Thank you so much friends, for sharing with us your thoughts, prayers and well-wishes. Isaac has come a long way since last week and we are all much relieved with where we are headed. We were discharged last Sunday from Nationwide Children’s Hospital in Columbus, OH. It was a long ride home as Isaac was still in a lot of pain and we were pretty nervous about what we were in store for.
Getting better
We saw the local hematologist on Tuesday and he upped Isaac’s warafrin and continued his lovenox shots. Lovenox shots hurt like crazy and really suck. Isaac’s mood was in pretty bad shape and his pain continued for several days. One day, I can’t remember which, a lot of his pain just went away and he was able to move about a lot better. Each day we see improvement and he can walk short distances and almost looks normal in his gait.
We have had a few more blood draws and warfarin adjustments and things appear to be leveled out. That means no more lovenox too! That fact alone changed Isaac’s mood dramatically. Over this weekend, his appetite also returned. A co-worker of mine bought Isaac a multi-pack of candy bars and he has been plowing into that pretty hard. I am not sure how many healthy calories he has ingested but we have been pretty flexible in just about everything anyhow.
We have more blood draws, probably two a week for a few weeks and then we just wait and see what happens. Isaac has gotten into a much better place emotionally which means that Emily and I have also. His pain persists but it is so much better than it was so I think he is tolerating it pretty well. We don’t yet know how school will work and whether he will be able to sit/walk all day without support so we may have to deal with crutches. We have a few weeks before we worry about that anyhow.
I don’t know whether I am conveying it well, but we are so much better off than we were last week and Isaac feels a lot closer to normal. So friends, please keep thinking of Isaac and I’ll give updates as we get them!
In the last post, I mentioned that we had a family emergency that has taken us away from normal doings the last week or so. Here’s the story: a few weeks ago, Isaac mentioned a pain in his hip that sounded very much like a muscle pull. He’s an active kid so it seemed reasonable to us and to him. He did the usual heat and ice and rest which seemed to alleviate the pain somewhat. Like most kids, he doesn’t ever really rest so we figured that it was going to take awhile to get over the problem. That seemed okay until last Tuesday night when we noticed that his pain was magnified dramatically and his entire leg began to swell. By morning, his leg had changed color and he couldn’t walk. Isaac is not a kid who ever cries or skips a chance to eat so we knew there was a problem when both happened. Wednesday morning, Emily took him to the emergency room. In Charleston, kids go to CAMC Women’s and Children’s Hospital. They were really great and took us right in.
In the emergency room
My family has a fun little disorder called Factor V Leiden. Basically, it is a disorder that occurs in around 5% of people and the end result is that carriers are significantly more likely to develop blood clots. You may have heard of problems related to blood clots including pulmonary embolism, deep vein thrombosis, and “holy-crap-that-hurts-more-than-eating-glass”. My Dad and I both have tested positive for the issue so more than likely, Isaac has the issue too.
Nationwide Children’s Hospital’s Mobile ICU
So, at the hospital, we related our history and experience with clots and they, of course, suspected a clot as well. Unfortunately, they did not have expertise and/or equipment at CAMC W&C Hospital to do a proper clot-identifying ultrasound. Isaac and I rode in an ambulance from W&C to CAMC Memorial Hospital. The rad tech scanned his leg and then scanned more and more and finally, up into his belly. I knew we were into something big when she did that. The ambulance took us back to Women’s and Children’s where they confirmed that Isaac had a clot that ran, roughly, from under his rib cage to his feet.
IV Meds…this was something to watch!
Clots in general can be life threatening and clots of this size are definitely not common. The doctors at W&C Hospital were honest about the gravity of the situation and that they had limited capability to treat all of the potential issues that we could be facing. After a few calls, we settled on a transfer to Nationwide Children’s Hospital in Columbus, OH. The weather was bad so an air lift was not an option. The risk of transport was high and the possibility of a pulmonary embolism was real. Nationwide has a mobile ICU ambulance which is equipped for just about any sort of medical emergency so it was dispatched to Charleston. The crew left OH around 10 pm Wednesday and we were on board the ambulance and back on the road for Columbus at 1:30 am Thursday morning. Emily rode with Isaac and I drove separately. We arrived around 4:30 am where we were immediately admitted.
Nationwide Children’s Hospital
I didn’t realize, but in pediatrics, hematology and oncology go together so we were given a room on the “hem-onc” ward. Nationwide is set up brilliantly to make family and patients comfortable and together. Anyhow, we were taken to the interventional radiology department where surgeons placed a catheter into Isaac’s vein in his leg, directly into the clot. Through the “pipe”, they delivered tPA, the clot busting drug given to stroke patients. The idea was to break up the clot, give Isaac blood thinners and get him back to being well. In normal cases, that’s pretty much how it would go. Of course, we didn’t fall into that category.
The vein in his left leg…it should be straight so even the bumps suggest clotting/damage
The surgeons discovered that Isaac doesn’t have an inferior vena cava, the large vein that returns blood from the legs to the heart. Typically, each leg has a large vein that joins somewhere around the belly button creating the inferior vena cava. It is likely that he once had one, but sometime, probably during the trauma that was his birth, it was blocked and/or died. Fortunately, he survived that episode and his body was able to form collateral veins which returned blood back to the heart in spite of the missing IVC. Those collateral veins, of course, are not the way one is supposed to be plumbed so, while effective, they are not as good as a healthy IVC at returning blood to the heart. Couple the Factor V and the missing IVC and we have a serious issue waiting to happen. No one could believe that Isaac has not had any issues prior to this one.
The vein in his right leg. This should be a straight shot. Instead he has many collateral veins…and a many clots
So, the clot buster usually works similar to a small rupture in a dam. Once a hole is poked in a dam, the rushing water opens the hole wider and wider. In a normal anatomy, the tPA works the same way. However, without an IVC, there is no rushing water to open the pipes. As soon as the surgeons removed the catheter, the clot simply reformed. Surgically there is no real solution, at least not anything worth the risk. The only course, then, is to manage the clotting and allow the body to heal itself by creating more collateral veins and isolating the clotted area. We are now on that path. Isaac is on blood thinners and pain meds but still cannot walk by himself. In time, the doctors believe that his body will heal to some level of normal but this is a life changing event for him. Not only has more damage been done to his veins that were already weakened by the missing IVC, but now he is also on blood thinners. He should be able to walk normally again but running will depend on how the healing goes. He is currently nauseous from pain and unable to manage much of anything independently. We have expectations that the pain will subside in a few weeks so we just need to let time pass and his body heal.
Another view of the clots/veins as the inject the dye
I have only the greatest respect and appreciation for the doctors and staff, both in Charleston and at Nationwide Children’s. They were fantastic and so kind and helpful. It’s a weird thing though, as a parent, when you take your child to a hospital and you get news that not much can be done to just fix the problem. We are so used to going to the doctor with a sore throat or even a broken arm. A few meds and a stitch or two and things are back to normal and everything is ok. When that doesn’t happen, it is the weirdest sense of helplessness, and a feeling that I haven’t experienced since Isaac’s birth. It’s a hard place to be in where your tough son is crying in pain and there isn’t a lot to be done. We feel good about where we are headed but the road there is a tough and dangerous one. As I consider the last week though, I saw all around me children with pediatric cancers on the hem-onc ward. Though this is still a scary time for us all, I still feel very fortunate when I consider what other families are going though. Hug your children tight…
Something occurred to me this weekend. In a way, I am a story teller, telling the day-to-day nonsense that goes on in our lives here on this blog. I know that’s pretty much what blogging is all about and it’s pretty cool how I get involved in other people’s lives and how (I suppose) some of you, dear friends, become involved in our lives. I enjoy telling our stories, for, like sands through an hourglass, these are the days of our lives.
Anyhow, this realization came to me while at an actual concert put on by a real, professional story teller, Lorna MacDonald Czarnota. My friend Granny Sue held a house concert where both she and Ms. Czarnota told several diverse stories and sang ballads. I don’t know if you have ever heard a professional story teller, but if you ever get a chance, go and listen.
Lorna MacDonald Czarnota
Granny Sue is our neighbor so I knew her house. She has a fantastic house in the woods surrounded by trees and birds and flowers. Her home is incredible, filled with antiques and mountain heritage and beautiful glassware and books. She invited us to walk about her house and drink sassafras tea and enjoy a variety of snacks. It was a beautiful arrangement and truly an awesome experience. It’s what story telling was at its beginning…friends and neighbors getting together to tell stories and enjoy each other’s company.
Abigail and I had a great time and she re-told the stories we heard the whole way home. I am not sure I am really much of a story teller, but I am delighted that Abigail had so much fun listening and re-telling stories. I hope she will learn some mountain stories and make up some of her own. However she wants to communicate, the wonderful imagination that will be fed from these mountains makes me happy!
In addition to licking Abe Lincoln’s leg, we did a few other things on our recent Cincinnati trip. Since the kids were less old than they are today, we have always enjoyed visiting public aquariums. It just so happens that Ohio has a pretty cool aquarium. It’s in Kentucky, but Ohio’s aquarium is pretty awesome! I am always happy that the kids seem to enjoy wandering around aquariums. We often see repeating species but it never grows old. I guess it is a testimony to how incredible nature is. I always stand amazed at the variety of creatures that exist and it makes me sad when I hear how so much of the diversity that exists is in jeopardy due to global climate change, habitat destruction or other abuses of nature.
Newport Aquarium
Anyhow, we very much enjoyed touring the Newport aquarium and spent several hours enjoying all there was to see. We also spent a bunch of time at the Contemporary Arts Center. We had a great time touring the exhibits and what made it especially cool is that we got to interact with the art pieces on two entire floors in the ON! Handcrafted Digital Playgrounds exhibit! When we walked in, I didn’t realize that the place was set up for kids but it couldn’t have been more perfect. Of course, most art is regular museums is hands-off, but the kids and I both enjoyed playing Smash Pong (Ping pong on an artsy table where extreme hitting is encouraged), flying paper airplanes and rocking-and-rolling a patchwork quilt camper at the CAC.
At the Contemporary Arts Center
I think the place that was the most powerful during the trip was the National Underground Railroad Freedom Center. I am not sure why it sort of touched a nerve with all of us, but seeing the “slave pen” when you enter the building spoke to us immediately. It’s a simple display but when we walked into the wooden cabin, we all stood with our mouths open, not saying a word. Seventy or so people were warehoused in a a room not much larger than a typical school classroom. They were forced to live in terror, filth and shock until they were sold.
National Underground Railroad Freedom Center
Most displays within the center were simple and straightforward but I think that made it easier to understand the horror that faced slaves each and every day. It seems so simple to see how wrong it is to take someone’s freedom and civil rights. We learned so much about the economics of slavery, the politics of bondage and the bravery of people who worked to protect others. I understand the economics of slavery I guess, but for the life of me, I cannot imagine how people can be so cruel to other people. I cannot imagine treating animals as badly as slaves were/are treated, let along talking, thinking people!? Both the kids and I continued onto the discussion of modern slavery and we were shocked at how extensive modern slavery is around the world and even here in the United States. You know, it is one thing to read about what people did a long time ago…it’s easy to write off as how things were when people didn’t know any better, but now…how can people still enslave other people? I don’t understand it and am pleased that the kids were equally shocked and disturbed.
Despite the tone of this writing, these places were each pretty incredible in their own way and I was pleased to visit and learn something in each place. I suppose it is fairly uncommon when you can experience powerful imagery with your kids and even more powerful when it changes how you see the world!
Abigail and I went to the cabin this weekend to do a little work on the place. We started out by planting onions. I like onions so we started with 60 sets. Abigail loves to get dirty and Emily hates it when she does, so it was a perfect opportunity since it was just the two of us. I emptied a few new bags of soil and a bag of manure (yeah, I bought it…I hope some neighbors will help me out with some next time around) into a raised bed we made. Abigail helped me space them out and we got as much dirt as we could under our nails.
After we licked our fingers clean, Abigail wanted to take a walk into the woods. It was such a beautiful day, how could I refuse a walk in the woods? We started down a path we hadn’t walked before and found a really great log down on the ground for sitting. We decided to sit a spell. It took a few minutes, but after a bit, Abigail stopped rustling around and it got really quiet. She commented how quiet it was in the woods. It was nice…she turned back to the woods and just sat and stared over the holler without another sound. I suppose we sat like that for 10 minutes or so. Eventually, we got up and spotted a deer trail off to one side and decided to follow it in to the woods.
We stopped again when Abigail spotted a hole in the ground. It was right where the deer trail went so it was easy to find. We stood still for a second and heard running water. There wasn’t a stream to speak of, but we heard running water down in the hole I suppose we discovered a spring though we never saw it come out anywhere. It didn’t matter…we had already cleaned our fingernails anyhow!
We continued on and spotted a small standing pool of water and another spring and an old bleached out turtle shell. We watched a pileated woodpecker for a few minutes and sat a few more spells on a couple of rocks. We saw some really cool trees that looked like birch trees but they were a a lot larger than any birch tree I have ever seen. We talked and picked out our favorite lichens. I must have brushed up against something on our walk as I now have a rash over my entire body. It’s just the price one pays I suppose. It was well worth it to have this great opportunity to spend some time with my daughter when she told me she wanted to go to the woods. It just doesn’t get any better!
My Grandpa was a great story teller and story maker. I have so many thoughts and memories but a few are particularly funny to me…
Me With Grandpa
At the funeral, the preacher told a story about the time he and my Grandpa were preparing for a meeting at the church. A bat flew from the belfry and into the meeting area. Both men grabbed brooms to swat the bat from the air. One of them finally got it and the preacher was about to set the bat under-foot. Grandpa told the preacher to wait a second as he went to gather a pair of gloves. His plan was to set the bat free outside rather than mash an innocent creature. He held the bat up and showed the preacher his big wings and cute little face. The preacher only wanted him gone so Grandpa took him out and returned a few minutes later. When the preacher asked Grandpa what he had done, he replied that he had released the bat…down the street in front of the Presbyterian church!
Another time, there was a neighbor how had a rooster that crowed every morning (and all day too as roosters tend to do) and drove everyone mad. When that neighbor moved, everyone was delighted with the possibility that they may be able to sleep in a bit. Unbeknownst to the remaining neighbors, Grandpa had recorded the rooster and had a speaker set up within a few days. He resumed the morning serenade for awhile to the delight of…only him!
My Grandpa always had a garden in which he spent a great deal of time. Groundhogs invaded one year so Grandpa strung a live 120v line around the perimeter and electrocuted a groundhog or two. Thinking he had cleared the area of the offending beasts, he declared himself the victor. Paying back for the rooster, the neighbors stuffed a groundhog and placed him in the middle of the garden. Grandpa retrieved his .22 rifle and shot the groundhog thinking he would solve the problem once and for all. The groundhog statue remained strong for the next several shots. I think Grandpa probably had his shooting confidence shaken with that episode. He finally figured it out and no doubt, payed everyone back.
One of the best stories is how he tamed a chipmunk…told here.
There are tons more stories but I think one of my favorite lines relates to that time in life when my brother and I were learning to cuss. Thinking that we would show-off or try to impress Grandpa, he shared our new-found vocabulary. He calmly replied that he was impressed but that those were garage words and could only be used there. That wasn’t quite the reaction we were expecting I am sure but it put us in our places!
The Family
It’s hard to summarize all of the funny stories in a meaningful way and you may not be as amused by them as I am. Maybe it would help to drink a cup of Sanka before reading. Grandpa drank Sanka every day and I am sure it ran through his veins. Funny how even that word, Sanka, will always mean Grandpa to me.
Last Saturday, my grandpa passed away. He was 98 years old and a true gem. I am posting his obit here but will likely write some more over the coming days. His funeral was Wednesday and, as much as I miss him, I was delighted to hear stories people told about my grandpa. He was a character and a great man.
Homer Glenn Wise, 98, of Tionesta, died Saturday, Feb. 16, 2013, at Oakwood Heights (formerly the Presbyterian Home), Oil City. He was born March 25, 1914 in Clarion, son of the late LaVern B. and Edith (Hoover) Wise. On April 3, 1935 he married Florence B. (Gardner) Wise in Pittsburgh. His loving wife died on March 21, 2003, after nearly 68 years of marriage. Glenn and his wife owned and operated Wise Sunoco of Tionesta (now Greathouse Body Shop) until 1959. He and his wife also ran a concession stand at the Tionesta Dam along with Wise Boat Livery where he sold boats, motors, chainsaws and accessories. He was a foreman for 20 years at the Evenflo-Crator Manufacturing Plant in Tionesta retiring in 1978. He then went to work for the Forest Hardware also of Tionesta. He was twice Past Master of Olive Temple Lodge #557 Free and Accepted Masons of Tionesta. He was also a member of the Coudersport Consistory and Scottish Rite. He was one of the founding members of the Tionesta Volunteer Fire Co., and was a search and rescue scuba diver. Glenn and his wife were devoted members of the Tionesta United Methodist Church where he held many positions. Surviving are his daughter, Janice Patterson and her husband, Fred, of Tionesta; four grandchildren; five great-grandchildren; three great-great-grandchildren; and several nieces and nephews.
In addition to his parents and wife, Glenn was preceded in death by a daughter, Betty Mellon in 1992; a grandson, Jonathan Patterson in infancy; four brothers, Mervin, Hobart, Elmer and Stanley Wise; and five sisters, LeVera Reynolds, Ethel Wolfe, Grace Startzel, Blanche Wise and Doris Cooper. Friends will be received from 2 to 4 and 6 to 8 p.m. today at Norman J. Wimer Funeral Home of Tionesta. A funeral service will be conducted on at 11 a.m. Tuesday at the Tionesta United Methodist Church with the Rev. J. Mark Hurst, pastor of the church, and the Rev. Bruce K. Merritt of the Nixon United Methodist Church of Butler, PA., co-officiating. Burial will occur at Mt. Collins Cemetery, Tionesta.
We have been married for 18 years. I don’t want to say we are post-romance but things are definitely different than they used to be. The last few years, I have gotten Emily some interesting gifts. I guess I just figure that we ought to get practical if we are going to be forced into consumerism. In recent years, I have gotten Emily a muffin pan, a vacuum and a frying pan. We needed each of those things so I naturally figured that there was no better way to show how much I cared than to give something we need.
For some reason, Emily doesn’t see it that way. Anyhow, this year I decided to express my affection in a different way…Emily loves ice cream cakes from Baskin Robbins (and nowhere else) so I got her a cake all for herself. We also lost our local source of Smucker’s apple jelly. There is no apple jelly like Smucker’s so I ordered a six-pack online and had it shipped. Here’s where I get extra credit…I ordered both gifts before Valentine’s day! Anyhow, I think I hit it on the head this year. What do you think?
Emily and the kids are off today because of the snow and the cold. It was 11 outside this morning and the roads were a bit of a mess so it was the right thing for the county to call off classes today. I just wish they hadn’t called at 4:35 am. We are very lucky (I think) that the county uses a robocaller to alert teachers and parents to closures, announcements, etc. We just need to work on the clock…
When I was a kid, we had to wait for the tv station to scroll our county across the screen. The closest station was 100 miles or so away. I am not sure it mattered but our little rural area was not terribly important to anyone else. Honestly, they never cancelled or delayed anyhow so there really wasn’t much to watch for anyhow. We just went to school every day. More than once I remember sitting on the bus waiting for a plow truck to come so we could follow it down the hill and get to school. I also remember one time when the bus tried to make it up the hill to the school. As the bus started spinning and sliding (even with chains on), the driver stopped it and we had to walk the rest of the way in the snow (we weren’t barefoot but it was up hill!)
I don’t want to go on about how easy kids have it nowadays, but it was just different. I am sort of jealous though! Anyhow, I am sure that the family is enjoying sleeping in while I slave away at the office! Snow days are special days in my book and I truly hope the kids enjoy a little extra time to relax. Heck, by tomorrow it may be 70 again and we will be outside in shorts (if only we were so lucky)…
Just a few days ago, Isaac crossed over into teen-hood. Some folks dread the teen transition, but for us, we see Isaac becoming much more enjoyable. The boy was a bit wild when he was young, but he has settled down into an awesome kid! We give Isaac some room and let him be around us when he wants and be alone when he wants. I don’t know if we are just fortunate or if other folks try to push their growing kid into something they are not. Whichever way it goes, I am so thrilled that Isaac is growing into a pretty great young adult.
The birthday boy got all dressed up!It must be a party!
Isaac was born under duress. You can read more about that here. When he was born, he was 19 inches. In a mere 13 years, he has grown to 5’8″. That’s is just a little shorter than I am. He wears a size 14 shoe. That’s bigger than what I wear. I am not sure when he will grow into his feet, but I think he is on a pretty wild path!
Lucy the house dog was not impressed
I don’t know what is ahead of us, but I know that I am so proud of both kids and love them more than anything. I love being able to watch them grow into real people adults and to be a part of such wonderful lives!
