Journal entry by james witzman — a minute ago
Great night for Jo with no brainstorming at all. Jo is extremely stable, all vitals signs have been solid, he is breathing well (sounds like he is snoring), and it is amazing to see his improvement from when we arrived 3 weeks ago. Jo had a few visitors last night, and moving forward we welcome anyone to come say hi. Please text Alex (206-473-1211) or I (206-697-6121) if you're planning to come by. Our schedules are becoming more regular. Generally arriving in the evening has worked best around 7 pm. We've had time to meet in the cafeteria seating area, chat, eat something, and go see Jo. If you want to just stop by and say a quick hello or prayer let us know and we can put your name on the list. It requires no login (but please sign the guestbook), is very user-friendly, allows for much better content, has connections to facebook and instagram, and lets everyone post comments and pictures for everyone to see ( Share love section). Jo is still scheduled for tracheotomy surgery Tuesday at 1300. We are praying and asking for all of Jo's friends and family to pray with us that he will not need this procedure. His performance this weekend and Monday will dictate next steps. We also understand that if a tracheotomy is necessary it may not be permanent and it will be best for Jo at this time. We like to think not performing this surgery is more of indication of just how well Jo is doing, that is why we are praying that it is not needed! Jo is also regulating his own temperature now with no support. He has had a raised temp for several weeks combated with Tylenol and ibuprofen to regulate. It is nice to see less and less support needed for Jo! I feel once again obligated to thank everyone for the generous donations. We are both overwhelmed by everyone's support. Today we started reviewing a home bed and a few other essentials, and without your support, we don't know what we would do. Even a basic bed is over 5k and we will need in home nursing, so you can imagine how daunting the future looks to us. We are so lucky to have all of you! Jojobinks we are here waiting for you to open your eyes. We love you so much, we miss your smile, your laugh, and those beautiful eyes (not to mention those dimples). Be strong my son, one miracle at a time. God is holding you, come back to us soon! We are so proud of you and love you to the moon and back sweet angel.
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Journal entry by james witzman — 2 hours ago
Jo is stable and in the process of being connected to an EEG. They want to recheck that he is not experiencing any seizures because they plan to stop administering the anti-seizure meds. Good news, but I hate seeing anyone mess with his head, at all, ever...he is doing fine just understandably agitated by the many probes. Aside from that, there isn't much new to report. His vitals remain strong and overnight he did get some rest. 1 episode of agitation but otherwise a restful evening. His O2 saturation remains very strong, with just a few, very short and infrequent dips when he is agitated. His coughing has subsided and he is improving his ability to manage clearing of his airway is improving. The tracheotomy is planned for Tuesday @1300 , prayers needed for him to continue to improve and perhaps it is not needed! Be strong Jo! Alex and I want to take a moment to thank the thousands (yes thousands) of people helping us through this incredibly challenging time. The continuous offers for help, the meals that nourish us, the prayers and positive messages we receive every day, the visitors, and the texts of love and support are truly amazing to us. I am certain we could not have made it this far without so many great friends and family. A couple of questions people have had: Do you want visitors, can we visit, when is a good time, what room? The simple answer is yes, we like to see all of you and Jo enjoys hearing from the people he loves. The challenging part is timing and ensuring a family member is here to be with you. We would recommend checking with us about an hour before you head to the hospital just to ensure timing is good. It can be tough for kids to see Jo like this, but most have handled it well. They suggest no more than 2 visitors at once, and there is a nice waiting that can support plenty of visitors while we go 2 by 2. Jo is in room 702 in the Marybridge PICU. Is there anything else we can do to help? Honestly, we are so overwhelmed by how much support we've already received! The meals have worked out perfectly and right now we feel blessed by having everything we need to support Jo and our family. If you want to do a meal, it is extremely helpful and the link (http://www.takethemameal.com/meals.php?t=VCEM9113 )on this site under ways to help. Thank you all! Do you need any financial support? We have received so many generous donations along this journey. It is important that each of you knows we are spending every dollar on our family and for Jo's care. We are making at least 4 trips a day to our home in Kent and trying to keep up some normalcy with our kids. Expenses have added up and we could not have made it this far without the support we have received. We are deeply touched by everyone's generosity and personal sacrifice on our behalf. The Gofundme donations link (https://www.gofundme.com/josephsjourney2 )on this site under ways to help) is just unbelievable. To think that so many people have donated to us is truly overwhelming. We anticipate significant costs to continue for Jo's care for an indefinite period of time. Your generosity puts us on track to ensure that Jo receives everything he could possibly need. Lastly, I am working on getting Jo his own website today. More details to follow, but we'd like a place where everyone can visit, see and post pictures, share stories, share their thoughts, make video tributes, see these updates, and much much more. I will update you all on the specifics ASAP. For now, this is the place for the most current info and links for meals and donations. Thank you all from the bottom of our hearts for joining us on Jo's journey. Jojobinks your friends and family are thinking of you constantly. You have touched so many lives, and you are loved so much. Keep fighting, one miracle at a time. God is with you and mommy and daddy are here. Rest and heal baby boy, we love you to the moon and back our sweet angel. Journal entry by james witzman — 5/3/2017
Jo is still stable and scheduled for an MRI in the next hour. The Dr. met with us to go over Jo's current condition and expectations following the MRI. The discussion was devastating on many levels, but hope is not lost. The terrifying: They expected Jo to be further along in his recovery overall. While we knew the damage to the left side was serious, the Dr. would have liked to see at least a little more activity from Jo since the weekend. Jo’s sedation has been decreased but following this weekend's setback he is showing less progression in his nuero evals. His left eye remains dilated, he is makingless purposeful movements than before. Jo has seen a gradual reduction in heart rate ever since the day of the injury. Not significant overall but declining slowly throughout his week here. The Dr. is worried about what that might mean to his nuero activity. Jo is still intubated and isn’t performing above the machine. Obviously seeing strong respiratory indications would be a good sign that his brain can still operate breathing on his own. Hope: Jo is young and strong, children are amazingly resilient. Jo made a purposeful movement as early as a few hours ago. Prior to the setback this weekend Jo was able to breath efficiently on his own with no complications. It is unknown whether he could breathe without assistance at this time due to current treatment plan. Regardless of results of the MRI it is still their best guess. Every person is different and damage is never “typical”, it’s impacts vary widely. Next steps: Jo’s team of doctors will review the MRI, meet with even more doctors, and eventually meet with Alex and I to discuss what they see. Based on the results we will discuss the logical next step for removing support slowly to test his abilities. This will be a gradual process, the first hurdle being removal of the breathing tube. I’ve never needed more prayer and positive thinking in life. I’ve never experienced this type pain, or this much sorrow. We are bringing his siblings to the hospital to be close to us at this incredibly difficult time. To our baby boy, Jojobinks you mean the world to your family. Your bright smile and subtle wit lighten our day and lift us on high. Your smile melts our hearts and you are loved immensely. Fight my son, we need you here with us. Life would not be the same without you. God has you in his hands. We love you to the moon and back sweet angel, mommy and daddy are here. Journal entry by james witzman — 5 hours ago
Good night, for Jo very stable. I will post a much longer update in the next 3 hours. Nothing to be concerned about. Just wanted everyone to know who is resting, and healing, and generally peaceful. I'll post again soon! Love you all, Alex and Jim Journal entry by james witzman — 5/10/2017
Jo had a decent night. Still recovering from the affects of being extubated. Slightly elevated heart rate, a few blood pressure spikes, and still coughing and clearing the remaining junk in his lungs. He needs rest right now and time to stabilize. His O2 levels remained strong, and they dropped the amount of pure O2 he was receiving which is a good sign. His breathing seems labored to us but it is normal post extubation. Prayers and positive vibes requested for Jo to relax and have a peaceful day. I'll update after rounds with the plan for the day. Good morning Jojobinks, another day of healing in the books. Rest easy, mommy and daddy are here and we love you soooooooo much! Journal entry by james witzman — 5/9/2017
Jo's feeding today was stopped at 0400 with a plan to proceed with extubation about 6 hours later. Don't want anything in his stomach during the process. We had a long discussion with the Dr.s yesterday I'll try to cover their points as best I can. I didn't have the strength to do it yesterday, sorry for not updating more frequently.
I did ask the Dr. about his thoughts on extubation today and he was confident Jo can manage the transition off of the machine effectively. In fact the settings supporting his breathing right now are minimal, he is out performing the machine on his own. I did ask the Dr. about his stability overall and his concerns about Jo's critical status. We remain in PICU, with abundant support, Jo has banked several solid days of rest and healing, his vitals have been strong, and although setbacks do occur swelling on the brain should have almost completely subsided. This is all encouraging news, the long journey has only just begun, but Jo is strong and every day he heals a little more. I will update as soon as I'm able following extubation today. Initially it will be tough to hear him breath as the muscles in his neck strengthen and get used to doing it on their own. It sounds like deep snoring. Over the next few days we are confident that will resolve, and one less machine will be hooked up to our precious baby boy. Jo and God are once again ready to amaze us, we can feel it. Jojobinks I'm not ready to accept the "best guess" about your future. Everything about you has been amazing since they day our eyes met. You were a gift God, he is here with us. God has a plan, and we will all be witness to his strength through yours. We will never leave your side, and God will not release your hand. He is leading you back to us. Keep fighting sweet angel, one miracle at a time. Let us see your eyes and that smile, there's nothing on earth we want more right now. Love you to the moon and back sweet angel, mommy and daddy are here. Journal entry by james witzman — 5/9/2017
Thank you all for your thoughts and prayers! The tube is out, he is oxygenating at close to the same levels as on the machine. For the next couple days he will be closely monitored and evaluated for any obstructions or abnormal breathing. Keep the prayers coming! Special shout out to Jo's best buddy Jackson who spent nearly an hour chatting with Jo yesterday. It was such touching a tribute to his friendship with Jo and Jackson's amazing family. Jo knew you were here Jackson and it made his day! Jojobinks you are amazing, mommy and daddy are here and there are thousands of people keeping you close to their hearts. Rest and heal, thank you God for this gift. Journal entry by james witzman — 5/8/2017
Jo has been steady all day through the night. Coughing through the flu clearing and breathing clearer each time. Yesterday was tough for reasons other than Jo's stability. The on duty Dr. Is not my favorite, she lacks a bedside manner, and I don't detect much empathy despite her job (PICU). She seems content to emphasize her clinical analysis of Jo. Jo's clinical analysis from a brain perspective has never been positive. She uses words like "unlikely", and phrases like "quality of life", and "making life decisions." She spoke with Alex and I about the removal of the ventilator in terms of "this is a life decision". Jo has been out performing the machine, and the nuero Dr. was certain that his respiratory system was not affected from the injury. The last thing she reminded of us was "the central brain damage is in an area that controls consciousness". She said it so calmly and matter of fact it's almost like I didn't hear it. She left it at that, which was fine because I was too stunned and crushed to ask anything anyway. The thought that he may not wake up, is a thought we will not consider, Jo will fight, he will open his eyes, he just needs time. Today @1030 we meet with a team of Drs to discuss what to expect in the coming days. This includes what we do if Jo doesn't respond to breathing on his own. There are several options, all of which would keep Jo stable, they just need to hear from us on what we want to do. It seems that some of the "whens" from the nuero Dr. have returned to "ifs" and it absolutely crushes us as parents. We are using all of our strength for faith in Jo to show everyone what he can do. My baby boy is in there, he can hear us, and he is fighting to get back to us. Today we need to focus prayer and thoughts on the tube removal. I'm not sure what time today but please keep us in your thoughts. One day at a time, one miracle at a time. Jojobinks, I drove home last night because I couldn't sleep. I am here outside your room and I feel your presence. I know you are fighting, I am so proud of you. God is with you, healing you. Your pictures are everywhere and I feel you looking at me telling me to be strong too. I will not let you down. I want you back so bad it literally hurts my body. I've never experienced this kind of pain. I would give anything to see you smile and say you love me. Mommy and daddy are here ready for your next miracle. Be strong Jo, you are in God's hands. He will not let you fall. Love you to the moon and back our sweet angel, seize this day... |