Feeling frustrated and misled

OK, so when I call someone out, CarMax, it's only fair that I say why. (see Twitter feed)

We purchased a used vehicle over the weekend. In the process of the purchase I questioned the integrity of the front tires, stating "they probably pass minimum standard, but they are nearing the end of their life, and I would like to buy this vehicle if it had better tires on the front." The salesman and a second rep looked at the tires and both agreed that they looked worn, and also probably passed the minimum requirement, but they went ahead and wrote what I thought was an order for new tires, but in fact was only a "consult and advise" for the service dept.

So we bought the vehicle. I took it today for what I thought were two new tires and was told "the tread is still good." I said, "I know, but it really is not good, and I was expecting two new tires." Then followed a sequence of "there's nothing we can do, sir"s. Except "if you're not satisfied with the vehicle you can bring it back and we will take it back."

Well, we love the vehicle and are not taking it back, but are less than pleased with the CarMax service at this point. If they inspected the vehicle, put it on the sale lot, and had already determined that the tires met minimum requirement and that they would not change them, why send me out with additional time and energy invested in going back to the garage for "advisement."? Just tell me that it will be sold as is or not sold at all, and then I make a choice.

I am sure that there were not violations of company "policy" and that they are following the letter of their law the way it is written. But I still feel cheated by being put through motions that obviously had no meaning.

I've spoken with sales managers, service managers and corporate customer service. I expect to be buying two tires before traveling for the holidays, and I expect to never again purchase a CarMax vehicle.

If anything changes, I will more than gladly post the resolution...

Side note: within minutes of tweeting my displeasure, I had a direct message from CarMax corporate asking me to call them ... the "power" of the internet.

Another NPR story on Williams Syndrome

Gotta love NPR these days. They're giving lots of attention to Williams Syndrome. Check out the latest; brief but informative.

NPR story on Williams Syndrome

Check out this spotlight story from morning edition on NPR that talks about the trusting nature of people with Williams Syndrome, kids like our Ben!

Is THIS Normal?

Well, today Ben went back to school and Jon is back to work. There is much to do: projects to complete, contacts to catch up with, staff colleagues to reconnect with, travel to prepare for and so on.

But here we are, back to "normal."

May our awareness of God be as keen in this normal as it has been throughout the exceptional!

Ben and The Ginge

Here are some photos of Ben's birthday celebration at Children's Memorial Hospital, with entertainment by The Ginge!

OK, so it wasn't just for Ben's birthday, but how was he to know?!

easter

Two of our beautiful children celebrating Easter

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Easter

What a beautiful Easter day! Ben is home! Christ is risen! The sun shone brightly, and now comes soaking rain. What more is there to say? He is risen indeed.

Friday & Saturday, waiting

Friday was a waiting day. Kim, Noah and Lydia came to the hospital since it was a school holiday. Jon, Noah and Lydia went for a great walk on a beautiful Spring day. We got over to the shoreline, walked in the sand, dipped our toes in cold Lake Michigan, collected a few small shells and stones, soaked up some sun, and breathed fresh air.

Noah went to the Family Life Center after we got back and was tutored in chess by a visiting volunteer. Lydia and Kim went to check out the thrift shop that's across from the hospital, and whose proceeds benefit the hospital.

Kim then settled in for the night while Jon, Noah and Lydia headed back to Elgin, just in time for some Easter egg decorating at church and then Noah slept over at his friend Jason's house.

Saturday has also come and gone, and we're still waiting on the coumadin levels to get high enough for Ben to come home. Kim's still at the hospital. Jon and Lydia slept in for once and did some chores around the house, and Noah played at Jason's. Lydia and dad had an afternoon out to the movies, where we saw "Last Song" starring Miley Cyrus. I thought we were in for a silly children's flick, but instead I ended up with tears through pretty much the whole thing. I guess it hit a little close to home with all the family dynamics and especially the storyline of father and kids.

So now it's time for rest. Tomorrow we get up early to celebrate Easter. We give thanks to God for life and for victory over death. This year the reality of new life is close to home.

May it be real to you as well.

Busy with not much of anything

Hospital stays really feel like they are amazingly busy, and yet here we are not doing much of anything except for waiting. The anticoagulation levels are improving, but not yet where they need to be to go home.

Ben's day was fairly active. He spent most of the morning in the family life center. Hmm. What did he do there? Watched a little of Stuart Little, watched dad draw a picture, hob-nobbed with the other kids and volunteers, did some drumming during "Jammin' with Jim," and played in the teen center.

After the center is was lunch and shower time, followed by tutoring, listening to music, a visit from Pastor Joel and then dinner. He was exhausted and fell asleep at 6:00 p.m.! Let's hope he stays asleep for the night, although I'm sure there will be interruptions: for blood draws, vitals, and an early morning weigh in. Additionally, the baby sharing the room is scheduled for surgery first thing in the morning, so that means no post-midnight feedings, which likely means a cranky baby!

Weather in Chicago was beautiful although quite windy today (surprise!) so Jon got out for a couple walks and a chance to take in the city from the eighth floor of the parking garage. Tremendous view of the city from that vantage point.

Sorry that I didn't get to lovefeast with our church family at Highland Avenue Church of the Brethren, but Kim had a solo with the choir so she took Noah and Lydia and I stayed in town with Ben.

We are getting pretty close to discharge. The blood thinners are closer and closer to their target rates, but my hunch is we're looking at a few more days. Go ahead; prove me wrong!

Blessings to you our family and friends for the dark journey of Good Friday and the bright dawning of Easter this weekend.

Steady

Steady would be the word for today. Not any notable changes.

Ben spent a lot of the day alone, probably the longest time he's been in that position throughout his hospital stays. Wednesday's a work day for Kim and Jon had the last of three days of meetings with the standing committee vision team. But Ben wasn't really alone, since his favorite 5th floor nurse Jamie was in today, and he had a visit with a volunteer who got him onto the computer, and his mentor Scott from church visited in the afternoon.

He was reluctant to get a shower (we know he's feeling better!), so dad bribed him with pizza.

Beyond that there's not much to report. We're thankful for the meals that the church family has been providing at home, and for Pastor Audrey making some time to hang out with Lydia and Noah today.

Healing continues.

Birthday Boy

Today Ben celebrated his 15 years of life! It was like one day-long party. He woke up to a card from the night nurses, then was serenaded by the day crew and volunteers (see picture and post below), then had a visit that included a BIG balloon and cake with our friend Chris, a shower, and then a concert with the Chicago area band The Ginge (that included photo ops and autographs!). Insert a bunch of phone calls from family and friends, and it was one gloriously full day.

The only down side to Ben's day would have been that dad had to leave a while for a meeting in Elgin, mom had to work and has a cold that kept her away, and Noah and Lydia had school so didn't get to come in either. But we'll all celebrate when Ben finally gets home again.

So, getting home.... On the medical front they are still trying to get his heparin level up to where they want it, and at the same time are starting to switch him over to coumadin. It mostly means a slow, careful process of i.v. fluids, blood checks, and pills. Word on the street (or at least on five west) is that we're here through the weekend.

We'll stay as long as they insist; just don't make us come back again!

As I've said before, we are just really thankful that Ben is even around for his 15th birthday. God's given us a precious gift that takes some tending, but the smiles and joy are worth the effort! We lift a prayer of gratitude in harmony with our continued prayers for healing.

Happy Birthday, Ben!!

Ben's party

Ben was serenaded with Happy Birthday by nurses and volunteers. They also gifted him with a rhythm and jam keyboard, a soulful cd, and an electronic math quiz game. I do believe he is becoming spoiled.

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Happy Birthday Ben!

He woke up to this greeting from the 5 west nurses and staff! Nice!

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Feeling good

Ben wants you to know that he's feeling good. He's talking constantly, ordering his next twelve meals, and plotting his future activities like work camps and drum accessorization.

From the parental perspective things are stable. He's still on his heparin drip, although they had stopped it temporarily last night because they got a low reading on his hemoglobin. Apparently it was a tainted sample because the levels are back up. They're also transitioning him to coumadin, which he'll go home on and remain on for several months.

Visually it looks like the swelling in his calf has gone down a little, although the thigh still seems to be swollen. He says it doesn't hurt any more, which is a good sign.

Kim spent last night and today at the hospital. Noah and Lydia headed back to school after their Spring break. Lydia's still carrying the burden for her brother, most noticeably in her belly. But she had a good day at school, especially in her art class where she got to color a chameleon. Jon spent the day working and in a meeting at the office, and is going to spend the night with Ben.

Tomorrow Ben turns 15. We're just thankful that he's completed the fifteenth year! We look forward to a strong, healing start to the 16th.

Laugh or cry?

Are we players in an absurd drama? Ben's back in the hospital for the third time.

Rewind. Saturday was a good day for Ben. Short walks, an outing in the car with gma & gpa, some good naps, a shower, and eating, eating, eating.

This morning was great, too. Ben went with us to church because we all needed to be there, and he seemed up to it. My cousin Joel's choir from El Monte High School in CA were guests in our worship service. They were great! Ben did what Ben does best, mingled with church-goers and received all their well wishes and delight for his healing.

And indeed Ben has been healing, gaining strength. Except....

Except for some swelling in his left leg and complaints of pain when he walked. For a while we thought that it was simply a product of needing to regain strength and tight tendons and ligaments. But today there was noticeable swelling, still pain, and knowledge that our families have histories of clots. Add to all that the fact that because of his bleeding ulcer he wasn't on any post-op blood thinners, we thought it best to contact the doctors.

Jon took Ben back down to Children's where the short ending is that they discovered a blood clot in the iliac vein in the groin. Likely it was encouraged by an i.v. that was located there during/after the ulcer surgery. He has been re-admitted to the hospital where he will receive treatments of heparin for a few days. There is risk in this treatment due to his recent surgeries, but the surgeons feel like he has healed enough to lower the risk of the heparin, and they also don't see another choice.

Kim's back to the hospital for a Sunday night stay. Jon's home with Noah and Lydia and preparing for meetings early this week. It looks like flexibility and prioritization will continue to be the guiding principles this week.

So at this point it's difficult to know whether to laugh or cry. Your continuing prayers are appreciated.

Semblance of routine

We brought Ben home on Wednesday. He is doing well. Eating, eating, sleeping, eating, eating, walking, talking, eating, playing drums, eating, sleeping. Well, you get the picture. I think he's trying to re-gain his 20 pounds in one week! Today Kim said he wanted to help work in the yard, but grandpa convinced him to take a walk instead, after which he was so tired he slept the rest of the afternoon!

On Wednesday evening Lydia complained of not feeling well. On Thursday morning she still didn't feel well, complaining of pain in her stomach. She was so pathetic, crying and moaning, "Daddy, it hurts" over and over. So, instead of my first day back to the office in quite a while, off to the doctor we went. Our regular doc wasn't in, but Dr. DiMarco was wonderful with Lydia. The short story is that Lydia seems to be carrying the stress of her brother's health crisis around with her in her stomach. Official diagnosis gastritis.

The longer story is that I hope Lydia doesn't need serious medical attention any time soon. First was the trauma of the throat swab to check for strep. Then followed the suggestion of taking blood, which simply provoked a series of shrieks and cries. Since there was some concern about possible appendicitis, a CT scan was in order. Since her belly hurt she wouldn't drink the contrast, so they had to use an i.v. More shrieks and cries, but eventual concession. I know this is scary stuff for a nine-year-old; it's just so different from Ben who would simply hold out his arm.

At the conclusion of the CT I suggested that the i.v. line remain in so that the doc could get her blood from it. They agreed, which then led to a great adventure since none of the medical equipment was compatible. The tech in radiology finally came through with a strategy, and they were able to draw blood without having to stick Lydia again. Again, the good news was that there were no major issues found.

From a dad's standpoint, I must say that it took all I could muster to remain compassionate and patient with the prospect of yet more medical tests and issues with our kids. I think I did OK, but it took a lot of conscious effort, simply because I'm so tired of hospitals, doctors, and my kids hurting.

The other thing that Lydia not feeling well reminds me is that even though Ben's out of the hospital, he still has a long way to go, as do the rest of us. Lydia and Noah have experienced this trauma just like the rest of us, and will continue to recover along with Ben. Thankfully grandparents have been around to help them through it. Same with Kim and me; it'll take some time to recover from all this stress.

"Normal" still feels like it's a long way off. Once again I'm on the road for some work-related meetings, which is a taste of normal, but it's still engulfed by this last month and a half of focus on Ben. We continue to rely on the strength of God through Jesus, and the beautiful family and community of faith that has sustained us thus far.

Home again

Ben was discharged about 4:00 p.m. today and we arrived back home at 5:30! We're all looking forward to a good night's sleep in our own beds. Such hope may be thwarted, however, by a nine year old girl who's not feeling so well tonight.

Anyway, we were all glad to be around the kitchen table for dinner tonight, although exhaustion is setting in.

Ben was cleared to play his drums and to enjoy regular activity, just no lifting, digging, or contact sports. Oh yeah, and he's not allowed to return to school for at least another week or two. He'll have a host of follow-up visits over the next two weeks on his way back to a more normal routine and life. In the meantime, he's eating anything and everything he's allowed to get his hands on in an effort to gain back the nearly twenty pounds he lost.

Thanks for all your support, prayers, and encouragement. I'll reflect more on these past five weeks at a later date, after some more sleep and a deeper healing.

homeward bound

Ben's ready to go. Just waiting for a wheelchair to help us out.

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One day short of five weeks

Today was a good day again! Ben took several good walks around the unit, ate frequently and well, was bathed, listened to some music, watched some T.V. and generally had an enjoyable day.

Blood pressure is still the issue, it's been too high, but they've modified the meds and will determine whether or not he can go home tomorrow after they see how the pressures are tonight. We really hope they've figured it out so that we can go home!

This evening was a lot of fun. A hospital magician came by the room (how many hospitals have their own magicians!) and did some fun tricks with Ben, including cards, multiplying foam balls, and a disappearing/reappearing handkerchief. He even taught Ben a trick, so ask Ben to perform a little magic for you next time you see him.

After the magician left, our neighbors from Elgin came for a visit, with Noah in tow after having spent the day in Chicago, and gma & gpa S made the trip in as well. Ben loves the attention!

So we're hoping for a somewhat restful night, even though nurse Tobin will be in every four hours to do the vitals. With a little luck and an assist from some medicine, this night may be our last in Children's, at least for now.

walking the halls

Ben did the "big lap" and stairs. OT says from her p.o.v. He's good to go!

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I'll take fries with that

Today has been a great day! Measured in terms of appetite, Ben has taken a huge step. Breakfast was pancakes, bacon and hash browns, of which he ate part. Lunch was half a big mac. Afternoon snack was a roast beef sandwich. Dinner was a ceasar salad with chicken and a roll. I'd say his tastes buds and his stomach are getting back in sync!

The last i.v. line came out today, so no more tubes!! He's also walking, getting physical therapy, doing his "flutterbug," and receiving visitors. Today's company included pastor Audrey and the return of gma & gpa S, just in from PA, and sister and brother.

It is hard to put into words how much improvement we see in his eyes, his energy, and his attitude. We're getting our Ben back!

It seems that the remaining hospital hurdle is regulating his blood pressure. It's been higher than they want it, and so they are trying medication combos to get it stabilized. Now they're saying Wednesday or Thursday for possible discharge.

Kim and Jon traded places tonight. Kim gets to head home after a very long weekend, and Jon moves into the "suite." Hopefully Kim has spent her last night here!

Tomorrow no doubt Ben will want another burger, and this time he'll want his fries with it! Thanks be to God!

Weekend overview

This was a busy and positive weekend. Kim has been at the hospital with Ben. Noah had a great time overnight with his friend Jason. Lydia went on an adventure with the Kellermans. Jon went to Middle PA district for an event and then returned to help with worship music Sunday a.m. Kim's folks ended their extended stay by leaving Sunday morning to head home.

On Friday Ben was somewhat unexpectedly moved from his i.c.u. berth to a regular room on the 5th floor. The move was accompanied by a removal of his n.g. tube and permission to drink clear liquids. On Saturday they advanced him to an unrestricted diet. Of course he doesn't have much of an appetite yet, but that will come. Another good sign was that Ben found a t.v. show while Kim was out of the room and was laughing about it when she came back. He doesn't often watch t.v., but it was good to see him engaging something.

Sunday was a good day as well. Lydia, Noah and Jon visited in the afternoon. Ben is smiling, getting up for short walks, had his first shower in quite a while, and continues to take small bites of varieties of foods.

Today the docs said that he might be discharged on Tuesday or Wednesday. We're absolutely excited, and somewhat terrified, about Ben coming back home. Of course this time will be different than the last.

One more end of the day bonus: his last drain tube from the surgery site was removed this evening. All that's left is his pic line.

We are incredibly blessed with the strength of God and overwhelmed by the support of all of you.

Ben March 21

Looking & feeling much better today. May be discharged Tuesday or Wednesday. More updates later this evening.
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Cool change

Today's big step was ice chips for Ben! Also got up and sat in the chair several times, had a bath, and a visit from Steve & Emily.

Maybe tomorrow the ng tube will come out and clear liquids will begin.

Jon left in the afternoon for a little time in the office, dinner at home, and choir practice, and then is off for two day work trip to Middle PA. Kim has taken up residence at the hospital. Noah & Lydia have a busy weekend with friends ahead, and gma & gpa L continue to hold things together in Elgin.

So healing continues while the other pieces of life begin to come back into focus.
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Month to the day - Luck of the Irish?

Here's a mid-afternoon update for the first day of our second month in the hospital. It was on the 17th of February that this whole saga began. The highlights for today so far.

Ben managed to gag hard enough to partially "throw up" his ng tube, and then he completed its extubation himself. Our favorite nurse Desty did her best by at least asking the question, "does he REALLY need this tube?" and then by getting permission to put the lighter weight, more flexible version of it in when they reiterated how important they think it is to continue to drain the stomach. But Ben enjoyed his few moments of freedom from the tube by sitting up in the chair, getting bathed, and talking like himself, and then helped Desty get the new tube in place.

The other issue has been his blood pressure, which has been consistently a bit higher than they would like. There are two ways they were measuring the pressure. One is the traditional cuff around his left arm which takes a reading every hour or so. The other was an arterial (art) line in his right arm. The art line was becoming unpredictable as to its accuracy, one minute incredibly high, the next very low, and so they finally just gave up on that one. No more art line!

Then Ben's luck of the Irish continued with a raffle held in the Brown Family Life Center. Apparently someone donated some Nintendo DS Lites. In order to be entered in the raffle, the patient child had to have parental permission. The nice folks in the center called me and asked for my permission to enter Ben's name, and he was one of the winners! Now, I wonder if he'll like playing with a DS?

Our other activity for the morning was a "cleanout" as Ben had about half a dozen bowel movements which are removing old blood left over from last week's huge bleeding episode. That movement is not pleasant, but it is a necessary and good thing.

Today and yesterday have been gorgeous Springlike days in Chicago. I have enjoyed getting out for a couple rather lengthy walks and deep breathing. Chicago is an absolutely beautiful city, especially on clear, sunny days, and the hospital's location in Lincoln Park is one of the nicer north Chicago neighborhoods. Come visit us. If you come at meal time we can enjoy a great Chicago eatery together, and a brief visit with Ben.

All about time for healing

Today was basically fine. The magic words now are "time to heal." Still has the ng tube. He did pass a stool last night. Basically they don't think his digestive system is ready for anything yet, including liquid. So he waits, with a remarkable degree of patience and grace.

The main challenge today was playing with his blood pressure. They'd like to get him off nicardapine, but every time they try his blood pressures get higher than they'd like for the healing he needs to do. So they keep him on a low dose. We think this will regulate better once he's able to eat.

Really, that's all the news today. It was quiet, and he is ready to sleep tonight.

One minor crisis was averted when Valor, Ben's trusty lion of courage, took an unauthorized side trip to the soiled linen basket. Fortunately we realized it and sent out a search party before the laundry worker came and swept him away! Valor is restored to his rightful place at Ben's shoulder.

Now we can rest easy tonight.

Steady as he goes

Today is good news from a parent's standpoint, and tolerable news from a patient's viewpoint. A few small changes, but nothing too dramatic. The good news is that his blood levels are healthy again on their own. Apparently they've had enough time to get themselves back in order. Also, at least two i.v. lines came out today, including one in his groin. We had a few anxious moments this afternoon when his swollen leg was looked at to rule out a clot, but in the end the swelling is a bi-product of having that line in the groin, not a clot. We thank God for the little bits of good news!

The place where Ben's tolerance is being tested is with the ng tube in the nose. It is a very heavy tube, pulling heavy bile, and is terribly uncomfortable and makes him gag since it runs down the back of his throat. But he is being as good a sport as anyone could expect. Maybe tomorrow or the next day for that one. I think they will try to get him on some clear liquids before they remove that tube.

Ben also had a sponge bath, got his hair washed, sat up in the chair for a short time, and did his acapella breathing exercises. One respiratory therapist calls it the "flutterbug" because it's designed to blow into instead of suck in like most breathing exercisers. When he blows out it, well, flutters!

The surgical team and G.I. folks have been coming around a good bit. A couple of the doctors from last week were out of town over the weekend and were concerned when they heard that Ben had ended up requiring surgery. We really appreciate the genuine concern, excellent care, and personal investment of nearly everybody here at Children's!!

While of course no one can say for sure how much longer we'll be here, it looks like at least another week. I'm sure they won't release him until they're sure that he is as good as he can be short of regaining strength and energy.

Kim and Jon both spent lots of the weekend at the hospital, with Kim taking Saturday and Sunday nights. Now it's Jon's turn again, probably until Thursday night. Gma & gpa L are sticking around a few more days - we really appreciate them being here! - and then the gparents S are coming back for next week. Grandparents are GREAT!

Ben and I are hopeful that we can get a little sleep this evening.

Thanks for all your encouragement, expressions of support, and prayers.

skyline

The view from the top of Children's Hospital parking garage on a lovely, clear Chicago evening. Not the best quality, but trust me, it is beautiful!

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ben & valor

Ben was trying to smile, but it came out a little squinty.

Still has the ng tube from stomach, and a few I.v.s. He's had a pretty good day, a few visitors, a bath, and a bunch of breathing treatments.

Yeah Ben! Small steps for big gains. Thank God!
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Have we been here before?

Well, talk about ups and downs, and another stressful day. After a fantastic day yesterday, everything started "down the skids" overnight. They had to give Ben blood and determined that he was losing enough that they needed to check the ulcer again.

At 1:00 p.m. they took him in for a scope. They were able to do the scope without intubating, for which we were glad. The ulcer was still bleeding and a few of the clips that they had placed on Monday had come off. They re-clipped, did a bit of cauterizing, and injected some medicine. They thought they had "fixed" the problem. The procedure was long, taking almost three hours.

Unfortunately about an hour and a half after he returned to his room he stooled blood. They turned him to the side to clean him up, and he vomited blood. The good news suddenly turned bad. The doctors made a very quick decision that he need emergency surgery to stop the bleeding.

At 6:00 p.m. he was in the O.R. By 7:30 the surgeon reported to us that they indeed found a major bleed of one of the arteries in the intestinal wall at the point of the ulcer. The hard truth is that Ben was in very serious, life-threatening condition, and it was the aggressive and decisive actions of the nurses, doctors and surgeons which once again saved Ben's life. They were able to keep replacing his blood between his vomiting and getting to the O.R., and so they feel that they averted any permanent damage.

Kim and I returned to his room about 9:00 p.m. He is intubated and will be kept very quiet for the night and into tomorrow. The main things they will be watching for are signs of additional bleeding which could be caused by failure of the stitches; infection which is a heightened risk because the repair involved the "messy" GI system; liver and pancreas blockages because the surgery was near the point where these two organs deposit their waste into the intestinal track; (one other risk, as if those aren't enough, that we can't remember).

The heart surgeon has reported that his heart is doing well. They are of course having to balance which medications they need to give for the GI issues with what needs to be done to keep the heart healthy. I'm sure it will be a dance which will continue for many days.

Kim was at the hospital today, and lived through the trauma of the downturns in Ben's condition. Jon was at the office for meetings and headed to the hospital as soon as they learned of the emergency surgery. Noah and Lydia are with grandpa L at the house. Grandma L is receiving her own treatment overnight at St. Joe's for rehydration, a regular necessity for her health.

We are exhausted and tired of seeing our dear Ben go through such trauma. He has been remarkably strong, cooperative, and loving through this whole ordeal. You, our friends and faith community, are our strength and such significant vessels of God's love. While feeling pretty much beat up at the moment, we are blessed in many ways, and we know it and celebrate it.

Good day

Overall a good day for Ben. Hemoglobin has improved. I.V.s have been stopped. Clear liquids are back on the menu. Sponge-bathed. Up in the chair. Even a walk.

And LOTS of big smiles:-)

Kim's taken over the hospital shifts while Jon checks back in at home and this weekend's board meetings.

We thank God for healing, and for all those who participate in and contribute to the process.
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End of day # whatever

The conclusion of today is pretty simple. Ben is stable, seems to be maintaining his blood levels and is totally free of oxygen assists. They have scheduled an endoscopy for tomorrow at 1:00 p.m., but they will reassess the need in the morning. The GI docs think its necessary, the heart surgeon would like them to wait a few days.

Ben's spirits have been good today. He smiled a lot, cracked a few jokes, made some new friends with the staff, had a sponge bath and generally a fine day. He is a great patient, polite and cooperative.

That's about it for tonight. Kim came in to see Ben this evening and I'll stay one more night before we change shifts. Good night.

life beyond

There is life outside the Children's Hospital tower. Lake front is only a dozen blocks away!
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Playing out

Today we are waiting to see how the blood levels play out. His hemoglobin has remained pretty stable overnight. They watch this as an indication of internal bleeding. If it goes down it means he's losing blood somewhere. This morning he has had a couple of bowel movements which are bloody. They think it's probably old, dry blood from before the repair of the ulcer, but they are not sure.

The current plan is to monitor, give blood if necessary, keep his system empty so it can heal, and then repeat an endoscopy tomorrow (Thursday) at 1:00 p.m. I was hoping they would not feel the need to do another scope because it will most likely mean one more occasion of sedation and intubation. The GI docs and the cardiologists will have to talk that one through.

Ben slept pretty well last night, but is tired again this morning. Dad didn't sleep so well through the activity in the room next door where the young girl died after having been on hospice care.

They had Ben up in the chair this morning and will get him up again a few times today. His lungs seem to be better and he's off the BiPAP now. He looks like he's reclining on the beach when he crosses his legs and relaxes in his bed!

More posts later as more info is known.

Steady

Today has mostly been steady. His hemoglobin, which indicates whether or not he might be losing blood somewhere has been pretty steady, although it was just a little lower this evening. So they'll keep watching that.

He's been on the BiPAP, and continues on it tonight, although he had several periods off it to do breathing treatments and to get small drinks of water.

He sat up in the chair for an hour or so twice today, and has looked pretty good for most of the day. He was tired tonight, but that was expected since he really didn't rest during the day.

Our two room "suite" is sad because the little girl next door didn't make it. Her family has been with her since we've been here.

At this point I think I'm just functioning by numb exhaustion. I know we still have several more days in here, assuming there are no additional setbacks with Ben's health and that he continues to improve slowly but steadily. Given his earlier challenges, I'm pretty sure they'll be extra cautious in releasing him this time.

We continue to be encouraged by your notes, expressions of support and faith-filled prayers.

Second twenty four, day 18

Well, this is the second day of our current stay, and day 18 in the hospital since February 17. Ben passed his previous record of 17 days set when he was an infant. We were there for all of those, too, as were many of you.

Today is a positive day. They put Ben back on the BiPAP last night at about 11:00 p.m. because his oxygen saturation was low again. The BiPAP is much better than the breathing tube! His numbers are good and he will take turns being on and off the BiPAP throughout the day. There is some fluid in his lungs which they are trying hard to keep on top of.

The bleeding from the ulcer appears to have stopped. After lots of donor blood yesterday (7 units plus other additives), he has not required any overnight. He's been cleared to gradually take clear liquids. He's happy about the "cleared" part; not so happy about the "gradually" part. I think he's feeling better because he's whining (through the mask, not so effective) about being thirsty. I'm sure he is. Now he says he's hungry, too.

So today is lung rehab, continue healing from the ulcer, take in small amounts of liquid, and rest. Tomorrow he will likely have a follow-up scope to double check the ulcer repair. Hopefully they can do that without intubating him again!

When the breathing mask is off, his color is good and his eyes are beginning to recover their sparkle and life.

He's making more friends with a whole different group of nurses and doctors. We kid him and say that he just wanted to come back because he hadn't met EVERYBODY yet. They like Ben as a patient and love Ben as a young man.

Again we are blessed with God's love and comfort expressed through you who take the time to read this blog and continue to lift Ben and our family up through your prayers and expressions of support.

36 hours up and down

Sunday morning Ben had a positive breakthrough. While Kim, Jon, Lydia and Noah were at church, Ben was home with gma & gpa L. At @ 10:00, about the time the Highland Avenue CoB congregation was praying for Ben, apparently he got hungry and ate a nice, early lunch.

We returned home to a brighter-eyed, more bubbly Ben.

Ben entertained a couple brief visits on Sunday afternoon, and then was very tired in the evening, something that seemed quite natural since he had been up virtually all day.

At about 7:15 Ben was in bed in his room when we heard vomiting. The short story is that it was blood and a clot, and it was coming out both ends. We immediately called the doctors at Children's who told us to take him immediately to our local emergency room. As we prepared to put Ben in the van, he got faint and had a very strange look on his face. We called the ambulance.

After initial treatment at Sherman Hospital in Elgin, Ben was transported by ambulance back to Children's, arriving at about 11:30 p.m., and taken right to the picu, which we have become quite familiar with.

Overnight he continued to pass blood and had a good amount of blood given to him, along with other medical tests and interventions. Around noon today they performed an endoscopy which resulted in the discovery of a very sizable ulcer in the duodenum. Clamps were applied to lessen its size, control the bleeding, and a regiment of medications has begun.

Tonight Ben is resting at the hospital. Kim and Jon returned home for a few hours to rest and gather items for what will likely be another multiple-day stay at the hospital.

We are grateful that this episode was not related to his heart. In fact the staples were removed from his incision while he was sedated for the endoscopy. We are concerned, however, for the toll such a loss of blood will have on Ben, and for the healing that needs to take place now in his lower belly. He also was under anesthesia and intubated again, and so until a day or two has passed we are concerned that his lungs and oxygen levels are sustained and do not regress like the first time he was intubated for heart surgery.

I will continue to give updates tomorrow. Thank you for surrounding us with your prayers and support.

Ben says "Thank You!"

Slow steps

In spite of being home, it was not a very restful night! Ben was on hospital schedule, up every 60 or 90 minutes from about 12:30 a.m. until 5:00 a.m. That meant that mom and dad were up quite a bit, too.

Today has been good. We're trying to balance Ben's need and desire for rest and his body's need for the same plus food and activity. He's had a few bites of this and that and is drinking a lot of water and Gatorade. He went downstairs and we had him sit in the family room la-z-boy for a couple hours, then took a little walk outside on this sunny, clear day. The rest of the time's been spent relaxing in his bed.

Kim and I are trying to get caught up on bills and household errands, she spent a couple hours doing childcare for the family she works for, and I've been multitasking with some work responsibilities as well. It's nice having gma & gpa L here to help with some of the stuff around the house. It's hard to keep gma sitting still!

So here's hoping that a balanced day for Ben and a busy day for the rest of us will translate into a better night's sleep tonight.

I'm sure Ben's slow steps will turn into passionate dashes and joyful drumming before we know it.

Home

Home.

There's not much more to say. We're glad to be home.

The day started with the wait for the doctors to do rounds. As expected, Ben got the go-ahead for discharge. Then the discharge process began, which lasted several hours. Our nurse Christina and the CVN Emily were great with trying to keep things moving.

The big thing was getting the two monitors that Ben wore home. One is a 24 hour monitor to give the doctors a report of the first day out of the hospital. The other is one that he will wear for a month to monitor him for any incidents of heart block. Both are considered precautions.

We were all packed and ready to go. I had cleaned out my room at Ronald McDonald house and we were waiting. At about 1:30 p.m. we were literally heading out the door, and I was helping Ben tie his shoes when he had a gagging spell and vomited. Well, that immediately suspended the discharge while they had Ben eat something and show that he could keep it down for an hour. We got him to eat part of a pbj and drink some Gatorade and he met the criteria. We finally left just before 3:00 p.m.

Ben was very enthusiastic about heading home. He was commenting on all of the sights and sounds of the city on our way out the Kennedy. Fortunately traffic was not too bad. We arrived home in about an hour.

He was so excited to get home that as soon as we pulled in the driveway, he threw the door open and started climbing out. I had to slow him down so that I could pull up to the sidewalk. Once we did get out he wanted to run up the sidewalk. Whoa there young man!! He was so eager to get to his own bed, and so tired at that point, that he even tried taking the stairs two at a time!

Clearly we are all happy to be home. Obviously it will take some time for him to get his appetite back, but we'll encourage him with small steps. Now the work of finding a good pace of life at home for healing begins.

It's my turn to fill in as choir director at Highland Avenue Church of the Brethren for a few weeks, so I was able to go to rehearsal tonight. Singing the music of faith is tremendously healing. While my body is pretty much exhausted, my spirit was once again lifted up by the reminders of God's love and care, and by being in the presence of part of our church family.

Now, for sleep - in my own bed!

Last night, we hope

Everything is lined up to go home tomorrow. He has met their medical criteria for discharge. He's pooping and peeing, albeit somewhat irregularly. He's eaten a little bit, graduating to a few bites of toasted cheese and apple this evening.

More importantly, his chest xrays, ekg and echocardiogram all looked good.

Ben's getting in and out of bed fairly regularly and with decreasing effort, and he met mom at the entrance to icu this evening when she arrived. He spent significant time sitting up in the chair, too. He took a couple good naps along the way today. I think he'll miss that adjustable hospital bed.

There will be a good deal of strength to rebuild and stamina to recapture, but he is on his way.

They'll be sending him home with a portable heart monitor which I'll learn more about in the morning prior to his discharge.

I'm sure that in a short amount of time Ben will be ready for some visitors at home, enjoying his favorite foods again, and playing those drums. It feels like we've ascended from the valley and are climbing toward those peaks of health and wholeness again.

Third week begins

Day fifteen marks the beginning of week three. Impressive math, don't you think?! Actually, it's amazing how quickly one loses track of time in a place like this. I need this blog simply to remember when things happened; time has become a blur.

Last night was the first night that Ben has really slept since he arrived in the hospital. They put him to bed at around 7:00 p.m. and he slept until 1:00 a.m., he spent a few hours awake, and then around 4:00 a.m. went back to sleep, which is how I found him when I arrived at his room at 7:00 a.m. He stayed asleep until 9:00 a.m.

Once he woke up there was a flurry of activity ranging from attempts to eat to sitting on the potty to a field trip to x-ray for a few chest views to a very long echodardiogram in his room to a sponge bath to a visit from Grandma & Grandpa L to a new dressing on his pic line.

Hopefully he's sleeping now while I have slipped out of the room for some lunch, to post this blog, and to assess how far behind I really am at work.

We expect that if the eating comes around even a little bit that they will release him tomorrow. He'll be on a portable heart monitor at least for a few days just to keep track of things, but other than that we think he'll be "tube free" and with a limited amount of medication.

That's good news for all of you. Only a couple more blogs from the hospital and then hopefully less frequent updates of Ben's continued progress. Plus, if he gets out tomorrow, it will be day 16, one day shy of his 17 day stay as an infant.

We receive the blessing of God as offered through you, our friends and family, with deep gratitude.

First meal attempt

Hungry for pancakes, until they were in front of him. Still lots and lots of air in his system which is hurting him and delaying his appetite. Lunch was a tiny bit better: few bites of applesauce, chocolate pudding, and roll.

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Topping off two weeks

Ben topped off his second week at Children's Memorial with a stroll along the "long" route through I.C.U. This monumental walk was the capstone to a day that included: no more BiPAP; pacemaker wires removed; last chest tube drain removed; no more oxygen supplements; drinking water and juice; two walks; a sponge bath; and one exhausted boy.

There was an incredible amount of progress made today, so much so that they're thinking he might well be home before the weekend. The only thing standing in his way is the fact that he had a lot of stomach pain today and wasn't able to eat anything yet, but I have a hunch that if he rests well tonight, his appetite will begin to come back soon.

He changed rooms to make room for a more critical patient, but remains in the I.C.U.

It's good to see the sparkle in Ben's eye again and to get a gentle but full hug.

We continue to give thanks to God for this miracle of healing.

Morning, end of week two

The bottom line is that things are going well.

Ben had a somewhat restless night, but it was fairly busy. Got cleaned up and hair washed. Took another walk. Started drinking apple juice. And then when they wanted him to sleep put that clunky BiPAP mask on him. His nurse was of the "busy" variety, so I'm sure she kept moving around him.

The other factor coming into play is that he's starting to feel the pain and discomfort that is normal after heart surgery. It's hard to tell exactly what's hurting him. He understandably has a hard time differentiating his pains, and then when he tries to describe where they are it adds another layer of confusion. Best we can tell is that it's a combination of some gas and stomach pain, and the sensitivity from the surgery. He still has a few wires and tubes that are uncomfortable.

So the good news for the day is that many of those tubes and wires are on their way out. They took his arterial line out of his left arm which is a great relief, especially for a lefty! They have taken a large number of his I.V.s off line. The pacemaker wires will come out if they feel like his heart is back to beating regularly on its own (he hasn't needed it now for two days or more) and finally the last chest tube can come out later today.

His tasks for the day are to continue his breathing therapy, to get up and walk a few times, to pee and poop, to begin eating in small doses. He wants to eat and then when we give him something he doesn't really want it. I think he's holding out for that Whopper.

Kim's back at work today, so Jon is parenting at the hospital. Ben's probably up for short visits now, and that should improve as the week progresses. It's good to call Jonathan before you would stop by, just to be sure.

We continue to celebrate the skill of surgery and the miracle of healing.

Non-essential, random thoughts

A few things running through my mind, not essential to Ben's health, or mine for that matter....

I finally spelled "McDonald" right in my last post, and then corrected my sequence of misspellings in previous ones. My apologies to Ronald. You'd think I would know better as many cups of coffee as I've purchased from him this week.

When Ben was feeling bad and we weren't quite so sure how things would progress, there was a lot of unspoken solidarity with other parents in the icu. Somehow, though, when Ben rose from the bed and took his walk, the solidarity for me turned to a more acute sense of sadness for those parents whose journey will be so much longer than ours, and for those who will never take their child home alive from icu. We know it happens, and almost know how much it hurts.

I think I could live in the city. Walking to and from the hospital each day has its own sense of freedom and a healing rhythm to it. The access to all the essentials for daily life within walking distance is nice. And we love some of these old row homes. Of course Lincoln Park is pretty nice of its own merit.

When people are in the hospital for a long time, it is expensive. I don't just mean the hospital bill. Not sure I want to see that, but do thank my fellow employees at the CoB for helping our family get healthy again. But it's expensive just to be here: parking, traveling back and forth, eating even when trying not to spend too much on restaurants, and just managing the day by day needs of life. Again, it stretches us and so it's not hard at all to see how families go "belly up" after any kind of extended medical care.

Exhaustion will set in. When? It's hard to say, but I know it's coming.

Finally for tonight, I just don't know how people do this without the love and support of family and faith family. The love and strength of God is available to all who ask/seek/wait, true, but it surely is felt most tangibly through the care and generosity of other human beings. Thanks to all of you who have been human expressions of Christ to us during this time.

Lucky - and blessed - thirteen

What a day.

Ben started the day on the ventilator and ended the day with a walk out into the hallway and back. In between a great number of, and number of great, things took place.

Tubes removed: breathing tube; two of three chest tubes; ng tube; catheter

Medications stopped: well, quite a few, I've lost track, but he gave up some of the heavy-duty ones that were keeping him so sleepy.

Path toward food: he has been able to take clear liquids. He wants a Whopper with cheese and french fries.

Movement: He has gotten up twice, the first time to sit in the chair, the second time to take his walk. Other than that he is moving himself around in bed and returning to his feisty, insistent self.

Sleep: He was exhausted at evening's end. They are having him sleep with the BiPAP machine tonight, mostly as a continued support for his healing lungs/breathing. He's not fighting it as much this time around.

Gma & gpa L visited today, and so did Pastor Audrey bringing a lovely card signed by much of the Highland Avenue congregation. Kim returned home tonight and will get back to work tomorrow. I will continue to stay at the hospital and Ronald McDonald House for the rest of this week. (Did I mention that the boiler went out at RMH, and that we only had frigid water this morning? Note says it will be fixed - tomorrow!)

No word yet on going home (everybody's just so thrilled about his progress!), but it would seem like maybe at or around the weekend might be possible if he continues his "meteoric rise" from today.

Thanks for the prayers that gave Ben new breath and rejuvenated life today and have sustained us with the Holy Spirit through these trying two weeks.

ben walks

Ben's first trip out the door and back! I think he grew two inches.

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ben is up!!

Here is one happy guy, finally up in a chair, doing well!!!

Praise God!

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Morning day thirteen

We're hoping this is our lucky 13 today. The doctors came on rounds and have determined that they can try to take the breathing tube out a little later this morning. They did an echo of the diaphram just to make sure it was not damaged, and it looked OK, so they think they can go ahead.

Before they extubate they are also going to try to take a couple of his chest tubes out. His post-op drainage seems to be fine. They can do this before his pain medications are lowered a little post extubation.

After they extubate I think they will work him pretty hard with his breathing therapy, and they will put him back on the BiPAP for a while which will support his own breathing. It's a big, clunky mask, so we'll hope that he'll tolerate it this time around.

I believe the next 24 hours will be fairly nerve-racking as we watch for signs that he's on the road to a more permanent recovery. Thanks for including us in your morning and daylong prayers.

Evening, day twelve

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.

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.

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.

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.

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.