The day began with evidence of spring in some bulb shoots pushing through the ground in a little garden on the corner of one of the hospital buildings.
We're looking forward to a new springtime for Ben, but it's coming slowly. They've worked him pretty far down on the breathing tube today, but he is still experiencing these long periods of apnea in which he is so relaxed that he does not breath on his own, so they're forced to breath for him. Part of this may be drug-induced, but when the pain gets to be too much he gets agitated and then doesn't breath right, either. So they're taking it slowly and looking for signs that they might be able to get him off this machine tomorrow.
He has not lost any of his fighting spirit. Today he wanted milk to drink (of course he's not taking any liquids!) and then at one point he swung his feet over the edge of the bed and was ready to climb on out. When his breathing is right, he will be ready to go!
Kim's folks arrived today and that picked up Ben's spirits as well. Lydia and Noah stayed with us overnight on Saturday but have headed back home with gma and gpa for school this week. They are both looking forward to the ISATS this week (Illinois standardized testing). OK, they're not really looking forward to them, but they will be a change of pace for them.
Other than that, things are holding steady. We are hearing beeps in our sleep, and if we never hear another breathing machine alarm in our life it will be too soon.
The USA could have set off a wild celebration with a hockey victory, but at least they were gamers. We're gamers here, too, and hopefully one of these days soon we will have a wild celebration for Ben's restored health.
Sunday, February 28, 2010
Saturday, February 27, 2010
Nighttime day eleven
Today was uneventful. Ben continues to be weaned for extubation, maybe tomorrow, maybe Monday.
His spirits are amazing. He still gives the thumbs up, signals for help with suction when he needs it, and lit up when the phone was put to his ear to hear his aunt's voice this afternoon. He certainly misses the things he likes best: talking and eating! Still trying and asking to do both!
Thanks to neighbors and friends who have helped out with the house and with Noah and Lydia. Jon picked them up this afternoon for an overnight at Ronald's House.
Not a whole lot else to say at the moment. We appreciate your ongoing prayers, cards, calls, and many expressions of support.
His spirits are amazing. He still gives the thumbs up, signals for help with suction when he needs it, and lit up when the phone was put to his ear to hear his aunt's voice this afternoon. He certainly misses the things he likes best: talking and eating! Still trying and asking to do both!
Thanks to neighbors and friends who have helped out with the house and with Noah and Lydia. Jon picked them up this afternoon for an overnight at Ronald's House.
Not a whole lot else to say at the moment. We appreciate your ongoing prayers, cards, calls, and many expressions of support.
Good morning day eleven
Not much to say this morning. We're glad that last night was uneventful. Ben rested reasonably well, and Kim and I did too.
This morning they re-taped his breathing tube where it goes into his mouth. It looks more comfortable now, with comfortable being relative of course. He knows when he needs suction and he summons the nurse with a wave of the hand.
They're also trying to reposition him occasionally to prevent bedsores.
Other than that things are holding steady and moving in the right direction as far as we can tell.
Will post any changes later.
This morning they re-taped his breathing tube where it goes into his mouth. It looks more comfortable now, with comfortable being relative of course. He knows when he needs suction and he summons the nurse with a wave of the hand.
They're also trying to reposition him occasionally to prevent bedsores.
Other than that things are holding steady and moving in the right direction as far as we can tell.
Will post any changes later.
Friday, February 26, 2010
End of day ten
Today was a relatively quiet day. Ben has rested well, and is becoming an old salt with his breathing tube. When he needs suctioned he lets the nurse know.
The biggest things that happened today were the start of weaning him off of the nitric oxide and also the external pacemaker. His blood oxygen levels seem to be holding well and his heart rhythm is good on its own.
Other than that there is not much to say, which feels pretty good. The breathing tube will remain in for a couple days, at least until Sunday but probably will be removed on Monday if all is still going well.
Thanks for the help of many friends, and for mom & dad S who headed back east today and mom & dad L who will leave tomorrow to arrive Sunday here in Chicago. Noah and Lydia are being great "sports," too, during all of this ordeal. It's got to be hard to have older brother in such a scary place and requiring so much of mom and dad's attention.
Kim and I got out at dinner and had a fantastic meal at a little Mediterranean place across the street called Nesh. If you're in the area we'd highly recommend it! Probably the best meal we've had in the last ten days.
Christ's peace be with each of us and all of you throughout this night.
The biggest things that happened today were the start of weaning him off of the nitric oxide and also the external pacemaker. His blood oxygen levels seem to be holding well and his heart rhythm is good on its own.
Other than that there is not much to say, which feels pretty good. The breathing tube will remain in for a couple days, at least until Sunday but probably will be removed on Monday if all is still going well.
Thanks for the help of many friends, and for mom & dad S who headed back east today and mom & dad L who will leave tomorrow to arrive Sunday here in Chicago. Noah and Lydia are being great "sports," too, during all of this ordeal. It's got to be hard to have older brother in such a scary place and requiring so much of mom and dad's attention.
Kim and I got out at dinner and had a fantastic meal at a little Mediterranean place across the street called Nesh. If you're in the area we'd highly recommend it! Probably the best meal we've had in the last ten days.
Christ's peace be with each of us and all of you throughout this night.
New day - Day ten
Ben had a good night on the breathing machine. They took a lot of fluid off his lungs and the pulmonary edema has improved (liquid/blood in lungs). The doctors visited on rounds this morning and seem pleased with Ben's current condition and improvement. Another echo yesterday evening still indicates that the heart is doing well and not likely causing the issues with the oxygen exchange. They think the O2 issue is a result of collapsed portions of the lungs and fluid.
The plan is to keep him quiet on the breathing tube for the next day or two and to slowly wean him from it. Obviously they don't want to rush things and end up needing to put the tube back in a third time, so they will take a very measured approach to the next extubation.
He is resting comfortably, but had enough energy and alertness this morning to give us a thumbs up.
Once again we are so thankful for the medical staff. Our nurse today, Desty, is taking care of Ben for the third day. She is incredibly skilled, knowledgeable and caring, as all the nurses have been. We're learning a lot from her as she explains what's happening, what medications do, and interprets the doctors for us. The doctors, (Backer, Kaushal, Epstein, et al) and nurse practitioners, too, take a great deal of time and intention to help us understand what is happening with Ben and why they are making the decisions they do.
We journey onward.
The plan is to keep him quiet on the breathing tube for the next day or two and to slowly wean him from it. Obviously they don't want to rush things and end up needing to put the tube back in a third time, so they will take a very measured approach to the next extubation.
He is resting comfortably, but had enough energy and alertness this morning to give us a thumbs up.
Once again we are so thankful for the medical staff. Our nurse today, Desty, is taking care of Ben for the third day. She is incredibly skilled, knowledgeable and caring, as all the nurses have been. We're learning a lot from her as she explains what's happening, what medications do, and interprets the doctors for us. The doctors, (Backer, Kaushal, Epstein, et al) and nurse practitioners, too, take a great deal of time and intention to help us understand what is happening with Ben and why they are making the decisions they do.
We journey onward.
Valor, Ben's lion of courage
Sent from my Verizon Wireless BlackBerry
Thursday, February 25, 2010
Nine - end of day
Sitting in Ben's room here at the end of day nine. It is a bit surreal. Today was a rocky day, but right now everything is quiet and the music is playing "Some children see him lily white," that gentle carol. Our nearly naked, light skinned, tube-infested son is lying exposed to the world on his hospital bed, but what we see is our beautiful Benjamin.
In an effort to figure out why his O2 levels won't stay up in his blood, they did an echocardiogram to look for fluid build-up and problems with blood flow. While they were doing the test, Ben started to say it hurt, and then he went into a sort of convulsive episode. It was very scary. The nurse called a "code" and the room was immediately full of doctors and nurses. At this point Ben was on the BiPAP, and his O2 dropped quickly.
I don't think there's anything more frightening to a parent than to be in the room when a code is called on their kid!
So the result of this scary episode was that Ben was immediately had the breathing tube put back in. They rushed him to CT scan because, as they explained later, he was symptomatic of a pulmonary embolism (clot in the lung). Fortunately they did not find one of those. They also did a quick scan of the brain which also was OK.
The doctors are noticeably puzzled about the oxygen saturation. For tonight they are keeping him on the breathing machine and pretty much asleep. We hope that tomorrow he will improved from the rest and/or the doctors will have discovered some other potential causes for the O2 deficiency.
After a very sleepless night for Kim and a short night for Jon, today has been long. One advantage, though, of Ben being on the breather is that we can hopefully get a good night's rest too. Kim had a nap and shower at Ronald McDonald House this afternoon while Jon made a trip back to Elgin to stop by the office, give Noah and Lydia a hug, and repack suitcases. Thank you to mom and dad S for helping keep things running at home, and for being with us right after the code episode.
We pray for God's powerful and miraculous hand of healing to brush over Ben during this night. Thanks for joining us in that prayer.
In an effort to figure out why his O2 levels won't stay up in his blood, they did an echocardiogram to look for fluid build-up and problems with blood flow. While they were doing the test, Ben started to say it hurt, and then he went into a sort of convulsive episode. It was very scary. The nurse called a "code" and the room was immediately full of doctors and nurses. At this point Ben was on the BiPAP, and his O2 dropped quickly.
I don't think there's anything more frightening to a parent than to be in the room when a code is called on their kid!
So the result of this scary episode was that Ben was immediately had the breathing tube put back in. They rushed him to CT scan because, as they explained later, he was symptomatic of a pulmonary embolism (clot in the lung). Fortunately they did not find one of those. They also did a quick scan of the brain which also was OK.
The doctors are noticeably puzzled about the oxygen saturation. For tonight they are keeping him on the breathing machine and pretty much asleep. We hope that tomorrow he will improved from the rest and/or the doctors will have discovered some other potential causes for the O2 deficiency.
After a very sleepless night for Kim and a short night for Jon, today has been long. One advantage, though, of Ben being on the breather is that we can hopefully get a good night's rest too. Kim had a nap and shower at Ronald McDonald House this afternoon while Jon made a trip back to Elgin to stop by the office, give Noah and Lydia a hug, and repack suitcases. Thank you to mom and dad S for helping keep things running at home, and for being with us right after the code episode.
We pray for God's powerful and miraculous hand of healing to brush over Ben during this night. Thanks for joining us in that prayer.
Ups and downs of recovery - Day 9
Wednesday morning started with the joy of having the breathing tube removed. Ben immediately was hungry and wanted to get up. We thought he might at least sit up, but there have been concerns about the oxygen saturation in his blood. He was not able to keep those up on his own, and they progressed through medications and varieties of breathing apparatuses until he has ended up on a BiPAP, which is a pressurized breathing mask that forces extra air into Ben's lungs when he breaths. He doesn't like the face mask at all, and they're still trying to find a combination that is reliable and a little more comfortable.
Overnight his saturation levels fell to a level of concern that caused them to consider putting him back on the breathing tube. Kim was staying overnight in the icu, and called me shortly after 4 a.m., and I headed right over from Ronald MacDonald House. So far that has not been necessary.
The doctors are admittedly perplexed as to why he's having these saturation problems, so it looks like he's in for a sequence of tests this morning. The main things seem OK - his lungs are clear, he's passing fluid with the help of lasix, and so they're not really sure what's going on.
Ben just wants to get the tubes out, have a burger, and get back to business! He is a courageous and determined young man, although he did ask the doctor this morning if he was dying. The doctor of course said "no" and Ben seemed to go with that answer OK. Things don't seem critical, but there are still questions to be answered and of course a whole lot of healing to happen.
By the grace of God and with the support of a great medical team and all of your prayers and encouragement, we journey onward this day.
Overnight his saturation levels fell to a level of concern that caused them to consider putting him back on the breathing tube. Kim was staying overnight in the icu, and called me shortly after 4 a.m., and I headed right over from Ronald MacDonald House. So far that has not been necessary.
The doctors are admittedly perplexed as to why he's having these saturation problems, so it looks like he's in for a sequence of tests this morning. The main things seem OK - his lungs are clear, he's passing fluid with the help of lasix, and so they're not really sure what's going on.
Ben just wants to get the tubes out, have a burger, and get back to business! He is a courageous and determined young man, although he did ask the doctor this morning if he was dying. The doctor of course said "no" and Ben seemed to go with that answer OK. Things don't seem critical, but there are still questions to be answered and of course a whole lot of healing to happen.
By the grace of God and with the support of a great medical team and all of your prayers and encouragement, we journey onward this day.
Wednesday, February 24, 2010
Start of week 2
Kim and I walked (a sort of miracle in itself from Kim's perspective - walking pain free) from the Ronald McDonald House to the hospital this a.m. through a nice, fresh dusting of snow. Many of these old row homes of Chicago are beautiful.
We were greeted by a droopy-eyed, but awake Ben who was anxious to have his breathing tube removed. We waited for the doctors to do rounds. The surgeons and much of the surgical team came by and gave Ben a good report. Like all post op patients, there is constant tinkering with his medications and pain management.
After an echocardiogram to make sure that the blood was flowing well in the newly repaired coronary artery, they were finally able to remove the breathing tube. He whispered "thank you" as soon as it came out. Now he's talking and wanting to know when the rest of these tubes can come out. Not for a few days, of course.
Kim and I got a good lunch at The Spicy Pickle and were greeted by Pastor Joel when we got back to Ben's floor. We appreciate our local faith community and wider church network so much, indispensable parts of our extended family.
Everyone says how well they think he is doing. We think so, too.
We were greeted by a droopy-eyed, but awake Ben who was anxious to have his breathing tube removed. We waited for the doctors to do rounds. The surgeons and much of the surgical team came by and gave Ben a good report. Like all post op patients, there is constant tinkering with his medications and pain management.
After an echocardiogram to make sure that the blood was flowing well in the newly repaired coronary artery, they were finally able to remove the breathing tube. He whispered "thank you" as soon as it came out. Now he's talking and wanting to know when the rest of these tubes can come out. Not for a few days, of course.
Kim and I got a good lunch at The Spicy Pickle and were greeted by Pastor Joel when we got back to Ben's floor. We appreciate our local faith community and wider church network so much, indispensable parts of our extended family.
Everyone says how well they think he is doing. We think so, too.
Tuesday, February 23, 2010
Surgery Day - evening update
Well, still have not seen Ben, but he is now in i.c.u and all reports are that he is doing fine.
The surgical summary is this: they repaired stenosis (narrowing) of the aorta, common in Williams Syndrome, and fixed the left coronary artery as expected.
There were two surprises. One was that they had to utilize a procedure called the brom aoroplasty to repair the aorta. It turns out that our surgeon, Dr. Backer, literally wrote the article on this procedure. For those of you who are interested, you can read the article here.
The second surprise was that, like when he was an infant, rather than a narrowing there was actually a full obstruction of the left coronary artery. Again, it is a miracle that he did not have a major heart attack or other episode. The body apparently adapted by sending collateral arteries over to the left ventricle from the right to keep it pumping.
The heart is functioning with little assistance from medication, which is a good thing, and the increased blood flow to the heart muscle may well actually help a leaky mitral valve perform better. Overall Ben's heart health is excellent.
So we essentially have a double miracle son, especially considering all the physical activity that Ben has enjoyed this summer: shoveling snow, drumming, playing basketball, etc.
He'll remain pretty much asleep until sometime tomorrow morning when they'll begin to wake him up and take the initial steps of recovery.
Noah and Lydia hung in there all day. We've officially passed the 12 hour mark of waiting. We'll all take a peek in on Ben as soon as we're allowed to, and then Gma and Gpa S will take them home so that they can get to school on Wednesday and Thursday. Kim and I will get a night's rest at Ronald McDonald House, and then go back to alternate night stay-overs until Ben's released from the hospital, probably in about a week.
Again, thanks for all your concern, prayers, love and support. We'll continue to post updates as pertinent thresholds are crossed.
The surgical summary is this: they repaired stenosis (narrowing) of the aorta, common in Williams Syndrome, and fixed the left coronary artery as expected.
There were two surprises. One was that they had to utilize a procedure called the brom aoroplasty to repair the aorta. It turns out that our surgeon, Dr. Backer, literally wrote the article on this procedure. For those of you who are interested, you can read the article here.
The second surprise was that, like when he was an infant, rather than a narrowing there was actually a full obstruction of the left coronary artery. Again, it is a miracle that he did not have a major heart attack or other episode. The body apparently adapted by sending collateral arteries over to the left ventricle from the right to keep it pumping.
The heart is functioning with little assistance from medication, which is a good thing, and the increased blood flow to the heart muscle may well actually help a leaky mitral valve perform better. Overall Ben's heart health is excellent.
So we essentially have a double miracle son, especially considering all the physical activity that Ben has enjoyed this summer: shoveling snow, drumming, playing basketball, etc.
He'll remain pretty much asleep until sometime tomorrow morning when they'll begin to wake him up and take the initial steps of recovery.
Noah and Lydia hung in there all day. We've officially passed the 12 hour mark of waiting. We'll all take a peek in on Ben as soon as we're allowed to, and then Gma and Gpa S will take them home so that they can get to school on Wednesday and Thursday. Kim and I will get a night's rest at Ronald McDonald House, and then go back to alternate night stay-overs until Ben's released from the hospital, probably in about a week.
Again, thanks for all your concern, prayers, love and support. We'll continue to post updates as pertinent thresholds are crossed.
Surgery Day - afternoon update
Ben's "chariot" arrived at 6:45 a.m. and took him to surgical prep area. Of course they'd been prepping him all night with sterile washes, dietary restrictions, and blood work.
Once in the surgical area we were greeted by the nurses, the anesthesiologist and the surgeon, all who were extremely kind, gentle, and assuring.
Right on schedule by 7:30 a.m. Ben was wheeled off to surgery. He went to sleep easily and they had no trouble getting the variety of i.v. lines in place once he was "under."
They entered the chest in the same place where he had his surgery as an infant. There was some question as to how long that would take given the scar tissue they expected to find, but apparently it was not too difficult.
Further images of the aorta indicated the need for a somewhat different procedure than they thought. Shortly after 2:00 p.m., we were informed that the repair work was all done on both the aorta and the l.c.a.
Currently we're waiting for the surgeon to visit and give us more details.
We appreciate all of your expressions of support and your prayers, and marvel at the ways technology can help keep us connected to the spiritual and human elements of our life together.
More tonight.
Once in the surgical area we were greeted by the nurses, the anesthesiologist and the surgeon, all who were extremely kind, gentle, and assuring.
Right on schedule by 7:30 a.m. Ben was wheeled off to surgery. He went to sleep easily and they had no trouble getting the variety of i.v. lines in place once he was "under."
They entered the chest in the same place where he had his surgery as an infant. There was some question as to how long that would take given the scar tissue they expected to find, but apparently it was not too difficult.
Further images of the aorta indicated the need for a somewhat different procedure than they thought. Shortly after 2:00 p.m., we were informed that the repair work was all done on both the aorta and the l.c.a.
Currently we're waiting for the surgeon to visit and give us more details.
We appreciate all of your expressions of support and your prayers, and marvel at the ways technology can help keep us connected to the spiritual and human elements of our life together.
More tonight.
Monday, February 22, 2010
Monday Update, Tuesday surgery
Sunday night was pretty restless. Between a roommate who was trying to recover from having his appendix removed to an abnormality in Ben's heart monitor which led to 2 a.m. blood draws and ekg (nothing to worry about) to an early awakening by doctors' rounds, there really wasn't much sleep for either of us.
What everyone wants to know; SURGERY IS SCHEDULED FOR 7:30 A.M. ON TUESDAY. Today has been a parade of doctors prepping us for tomorrow's events. We met the lead surgeon and got the 411 from the surgical nurse practitioner. Had pre-op blood drawn and ex-ray. Visit from the floor cardiologist. Anesthesiologist fellow came by.
Also there have been a bunch of phone calls for Ben, and some time spent in the Family Life Center. See the post on Jack's Mannequin and the picture of Ben taking a call from his classmates.
The family will be together for the surgery Tuesday. Got to love the Ronald McDonald House!
Thank you for the continued outpouring of support through your cards, calls, facebook/twitter notes, visits, varieties of kindnesses, and mostly your prayers. I'll tweet as info is available during surgery. You can follow those tweets directly or on the right side of this blog.
What everyone wants to know; SURGERY IS SCHEDULED FOR 7:30 A.M. ON TUESDAY. Today has been a parade of doctors prepping us for tomorrow's events. We met the lead surgeon and got the 411 from the surgical nurse practitioner. Had pre-op blood drawn and ex-ray. Visit from the floor cardiologist. Anesthesiologist fellow came by.
Also there have been a bunch of phone calls for Ben, and some time spent in the Family Life Center. See the post on Jack's Mannequin and the picture of Ben taking a call from his classmates.
The family will be together for the surgery Tuesday. Got to love the Ronald McDonald House!
Thank you for the continued outpouring of support through your cards, calls, facebook/twitter notes, visits, varieties of kindnesses, and mostly your prayers. I'll tweet as info is available during surgery. You can follow those tweets directly or on the right side of this blog.
Ben's afternoon activity
Ben enjoyed live music by the band Jack's Mannequin and he came away with a new CD, a t-shirt, and a signed poster!
Classmates bring cheer
Sent from my Verizon Wireless BlackBerry
Sunday, February 21, 2010
Sunday, Day 5
Ben started his day by welcoming a new roomate - at 5:00 a.m.! At least this one is more age-appropriate and won't be waking every 3 hours for a feeding, although early signs are that he may be a snorer.
I stayed home last night with Noah and Lydia. Kim and I are taking turns staying in the hospital with Ben. This morning we went to church with our wonderful faith family Highland Avenue Church of the Brethren. It was my turn to play the piano, but Nancy volunteered to cover for me; we ended up sharing the ministry. Amazing how the Word of God speaks in such a timely way. Main text was Psalm 91. "You who dwell in the shelter of the Lord." I sang the solo parts for the hymn And I will raise you up and also Steve Camp's Remember Me for communion,accompanied the kids choir (awesome song btw!) and also got to play one of my favorite hymns, Precious Lord, take my hand. There were a few times when the tears rose.
The expressions of concern, offers of help, and powerful prayers of the church were and are deeply appreciated. It was exhausting but so necessary and important to be there. Noah helped the Jr. High put out a great potato bar for lunch, and then I accompanied Lydia for a song in the talent show. (very proud of her, by the way, for her courage to get up and sing a solo!)
Ben is doing well. He got a new i.v. port put in, and the old one taken out. Left hand; apparently he told the nurse he was right handed; well, it is his mouse hand (computer), but he eats and does other things left handed. Silly boy!
He also got to hear a banjo today; one of the parents was playing in the family center. Ever the charmer, he promoted his drumming video with the nursing staff (here's one). He was very glad to see his grandma and grandpa Shively who arrived late this afternoon. Apparently he was very anxious for them and for dad and siblings to arrive, essentially driving his mom nuts as the day drew on! He enjoyed his hospital dinner, and then some of our family's pizza, too! His appetite is just fine.
The surgeon stopped by and talked with Kim. Still projecting Tuesday for surgery, but not making any promises. We hope to know more about an actual schedule tomorrow. Ben's situation is serious, but not an emergency, so it won't surprise me at all if we go into Wednesday or Thursday before surgery. It's hard to wait, but I think it would be harder to have been sent home and then worry about what might happen until his surgery was scheduled.
Again appreciated a number of calls and contacts from you, our friends. May each of you be held in the comforting palm of God's hand, just like we are being held.
I stayed home last night with Noah and Lydia. Kim and I are taking turns staying in the hospital with Ben. This morning we went to church with our wonderful faith family Highland Avenue Church of the Brethren. It was my turn to play the piano, but Nancy volunteered to cover for me; we ended up sharing the ministry. Amazing how the Word of God speaks in such a timely way. Main text was Psalm 91. "You who dwell in the shelter of the Lord." I sang the solo parts for the hymn And I will raise you up and also Steve Camp's Remember Me for communion,accompanied the kids choir (awesome song btw!) and also got to play one of my favorite hymns, Precious Lord, take my hand. There were a few times when the tears rose.
The expressions of concern, offers of help, and powerful prayers of the church were and are deeply appreciated. It was exhausting but so necessary and important to be there. Noah helped the Jr. High put out a great potato bar for lunch, and then I accompanied Lydia for a song in the talent show. (very proud of her, by the way, for her courage to get up and sing a solo!)
Ben is doing well. He got a new i.v. port put in, and the old one taken out. Left hand; apparently he told the nurse he was right handed; well, it is his mouse hand (computer), but he eats and does other things left handed. Silly boy!
He also got to hear a banjo today; one of the parents was playing in the family center. Ever the charmer, he promoted his drumming video with the nursing staff (here's one). He was very glad to see his grandma and grandpa Shively who arrived late this afternoon. Apparently he was very anxious for them and for dad and siblings to arrive, essentially driving his mom nuts as the day drew on! He enjoyed his hospital dinner, and then some of our family's pizza, too! His appetite is just fine.
The surgeon stopped by and talked with Kim. Still projecting Tuesday for surgery, but not making any promises. We hope to know more about an actual schedule tomorrow. Ben's situation is serious, but not an emergency, so it won't surprise me at all if we go into Wednesday or Thursday before surgery. It's hard to wait, but I think it would be harder to have been sent home and then worry about what might happen until his surgery was scheduled.
Again appreciated a number of calls and contacts from you, our friends. May each of you be held in the comforting palm of God's hand, just like we are being held.
Saturday, February 20, 2010
Two sides of the coin
Up and at 'em early this morning. Night not too bad; slept in about 3-4 hour increments between feedings of the baby in the room and taking vital signs. The ear plugs and eye cover really helped dad!
Ben is doing fine. He seems to be adapting to his surroundings, and with the wireless internet here he is now able to watch his youtube video favorites - firefighters at work, demolition sites, and drummers. A shower and a shave have him feeling (and smelling) "human" again.
So apparently there is a initiative with Navy sailors stationed in the area for them to come to the hospital and play with the kids. "Operation White Hat." Sailor Josh came to the room to ask if Ben wanted to do something, so they're off playing video games. I must confess that it feels pretty awkward given the fact that we firmly believe that the military represents commitments antithetical to the kingdom of God. But then again serving one another and building relationships is right on with the K.o.G. Josh seems like a fine young man, but we really don't support what it is he's chosen to do with his life. For now, Ben appreciates the activity and diversion, and we do, too. Sometimes our gratitude and our protest are two sides of the same coin.
The Janice and Kimberly Brown Family Life Center here is FANTASTIC! Activities, friendly space, books, videos, games, lots of artwork the kids have done, projects they can work on, a wall with posters and signatures of lots of famous people that have visited/volunteered, and a whole team of volunteers to keep things fun. And there's a huge lego project of a hotdog with all the fixin's, although it's not a true Chicago dog with all that ketchup on it!
The waiting continues. Thanks for waiting with us!
Ben is doing fine. He seems to be adapting to his surroundings, and with the wireless internet here he is now able to watch his youtube video favorites - firefighters at work, demolition sites, and drummers. A shower and a shave have him feeling (and smelling) "human" again.
So apparently there is a initiative with Navy sailors stationed in the area for them to come to the hospital and play with the kids. "Operation White Hat." Sailor Josh came to the room to ask if Ben wanted to do something, so they're off playing video games. I must confess that it feels pretty awkward given the fact that we firmly believe that the military represents commitments antithetical to the kingdom of God. But then again serving one another and building relationships is right on with the K.o.G. Josh seems like a fine young man, but we really don't support what it is he's chosen to do with his life. For now, Ben appreciates the activity and diversion, and we do, too. Sometimes our gratitude and our protest are two sides of the same coin.
The Janice and Kimberly Brown Family Life Center here is FANTASTIC! Activities, friendly space, books, videos, games, lots of artwork the kids have done, projects they can work on, a wall with posters and signatures of lots of famous people that have visited/volunteered, and a whole team of volunteers to keep things fun. And there's a huge lego project of a hotdog with all the fixin's, although it's not a true Chicago dog with all that ketchup on it!
The waiting continues. Thanks for waiting with us!
Friday, February 19, 2010
Day three and a tree
Day three is drawing to a close. If only the baby in the other side of the room weren't so agitated, we might be able to get some sleep. Actually, Ben seems to do OK in spite of the noise.
Ben had a busy day, with activities this morning which included potting his own plant/tree for his room and making a cool collage with pictures of firefighters, a steamboat, jazz musicians, and an elk. He had some visitors today, too, so he has some fun new comic books and a book of fire engines.
Overall, he's doing OK. The surgeon visited this morning and explained again what the problem is and what they think they'll need to do to fix it. His explanations shook Ben up a little bit, especially the part of cutting him open and there being blood. It shakes all of us up!
Noah asked the other day if there's a chance Ben won't make it. Yes, there is that chance, I said, but he has great doctors and God is watching out for our special Ben. God will give us the strength to deal with whatever lies ahead. Of course we expect a successful surgery and quick recovery!
Again, it's another day that reminds us of our very dear, and wide, network of friends. Thanks for your calls, cards, emails, facebook and twitter notes, and visits.
We rest another night to meet the challenges and possibilities of a new day.
Ben had a busy day, with activities this morning which included potting his own plant/tree for his room and making a cool collage with pictures of firefighters, a steamboat, jazz musicians, and an elk. He had some visitors today, too, so he has some fun new comic books and a book of fire engines.
Overall, he's doing OK. The surgeon visited this morning and explained again what the problem is and what they think they'll need to do to fix it. His explanations shook Ben up a little bit, especially the part of cutting him open and there being blood. It shakes all of us up!
Noah asked the other day if there's a chance Ben won't make it. Yes, there is that chance, I said, but he has great doctors and God is watching out for our special Ben. God will give us the strength to deal with whatever lies ahead. Of course we expect a successful surgery and quick recovery!
Again, it's another day that reminds us of our very dear, and wide, network of friends. Thanks for your calls, cards, emails, facebook and twitter notes, and visits.
We rest another night to meet the challenges and possibilities of a new day.
How to describe
How do you describe to a 14 year old, let alone one with Williams Syndrome, what he is facing? Here's what open heart surgery means to Ben right now.
Blood. Feeling pain. Not be able to participate in his Special Olympics track & field and bowling activities this Spring. Blood. Are they going to use tools on me? (Ben loves tools, but not too sure about when they're used on him) Missing his friends at school. No gym class, basketball. No shoveling or mowing. I don't think he's realized that he won't be playing his drums for a month or two - that one will be REALLY tough.
So the surgeon visited him this morning and basically repeated what we've already heard. Surgery early next week. Fix that left coronary artery, with a variety of options for doing that which they won't know until they "get in there." This surgery is of the chest-cracking variety, much like he had as an infant.
Ben's a trooper and a real sweetheart. If you never met him, well, I hope you have a chance to one day soon, when he's back to playing those drums, working with his friends at school, and doing those things he loves to do.
Blood. Feeling pain. Not be able to participate in his Special Olympics track & field and bowling activities this Spring. Blood. Are they going to use tools on me? (Ben loves tools, but not too sure about when they're used on him) Missing his friends at school. No gym class, basketball. No shoveling or mowing. I don't think he's realized that he won't be playing his drums for a month or two - that one will be REALLY tough.
So the surgeon visited him this morning and basically repeated what we've already heard. Surgery early next week. Fix that left coronary artery, with a variety of options for doing that which they won't know until they "get in there." This surgery is of the chest-cracking variety, much like he had as an infant.
Ben's a trooper and a real sweetheart. If you never met him, well, I hope you have a chance to one day soon, when he's back to playing those drums, working with his friends at school, and doing those things he loves to do.
Thursday, February 18, 2010
First twenty four
I brought Ben to Children's Memorial Hospital in Chicago on Wednesday the 17th for what we thought was a "baseline" MRI and CT scan of his heart. As a child with Williams Syndrome and having had heart surgery as an infant, we have been constantly monitoring his heart and artery health, so we expected this to be one more insight into their condition.
Insight we got, and it has led to a several day wait in the hospital while surgery is scheduled to open a nearly blocked coronary artery.
This is our second stay in a Children's Hospital, our first being in Los Angeles 14.5 years ago when Ben was first diagnosed with a critical heart condition and then Williams Syndrome. These hospitals are fantastic, from the kid-friendly facility to the highly skilled and caring nurses, doctors and surgeons. Chicago is also a teaching hospital, so there are crowds that regularly form around the beds of patients.
Ben, with his charming personality, makes permanent friends during these stays, and I expect nothing less from our next weeks of time spent in Children's.
These are anxious times because one never knows what surgery like this will entail, nor how it will turn out, but we're confident he's in the best of medical hands.
We're also so deeply grateful for family, friends and Christian sisters and brothers around the country and world who are already joining us in prayer. God will provide the strength, peace, and healing for the days ahead, and we appreciate the intercession and encouragement from each of you.
I will try to add some thoughts to this blog as we move through this process. The blog can be a little more extensive than facebook or twitter, where you'll still get the shorthand version of immediate updates on our journey.
Insight we got, and it has led to a several day wait in the hospital while surgery is scheduled to open a nearly blocked coronary artery.
This is our second stay in a Children's Hospital, our first being in Los Angeles 14.5 years ago when Ben was first diagnosed with a critical heart condition and then Williams Syndrome. These hospitals are fantastic, from the kid-friendly facility to the highly skilled and caring nurses, doctors and surgeons. Chicago is also a teaching hospital, so there are crowds that regularly form around the beds of patients.
Ben, with his charming personality, makes permanent friends during these stays, and I expect nothing less from our next weeks of time spent in Children's.
These are anxious times because one never knows what surgery like this will entail, nor how it will turn out, but we're confident he's in the best of medical hands.
We're also so deeply grateful for family, friends and Christian sisters and brothers around the country and world who are already joining us in prayer. God will provide the strength, peace, and healing for the days ahead, and we appreciate the intercession and encouragement from each of you.
I will try to add some thoughts to this blog as we move through this process. The blog can be a little more extensive than facebook or twitter, where you'll still get the shorthand version of immediate updates on our journey.
Tuesday, February 9, 2010
Biggest question?
I am more and more convinced that the elephant in the room for the church is money. Actually, it's not money per se, but rather the economy of church. We Christians, especially those of us who make up organized churches of North America, are so entrenched by our economics that we don't even see the impact it's having on our discipleship, our witness, our ability to live forward into the kingdom of God.
The issues are so deep that the only recourse is deep change. Robert Quinn describes the realities of deep change in his book of the same title. When deep change is considered or required, it means that people, individuals must change. That means me, so this is going to be hard!
In using the framework of economics, I'm not retreating from the significance of theology. If anything, it is our theology related to money (and its relationship to power) that matters most. This is not a pro- or anti- wealth argument. It's an application argument.
The church as it is today sustains an economy that is both separate from and yet dependent upon the wider economies of the world. It takes its wealth and first distributes it within itself. Secondarily it sends it back into the world.
Theologically speaking, would it not be more faithful to reframe 100% of the financial resources in the context of the kingdom? In such a scenario our churches would not serve as bi-polar conduits, but would rather re-economize everything we identify as resources.
What am I thinking? One example might be that rather than soliciting donations for the ministries of the church and relying on the charitable tendencies of individuals and fund raising expertise, our fiscal responsibility would become a central piece once again of our discipleship. Rather than becoming experts at fundraising (extracting money from our "constituents") or special appeal respondents, we might focus on helping one another express this aspect of discipleship, managing our resources not for ourselves, not for the church, but rather for the greater good of the kingdom of God.
At the least we start by asking the question.
The issues are so deep that the only recourse is deep change. Robert Quinn describes the realities of deep change in his book of the same title. When deep change is considered or required, it means that people, individuals must change. That means me, so this is going to be hard!
In using the framework of economics, I'm not retreating from the significance of theology. If anything, it is our theology related to money (and its relationship to power) that matters most. This is not a pro- or anti- wealth argument. It's an application argument.
The church as it is today sustains an economy that is both separate from and yet dependent upon the wider economies of the world. It takes its wealth and first distributes it within itself. Secondarily it sends it back into the world.
Theologically speaking, would it not be more faithful to reframe 100% of the financial resources in the context of the kingdom? In such a scenario our churches would not serve as bi-polar conduits, but would rather re-economize everything we identify as resources.
What am I thinking? One example might be that rather than soliciting donations for the ministries of the church and relying on the charitable tendencies of individuals and fund raising expertise, our fiscal responsibility would become a central piece once again of our discipleship. Rather than becoming experts at fundraising (extracting money from our "constituents") or special appeal respondents, we might focus on helping one another express this aspect of discipleship, managing our resources not for ourselves, not for the church, but rather for the greater good of the kingdom of God.
At the least we start by asking the question.
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