James's Journal

I thought this would be a good time to update friends and family because we are coming to the end of the \"official\" recovery period. His recovery has been remarkable! He has had no significant headaches for the past few weeks, he has more energy and is back to his crazy, loveable self. James probably had his biggest test of endurance last week where he was the teacher for beginner fiddlers at the Montana Fiddle Camp in Monarch, MT. His days and nights were filled with playing fiddle and guitar and having fun with friends and other great musicians from around the Northwest. Everybody was supportive and affirmative to James and it was very therapeutic for him to play again in that kind of environment. His plans this summer are to prepare for college at the University of Miami, FL, Frost School of Music. He received a full-tuition 4 year scholarship and will major in instrument performance in classical violin and jazz. He knows that he has a lot of work to do to be prepared for college by mid-August, and he assures me that he is motivated! In the next 2 months he will play in 5 weddings, prepare for his senior recital in August, and spend 3 days in a recording studio for a local country singer. James\' heart valve repair was successful and there is minimal leakage and stenosis. They cannot guarantee how long it will last before he will need a valve replacement, but anywhere from 3-20 years. Hopefully by the time he needs a valve replacement, technology will have improved enough that he will have the next surgery through a catheter instead of open heart surgery. The stroke does not seem to have affected his cognitive or motor skills. We have seen some slight changes that we hope are just recovery phase issues. We thank God that even in difficult circumstances that if we draw near to Him, He makes his presence known to us. Please continue to pray for the Schlender family and especially for James as he continues recovering and prepares for college.

It\'s so good to be home!! James is doing really well. We see him getting stronger physically and mentally every day. Getting back to church, hanging out with his brothers and friends, playing on his fiddle and guitar, taking short walks and going to his senior orchestra concert. He still requires a lot of rest, and his headaches are still there. Monday was his only bad day. He stayed in bed all day with a lot of head pain. Even though his cardiologist suggested that we go to the ER and get a CT scan, we decided not to, because his head pain was not getting worse. I think it was a good call. His recovery involves healing and remodeling for both his head and his heart. This will take weeks. We are trying to limit his activity and social time, but social is James\' middle name! It\'s just hard to believe it\'s only been 2 weeks since his surgery, and he has come so far in such a short time. We give thanks to God for His protection over James, and continued healing.

I\'m finally headed home! I just wanted to thank you all for keeping up with this journal. All of your thoughts and prayers have all been extremely encouraging and uplifting. I\'m so thankful for such great friends and family that have been so supportive through this whole healing period while I\'ve been in the hospital recovering. Right now, i feel great! I still have the ever-present headache and a little chest pain from where the chest tube was but thankfully I\'m doing a lot better. This whole experience for me, has helped me grow in my faith in the healing power of God as the Great Physician. Sincerely, James

A quick note to say James is really on the mend!! He\'s a new man this afternoon. He\'s cruising the hospital, took a shower and put in his contacts for the first time. Depending on the chest x-ray he just took, we might be going home tomorrow! We are both so ready to go home. Thank you for all the notes of encouragement and verses. They have blessed James and I a lot. James has promised me that he will write the next entry. We\'ll keep you posted.

James had a very peaceful night of sleep. They gave him pain meds and a muscle relaxant which helped him to sleep. He\'s very tired this morning, still not able to breathe deep because of his pain. The Dr. explained that the chest tube probably hit a nerve that caused the pain. This doesn\'t happen very often. It will get better, but it really set him back. They just could not get on top of his pain even with high doses of morphine, and it was very traumatic for him (and me). So pray for continued healing for James. He is so strong and brave. I kind of wish he would shed a least one tear, but he doesn\'t. So I cry for him.

Just a quick note to ask for prayer. Yesterday was a very good day. James even played Jesse\'s violin. Doug also went home yesterday. Today was a different story. They decided they needed to put another chest tube in because of the significant fluid around his lungs. All afternoon and throughout the evening his pain from the chest tube was excruciating. He is having trouble breathing because of the pain. A chest x-ray showed the fluid had drained, and so they have decided to pull out the chest tube. They are checking his heart right now. Please pray that pulling the chest tube will eliminate his pain, and that there are no underlying complications that they don\'t know about from this pain. Sorry I haven\'t kept up with the blog, but he has needed me constantly. Hopefully I will have better news next time. Thanks for praying.

James has been working on expanding his vocabulary. He\'s currently intrigued with the word, ineffable, which means inexpressible with words. We\'ve been having lots of interesting conversations in this hospital room. We are still in the ICU Suite. For some reason they gave us the biggest room, which is great! It occurred to us yesterday, that we have watched James\' life from infancy to adolescence flash before our eyes in the span of a couple of days. From utter helplessness to his first wobbly steps, from spoon feeding to self sufficiency, from \"what happened to me?\" to facebooking. James is still in ICU because of his continued head pain and his chest x-ray shows a lot of fluid around his lungs and a partial collapsed lung. He\'s working on getting that fluid out with more movement and the spirometer. He took his first shower this morning with Doug\'s help. We decided his hair was definitely at the waterproof stage (OILY). PT has been marching him up and down the halls, neurologists have been asking him to count backwards from 100 by 7\'s, and nurses always come by with those needles. He never complains, just thinks it all is a bit silly and annoying. He got a visit from the music therapist today (thanks Trina!). He played some jazz chords on a baby Taylor, played improv on a baby xylophone, and played the guitar while he made the therapist and Doug sing \'Sweet Baby James\'. (pretty cute) Each day has it\'s little baby steps. Please pray earnestly for the swelling to go down in his brain, and for clear lungs. My sister Stephanie whose sweet daughter died last year of Cystic Fibrosis, and watched her other 16 yr. old daughter fight through a cancerous brain tumor, shared this verse with me yesterday: \" Rejoicing in hope, persevering in tribulation, devoted to prayer\" Romans 12:12. That is what we are endeavoring to do.

James is still in the ICU, but will hopefully go to a floor room tomorrow. Slow, steady, continued progress is what we see each day. The hardest thing for James is the constant head pain that he experiences due to the swelling in his brain. He is guarded with his movements because they trigger more pain when he moves his head different ways. They tell us that the pain will subside over the next 4-10 days. We have already seen a difference. He is walking unaided, eating a little, doing exercises with pt and ot, talking on the phone and checking out facebook. He still sleeps a lot, which is very good for him. He stayed up for hours today when friends visited him. Kimber Ludiker, a fabulous fiddle player and dear friend of James spent the first hour talking, laughing, and playing tunes like only she can. She handed her $16,000 fiddle to James without hesitation. He took it as we held our breath, and showed the confidence and ease we are used to when he chunked a few chords. It\'s a start. We are carefully optimistic, but we are just excited to see how James re-invents himself. The only thing we know for sure is that God is sovereign and James belongs to Him.

We have been overwhelmed by the love and support of so many of James\' friends and family. Thank you from the bottom of our hearts. We will update you on James\' condition more this evening, but overall he is improving steadily and gaining strength in every way, tho not out of the woods yet. Doug (James\' dad) really wanted to share his heart with you in this update: Life on this earth can be really hard. Sometimes our greatest joy and our deepest pain come from the same place. When friends and especially family suffer, we suffer; when they rejoice, we rejoice with them. Watching my son suffer with such courage and sweetness shows me that God has put greatness in his heart. More than that, I see that same spirit to excel and overcome in all of you. When it says in Genesis that Adam and Eve were made \"in the image of God\", that is our heritage. Your outpouring of love and support is a clear demonstration of the greatness of God in all of you. Thank you so much for joining James, Sandy and I, and our dear sons, Josiah ( Sheree and Levi), Jesse (Bethany and Emily), Jared (Rebecca), Joel, Jordan and John, in seeking the face and heart of God in this time of pain and great hope. \"And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.\" Romans 8:28. This promise has never been more real to us. Bear with me, this is just where my mind and my heart go as I sit here with my son and see the peace of Jesus on his face as he sleeps. I know that God, who wove James together in the womb is right now rebuilding his heart and his mind. (Kind of a metaphor for all of us, don\'t you think?) Please allow me to include you in a few conversations James and I are having. Two passages have been especially helpful. In Job 2:10..., after the loss of his entire family and fortune, his wife said \" \'Do you still hold fast your integrity? Curse God and die.\' Then Job answered \'shall we indeed accept good fortune and not adversity from the Lord?\' And in all this Job did not sin.\" Wow. And in 2 Corinthians 12:8-10 Paul, who had an unknown physical disability said of his \'thorn in the flesh\', \"Concerning this I implored the Lord three times that it might leave me. And He has said to me, \'My grace is sufficient for you, for power is perfected in weakness.\' Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses...with distresses...with difficulties, for Christ\'s sake; for when I am weak, then I am strong.\" To which James replied in typically understated fashion \"that\'s a really good word\", and \"I especially like where God says \'My grace is sufficient for you.\' \" We find great comfort and encouragement in your guest book entries; James especially listens intently. Thank you so much.

James wanted to post on his facebook status, \"I\'m ALIVE\" Full day of neurologic evaluations, echo, MRI, chest tubes pulled, and trying to rest. He has had 2 major traumatic medical events in one day, and we are incredibly proud of how well he is doing and how hard he is trying. In the midst of his pain he has amazed doctors and nurses with his ability to engage them socially, showing interest in their lives. All the doctors have expressed positive feedback at how well he is doing right now. They also have expressed hope for a full and complete recovery. Even though the damaged part cannot heal and repair itself, the other parts of the brain can compensate and make up for the deficit. They said it is especially useful for him that he is left handed, but has already trained his brain to be right handed as well (for example playing his fiddle right handed). Each day we see improvement. Jesse came to play his violin again today, and we all noticed how much more attentive James was than his last visit 2 days ago. Continue to pray God would restore his brain to better than ever. Pray for protection against infection and blood clots, and that his headaches would go away. Thanks again for your encouragement. We read the notes to James and he listened intently.

This is the hardest update we have had to write. The doctors decided his recovery was not looking right, and ordered an MRI for his brain. A doctor informed us at 2 am that the MRI indicated that James has suffered a stroke either during or right after surgery. It is a moderate stroke that has affected about 5% of his brain. The doctor said full recovery is possible with time, but cannot guarantee anything. It is located in the front left part of his brain that controls more of the executive planning and decision making process. That is why he is able to converse easily and walk. Doug and I both felt there was something wrong even 2 days ago. We are back in ICU and they are doing a lot more testing. We are devastated, but hopeful. We know that James is in God\'s hands and that He will help him through this next tough phase of his life. We love all of you, and know you will support James in his recovery with love and prayers.

Wow! James is much better. He just took his first walk!! It was pretty wobbly but really great to see him try. Yesterday, it was impossible. I knew he was more alert when I woke at 4 am. He saw me and said \"Hi mom! \" and gave my hand a big squeeze. They will take out his chest tubes later and be moved to a regular room, out of ICU. He keeps asking for gummy bears and ice cream, but he feels nauseous, and has only taken 3 bites of food since Monday night. Even though he was very out of it yesterday, he did have 2 visitors. High School classmates that are going to college here in Boston, Jesse and Brianna. Jesse thrilled the staff (and us) by playing his violin. James asked him to play Ashokan\'s Farewell and a classical piece. While he was playing so beautifully for James, I was remembering that 1 week ago James was playing in the Kennedy Center in DC. It was such a wonderful night for all of us, and I\'m longing to get to hear him play again. Thank you for praying for James. He is a real trooper. Even in his drugged up state, he is as sweet as can be. When the nurses say sorry, when they have to do something that hurts him, he always says, I forgive you!

Long night, long days. Overall, James is doing pretty well. He is very, very slow to wake up and respond. They said some adult patients do that as a result of being on the by-pass machine during surgery. He is not able to do much on his own. Only through a lot of prompting and ordering. His chest hurts because of the tubes and he does not open his eyes very much. I think that is because he has a headache and he is dizzy and seeing double. The central line in his neck is out, and he will probably get his chest tubes out later on today. He is puking pretty regularly. Only had a little bite of food. He does respond correctly to the questions we ask most of the time. He still cracks us up with his Spanish and jokes he cracks. So we are praying that he comes out of this deep fog he is in, and begins to wake up and be James. You can also pray his b.p. will stabalize. It\'s been a little high, and that puts strain on his heart. We will try to get him to walk, but it is like making a very drunk person take steps. We would really like to see him get out of ICU by this evening. I know this all takes time, and Patience is the virtue I need right now. That, and maybe a little sleep! Thanks again for the encouraging words and many prayers. We do feel God\'s peace and presence.

It\'s about 6 pm, and James still hasn\'t fully been awake and alert all day. After they took the breathing tube out about 10 am, he was extremely hard to wake up. It was worrisome for us at first, but they said every patient responds to the narcotics differently. That being said, the things he is saying under anesthesia is keeping us laughing the whole day. First of all, the big surprise is that he is speaking Spanish! One of his first words was hello in Spanish. We ask a question and he says si, senor. Not only that, he is talking text-speak, like jk, lol. But his most often heard statement is, my chest hurts, why does it hurt? We did (with great difficulty) finally get him up and in a chair. Basically, he will respond to you a minute at a time before falling asleep. I tried to take a little video, but he always falls asleep before I can take it! So James is being his usual, goofy self. I think he\'s won all the nurses hearts! Speaking of nurses, they are great! I\'m not sure when he will get out of icu. He needs to get off certain meds, and wake up more. Thanks for praying, and for all the great notes. He will love reading them all when he is able to.

Good morning! James had a great, uneventful night of snoozing. It took about 2-3 hours for them to get his heart rate and b.p. under control, but all has been pretty quiet. He is off the sedation medicine completely now, and trying to wake up. They don\'t take the breathing tube out until he is fully awake, so he is fighting it in his drowsy condition. He has his mad, furrowing brow face on. We saw that a lot when he was 2 years old. It\'s kind of cute actually. This will be the hardest day for James, but he\'s a fighter and has a strong spirit, so I know he will do well. Both Doug and I are so happy and praising God for the surgery outcome. Couldn\'t be more excited!!!

12:30 Spoke with Dr. Del Nido. Surgery went very well. Successful valve repair. He was pleased with the outcome. He said leaking was major (50%) and when they were done there was very little leakage.. He should be able to feel an immediate difference because his heart is doing what it is supposed to do now. It will take some time (9-12 months) before his heart will go back down to a normal size, hopefully there is no scarring. They were able to use less pericardium tissue and more of his actual valve tissue to do the repair. 1:30 We see James for the first time in ICU. He looks great...relatively. His scar seems shorter than we imagined. He is on a ventilator (breathing tube), has a central line in his neck, several IV\'s, 2 drainage chest tubes and lots of other things. They will keep him completely sedated through tomorrow morning. I have counted 5-8 doctors and nurses in the room most of the time. His blood pressure is a little high right now, and they had to hook him up to a temporary pacemaker because his heart rate spiked. They said it did that in surgery as well. I\'ll be honest, it\'s pretty nerve racking. I\'m new at this. I know he is in excellent hands, but it\'s still scary. I\'m looking forward to tomorrow when he wakes up and we can talk to him. Thanks for all the encouraging words. I will keep you updated as I can. I\'m feeling the love and the prayers. Keep praying for his complete healing and recovery. I know he is strong.

12 pm Good news! They were able to do a repair. They have not closed him up yet. Waiting to see if the repair is fully functional. They said we might be able to talk with the surgeon in an hour. Great is Thy Faithfulness

One of the last thing James said last night was... HA, wouldn\'t it be funny if we missed the whole surgery because we slept in? NOT! I think both Doug and I woke up numerous times checking the clock even though we had 2 alarm clocks set. Met with the surgeon at 6:30. He will take tissue from his pericardium to build up the faulty leaflet in his aortic valve. He said the valve had 50% leakage. There is a chance he will replace the valve if he can\'t repair it. After discussing pros and cons James decided to opt for a mechanical valve. Hopefully he won\'t have to have that. 7:30 They put in the happy medicine and we said our goodbyes. He was giggling a little. 8:30 They are opening him up 9:40 He is on the heart/lung machine and they are starting the repair. They said surgery should be 4-6 hours. Long wait. We definitely feel the peace of God. \"Thou will keep him in perfect peace whose mind is stayed on Thee\" James\' friend ,Jesse McDonald, came by this morning and sat with us and talked. Just 2 nights ago they were playing frisbee. Thanks for your friendship Jesse. Thanks for all the sweet notes of comfort. They really help!

It\'s the night before surgery, and we have had a long day. A full day of pre-op testing, and then a fun evening watching a Boston Red Sox game, compliments of the Devon-Nicole House we are staying in. Boston has some die-hard fans, and it was fun to sit in the historic Fenway Park, eat hot dogs, and try to fit in to the Boston crowd. It was pretty chilly though. We all feel at peace about this surgery. We know that God is in control and that He is able to protect and keep James in His arms. The doctors, nurses and staff here are amazing. Open heart surgery happens here anywhere from 3-8 times a day. We are walking over to the hospital at 6 am tomorrow, meeting with Dr. Del Nido, and then he will be put to sleep for surgery. The actual surgery will probably start at 8 am and they said it could last anywhere from 4-6 hours. They will give us hourly updates, and I will keep you posted. The verse we are clinging to is the same one they used as their theme verse at the National Day of Prayer in Washington DC that we were honored to be a part of last week. It is Psalm 91:2, \"I will say of the Lord, He is my refuge and my fortress, my God, in whom I trust.\"