Tuesday, April 27, 2010

O-Hi-Ho, Hi Ho...

We have an appointment in Cleveland on Monday. I knew we had this appointment, but I called Cincinnati yesterday to get our post-op appointments made, figuring I'd reschedule Cleveland to coincide with our return to Cincinnati. Now wouldn't that have been convenient.

But, apparently, that is not gonna happen. Cleveland will see us either Monday or in September. Seriously. So, I called Dr. Cohen's nurse and asked if it would be a major issue if we waited. And she said, "The labs from December are all finally back. It would be better for you to come Monday." I explained that Will had just had major surgery and it would be better for him to wait. Nope. She didn't budge. If there is any way to make it, you should.

What exactly does that mean? I mean, is the news in the lab work so bad that we need to address it right away? Wouldn't bad news have created a phone call? I do not want to drag a kid who just had major neck/head/spine surgery around the country if I don't have to...but apparently, it is considered in his best interest to go.

So yesterday was spent emailing Angel Flight and requesting a flight. Again. I hated asking again, but it really is better for Will to not spend 11 hours in a car. Cathy said she would put the request out, but we still have to prepare for a drive. (How often in one month do you change the oil in YOUR car?) I made hotel reservations. At least this time I knew which hotel to call, so I didn't have to spend half a day trying to find one. All that is left is a rental car, and that will wait until we know if we need one. But even there, experience finally wins out, and I know how to handle that one too.

So, travel with Will to the wilds of Ohio is getting more manageable in terms of preparation, but not in terms of stress on the family. Poor Caroline looked at me with huge eyes and said, "You are leaving again?!" Yes. I have to leave again. This morning, she asked me if Will had always had this problem with his neck. Will he always be this way? Ugh. It breaks my heart for her to ask such questions and for me to have no answers that can reassure, except to say that the Lord knows and cares for Will just like he does for Sweet Caroline.

So, the suitcases are finally unpacked and laundry is almost caught up, but the suitcases are hardly cold before they are needed again. And just think. We get to go back to Ohio in about a month for the post-op visits!

Saturday, April 24, 2010

Just For the Record

Many of you know that I do not like to ask for help or ask anyone to go out of their way for me. I mean, really, if it is my responsibility, then it is my responsibility. Now I have no idea why the Lord decided to put this insanity in our lives, but I have a feeling that my learning to ask for or accept help is part of His grand plan.

So, just for the record, I'm letting everyone know that, yes, I did ask for help. You see, when you request an Angel Flight, you are asking someone to not only go out of their way, but to use an expensive resource that uses expensive gas and to take a day our of their life to fly you somewhere. Now, they don't take you for a day at the beach, which would be incredibly lovely, but they do take you to a distant medical appointment. Hmmm...what was I thinking? We could have a medical appointment at the beach..Nah. We only go to cold destinations for doctor appointments.

So, Matt, the pilot who flew us the first leg of the trip going to Ohio, called and asked if he could fly us home which meant that I was going to have to..gulp...let him know when we were going to be ready to go and ask him if he was still interested. Oh, dear. I'm not so great at this. It took a huge effort to actually request flights, but that was fairly anonymous. You email your information to Cathy, and she sends out the requests for flights. But here, I was going to have to actually call Matt and ask him to fly us home.

But I did. And he very graciously did so. He arrived in Cincinnati a little after 430 this afternoon. We met him with a sandwich (figuring he would be hungry...and he was!) from Bruegers, then we loaded the plane. In the midst of this, he talks with Billy and decides that he wants to take us all the way to Shannon instead of to Farmville. So, Billy graciously accepts (because we all know I could not!), I cancel the rental car, we load Will into the back seat with pillows and blankets, and we take off.

The next three hours were spent with Will resting comfortably while Matt and I had a great conversation...from flying to families to churches to...and when we were a little out of Fredericksburg, he actually let me...yep...fly for a little while. It was so amazing. We banked, we climbed, we dropped in altitude, and we all three had a blast. It was so good to laugh and just...relax for a little while.

So, just for the record, not only did I ask for help, but it was enjoyable...all in an effort to get William home safely and with as little pain as possible. So, Matt, thank you for your incredible generosity, and thank you, Angel Flight, for the amazingly helpful assistance that you provide.

Friday, April 23, 2010

Home to Virginia

Matt, our favorite pilot, called last night and asked if we could fly home this evening instead of tomorrow. There is a front with rain and thunderstorms moving in here in Cincinnati, so today would be much better for him. So, with a little scrambling, we were able to set up a car in Farmville, the airport into which we will fly, and Will and I will drive the remaining two hours home from there. So, provided Will handles the travel well, we should be home later tonight.

Yesterday, William did amazingly well. He was feeling great, pain was minimal to nonexistent, and he had really wanted to see the movie, "Oceans", so we took him across the river to Newport to see it. Well, that was too much. Today, he still has minimal pain, but he is happy only when horizontal. He has zero energy.

We saw the doctor this morning and Will was cleared for travel. Billy has dropped us off at the RMH so I could pack while he found a Verizon store to deal with his Blackberry. Yes, Toto, we are in Ohio, the land of the dead Blackberry. :) We should be leaving here by 330 to head to the airport to meet Matt.

So, while there is a long recovery ahead, there is hope that the bones will fuse and that stage 2 can begin. Thank you, all, for the prayers, emails, e-cards, cards, and care packages. They have been such an encouragement to us and a testimony to those around us. We are truly blessed.

Wednesday, April 21, 2010

McDonalds Will Never Again Look the Same to Me

I must admit that I am not a fan of McDonalds. I mean, I do occasionally enjoy a bacon, egg, and cheese biscuit (minus half the biscuit), and french fries are one of my favorite foods, but in general, McDonalds would not be high on my let's-go-there list. However, I must admit that the Ronald McDonald House in Cincinnati makes me totally appreciate their charity efforts.

Being away from home and having your child undergo major surgery is a whole new experience. There is little that resembles home, you are exhausted beyond reason, and you still have to have clean clothes (unless this amazing family that you stay with whisks away your laundry and it reappears clean!). You eat at a cafeteria where your options are hamburgers, pizza, paninis, or salad...for every meal...for days on end. There comes a point where some semblence of normalcy, or family, is just desperately needed...some place where you can sit in the sun, at a table in a room that looks like a family room (except this one is quiet so it kinda seems like my family room...meaning it has a similar style of furniture).

So, yesterday, our fairy social worker waved her magic wand, and tada! We have a room at the Ronald McDonald House after days of being on the waiting list. So, off to register I went. And, of course, I promptly cried during registration. It isn't that this place is the Ritz because it isn't. It is the fact that corporations out there have donated lots of resources to assist families in a situation that can truly be desperately, financially, impossible...and made it as much like home as they could. And they encourage local groups and businesses to provide meals for the families. They have attempted to ease what feels like an impossible burden just a little.

Due to our friends in Virginia, and Ellen, Chelsea's friend in Charlottesville, sending out an email to friends in Cincinnati, we have been blessed throughout this entire trip. The financial gifts and chocolate from our Virginia friends and family, to the physical and emotional support here in Cincinnati through Faith Presbyterian Church, our experience here has been significantly easier. There are so many families in this hospital who have not been so blessed. We have been able to provide a huge testimony to how the Lord through His church has totally taken care of us...and it has made an impact on the staff with whom we have had contact.

So, thank you dear friends for making this path a little easier, and thank you McDonalds for the gift you provide families who truly need a respite in the midst of the stress of having a sick child in a distant city. And most of all, thank you, Lord, for your provision for our family!

Monday, April 19, 2010


Well, to say this day started well would be...well...a lie. It didn't. Will turned down extra pain medication at 3 am, which I should have overridden, but I was exhausted and sleepy, so I didn't. So, at 6 am, he was in horrid pain. We spent the next few hours dealing with playing catch up, which is never where you want to be post op, and dealing with this rapidly swelling face.

When the resident visited us to discuss pain medication at 6, Will's face seemed fine. When I helped Will go to the restroom at 8, his face looked like a balloon. Once again, no explanation, but the doctors spent the next few hours telling me not to worry about it, and I spent the next few hours thinking that the other shoe is about to fall. I wanted to scream and say, "He has autonomic dysfunction! He does NOT follow the rulebook!"

So, a nurse practitioner with neurosurgery visited us and I asked why he was fine and then two hours later it looked like he had stuffed a bag of marshmallows in his cheeks. He looked at me and told me, "I am not lying to you. This is most likely post op from the surgery." And while I had spent my whole day trying to tell them that the other shoe was falling and they weren't paying attention, I realized that maybe it wasn't falling. Maybe, just maybe, this was surgery related and maybe I could actually take a breath. Maybe I don't have to be ever vigilant because there are other people out there who are helping to be vigilant. No, they don't understand the intricacies of his care, but they are willing to listen and do what they can to manage his care. I don't even have to fight for fluids; they just told me to let them know when it was time. Really. We are not in Fredericksburg anymore, Toto!

So, if I don't have to be ever-vigilant, what am I to do? Well, apparently, the correct answer here is to cry. Which means that Billy and Will and Mica, our nurse, are a bit lost as to what to do with me. So, when a massage therapist is sent in to help Will (The neck muscles are anything but happy!), apparently they can do a chair massage for parents. Yes, this is a hospital service. (Have I mentioned yet that I really do like this hospital???) So, she massaged my very tight shoulders and I cried...again.

So here we are this afternoon...so far the fever has not reappeared. Will's brace was refitted in case that was contributing to the swelling, and Will is finally sleeping. Chelsea managed to have Jimmy Johns delivered to the hospital, so I ate. The social worker came by and is going to call the Ronald McDonald House since we are STILL on the waiting list...and she gave us meal cards. (Parents can order off the menu and have their meal delivered to the room with their child's meal...if you have a $5 meal card...we discovered this little service yesterday.) Dietary is working on Will's foods and is now sending a smoothie twice a day.

Here we are Tuesday afternoon. I only cry when someone sends an e-card, a greeting card, or a package to Will to show their love and support. Or when someone has lunch delivered from a non-cafeteria restaurant. Or when Will wakes up and can actually get out of bed without major assistance but one of his eyes is almost swollen shut. So, overall we have not yet had to build an arc and are surviving our little corner of the hospital.

Sunday, April 18, 2010

Will Graduated!

Well, about two hours ago, Will was evicted from ICU and welcomed to Building A, Room 713...or for those who want to know how his room is identified inside the hospital, it is A713. So, the good news is that there have been no more episodes of shaking and blurry vision. Bad news is that we have no clue what precipitated it.

As for events of the day...glad ya asked...

Will's PCA was pulled, which means that he no longer has the special blue button that dispenses narcotics directly into his port. He is on mostly oral pain meds with the addition of an IV muscle relaxant...the neck spasms are painful from this surgery. They did pull the PCA, kinda neglected to get pain meds on board, then transferred him. So, we did have to overcome the pain, but an additional shot of those lovely narcotics in one of his other IV's appears to have worked...if his snoring is any indication. :)

Food is a bit of an issue. I had called ahead to the nutrition department to alert them to Will's impending arrival, but I never actually let them know the surgery date was moved. So, with it being the weekend, Billy has learned the way to Whole Foods quite well. The Nutrition Dept tech is amazing, though. Billy is heading to Whole Foods once again for some rice protein powder, and they are going to make Will some smoothies.

We also are on a quest to find another mask for his CPAP. His current mask is held on by straps that go behind his head. Well, given the brace, the pain, and the location of the incision, that is totally not going to work. The last two days have had so little or such interrupted sleep, that he never hit that deep dream-stage sleep where his apnea magically appears. Until today. They are trying to locate a mask that would work...which would be good because sitting here typing this, I am listening to him snore...not breathe...snore. Hmmm...guess all of those drugs are kicking in and he finally hit that deep sleep he has been needing! Time to figure out the mask thing...

Food has been a bit scarce today given all of the commotion, but thanks to the Riggs, I have been well cared for. They left us with coffee cake and fruit and the even more important brownies. :) What else do you need if you have chocolate???

Saturday, April 17, 2010

Where Do I Begin???

Well, there is no way this one is gonna be brief, so you might as well grab a cup of coffee! :)

The surgery went well. Total surgery time was right about 4 hours, 5 if you include all of the prep once they take him to the OR. Both surgeons and the anesthesiologist were pleased with the procedures and how well Will tolerated them. Will is in a neck brace. Monday, his new one will be made and fitted to him.

So, yesterday evening, Will was brought to ICU. We finished chatting with Dr. Crone and headed up to the fifth floor. We have to sign in and wear name badges with Will's room number on them. She asked us if there was anyone whom we did not want to visit, and we explained that we live in another state and know only one other family and would have no visitors. Perfect timing, because that is exactly when Matt and Lisa from Faith Pres walked up and said, "Are you Billy and Nancy?" and the receptionist said, "I thought you didn't know anyone!" We explained how Faith Pres has supported us here in Cincinnati without ever having even met us. The Goertmoellers offered us their home as a refuge. Becky G visited with us during the interminable wait of surgery. Matt and Lisa dropped by, and tonight, the Riggs came with dinner in hand...and stayed to share it with us. (Oh! And we discovered that her relatives were actually the Weedons, friends of the Washingtons who are portrayed by GWYF leaders!) But I digress...

So, the receptionist was excited at how the Lord was at work. She explained the rules regarding ICU, then offered helpful advice on how to manage daily life here. There is a parent sleep room that is first come, first serve, but priority is given to those whose children are admitted that day. There is a washer and dryer available, and they provide detergent. A family today informed us of the parent meal card where you can order a meal from dietary that will be delivered with your child's meal, and it is significantly cheaper than paying full cafeteria prices. So we are learning how to survive at the hospital. We are still on the waiting list at the Ronald McDonald House, and all of our stuff is still at the Goertmoeller's house, but we are managing here at the hospital with a change of clothes that we washed tonight. And there is a Whole Foods about ten minutes away that Billy visited for Will since his diet is really limited...

Back to the story..

Will settled into ICU with a great nurse. (Do they have bad nurses here?! Have not met one yet!) Will was totally hilarious coming out of anesthesia. He was telling jokes but couldn't keep them straight, so he was telling like 20 jokes all as one...and laughing. And instead of asking for water, he was asking for H20. He amused all with whom he came into contact...His pain was well controlled, he was stable, and I was exhausted. Billy stayed in the room (only one parent allowed) and insisted that I sleep. So off to the parent room I went.

I slept fitfully and returned to the room early this morning to discover that Will was running a fever of 100.3. They weren't worried about it but were going to monitor it. The plan was to clean him up, change his clothes, remove his arterial line (an IV in an artery in the hand...they use it to draw certain labs and gives them better access for certain drugs.), and transfer him to a regular room.

They are waiting on a bed assignment for the neuro floor, when Will asks to go to the restroom. Billy helps him walk there. When Will gets back in bed, I notice he is shaking. I ask him if he is cold, but he answers no. Apparently he was shaking mildly before going to the bathroom, but is realllly shaking now. He mentions his vision is blurry. Well, that is enough to warrant some excitement. So, I head out to the nurse. We check his glucose. We check his vitals. We check everything we can think of and can find no reasonable reason for the shaking and blurry vision. Dr. Crone is finally called in and he decides it is simply autonomic dysfunction and tells them to transfer us to the floor.

Well, our pediatrician on the floor here decides that maybe that isn't what she wants to do, so she decides to keep him here in ICU tonight. It took well over an hour for the shaking and blurry vision to disappear...and the fever is climbing to over 102. Time to draw some blood from the port and run some blood cultures to look for infection.

Here I sit in ICU with my eyes crossing...and letting you know that Will is doing okay, but there are a few concerns...enough that we are all staying here at ICU another night. But even as I sit here yawning and wishing for sleep, I am so very grateful for how the Lord has orchestrated support and kindness for us here in Cincinnati...Thank you all for your prayers, texts, and messages. You really have no idea how much it helps!

As for Cincinnati, well...all I can say is that I love this hospital and am very glad that Will's surgery was here...

Friday, April 16, 2010

Cincinnati Children's Medical Center

For the quick update...well, those of you familiar with me will know there is no such thing as a quick update. :)

The flight south was lovely. We had great weather and a very pleasant pilot. When we landed, we peeled off jackets. We left chilly Toledo and entered very warm and sunny Cincinnati. I packed zero shorts or sandals or capris, so I was regretting that decision. The weather is changing today, though, so it will once again be chilly.

The family who offered to host us is beyond amazing. They have welcomed us into their home and made us feel so very welcome. They have been more thoughtful and caring than I ever would have imagined. We have been so blessed.

Yesterday was pre-op. It was supposed to be orthopedics at 1245, neurosurgery at 2, and anesthesia at 3. Dr. Crawford's fellow decided that he would want an xray. Once that was done, we chatted with her and then with Dr. Crawford. He was great with Will and explained that he puts in the plate, rod, screws, and bone graft, but the Lord knits it together. :) Dr. Crawford explained the surgery to Will, including the little tidbit of the collar Will will have to wear 24/7 for the next 6 weeks. By this time, it is now 245, so instead of neurosurgery, they send us to anesthesia. The anesthesiologist on calls begins the interview, then quickly retrieves Dr. Istaphanous (George) who will be the anesthesiologist to actually be involved in the surgery. George is by far my favorite anesthesiologist ever. The next hour and a half is spent providing him with a medical history. He decides very quickly to order an echo ("Yes, I need it done right now.") and a cardiology consult. ("Are you kidding? The cardiologist didn't do an echo or EKG?") Really, I like this guy. ;) Billy and Will were sent off for an echo while I finished the medical history with George. By the time we finished, he had about an inch of paper to read and had a "deer in the headlights" look about him. He told us to bring him chocolate for surgery. :) He totally deserves it! Mimi from neurosurgery met Billy at cardiology and had him sign their paperwork. Then to the lab we went.

This morning, we arrived at the hospital and our room was quickly filled with a ton of people. George had ordered a bolus of fluid for Will and a cardiology consult. The cardiology consult had to occur before George would allow anything else to move forward. He finally gave the clear for surgery, and they quickly got Will prepped and hydrated. He was heading to the OR by 1145.

George did come out a little while ago to let us know that Will was tolerating anesthesia well. Understand that anesthesia drugs lower your blood pressure. If you are already hypotensive, then the anesthesia drugs can put you in a crisis. Due to his diligence, that has not happened. George did laugh and tell us that Will was giving him an ulcer, but the chocolate was good. :)

So, we are now in a waiting game...Will will be in surgery until at least 5 and maybe later. I will post an update as soon as possible thereafter.

We deeply appreciate the prayers, the texts, the emails, and the support you all have shown us. We are in a state where we know one family, but we are encouraged to know that you are praying.

Monday, April 12, 2010

Doctors and Zoos and Cell Phones, Oh My!

What a day...

We started with breakfast at the hotel because we were so tired that we just wanted to sleep. The hotel breakfast was actually really economical and came with an endless cup of coffee! This morning, that alone was worth the price of breakfast!

We made it to the hospital and, while in the waiting room, we met a couple from Pennsylvania who were also here to see Dr. Grubb about POTS. He has really struggled, but his wife seems really supportive. We swapped information because they feel so alone. Boy do we understand!

We were called back in record time, and then we waited...but not nearly as long as I had feared. Dr. Grubb discussed how he is focusing on the different causes of POTS and how treatments differ for the differnt causes, he did sign the release for surgery that we needed for Cincinnati, and he did say that the impending surgery might actually make things worse for a while. I was surprised, though, when they did no EKG and no echo. Will has had some serious deterioration, his diastolic pressure has been of specific concern, and yet there was nothing pursued that would ensure that structurally all is still well. Yes, I am frustrated. I know we need a local cardiologist, but it is tough when they tell you, "Go see Dr. Grubb...I don't understand this!"

The real problem here is that Will is not a straightforward POTS patient. He has so many medical issues that how they overlap and affect one another is unknown. We do know that some issues with mito can create cardiac issues, so it would be nice to know that that has not happened...especially in light of the deterioration.

On a better note, we did get a call from Angel Flight, and we are good to go to Cincinnati. The pilot who had volunteered for our flight was able to handle the change, so we meet her at 1030 Wedneseday morning for the flight to Cincinnati's Lunken Airport.

I also received a call from Beth at Cincinnati, and our three consults on Thursday are scheduled...orthopedics, Dr. Crawford, is at 1245; Dr. Crone, neurosurgeon, is at 2; and anesthesia is at 3. It will be a full day, but at least it is back to back isntead of spread throughout the day. Friday's surgery was moved from 730 to 11so we won't have to be at the hospital until 930 or so.

We walked through the zoo this afternoon, took a couple of wrong turns (Will is learning how to manage the gps on the blackberry!) while touring some less than savory sides of Toledo, and finally found a Verizon store (in a less threatening side of town). We then made it to a Barnes & Noble for the next book in a series that was gifted to him (He was given the first three books in the series and we were blessed with Barnes & Noble cards...), finally got dinner (KT, your Red Robin rocks! This one...not so much!), and Will is now watching "Akeela and the Bee" while I type away while cross-eyed.

Tomorrow, we will hang close to the hotel. We will most likely swim, find a laundromat so we don't run out of clothes (My wardrobe is not large enough to accomodate 2.5 weeks or more of travel!), and run an infusion while playing Bananagrams, cards, and watching a movie or two...a nice, quiet day...a lovely reprieve before the insanity of the coming storm.

If anyone would like to text Will, you can do so at 540.621.4445. This number is good for only one month and is only for texting. But, he does have unlimited texts, so encourage away! :)

So, please pray for safe travel for Billy who is heading toward Cincinnati sometime tomorrow, for our safe flight on Wednesday, and for Will. He is really congested from allergies and it would be insanely frustrating to have to rescheudule this surgery!

Sunday, April 11, 2010

Communication 101

Over the last few days, I have been repeatedly asked about how to send a card or gift to William while he is in Cincinnati. There are several options available.

First, you can send a card or gift to:
William Coleman
c/o Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue
Cincinnati, Ohio 45229-3039

Secondly, you can send a free e-card. If you go to http://www.cincinnatichildrens.org/ecard.htm you can create an e-card that the hospital will then print and deliver for you.

We will be in Cincinnati sometime Wednesday. Will will be admitted Friday morning prior to surgery and will be there 5-7 days.

North to Toledo...

This morning, David and Caty came up to have breakfast and head to the airport with us. What really happened is that they cooked breakfast while I ran around managing last minute details. :) Then off to Shannon Airport we went...

We arrived at 932 (We can't get anywhere on time!), and by the time we were all out of the van, Matt, our first pilot, was walking over to us. Just for the record, Matt was amazing. He came from a large, homeschooling family and now has two children of his own. He met the whole family, then offered to take the three littles and one older kid up for a quick flight. Since Andrew had flown before, Chris went. The kids had a blast with Matt, so then it was time for us to load up and head out.

The first leg of our flight was just amazing. We had a beautiful day, and Matt chatted with Will over the headset. They thoroughly enjoyed one another's company which was really cool to watch from the backseat. We landed in Wheeling, West Virginia where we met the second pilot, Dick, who landed about ten minutes behind us. We shared our lunch with Matt, then we loaded our stuff into Dick's plane and headed back out.

Dick was much more stoic but no less gracious. He brought a poster for Will of a plane dash as well as an aeronautical map. He also had a third headset, so I could actually communicate with them as well. He even tried calling ahead to the airport when we were about 30 minutes out to ensure that yesterday's rental car fiasco was resolved and there really was a car waiting for me.

We spent a total of 3 hours in the air between the two flights. We did actually get a rental car at Metcalf Field, and we meandered our way to the hotel via the zoo. :)

The Toledo Zoo is one of the top ten zoos in the country. It is truly just a beautiful place. After sitting all day, we were ready to walk around for a while. But hunger won out and we headed for dinner.

Because we had shared our lunch with Matt, we were starving...so we headed to Olive Garden for dinner. Heading back down toward the warehouse district didn't sound appealing. The Toledo Mudhens were playing at home tonight, so parking would have been a nightmare. I knew where Olive Garden was in relation to the hotel, and I knew how to get from the zoo to the hotel, and since my blackberry battery was truly dead, I went with what I knew. While the service was a bit abysmal, the food was excellent. When you are starving, even McDonald's can look appealing...and McDonald's never looks appealing! So, we ate, stopped by a Kroger for distilled water for the CPAP and drinking water for us, then we checked into the hotel. We unpacked, played Bananagrams (I won!), and watched Michael Buble' on PBS while I started charging all of the lovely eletronic equipment.

Will's bp is very low tonight, but he isn't feeling horrid. He is moving pretty slowly, so I am pushing Gatorade in the hope that we can infuse on Tuesday and not tomorrow...100/40 is at the "I should start infusing now" marker, but since he isn't feeling horrible, I am hoping sleep will help. Guess we will know tomorrow.

We see Dr. Grubb at 930 Monday morning, so I need to sleep...

Thank you for your prayers; thank you, Beth, for providing meas so my family won't starve while I am gone; thank you, Erlene, for continuing to hold down Fort Coleman; and thank you, everyone else, for your amazing gifts that helped make this possible...

Thursday, April 8, 2010


It has been quite a day.

This morning, I called Cincinnati. We had heard nothing from them in ages, so I wanted to confirm that we were indeed on the schedule for the 20th. Only I discovered that we needed another pre-op approval by our pediatrician. Ohio state law says that the pediatrician has to approve the surgery within 30 days of the surgery. So, Erlene walked in the door to teach history and then promptly put on an apron and helped get barbecue sauce made for dinner so I could dash out the door to Dr. Aaronson's because today is the ONLY day I could see the pediatrician.

Suffice it to say that the day grew long with things that needed to be done (like purchasing cole slaw since mine apparently froze in the refrigerator...thawed cole slaw is totally disgusting!) while Erlene continued to hold down the fort...encouraging littles to clean and do history while I traipsed through Fredericksburg.

In the midst of said errands, I received another call from Cincinnati. The surgery has been moved...again. Unbelievable. This is getting ridiculous. Remember the itinerary I gave you guys a couple of days ago? Toss it out. Surgery is now scheduled for the 16th. Yes, that is the day we are supposed to fly from Toledo to Cincinnati. We now have to travel Wednesday, the 14th. How that is going to happen is a bit uncertain at the moment, so stay tuned. I did ask if this multiple rescheduling issue is typical of their office, and Beth, the nurse, said, "No, Will is just a unique case." Not comforting words despite already knowing that...

So, we rush home and finish working on dinner. Only the whipping cream in the fridge is really half & half which doesn't whip well. So, Erlene, who is unbelievably gracious, dashes off to the grocery store for me while I continue with dinner preparations. Understand Erlene has cleaned, taught history, cut and arranged lilacs, and baked brownies...oh, and cleaned up my barbecue sauce making mess. This woman is truly unbelievable. I have no clue what I would do without her.

So, Jervetta and Brandy arrive from Make-A-Wish. They join us for dinner, and much to my relief, they fit right in with our crazy loud family. Dinner was such a blessing...we have not laughed this much in a very long time. They passed no judgement, enjoyed the large family atmosphere, and were simply a joy.

As they depart around 930, the Dunmires pull into the driveway. They never arrive this late, but Angie is so faithful. She laughs and says she wore me down and I finally gave in and let her wash our sheets...which to some extent is true. But, what is really true, is I am beyond grateful to actually have clean sheets...I can feel guilty over never having clean sheets, or I can let Angie do them and feel guilty that she is doing them while Will's allergies aren't suffering because his sheets are well beyond the point of needing hot water and detergent.

But the Dunmires never come to my house this late...and it's raining, so why would they have had baseball practice this late? Um, it's because we are apparently loved. More than I ever knew or imagined. Angie came walking in tonight with a basket of cards...of all shapes and sizes, bearing words of encouragement, gifts to fill some serious financial needs, and gifts to nurture our family.

I hesitated writing the post regarding our medical expenses. It isn't something I like to make public. But when I tell you now that the needs are covered, and with such love toward our family and in such unexpected ways, it could only have happened through the Lord's infinite grace...even when I just couldn't see it.

So, while I was so frustrated with Cincinnati this afternoon, the Lord had been orchestrating a vast symphony of love for our family that met not only a huge financial need, but also a huge need for encouragement...and a hefty dose of feeling not quite so alone. Unbelievable. Thank you seems so...unbelievably... insignificant.

Wednesday, April 7, 2010


Life around the Coleman home has been rather bleak for quite a while. The last two years have taken a huge toll and the strain is massive. Everywhere you look, you see needs and realize that it is impossible to meet even half of those needs. You want to run and hide, but that isn't an option, so you keep trudging along. Yet, in the midst of suffering, of dark, swirling clouds, the Lord does provide rays of sunshine.

There are women who come in and educate my children while I'm constantly on the phone to doctor's offices, the insurance company, home IV companies, home health companies, Will's nurse, another doctor's office, or a hospital. Not only do they educate my children, but they have zero condemnation for my lack of contribution. They simply acknowledge that I am overwhelmed, and they talk to each other about what the kids need to be doing...While I totally miss educating my kids, I'm so grateful for these women.

Then there's the friend, (you know who you are...and yes, I'm updating the blog!), who magically appears at my house with clean sheets and whisks away the dirty ones. I don't even want to tell you how long it had been since sheets had been changed regularly in this house. There is no time! When you can't even get the laundry done, sheets don't even figure into the equation. But now...I get clean sheets and so do my kids!

Next, we have this couple with whom we have been friends for more than two decades whom I lovingly term, "My Crisis Management Center." They willingly drop whatever they are doing and rescue me from whatever disaster that has struck. They are even willing to move into my house and stay with five of my children while I am in Ohio with Will for possibly as much as three weeks. What kind of friend does that???

There is a family in Cincinnati who is willing to host us, total strangers, for as long as we need a place to stay while Will is in the hospital or until we can actually get into the Ronald McDonald House. Two days ago I had no idea how we were going to do this financially. I prayed all day for wisdom. The financial number is so huge that the only way it will be managed is by the Lord. He is slowly chipping away at the deficit that exists...

We are truly blessed by these and others who have simply shown up and said, "Let us serve your family during your time of suffering." It's so hard to accept the help, but at the same time, it's so encouraging to see how the Lord loves us through the hands of his people. So, yes, life is still bleak much of the time. It's lonely most of the time. But we do see blessings in the midst of the pain and the suffering and for that I can say, "Thank you."

The Itinerary Vs. the Budget

It has been brought to my attention that I have been less than informative regarding Will and the current travel plans. There has been a reason...mainly that due to financial concerns, the itinerary was put on hold. Doing what is best for Will and doing what is best for our budget are totally different things at the moment. So, while the uncertainty remains, here is what I do know.

Will has essentially had three infusions for the last few weeks. Whether it is due to spring allergies, the recent bout of global warming (Hello, JEEP!), or simply a worsening, Will has needed more fluids and more care than in previous weeks. Dr. T has recommended daily intake of Gatorade or similar electrolyte replacement beverages and salt tablets. That is the short version...

As for the impending excursion to the stunning destination of Ohio...

We were approved and scheduled for Angel Flights. Will and I fly Sunday, the 11th, to Toledo. The first pilot will pick us up in Fredericksburg at Shannon Airport and fly us to Pennsylvania. A second pilot will meet us there and fly us the rest of the way to Toledo. Enterprise will deposit a rental at the airport for us, and we will return it to the same airport Friday, the 16th, when another pilot with Angel Flight will pick us up and fly us to Cincinnati. At Lunken in Cincinnati, Enterprise will have another vehicle for us.

We meet with Dr. Grubb on Monday, the 12th. We have to allow a minimum of one day for testing, should any be ordered. William will need an infusion Tuesday as well. Since we fly on Friday, he also has to be infused on Thursday. That leaves Wednesday as the only totally open day.

Billy will drive to meet us sometime over the weekend of the 17th and 18th. Will's pre-op appointment is Monday, April 19th. Surgery is early on the 20th.

Now...while this is the current plan, we're still working out the finances. The Angel Flights are donated, so we have no cost there. But I do have to figure out how to pack the 45 lb of medical equipment in a fashion that is manageable. We also are allowed only 50 lb of luggage, so today's job is to do laundry and determine if any clothes need to be shipped ahead.

The real expenses are hotel, car, and food for basically three weeks with loads of variables thrown in. Toledo expenses are easy to determine. The hotel, refrigerator for IV fluids, car, and food can all be budgeted....to just under $1,000. The real issue is Cincinnati. Our lodging there can range from free (a family has offered to host us, but we have not been in contact with them, so we are still uncertain), to $20 per night for the Ronald McDonald House (where you put your name on a list and they call when a room opens and you finally are at the top of the list), to $80/night at the local Holiday Inn Express that works with the hospital. The rental car there will only be for two days, so that isn't horrific. Then there is food. Eating away from home for almost three weeks is a bit pricey.

So, the reason for the itinerary issues is that if all does not go well, we're looking at $3,000 for the full time. If all goes very well, that number falls to a little over $2,000. When almost $10,000 in medical bills is sitting on your desk, those numbers are a bit insurmountable...which leads us to determining if there is any way to do this any more inexpensively without compromising Will's stability.

So the prayer at this point is that the Angel Flights don't get cancelled last minute. The other prayer is that the finances are truly available...without guns, masks, and a bank being involved. :)