Will had an IV last night that finished about 2 this morning. I let him sleep in, took him to science and geography, then dropped him off with Erlene while I hung out with the littles at baseball practice. I was in the Jeep, so I had to take the littles home, then go back for William.
When I picked him up, he was looking pretty rough. He needs yet another IV. He said he was ok with Target, so I dropped in to pick up two items. While there, he was determined to go look at the mountain bikes. The child just wants a mountain bike.
Last year for his birthday (August), he asked for two items...a computer and a mountain bike. There was no way I was going to give him a bike that he was totally unable to use for who knew how long (turns out almost a year), so we gave him a low end laptop that has been a lifeline to him.
But now the brace is off, he is allowed to ride (but not fall), and he is so excited. We have yet another trip to Ohio next month (this time Toledo, so we have a hotel, rental car, and food to manage), so buying a bike isn't on the list. So we talk about maybe later this summer, and we head home.
In the car, we are talking about biking and the fact that Andrew wants a mountain bike too, and Will thinks it's so cool to ride trails with his brother. He kinda sighed and said that he knew it would be a while before he could do that 'cause he was so weak.
The conversation moves to the impending trip and the fact that we may be able to utilize a bed and breakfast that has a full kitchen, which would help with all of the IV fluid that needs refrigeration and we could cook which saves money. But that means driving to Akron for one of the appointments. He said that he has been to Charlottesville, about the same distance, and he handled it fine.
That was the trip where he had a virus, totally crashed, and was in the hospital the next day for five days. He said he feels like he may be better than he was in October, and I'm shocked. The child went from two IV's a week of normal saline (basically salt water), to four or five IV's a week that have not only salt, but sugar, and now we are adding in Levocarnitine (helps the body make energy), and he's not exactly holding between IV's and definitely not holding if he is active at all.
He so wants to be better, but he isn't. He wants to be a normal kid. But he isn't. I just want to give him a normal life, but I can't. And I'm sitting here crying because he really doesn't understand the severity of the situation and I don't have the heart to tell him...
Wednesday, April 27, 2011
Friday, April 22, 2011
The Not So Good Kind of Tired
A couple of years ago I wrote two articles for a magazine about homeschooling with a chronically ill child. They were written from the heart and explained the challenges that we were currently trying to manage.
Well, here we are two years later, and those challenges certainly have not minimized. If anything, some of them are even more difficult. We have a $10,000 total out of pocked medical expense that was met in February, so the medical bills continue to mount. The travel expenses are often minimized thanks to amazing friends in Cincinnati, but trips to other cities (like Akron and Toledo this coming May) mean hotels and rental cars and food. But as difficult as the financial side seems to feel, the real challenge is the relationships within the family.
Today, Will and I flew home from Cincinnati. It had been a really restful, encouraging trip. Is Will better? No. Is he going to get better? We have no idea, but if he does, it won't be for years. So while Cincinnati did not alleviate medical issues, we were blessed with this huge respite...which made the arrival home all the more challenging which, I realize, seems like an odd statement.
But after experiencing multiple days of peace and tranquility, the disharmony here just screamed at me. Almost every relationship is struggling, and I just seem incapable of knowing how to help any of them. While they fought their way through the day, I found myself more and more wanting to curl up into a tiny ball and hide. Is that gonna help? Obviously not. But how to help evades me. I am exhausted and lost and barely holding on to that fraying rope. Is there hope? Yes. Do I currently see it? Nope. Not the best place to be...
Well, here we are two years later, and those challenges certainly have not minimized. If anything, some of them are even more difficult. We have a $10,000 total out of pocked medical expense that was met in February, so the medical bills continue to mount. The travel expenses are often minimized thanks to amazing friends in Cincinnati, but trips to other cities (like Akron and Toledo this coming May) mean hotels and rental cars and food. But as difficult as the financial side seems to feel, the real challenge is the relationships within the family.
Today, Will and I flew home from Cincinnati. It had been a really restful, encouraging trip. Is Will better? No. Is he going to get better? We have no idea, but if he does, it won't be for years. So while Cincinnati did not alleviate medical issues, we were blessed with this huge respite...which made the arrival home all the more challenging which, I realize, seems like an odd statement.
But after experiencing multiple days of peace and tranquility, the disharmony here just screamed at me. Almost every relationship is struggling, and I just seem incapable of knowing how to help any of them. While they fought their way through the day, I found myself more and more wanting to curl up into a tiny ball and hide. Is that gonna help? Obviously not. But how to help evades me. I am exhausted and lost and barely holding on to that fraying rope. Is there hope? Yes. Do I currently see it? Nope. Not the best place to be...
Monday, April 18, 2011
The Good Kind of Tired
While we have only had two doctor appointments so far since arriving in Cincinnati, I have still had a bit of a crazy schedule. But it's been a good crazy.
Friday Will hung out with his friend, Chris for a few hours, then we saw Dr. Crawford. He was pleased with the progress visible on the CT scan images, so he said Will could come out of the brace...after he gave Will a hard time for not wearing it for the last week. Will smiled sheepishly and Dr. Crawford told him that he could swim recreationally, but not as a sport. Anything with impact, contact, or jarring is not ok so flip turns and diving are not ok. Will is ecstatic. Time to go buy the boy a swimsuit!
Will has been "medical hold" for Make-A-Wish Foundation for the last nine months. Since the brace is off, we can remove that hold and move forward on his wish. I told Katie, our case manager, that I would call her Monday morning and let her know how the appointment went. She is supposed to be restarting the paperwork...
Saturday morning I ran with some friends here who run way faster than I do. It was just a really good run with a good friend as long as I didn't try to talk. Afterward, we went to the church workday. It was rainy and cold and there were 12 cubic yards of mulch to move. We were still in our running clothes, which means I was also wearing a baseball cap since it was raining and praying no one would recognize me. One of the women asked me if I was new or just visiting. I laughed and said, "Both." After talking for a few minutes, she realized who I was...and stated that I look so different. I laughed. You would too if you ran almost five miles, got rained on, and then moved a bunch of mulch. I was very happy to grab a shower and put on warm, dry clothes.
Becky R and I ran a few errands, baked banana bread, and made cookie dough while Will had yet another IV. It was such a great day. I was thoroughly exhausted by the time it was over, but it was a good exhausted. I had spend time with good friends, accomplished something, and even got a great run in.
Today, we went to church, then Will and I headed to the Reds' game. Thursday after Will's CT scan, we dropped into Guest Services at the hospital to see Kim. She saw us, threw her arms up and said, "Unbelievable! We just got Reds tickets for Sunday and I can't imagine anyone whom I would like to give them to more than you!" Will was thrilled, I was thrilled, and so today we got to go. In the sun, it was cool but where we were sitting there was total shade and a steady breeze. It was so cold. The end of the game was a nail biter, and we ended up losing, but it was a great afternoon.
We got back to the Riggs's house just in time for covenant group. Will really needed fluids, so we started yet another IV and then I joined the adults while Will bonded with his computer.
It has been a total whirlwind of a few days, but it has been so good. Will got to hang out with a friend from church with whom he chats online, and he attended a baseball game. He gets to do it all again tomorrow. I have not seen him smile this much in months. He has needed an insane amount of fluids, IV's almost every day, but it has been so encouraging to him. I am totally amazed at how well we are cared for here in Cinci. It is amazing to have a real home away from home...and friends who welcome you back as if you were never gone. How do people manage daily life, much less crisis, without the body of Christ?
Friday Will hung out with his friend, Chris for a few hours, then we saw Dr. Crawford. He was pleased with the progress visible on the CT scan images, so he said Will could come out of the brace...after he gave Will a hard time for not wearing it for the last week. Will smiled sheepishly and Dr. Crawford told him that he could swim recreationally, but not as a sport. Anything with impact, contact, or jarring is not ok so flip turns and diving are not ok. Will is ecstatic. Time to go buy the boy a swimsuit!
Will has been "medical hold" for Make-A-Wish Foundation for the last nine months. Since the brace is off, we can remove that hold and move forward on his wish. I told Katie, our case manager, that I would call her Monday morning and let her know how the appointment went. She is supposed to be restarting the paperwork...
Saturday morning I ran with some friends here who run way faster than I do. It was just a really good run with a good friend as long as I didn't try to talk. Afterward, we went to the church workday. It was rainy and cold and there were 12 cubic yards of mulch to move. We were still in our running clothes, which means I was also wearing a baseball cap since it was raining and praying no one would recognize me. One of the women asked me if I was new or just visiting. I laughed and said, "Both." After talking for a few minutes, she realized who I was...and stated that I look so different. I laughed. You would too if you ran almost five miles, got rained on, and then moved a bunch of mulch. I was very happy to grab a shower and put on warm, dry clothes.
Becky R and I ran a few errands, baked banana bread, and made cookie dough while Will had yet another IV. It was such a great day. I was thoroughly exhausted by the time it was over, but it was a good exhausted. I had spend time with good friends, accomplished something, and even got a great run in.
Today, we went to church, then Will and I headed to the Reds' game. Thursday after Will's CT scan, we dropped into Guest Services at the hospital to see Kim. She saw us, threw her arms up and said, "Unbelievable! We just got Reds tickets for Sunday and I can't imagine anyone whom I would like to give them to more than you!" Will was thrilled, I was thrilled, and so today we got to go. In the sun, it was cool but where we were sitting there was total shade and a steady breeze. It was so cold. The end of the game was a nail biter, and we ended up losing, but it was a great afternoon.
We got back to the Riggs's house just in time for covenant group. Will really needed fluids, so we started yet another IV and then I joined the adults while Will bonded with his computer.
It has been a total whirlwind of a few days, but it has been so good. Will got to hang out with a friend from church with whom he chats online, and he attended a baseball game. He gets to do it all again tomorrow. I have not seen him smile this much in months. He has needed an insane amount of fluids, IV's almost every day, but it has been so encouraging to him. I am totally amazed at how well we are cared for here in Cinci. It is amazing to have a real home away from home...and friends who welcome you back as if you were never gone. How do people manage daily life, much less crisis, without the body of Christ?
Wednesday, April 13, 2011
Here we Go Round the Mulberry Bush...
Well, this mulberry bush is making me dizzy. Seriously.
We had great flights. The first set of pilots was lovely. They were great with my little guys (who went with us this morning to the airport) and gracious with Will. We met Charlie, the second pilot, at Beckley, enjoyed lunch with all of them, then headed to Cinci. Charlie is always fun; he has an amazing sense of humor and just doesn't take life too seriously. For that leg, I got to sit in the right seat and totally enjoyed the flying lesson. For the record...keeping a plane at a steady altitude is not as easy as it seems. We felt like we were on a roller coaster for a few minutes, then I got the hang of it and impressed him with my finesse. It really was amazing...except that my leg fell asleep 'cause I was sitting on it 'cause I am so short I couldn't see over the dash of the plane. Details...details...
When we landed in Beckley, Will complained of his ears hurting. When we landed in Cinci, he was miserable and beginning to fade on me. I love my phone...I opened an app that found an urgent care facility and headed there. They took one look at his med list and said, "He takes all of these???" Um, yeah. Why do you think I carry a book around with me? Then came the list of surgeries...at that point she just walked away from the computer and told me to tell the doctor about it because the computer couldn't handle the information. Lovely. Where am I???
We weren't necessarily in the best section of town, nor was this office creating a sense of well-being, so I was beginning to worry. Silly me. Not only did the doc use "mitochondrial disease" correctly in a sentence, but she willingly gave us pain medication. Mito patients can't take Tylenol and Advil isn't recommended, so he takes Ultram for pain. It is not a narcotic, but it is a prescription. With a double ear infection, I was thinking we might need something tonight.
We headed across the road to a Meijer, a local Walmart-like store for the prescriptions (pain meds and antibiotic) and some groceries. Will is fading fast, so I am getting worried. When he gets mean, the IV moves to the top of the "to-do" list...having him attempt to run me over with the grocery cart wasn't the nicest thing he has ever done...Needless to say, the IV was at the very top of the to-do list.
We made it safely to the Riggs's house. They were, of course, amazingly gracious and had already stocked the fridge and provided snacks for us. Being here is like the eye of the hurricane. Peaceful. Just when you wonder if you can really keep going, the Lord just blesses you with friends who inexplicably love you and want to care for you.
Will is currently on an IV, he is still looking really rough, though, so I definitely am watching him closely. I just hope that he can hold his own with the fluids and won't require further intervention...
I did manage to forget my computer cord, so if there is a lapse in updates, it is because the battery died and I couldn't find one here. Tomorrow, a quest for a charger begins..
We had great flights. The first set of pilots was lovely. They were great with my little guys (who went with us this morning to the airport) and gracious with Will. We met Charlie, the second pilot, at Beckley, enjoyed lunch with all of them, then headed to Cinci. Charlie is always fun; he has an amazing sense of humor and just doesn't take life too seriously. For that leg, I got to sit in the right seat and totally enjoyed the flying lesson. For the record...keeping a plane at a steady altitude is not as easy as it seems. We felt like we were on a roller coaster for a few minutes, then I got the hang of it and impressed him with my finesse. It really was amazing...except that my leg fell asleep 'cause I was sitting on it 'cause I am so short I couldn't see over the dash of the plane. Details...details...
When we landed in Beckley, Will complained of his ears hurting. When we landed in Cinci, he was miserable and beginning to fade on me. I love my phone...I opened an app that found an urgent care facility and headed there. They took one look at his med list and said, "He takes all of these???" Um, yeah. Why do you think I carry a book around with me? Then came the list of surgeries...at that point she just walked away from the computer and told me to tell the doctor about it because the computer couldn't handle the information. Lovely. Where am I???
We weren't necessarily in the best section of town, nor was this office creating a sense of well-being, so I was beginning to worry. Silly me. Not only did the doc use "mitochondrial disease" correctly in a sentence, but she willingly gave us pain medication. Mito patients can't take Tylenol and Advil isn't recommended, so he takes Ultram for pain. It is not a narcotic, but it is a prescription. With a double ear infection, I was thinking we might need something tonight.
We headed across the road to a Meijer, a local Walmart-like store for the prescriptions (pain meds and antibiotic) and some groceries. Will is fading fast, so I am getting worried. When he gets mean, the IV moves to the top of the "to-do" list...having him attempt to run me over with the grocery cart wasn't the nicest thing he has ever done...Needless to say, the IV was at the very top of the to-do list.
We made it safely to the Riggs's house. They were, of course, amazingly gracious and had already stocked the fridge and provided snacks for us. Being here is like the eye of the hurricane. Peaceful. Just when you wonder if you can really keep going, the Lord just blesses you with friends who inexplicably love you and want to care for you.
Will is currently on an IV, he is still looking really rough, though, so I definitely am watching him closely. I just hope that he can hold his own with the fluids and won't require further intervention...
I did manage to forget my computer cord, so if there is a lapse in updates, it is because the battery died and I couldn't find one here. Tomorrow, a quest for a charger begins..
Monday, April 11, 2011
Upcoming Travel Schedule
As I am trying to conquer laundry so I can ship our clothes and school books ahead to Ohio, trying to get meals prepared for my family here, and answering the emails coming in regarding the impending trip, I'm a bit swamped. So, here's the short version...
Will and I have an Angel Flight Wednesday morning we hope. The weather is beginning to look a little iffy, but for now, the first flight is scheduled for 9 am. We should arrive in Beckley, WVA, where Charlie will pick us up for the second leg. That puts us in Cincinnati around lunch time.
Thursday Will has a CT scan at 4. Friday afternoon we see Dr. Crawford, the orthopedic, who will hopefully remove the encumbrance around Will's neck (his soft collar). We have several days off, then Wednesday we see the plastic surgeon who will reevaluate whether any further reconstruction is required for Will's palate.
That has us flying home on Thursday, April 21st.
If Will is separated from his soft collar, then he will come off of medical hold for Make-A-Wish, and those plans will once again move forward.
If the flight either way is canceled, I'm guessing I'll be driving a rental car to Ohio or home. Unfortunately, it appears that one of our cars is struggling with its transmission, the Jeep is unreliable, the van would cost a fortune to drive, and Billy needs it here.
Once we get settled in Ohio, I'll provide better information. Last week's 500 medical miles and this week's need to prepare for the trip is taking a toll...
Will and I have an Angel Flight Wednesday morning we hope. The weather is beginning to look a little iffy, but for now, the first flight is scheduled for 9 am. We should arrive in Beckley, WVA, where Charlie will pick us up for the second leg. That puts us in Cincinnati around lunch time.
Thursday Will has a CT scan at 4. Friday afternoon we see Dr. Crawford, the orthopedic, who will hopefully remove the encumbrance around Will's neck (his soft collar). We have several days off, then Wednesday we see the plastic surgeon who will reevaluate whether any further reconstruction is required for Will's palate.
That has us flying home on Thursday, April 21st.
If Will is separated from his soft collar, then he will come off of medical hold for Make-A-Wish, and those plans will once again move forward.
If the flight either way is canceled, I'm guessing I'll be driving a rental car to Ohio or home. Unfortunately, it appears that one of our cars is struggling with its transmission, the Jeep is unreliable, the van would cost a fortune to drive, and Billy needs it here.
Once we get settled in Ohio, I'll provide better information. Last week's 500 medical miles and this week's need to prepare for the trip is taking a toll...
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