride, the athletic prowess he seemed to naturally possess, those rare moments when he asked me questions about life. I often reflect about these times and remind myself they are not gone, only delayed. My faith in Jo and God gives me the patience I need to make it through the hard days.
Jojobinks we love you and are here for you each and every day. You amaze everyone! Keep working hard, heal with God by your side he will not let you fall. We love you to the moon and back sweet angel, YOU'VE GOT THIS!!
Hi everyone, Jo is working hard at Seattle Children's and completing his first week of in-patient therapy. In just 7 days we have seen more progress in Jo's recovery than over several months! He is busy everyday, a "typical day" consisting of:
For the first time in 8 months Jo was able to lay on his stomach and rest. I can't remember the last time he looked so peaceful.
Jo has 3 upcoming procedures that will aide in his recovery. None of them are considered "major" surgery but we still need your thoughts and prayers for successful procedures and speedy recovery. 2 changes will have a direct impact on his abilities to succeed in physical therapy. Over time his tendons have shrunk a bit and need extending in the each leg to get his ankle mobility back to at least 90 degrees. In addition he experiences a great deal of discomfort on his right side when his muscles "tone" (basically since the injury his right arm and leg will spasm, stiffen, and extend without control) he takes a drug to lesson the activity but it only last so long, and its effectiveness is fading. You can imagine how that would impede his progress in physical therapy. Jo will receive an internal pump that distributes medicine directly for immediate and continuous relief for Jo. It will be extremely helpful for both his recovery as well as give Jo some much needed pain relief.
The last procedure is very exciting. Jo will have an endoscopy and swallow test to determine the need for his trach. The Dr.s don't see any other evidence of a need and we are beyond hopeful that Jo can have his trach removed for good! By this time next week, it is ENTIRELY POSSIBLE. Please God Please!!!!
A great part of his recovery is the involvement of family. We are an important art of Jo's motivation and keeping his mood up so he can continue to work hard. With that we have some challenges being there as much as we'd like.
For the first time in almost 9 months Dad went a full day without seeing Jo. At a time when you yearn for nothing more then being together with your family it was the only option we have. As one son makes amazing progress in his recovery our autistic son Jimmy becomes more challenging everyday. His inability to communicate his needs creates such unbearable frustration for him he lashes out. He is big and incredibly strong, and there are times when he is a danger to himself and others. It's easy to see why hospital visits must be well planned, timed perfectly, and often end in an unscheduled early departure. When Jimmy acts out his behaviors are so poor only Dad can intervene and sadly it something I've gotten used to . Jimmy does not want to get angry, he wants so badly to ask for what he needs. His ability to remain as focused as he is could be considered a miracle. Sensitivity to lights, sounds, a dog's bark, overlapping radio and tvs, creates a chaotic scene in his head, he flaps wildly until he just loses it. Lately is seems obvious we need to come up with a new plan, his meds need adjusting, a very difficult process to go through. The final straw came as we visited Jo Saturday afternoon. The drive is fairly long and Jimmy was pretty agitated by the time we arrived and after lunch he just lost it. In the hospital Starbucks he ran across a table and jumped on Dad's back, knocking the table down and a picture of the wall. Since we were already at Children's we immediately sought help and after about 7 hours of the admission process Jimmy was placed on the in-patient psychological behavioral unit. His unit is about 1000 meters away, he is placed with other challenging autistic kids, and in 5-10 days we should have it sorted out. And there you have it...
2 kids at Children's both recovering. One from an injured brain and the other from a malfunctioning one but by the grace of God, both home soon in a better place that when they left. Thank you all for the love and support, one day at a time, things will get better. We know God has a plan, we don't expect to know what it is, or how it will play it, but we have faith. We were chosen for a reason, and although at times we wish we weren't, we are strong in our faith in love. WE'VE GOT THIS.
Jojobinks we are with you and no now more than ever we see you are right there with us. Working hard, pushing yourself, and winning over everyone with that magical smile. Stay strong miracles are happening everyday. We all can't wait for tomorrow, you are amazing! We love you to the moon and back sweet angel. You've got this!
Jimmy rest and relax, we can only imagine what it feels like to battle within your mind. We know you love us and we love you dearly. We will get this sorted out. Stay strong and you will be home soon. We love you!
Today began a new chapter in Jo's recovery, a very exciting time for Jo and everyone witnessing his miracle. Today he was admitted to Seattle Children's Rehab unit! Just a month ago Jo wasn't ready for the intensive therapy of inpatient recovery, and just like he's done time and time again, Jo has beat the odds and is ready to accelerate his healing!
Right away all the therapists and doctors were impressed by Jo's abilities after reading his medical file. Off course his smile captured their hearts instantly and although he was obviously nervous about heading back into the hospital I think he knows this time is different. It was so exciting to hear his care team talk about goals, what is ahead, and how WE would get there together. In just a few moments of time it was obvious that the unit functions as one team, with one goal, bring Jo back. Let him show us what he is capable of. Push him, test him, question every treatment, make sure it is appropriate, make sure it is best for Jo, if it isn't change it! It has been a long time since any care team has made us feel so validated in Jo's recovery and we couldn't be happier. It wont be easy, but we have faith.
Jo's days are now filled with intense physical therapy, speech therapy, occupational therapy, recreational therapy, neurological reviews, and constant progress updates. The intent is to maximize every hour of everyday to reconnect damaged pathways in Jo's brain, and watch miracles happen. It is hard to think of a time we have been filled with more hope.
Off course this time will put some stresses back on our family as we navigate being there for Jo and caring for Jimmy and his special needs. We are guessing 2 round trips a days at a minimum 100 miles a day. Far too many take out meals and way too much money spent on gas. One unique element to his rehab plan is the involvement of family and friends. Many times we can help motivate Jo, encourage him to push harder, lighten the intensity, and generally make him feel more at ease as he puts in hard work everyday. Thanks to generous donations from so many of you all of our vehicles are ready for this, now it's just the day to day cost of living, driving, and soon to come medical bills that lie ahead! Thank You!
To put it bluntly the commute will be brutal. At best it's a 45 minute drive, poorly timed it can take 90 minutes. It's all a small price to pay for this amazing care but it will be challenging. We can't thank our friends and family for the support they showed us as Jo initially fought for his life, so many sacrificed so much on our behalf. The next chapter begins and each of you have made it possible.
Please keep us in your thoughts and prayers. Jo is so strong! He is continues to be a testament to God's love and amazing healing powers. Jo can have visitors while at Children's and loves seeing his friends, please let us know if you liked to come see the miracle in person!
Thanks so much for the love, sacrifice, and generosity you have given to our family so freely, we are so blessed. Jo is making his way back to all of us, we just need faith and patience.
Jojobinks you are more and more amazing everyday. Your resolve and strength leaves us speechless at times. Your smile still lights up a room, and nothing, absolutely nothing, compares to how it makes us feel to see it. You are resting and healing with God by your side, he's made you perfect in every way, and you are a testament to what love and faith in God can bring. Do not be scared, we are here with you, you're in great hands, rest peacefully and heal but work hard! Show us your amazing strength! We love you to the moon and back sweet angel, YOU'VE GOT THIS!!!