Jo is steady and strong. This morning he had his CT scan to check readiness for the skull replacement surgery. It is described as a standard process, and I guess if you're a nuerosurgeon it is pretty mundane?
Mom and dad are ready for the last surgery to be over, and to put the risks of any operations behind us. It's standard for the doc to go over all the things that could go wrong, right before you sign the waiver. Kinda funny, like we would say no to putting it back? The medical release process is something no parent should have to get used to, we know it by heart. They will open an incision large enough to place the skull "comfortably back in place", staple the skin closed and call it good, yikes. Mom and dad are also learning the ins and outs of trach care. Nothing is too intimidating yet, seems like we can handle it. If it wasn't our kid, we would be terrified to do it, but Jo gives us strength we did not know we had. One thing that is scary is the number of times they mention, "call 911" if this, that, or the other happens. I don't know about you, but we have never called 911 for any reason, Lord please make sure we never have to. They have a pretty robust "hands on" training program for home care, and we need to sign off before we are allowed to leave! We have time left before discharge to get our act together, we are confident we can do anything at this point! Discharge is still at least a week or two away (in our opinion). He will recover from tomorrow's procedure for a few days, pushing into the weekend. We will continue to learn trach care over and over and over. He will have the staples removed in 1 to 2 weeks. We also have to have the house completely set up to leave, bed, supplies, equipment, etc. etc. We still have to interview nurses, if you know anyone looking for a great gig, with a good family, and flexible hours let us know! The pay is not as good as hospital nurses, but for the a person paying for child care to go to work, it could be a nice offset to bring your kid to work! Not much else to report today. Jo is doing great. We are very blessed to have all of your support, we don't know what we do without it! Jojobinks mom and dad are here and you are doing great. You still rest alot but we know that means you are healing. Be strong tomorrow, it is just another step on your journey with God, he is with you. We have faith it will be a quick and easy procedure and you will heal quickly. Before you know it, you will be home with us, something we wanted for so long! We love you to the moon and back sweet angel, you've got this.
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Jo continues to sail along in his healing, sometimes it's hard not to get more nervous the better he does. The recovery process is not a straight line, it typically improves, crashes, improves, crashes, and then stabilizes. We are confident he is in the stability phase now, and he has never rested this peacefully since being admitted. The trach turned out to be a blessing after all, it seems like it allowed Jo to relax and focus on coming out of the fog.
Just yesterday it dawned on mom and dad that Jo is actually "awake". Praise God for that. His right eye is open about 8 hours a day and even though it's not wide open he sees everyone and tracks whoever is talking to him. He has also responded to requests like smile and squeeze my hand. It is amazing and at times painful to see Jo in there pushing so hard to do the simplest tasks. Sometimes he cries and we are convinced he is frustrated because he can't do more, YET. The final hurdle in Jo's recovery/ discharge is the skull replacement scheduled for Tuesday. It is "routine" which seems like a joke when you consider what needs to be done, but this place is amazing. It looks like Jo will not need to go back to PICU even post surgery. Mom and dad have come to peace with Jo not needing intensive care at this time. Intensive care is something you don't want your child to need, but the level of comfort you feel in that area is unmatched. We have been blessed with amazing nurses and Drs in the Jo's new room. They are so attentive and caring, we don't worry about Jo's care at all. Mom and dad are both scared and anxious to learn the details of Jo's home care. We have been overwhelmed with the details of home needs. Amazon now suggests I need medical supplies more than crossfit equipment! I have always been confident that mom and I can handle anything, time to test that theory! While we learn new things at the hospital a group of angels is preparing our dream house for our arrival. Giving their time and money to make our home the best it can be for the rest of our lives. Yesterday I received an unexpected call from a dear friend. She immediately started crying, and I told her not to worry or feel bad. She told me she was crying tears of joy. She hadn't spoken to me since Jo was admitted, and had suddenly been overcome with the presence of God telling her Jo was going to be ok. She felt compelled to call me right away and share this with me. We wept together as she told me that Jesus spoke to her about Jo, and although the journey would be long and difficult, he is coming back to us. It was a very powerful moment. The last part of our call focused on a gift that Jo and God has given all of us on this journey with Jo. PERSPECTIVE. She shared the number of people who have eased their every day stresses when they realize what is most important in our lives, the people we love. Today, and everyday, we want everyone to cherish the ones they love more than ever. Life can change in the blink of an eye. I long for the days when my biggest concern was my next career move, my next vacation, or my next project. Hug your kids, everyday, no matter what. Even the ones who pretend they don't like it. Especially the ones who say they don't, because they need it even more. Talk about life and how lucky we all are, how precious it is. The next time you get mad at someone, tell them God bless you, SINCERELY. Do more for those in need. Be more aware of those around you who need help, and help when you can. Pay it forward. Wag more, bark less. Embrace the beauty that we live in, thank God for standing upright and being able to do the simplest things. Think of Jo and our family often, and rest knowing that we are at peace with God's plan whatever that might be. He chose our family for a reason, use our story to inspire your own. Stay positive, when you're in doubt pray and ask for help, you will receive it. Put your hope in God, he will be there for you. Jojobinks you are an amazing gift to everyone. Your story inspires so many, and we are so proud of your strength and courage. You are a symbol of joy, who loves life and its beauty so much. We continue to be patient, we are right here waiting. We love and miss you so much. We love yo to the moon and back sweet angel, you've got this. Jo has banked a few solid days in a row, sorry for not posting yesterday but it was a busy day for mom and dad and there were no real changes to his status. He has smiled a couple more times and seeing part of his right eye open has become the new norm when he's awake. It is so exciting to see Jo's progress these past few days, and with that progress comes the absence of a need for PICU. While the care in PICU could never be matched anywhere else, our experience on the recovery side of the floor was equally exceptional and we cautiously look forward to the day Jo comes home with us. Being re-located to the recovery rooms, and receiving more "hands on" training and support brings us one step closer to returning to our new "normal."
A few medical notes on Jo's status:
Following the skull replacement surgery only the time needed to learn trach care and waiting for delivery of our home care supplies will keep us at the hospital. Looking at a calendar mom and dad realized we lost the entire month of May. We don't where it went, it is gone, and every day during it is just a hazy memory enveloped in pain and uncertainty. We have never cried so much, felt more hopeless, or slept less peacefully than May of 2017. The last 2 weeks in April are a literal blur of events, I hope to never re-visit, just horrible. If Jo is discharged by the 25th of June it will be 60 days here, and 2 days prior to what was to be his last day of 7th grade. Looking back I don't know how we survived until I read the 1000's of texts, messages, cards, gifts, donations, and well wishes we have received. It carried us many days, the Lord carried us others. All along, whenever we felt weakness or pain, we just looked at Jo fighting and knew we had to be there for him. His siblings have been amazing and have witnessed so much while also staying strong. The full impact of what has happened has yet to fully sink in with them, in this way they are just like their parents. It still doesn't seem real at times. We are determined to remain positive and put our hope in God. He knows the plan, he is with Jo, and he will bring him back when the time is right. We struggle immensely with clinical diagnosis of anything regarding Jo. We view Jo's health as a spiritual one, not a medical opinion. All docs agree on one fact, there is no person here or anywhere on this earth that can tell us exactly what to expect. That answer lies in the heavens, and we must have faith and patience to let him do his work. Jojobinks, we love you and miss you so much. We love watching you rest and heal peacefully. Please be patient with mom and dad while we learn how to help you. We are scared but your strength gives us strength to carry on. Rest with God, we know you will be back when the time is right. We love you to the moon and back sweet angel, you've got this. Today was a great day! Jo continues to improve and today we witnessed Jo's strength and the Lord's power in an amazing way.
Alex and I were planning to pick up our kids after school, and with Jo's stability lately we've been able to leave for short periods together. It doesn't sound like much to be together for a few hours, but we have come to cherish those subtle moments of "normalcy". As I bent over to kiss Jo goodbye I noticed his right eye ever so slightly open, and when he saw me he opened it even wider! I dropped my keys and started talking to him. "Jo, I am so proud of you. You are so strong. Mom and dad are here and we love seeing your eyes. We know this is hard, but keep it up! You are so strong! Jo, do you remember when you smiled at us a few days ago? It was amazing. Can you smile like that again? Can you smile at me?" He slowly but deliberately showed his teeth and curled his left lip into a half smile. You could see the start of his beautiful dimple, and he looked happy! This has happened once prior, but never this pronounced, and never when we asked him to. His eye locked with mine and it was like magic. He was reminding me to have faith. He was smiling and saying, "I've got this dad, don't worry, be patient." For the first time in over a month tears of joy rolled down my face. God is amazing and Jo is with him healing day by day. I never asked for a sign but I certainly got one! Just a few minutes later Mom got to the room. Jo's eye was still slightly open, she kissed him a 100 times in 2 seconds and asked him to smile again. He did! Jo is amazing. My faith is restored, Jo and God have their plan, and their timeline, and all we must do is believe and trust them. Thank you all for the kind words and support after yesterday's post. They gave Alex and I the strength to carry on, and never lose hope. Today Jo gave us an amazing gift, that smile. Jo could light up a room with a smile, those dimples, and today he lit up our hearts. He knew that I was hurting and reassured me in my time of need. I am still overwhelmed with joy. Jojobinks, thank you for pushing so hard. Thank you for fighting through the pain with that smile. We needed it so much. We will be patient, we will never lose hope, our faith will never waiver. We love you to the moon and back sweet angel, YOU'VE GOT THIS! Hi everyone, Jo continues to rest and heal, each day he seems more aware of his surroundings. It is clear he is still uncomfortable from the tracheostomy. When he moves he often opens his mouth to cry but no sound comes out. It is painful to watch. Jo's vitals have been steady since Thursday's admittance in PICU. The surgery provided another layer of relief for Jo as he no longer labors to breath and his snoring has lessened significantly. He is off any sedative, uses no heavy pain drugs, and takes tylenol or ibuprofen when he is uncomfortable. All around great news.
Jo's right eye continues to open to a small slit often. He appears to be focusing on you in those brief moments, it lifts me up and crushes me in seconds. When I look in his eye I see amazing strength, a new sense of hope, as well as a struggle, frustration, and pain. I experience overwhelming joy followed quickly by a wave of despair. I keep my faith and try to pray away the pain, I say the lord's prayer about 15 times a day. Dad is struggling to keep it together. The problem with Jo doing so well is the idle time I am left with. No big decisions, no advocacy needed, nothing I need to do. My thoughts consume me and I feel a dark wave overcome me. I try focus on the positives; Jo's progress, his tenacious fighting, his amazing rebounds after each setback, or his long periods of stability. Instead every picture, video, or even the sound of his voice haunts me and brings me to tears. You see Jo is much more than just a brother or son. He is a great friend. He is the light in our eyes. He is pure joy. He is compassion, caring, and loving in private and funny, witty, and playful in public. He means so much to so many, he is so special. I see him everywhere. The empty headphones on the coach. His scratched and dented cell phone on the shelf. His beat up old bike hanging in the garage. His idle go pro camera on the desk. His favorite Nikes laying in the hall. These things he loved so much, when will he need them again? I've spent long moments staring into his half open eye wondering "can he see me?" I've never wanted anything more than Jo back. I'd give anything. I'd do anything. I've never felt this much pain. There is so much more a could share, but it just hurts too much. I am doing my best to keep my faith, I need the lord's strength so much right now. I need Jo's smile, his laugh, and his touch so badly it causes physical pain. Jo is doing great, the Lord is bringing him back to us, the pain in waiting is overwhelming. Jojobinks, mommy and daddy are here and we miss you so much. You are the missing link in our loving family, we need you back so badly. Keep showing the same strength you've showed your entire life. Let God's healing hands touch and heal you, come back to us Jojo, please come back soon. We love you to the moon and back sweet angel, you've got this. Jo is doing great. As usual amazing us all with his speedy recoveries. He is already breathing without any oxygen support (room air) and aside from obvious uncomfortable moments from the trach site he is doing great.
Most importantly, he looks great! His color is back, he breaths without hug effort, and he is much more animated and reactive to what is going on around him. His eyes dart beneath his eyelids, he crys (it's normal so we like it), and he reacts when he is touched. He no longer needs sedation and it seems more and more like he is waking up! Definitely stirring like he is in deep sleep and we are bothering him. Short post tonight, sorry for the late post. We love you all, can't thank you enough for all the love and support! Focus your prayers, Jo wake up!!! Jojobinks you are amazing. You show us miracles on a daily basis. You use the Lord's power, not the machines. Mommy and daddy are here, go with God and come back to us. He is with you, he will not let you fall. We love you to the moon and back sweet angel, you've got this. Jo's surgery was a success and he will be sedated and resting for the next 24-48 hours. Thank you all for the prayers and positive thoughts, Jo is strong and proved it yet again. Jo's last setback, the complications with his respiratory system, can be attributed to a couple of key elements:
The trach will allow us to operate below such a blockage in the future. This made the final call on trach an easy one. When we are at home, we need every advantage to addressing any issues with Jo as he heals. The trach does not have to be permanent, and as Jo recovers we can reverse it. One miracle at a time Jo.
No big plans for the weekend for Jo, rest and healing, trach replacement isn't until 5-7 days by the surgeon. After that mom and dad learn how to do it. Jojobinks, rest and heal, you did great today. We both know you would have hated the idea of the trach, but God knew it was what you needed, and didn't let us leave without it. We know you are uncomfortable now but it will pass, you are a quick healer and will be back to feeling good soon. You don't have that tube in your mouth anymore, we can see you're beautiful face so clearly now. Since the operation you seem much more comfortable overall, and definitely more responsive. Mommy and daddy are here, we are so proud of you! We love you to the moon and back sweet angel, you've got this. o had a great night of rest that conitnued throughout the day. It was very comforting for us to see him so relaxed. No labored breathing, great vitals, and no long episodes of discomfort.
Since he is ventilated he is sedated but he needs rest to heal so we are happy about it for once. Tomorrow he will have the tracheostomy procedure at 0900. His surgeon is amazing and we have no doubts about this decision. Prayers please for a succesful op. Next up, extubation (off the ventilator maybe Saturday). Jo has come of the macjine twice already and responded like a champ. We expect no different from our baby boy warrior. He will need yet another surgery to replace his skull flap currently in the freezer. Another sedation and intubation, ughhh. Sorry for the late and brief posf, just didnt want anyone worrying. Jojobinks you amaze us with your strength and pass it along to us. We know you are finding your way back, mending broken pathways, and resting in God's healing arms. We will see those eyes soon, we can feel it. One miracle at a time. We love you to the moon and back sweet angel, you've got this. |