Tuesday, June 29, 2010

Numbers Don't Lie

Last evening, I came home from a book study and decided that the wood of my desk really did exist and it was high time I found it. It isn't that I had nothing better to do with my time like sleep, but I just can't think clearly when clutter surrounds me. And when my keyboard once again can't be found (and since it's wireless, you can't just trace the cord back to it and pull it out from under the mire!), it is time to just buckle down and deal with the desk disaster. And since I had drunk a glass of green tea at 7:00, sleep was going to be elusive anyway. (We really don't have to address the wisdom of the decision...)

It is interesting what you find buried in your desk. Besides the growing stack of medical bills, the missing container of cocoa roasted almonds, and the library book I couldn't find, there is the calendar I keep so we can track the miles I drive related to medical appointments. Last year, that magic number was in the 12,000 mile range. So far, year to date, we are already at 7,459 miles. In the first three months of the year, I "only" drove 1,600 miles. In the last three months, that number jumped to over 5,600 miles.

So as a matter of perspective...in the last 6 months, there were 67 days that Will and I were either out of state or simply gone to a doctor appointment. We spent about $850 in gas related to those medical miles. There were 3 sleep studies, 15 nights in hotels, 3 nights spent with very gracious friends in Cincinnati, 4 angel flights, and I have no idea how many meals eaten in restaurants or hospital cafeterias. That is a number that I don't know that I want to know. We aren't going to discuss the $10,000 deductible that was met months ago.

So what exactly is the point in evaluating the numbers other than to simply impress you with my statistical abilities? Well...I am currently reading a book called The Healing Path that discusses how "to not waste your pain." He talks about how "suffering changes the human heart - sometimes for good and often for ill...we must consider what it means to live well in a fallen world rather than scramble to escape the veil of sorrow." Despite the temptation to avoid the coming crucifixion, Jesus accepted his suffering in order to ultimately eliminate the separation we have from God. He accepted suffering without cynicism, anger, and hopelessness and did so without being blase'. As believers, we follow his path into suffering but also have the hope he provided us so that we too can suffer with hope, faith, and love.

We aren't called to hide our suffering. That isn't the point. The point is what do we do with our suffering? Here is where I think the visible church gets it wrong so often. They say we live in a fallen world then live as though they are shocked that suffering is occurring and have no idea how to manage it. THAT is why this blog was started. I could no longer hide behind the "Sunday smile" and pretend that we were fine but neither could I constantly say, "No, we aren't okay. We are indeed broken." because no one knew how to handle that answer. But the hope is that even though we are suffering, and people can visibly see it, we also look to Christ and see that He is walking this path with us. The blog is here so that people can see suffering and Christ's hope. Because ultimately, isn't the point of suffering to draw us into closer relationship with Him who gives us hope?

Thursday, June 24, 2010

Absence Makes the Heart Grow Fonder...

I really shouldn't send these updates when it's way too late, but if I don't it will never get done. And seeing as how I'm getting these emails asking how things are going, I should have already sent this out. So, bear with me if I start to meander through this...and hopefully, absence does indeed make the heart grow fonder and you will love me anyway.

Yes, we made it home from Pittsburgh in one drive that involved no additional hospitals. Yes, we were very happy to be home. No, we have not seen any more hospitals since our epic adventure. No, that doesn't mean that everything is just fine.

Basically, the short version (do I ever give you the short version?) is that Will is now battling hypoglycemia as well as all of the other stuff. We do have the ability to give him an IV with dextrose at home, which is good, but it does mean that on weeks like last week, he has more days that he's pushing an IV pole around than days he isn't. That doesn't make for a happy Will and it doesn't make for an easier life for everyone else. We did attempt the Marine Corps Museum in Quantico, but we were assisted down the back stairs by a security guard so Will wouldn't have to traipse around the museum to the elevator and then back to the door. Calling 911 to help us escape the museum just wasn't high on Will's list that day, so we gratefully accepted the guard's assistance.

So basically, Will has been home for the last week due to the extreme heat and, I think, he's uncertain about how to manage the hypoglycemia. I have to be more aware that he needs food every 3 hours or he's not going to do well. He is learning to take responsibility for some of that. Given his food allergies, eating every 3 hours can become very boring. So I am on a quest for a granola bar recipe with no milk, corn, soy, almonds, peanuts, or hazelnuts. It can't have yellow squash either, but since that is so high on the ingredient list for granola bars, I just didn't think it worth mentioning...

Will and I return to Cincinnati July 15. Yes, there is a bit of trepidation there. It's cheaper for me to drive but the drive is harder on William. We could fly, but then there's that expense thing with the rental car. It gets a little pricey when you need a car for five days...especially when you also have to have a hotel and food for those five days. So, we are still in the throws of making that decision. The mortgage kinda likes to be paid every month, so we're having to figure out how to survive the monthly travel to Cincinnati...and keep Will from touring all of the hospitals between home and Cincinnati.

The older kids are still working on a few things, but the younger kids and I are taking a break from school. When we returned from our epic adventure, I headed out the following afternoon for the home school convention. If we are to continue to home educate the kids, we have to figure out how to do it more effectively. For the littles, that means that language and math really do have to be taught by video...which is expensive...which takes us back to that mortgage thing. Even though I was exhausted in every sense of the word, Will was finally stable, so I went ahead as planned to convention. And I spent the next three days crying and emotionally processing all that happened. Billy said, "Come back with a plan and we'll see what we can do." Talk about the impossible dream.

Suffice it to say that I have come home with an idea of what will work. Financing that plan is a massive challenge, especially since we still may end up paying income tax in Ohio if we continue to live there so extensively. But I also came home with the sure knowledge that our God is bigger than the finances of school and the illness of Will's. If He knows even the sparrows, then He knows the educational, medical, and daily life issues that we are facing...

So while I am reacquainting myself with my children, I am trusting that the Lord is at work.

Tuesday, June 8, 2010

Just One More Night...

Well, the lifeline was removed from Will and he seemed fairly stable. We packed all of our stuff in preparation of continuing the epic journey to Virginia. Glucose was fine. Bp was lower but still ok. The nurse was leaving the room to obtain the discharge papers when Will stood up and said, "Um, I don't think we are going anywhere." OOOokay.

The nurse called the doctor who arrived momentarily. Labs are fine. Vitals are fine. But Will states he is exhausted and feels weird, like how he felt when all of this started. The resident leaves, calls the attending pediatrician who talks to Dr. Teasley, and we hang out in the room kinda not sure of what to expect.

The end result is that Dr. Teasley wants us to remain here for one more night. No fluids, just regular checks of vitals and monitoring of Will's condition.

So while we enjoy the hospitality of Pittsburgh Children's Hospital, a friend back home was finding an amazing Italian restaurant to bring us dinner...actually it was an amazing dinner that could easily have fed an army. It was so lovely to not be eating hospital cafeteria food. What a huge blessing!

So, maybe tomorrow we will head toward Virginia on our epic quest to get home. Will is vastly improved tonight, so as long as his vitals remain steady we should be golden...

Thank you for all of the prayers and concern that so many of you have shown. While Erlene continues to hold down Fort Coleman and the Huttons host Caroline who will never want to come home (oh, so many girls and so little time!), we are humbled by the love and affection and concern expressed.

If You Have to Be In a Hospital

If you have to be in a hospital in a city, this is definitely the place to be. This picture is actually the view from our very large window.

Apparently Pittsburgh Children's Hospital purchased this building, totally renovated it, and moved in a year ago. The patient rooms are actually designed to make it feel like home. There are drawers for clothes storage, places for both parents to sleep, and enough space to have three extra children visit and all be able to play a game around a table.

Having had the rare opportunity to experience extended visits at various hospitals across the east, we truly have been blessed to have this hospital be on our unexpected tour.

Will's IV has been disconnectedAndWe are in a holding pattern to see if he remains stable...
"The bravest are surely those who have the clearest vision of what is before them, glory and danger alike, and yet notwithstanding go out to meet it." Thucyclides

Monday, June 7, 2010

Just Maybe...

We finally were put in a room around 530 this morning. The hospital has only been at this location for a year and is beautiful. The rooms are large enough for the parents to remain with the child, there are laundry facilities on the floor (which was incredibly helpful since we were running desperately short on clean clothes!), and the nurses were great. Are we blown away by this hospital? No, but it has been infinitely better than the other two we were in this week! Aesthetically it blows everything else out of the water. It is truly beautiful.

Angie has a friend who lives in Pittsburgh, so she bribed Susan to bring me a Chipotle burrito bowl (for which I am forever in her debt! Real food!) and her boys brought games to play with William. It was the best hour. Will was laughing and playing. Yes, he went to bed as soon as they left, but he really enjoyed the opportunity to play Apples to Apples. What a huge blessing for both of us! Angie, you have no idea how much I appreciated what you did!

So, we were able to sleep from about 630 until about 745 when the nurses and doctors returned. Billy helped Andrew find his way out of the city and toward the Turnpike, then Billy returned to the hospital. I did laundry...oh, the mundane can be a beautiful thing. And clean clothes are appreciated not only by us but by our nurses. :) Will took a shower. We have such vast accomplishments to show for our day.

We have now eaten (Chipotle'!!!) and Will is enjoying cable and Mythbusters. It is the most peaceful time we have had in days. Hopefully, tomorrow will be amazingly calm and we will get to go home and actually get home instead of touring more hospitals on the route that leads toward home. :) Not that Pittsburgh is on the route home (We actually made negative process last night!) but it IS further east than Cincinnati, so in the overall scheme of life it is sorta on the path home. :) However, since we weren't asked to actually write reviews of hospitals it would be so much more pleasant to enjoy the scenery instead of the view from a hospital window. Now, for some of that elusive sleep!

No, You Can't Go Home

Let's just say that uneventful is not in my vocabulary. At least not on this trip.

We were discharged this morning from Clinton Memorial Hospital and started on our merry, exhausted way. Neither of us slept much last night so we knew it would be a long day, but home was beckoning. We drove for a few hours and made it as far as Wheeling, West Virginia where we stopped for lunch. Will was looking pretty tired, but then, so was I. Grrr...why do I ignore intuition???

We walked into a restaurant, but Will insists he isn't hungry. Okay. He really isn't feeling well. I run out to the car and get my handy dandy stethoscope and bp cuff. Okay. Why are we at 90/40 when you just got 2 1/2 liters of fluid?! The server asks if everything is okay. Um, no. We hadn't ordered yet, so I paid for our drinks and asked where the nearest hospital was. That is becoming way too familiar of a question.

We get on the interstate and call Dr. Teasley who is actually on call this weekend. She recommends that we head to the hospital where, unfortunately, we will probably stay for a few days while William is treated to some dextrose and normal saline ...continuously.

We made it to Wheeling Hospital in Wheeling, West Virginia where we proceeded to hang out for the next ten hours. This hospital is NOT equipped to handle William. The pediatricians refuse to admit him since they had no pediatric specialists, but the transport companies were either refusing to come from Virginia to pick us up, or they wanted $3,000 up front since there was no way to obtain a preauthorization on a Sunday. So, the poor ER doc was totally stuck with a patient whom he couldn't fully treat or pass off to someone who could.

After about 42 plans and ten hours of frustration with the transport companies, we finally just decided to put Will on normal saline and drive him to Richmond. Um, I was so not excited about getting back in the car after almost two full days of almost no sleep to drive a kid who hasn't made it more than 3 hours without an ER visit, but the options were exceedingly limited.

I loaded the car, got ready to switch over the IV bags, and get Will out when I realized that the IV pump needed electricity and I couldn't reach Billy to determine if the inverter in the car would power it. The doc then said, "Um, I think you are going to Pittsburgh." Oooookay.

By this point, Billy and Andrew have left home in the van to retrieve the Buick from Wheeling and meet me in Pittsburgh while I ride in the ambulance with William. Erlene and Randy have once again moved in to our home to take care of the other children.

So, it is now 3 am and I am sitting in my third ER in two days. Four hospitals in three days. Is there a world record for the number of hospitals in which you were a patient cause we are so working on it.

No, this isn't Cincinnati. They are not nearly as helpful nor as pleasant as Cincinnati, but at this point, as long as they leave Will on a dextrose/normal saline drip I will be content. I promise. The poor nurse who changed the bag before we saw the doc and put him on normal saline only was given a warning that this could not happen for long. Really. Unless you want this kid on the floor, get the order for the right fluids cause I am so not messing around...and I am way too tired to be diplomatic. He has been through enough and he just needs decent medical care until his body can recover... I, of course, had to apologize for being a total grouch and attempt to explain why I said what I did...but at the same time, I am so not kidding.

So here we sit. Andrew and Billy have headed off to find a hotel since Andrew will be driving the Buick home tomorrow. Billy will remain with us until Will is discharged...whenever that will be. Tomorrow, we will attempt to get a room at the Ronald McDonald House. If that doesn't work, we will probably just stay in the room with him. It is not ideal but it is infinitely easier on the budget.

Right now...all I need is sleep. Will is finally snoozing (ok. He is snoring!) which is really amazing since he has hardly slept in two days. I am sitting in a chair writing this because there is no place yet to lay my head. And if I fall asleep, I am so not waking up any time soon.

Saturday, June 5, 2010

Boring is Highly Underrated...Really

Did I actually say last night that I wished for a less entertaining drive home? Well what was I thinking? Nothing about this trip has been boring, so why should the drive home?

We checked out of the hotel this am and headed to a Bob Evans for breakfast. No trip to Ohio would be complete without one meal at a Bob Evans. :) We checked Poynt, an application on my Blackberry that helps you find things like restaurants, movies, or businesses through the use of the gps. Well, sure enough, back to Newport we went. Come to find out, it sent us to one we had visited on our previous trip. We ate, restarted the gps, and headed toward home...for at least a little while.

Will's bp was low this am, but not alarming. I knew we would have to stop this evening in time to get an IV started, but I thought we had enough room to get a few hours under our belt. Um, think again. We were maybe 45 minutes down the road when Will starts to wilt. I ask him if he is okay, and he says yes, but very soon thereafter he says, "I need fluids NOW." OOOOOOkay. There is a rest area a mile down the road. I pull off and take his bp with him sitting in the car. Ruh roh. It is down to 86/38. I run inside and ask where the nearest hospital is.

He is fading fast and I am calling Billy asking for directions to the hospital because I don't want to deal with my gps and Will and drive. I called ahead and alerted them that I am on my way in with Will. By the time we got there, Will was in really awful shape. He is sweaty, tachycardic, sighing (air hungry...really not a good sign), and unable to walk in. I run in for a wheelchair after leaving the car in a handicapped parking spot. At this point, you can ticket me for parking illegally. I just want to get Will inside.

The staff was a little unresponsive until they got about five minutes into his medical history. Then things started to move...the doctor was phenomenal, the nurse (Celeste) loved Will, and overall, they were cautious but very understanding and helpful. Celeste actually just came by to see how Will is doing. (Where do we find the Daisy award recommendations???)

We have been invited to spend the night, enjoying their hospitality, and should get back on the road tomorrow morning. I am so very grateful that we have good medical care available to us and that everyone here has been so understanding. I am concerned about the drive home tomorrow after spending a night in a hospital. It isn't the most restful of places and we have a long way to go...

Maybe the rest of this trip will be uneventful? Now that would be a welcome change! :) At least the sink in this roomd doesn't leak. :)

Friday, June 4, 2010

Good Grief

Let's just say that the trip yesterday had a strong resemblence to the rest of my week. The trip that should have taken 9.5 hours took 15 thanks to two car fires, road work, another closed interstate with a detour, more road work, a strong thunderstorm with zero visibility, and...did I mention road work? Ok. 30 minutes of that 15 hours was spent at a truck stop waiting for ibuprofen to work on my headache so I could continue to drive...

So we arrived at the hotel at 1140 pm...and the refrigerator isn't in the room and there is standing water on the bathroom counter. I call the desk. Twice. They offer to move us, but I am way too tired. Just bring the fridge and I will put towels on the counter and you can fix it tomorrow. Really.

So this morning we went to the hospital...the short version is that we get to return in six weeks to see both surgeons again to see if this neck is fusing. He has to stay in the collar until we return. While not the news for which Will was hoping, it is the news that was expected.

We headed to Guest Services and snagged tickets to the Cincinnati Museum Center, a combination natural history, children's, and Cincinnati history museum with an Omnimax theater. We met Bob, a volunteer there, who chatted with us throughout our visit until we reached the cave, the largest indoor cave in the US. Well, a living cave means water, and water in a non-ventilated area means mold which means Nancy is treated to a lovely asthma attack which prompts an early escape from the natural history side of the museum. I wondered what had been bothering me the whole time we were there, but as soon as we were in the cave I realized what it was...as the asthma quickly won. Grr...Really. This trip has been challenging...in so many ways.

We watched the Imax film, "Under the Sea", in a totally different area of the museum before leaving. It was amazing to see it on the Imax screen. Will is totally enthralled with the "Planet Earth" series, but we both enjoyed this movie.

So then we headed back to the hotel. Only I, of course, after a series of mis-turns, ended up in Newport, so we instead had dinner at Johnny Rockets wich was really fun. We finally got a breather. We laughed, we ate, we played cards, and then we visited a Barnes and Noble. Then, Will got to watch a magician perform outside the bookstore. That was probably the best part of this entire trip for him!

We stopped by Graeters, the Cincinnati based ice cream parlor that has amazing black raspberry chip ice cream and headed back to the hotel. Come to find out, Newport on the Levee is a whopping mile and a half from our hotel. Go figure! :)

We are safely ensconced in our room that wasn't cleaned with a sink that is still leaking. Really. The offered to move us and I said, "You have to be kidding me." I have no idea how they are going to financially handle this, but this has been most...interesting. They are amazingly pleasant, the hotel was beautifully remodeled, but, um, not so well run.

Tomorrow we head toward home...in what I hope is a slightly less entertaining drive. :)

Wednesday, June 2, 2010

See ya!

It's time for us to leave our sweet state of Virginia and once again head north to Ohio. This time, however, I'm driving Will and me. Yep, just us and yep, I'm driving. We have appointments with the surgeons on Friday. Gotta love Cincinnati Children's! The Clinical Concierge organizes your appointments for you so that you can see everyone on the same day. Considering the sheer expense and time necessary for the travel, it's amazingly helpful to not have to hang out there for a week just so you can see two or three doctors.

So the current plan is to leave in the morning and hopefully arrive tomorrow evening (late). The appointments are all on Friday, so we will plan to depart Cincinnati late Saturday morning. I'm not sure how far we'll get on Saturday. 1200 miles in three days is a bit...taxing, especially with no relief driver. (Even West Virginia frowns on 13 year olds driving on highways!) :) So, if I'm too tired, then I will stop Saturday evening and complete the drive on Sunday.

It's a bit of an aggressive schedule, but from a budget and family perspective, it's the best decision. So, prayers would be appreciated, especially for solid, deep rest for me. Will's bp was 88/40 this afternoon before he received 1.5 liters of fluid by IV. He's been drinking a quart of Powerade Zero every day to try to keep his bp up, but it's just not sufficient. So, we are going armed with our 45 lb of medical equipment, have requested a fridge in the hotel room to store IV fluids, and are praying for a smooth, easy trip...

I'll update hopefully in the evenings. I even packed the real camera, so if I can figure out how to upload the photos, I might even include a couple. Maybe. That is a big IF. I'm so not the tech savvy one in the family!

Memorial Day Weekend


Every year, we run into our friends, the Richters at the Luminaria so this year, we decided to actually attend it together...but of course, we had to meet at Carl's first. (Carl's is Fredericksburg's favorite ice cream haunt. They sell 3 flavors: chocolate, vanilla, and strawbery and accept only cash.) Even Ruth, Cam's puppy, was excited to go.

Several years ago, we really searched for ways to explain to our children what Memorial Day was supposed to commemorate. It isn't just a day that Dad stays home from work and they don't have to do schoolwork. We want them to understand the sacrifice that others have made so they can enjoy the benefits of living in the United States. The Luminaria is an amazing way for them to visualize the sacrifice of thousands of men.

All say Saturday, Scouts are busy setting thousands of luminarias on headstones at the Fredericksburg National Cemetary on Lafayette Boulevard. At dusk, park rangers are stationed throughout the park to either describe a soldier or to tell about the battles that took place on the hillside. Every half hour, silence descends on the entire park as hundreds of people stop chatting or walking and turn to face the American flag while a trumpeter rings out the haunting sound of Taps. It's astounding how such a simple melody can be so moving.

As we were leaving the park, Benjamin held my hand and asked me what it meant to live in a free country. I described to him how not every country allowed its citizens to worship God or read the Bible or even to travel to a different state for medical care. He was stunned. He said, "That's amazing." True. We are so indebted to those who have given the ultimate sacrifice for our freedom.
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