So, it’s been a rough go around our place lately. As you may know, Isaac has had a significant issue with a blood clot in his leg. It seemed like that was enough to call it a summer, but just last night, Abigail broke at least one wrist and maybe both.
We call her Splint Eastwood
We were at the local high school walking around the track with Isaac working on building a little endurance in his legs as he prepares for school to start in 3 weeks. Abigail took her scooter to ride as Emily and I walked with Isaac. She was scooting along when all of a sudden, she just sort of toppled over. It turns out, somehow, on a flat paved track, that she rode off the surface into the grass which caused her to fall. We always insist on helmets but it’s a scooter on a flat surface…we didn’t think wrist guards would be a big deal…WRONG!
Her fall was seemingly gentle so we debated a bit on whether to take her to get x-rays, but when we got home, she couldn’t move her wrists and her hands were trembling. Emily took her to an urgent care place where they x-rayed both wrists. One was clearly broken, the other was not clear. Sometime today or tomorrow, they will go to an orthopedic doc and find out for sure. So, the debate is, “one cast or two?”
She’s in pretty good spirits so the pain isn’t too bad. She’s just trying to figure out the logistics of having both arms splinted right now…pretty funny really. Anyhow, I figure, the dang devil scooter will take a ride over the hill into the weeds as soon as she is able to throw again. Wear your helmets AND your wrist guards kids!
Several months ago we bought tickets for us and several in our family to travel to Cleveland, OH to see the Lion King, the Disney musical that plays on Broadway. Most people have heard about the production and I knew it would be cool, but it was beyond cool! The design and costuming and everything were just amazing! Of course, the production company frowns on pics so you will have to do your own googling (and you should) if you haven’t seen the costuming and sets. We were worried about traveling with Isaac but decided to give it a try and see how we did. By the smiles, I think you will agree that things are going pretty well!
At the Lion King in Cleveland, OH
It was a fun trip in addition to the musical itself. Emily’s folks road in our car and all 6 of us fit very well. We have an SUV which hauled us and our stuff comfortably. Ohio is flat so gas mileage worked out well with all of us taking one car. We stopped several times to let Isaac get out and stretch his legs often. My Mom and cousin met us there so it was a big family affair. Abigail went back to PA with my side of the family for the week. The rest of us stuck around to visit with Emily’s cousin who is a doctor in Cleveland. We had a nice time chatting with him and getting the scoop on Cleveland. It was a pretty fun time just goofing around in the hotel and reading, talking, doing nothing really.
Street performers
I don’t have much nice to say about Cleveland in general, but their theater district is pretty nice and we had great weather. That being said, I am glad that the city is a couple hundred miles away…just to be sure. As I have found several times recently, being among other people reminds me of how thankful to have the life I have…enough said.
Anyhow, if you have not seen the Lion King, it is a great show and worth your time to go and see. It’s family friendly and really pretty amazing! Timone and Pumba do not disappoint!
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…
We ripped down all of the walls from Abigail’s room and loaded it into boxes. We just got “medium” boxes from a store and they weighed, when full, around 80 pounds each. Emily and I hauled them down the steps to the trailer. One day last week, I hitched up the trailer and headed to the dump. I have never been to a landfill before. When we lived in TN, our county had a really cool place we called the dump. In actuality, it was a bunch of big dumpsters where the county would accept trash, metal, plastics, etc…pretty much everything. It was open every day and was super convenient. It was a dump I guess but not a true landfill.
So, here in WV, my county does not have a TN style dump so I had to take the boxes to our proper landfill. I don’t know if you have ever taken stuff to a landfill, but it was an adventure! I pulled onto scales where the nice lady took down my information and my weight. She then told me to “follow the dust and stay out of the way of the guy on the loader.” I get that it is a large piece of equipment, but it made me wonder if the guy on the loader was stable.
Anyhow, I followed the dust awhile and sure enough, I could see a huge loader driving back and forth over a huge pile of junk and trash. Truck after truck was lined up. They whipped around and backed up to the pile, somehow missing the guy on the loader. Some unloaded stuff by hand, while others in the big trucks dumped and ran. Not having a dump trailer, I had to back into my spot and unload by hand. As you might guess, the smell was…bad…very bad. Bits of stuff were blowing around. Crows were picking over who-knows-what. It was dusty and I always had to keep an eye out for the guy on the loader.
Watch out! It’s the loader!
Once I had it all unloaded, I had to drive my way back out through the huge ruts and blowing junk. Getting out was harder as there was no dust to follow. There was still plenty of dust but it wasn’t the following kind of dust. Anyhow, I finally made it back out and drove back up onto the scales. My load ended up weighing 820 pounds which cost me around $16. That seemed like a pretty good deal. I had another same-sized load I took another day so my house certainly groaned with relief. One little room shed 1600 or so pounds of weight. I guess the guy on the loader was probably happy to see more junk to push around too, so all in all, it was a pretty cool experience. My nose will never be the same and I permanently coated my lungs with pulverized nasty blowing around the landfill. Who knows, maybe the guy on the loader was trying to find his way out and was just following the wrong dust!
When we were in college, we were pretty poor. Neither Emily nor I had a car and most of our friends were car-less as well…at least until the end. Anyhow, we didn’t really get a good chance to do road trips, that special rite of passage among college kids. There were a few occasions when we could borrow a car but mostly we just hung around campus. We had a really cool group of friends so I don’t think I ever missed road tripping. We just had too much fun where we were.
Anyhow, Emily and I are going on a road trip tomorrow. I can’t tell you why yet because that part is top secret. It’s probably a lot more exciting for me than for anyone else, but I like the mystery of it. I can tell you we are road tripping to KY though…to a place called Pleasureville. Honest, it’s all on the up and up. Pleasureville is a town, not a business or anything like that..I swear! I am buying a huge piece of cast iron from a guy in Pleasureville so I can do an old-timey thing this summer/fall. Oh boy! See, I can tell the suspense is killing you!
A hint – from the Library of Congress
Anyhow, we got a new spare tire for the trailer and I even dug out a car jack. You see, this piece of cast iron weighs almost 1200 pounds so a flat tire would not be trivial. I figure we will stock up on pretzels and soda before we go. The car is loaded with music appropriate for a day-trip. I am so excited to head out tomorrow and goof around with Emily. We will get to relive to college experience we never had! I’ll let you know how things go and if all goes well, I’ll be able to show you pics related to our next big project!
Emily and I finished up digging the footer a while back so that left the best part…mixing concrete! We mixed and poured 184 bags of concrete into the footer ditch. Just to save you the math, 184 bags of concrete is a metric crap-ton! When you pour concrete for just about any purpose, you need to add steel rebar which gives the concrete something to which to bind. You can buy nice pre-cut pieces or you can buy large pieces for about a quarter the price and cut it yourself.
Not a fingernail trimmer!
The perfect tool to cut rebar is an angle grinder. I happen to have an angle grinder with a metal cutting blade on it. Running an angle grinder is a bit of an adventure! The same blade that cuts steel with ease and throws sparks like a 4th of July show, spins mere inches from the user’s fingers. Mostly, when the user is not exhausted, it is a simple task to keep separation between fingers and blade. A few weeks ago, I was in a fatigued state and co-mingled my left index finger with a spinning blade. I am incredibly lucky to still have my finger and am even luckier to have only cut a nice gouge in my fingernail.
This is several weeks healed but you can see the potential…On the next to last bag of concrete for the footer, I dropped the bag and my finger got between the bag and the blade in the mixer…it was an 80 lb bag and yes, it hurts even 2 weeks later
I both cussed and bled, for roughly the same amount of time, before I surveyed the area for a first aid kit. We are usually pretty conscientious about keeping first aid supplies on hand, but in our fatigued state, we left home without one. I have always been one to improvise and really, my solution is not terribly new, but I am still proud of my first aid solution…duct tape!
Redneck Band-aid?Almost done laying the block!
I was able to continue on with work for the day but I was much slower and continued to mumble bad things off and on through the day. It was not a lot of fun though and I still have a nice bit of concrete filler in the gouge where my fingernail should be. Friends, I have to tell you, if you feel an urge to trim your fingernails on the work site, DO NOT use an angle grinder. Stick to a metal file or cross-cut pliers or even tin-snips…but not an angle grinder!
West Virginia is a unique place. Lots of folks across the country forget that West Virginia was separated from Virginia in 1863 and that we are, in fact, a separate state. I like to call my state West-by-God-Virginia and the other place either “East Virginia” or “the other Virginia”. I guess folks in every state say that their people are the nicest or the most down-to-Earth of any state. I’d say WV fits that bill too and who am I to say any different. People are good here. I love it here and I see so many of the best things in WV. Like every state though, there is good and bad and folks outside of WV seem only to know about the bad stuff that happens here…we do suffer from some of the worst health issues, we have educational problems and our lots of folks see the world in such a different way than the rest of the country, and not always in a good way. In spite of the problems of WV, there are several shining examples of what is great about WV.
One dork with her eyes closedThree dorks with their eyes closed
We got the opportunity to visit a live recording of Mountain Stage, a popular and well-known broadcast on public radio. Our capitol complex (yes Charleston is the capitol of WV, an independent state!) is pretty amazing. Mountain Stage is recorded in the Capitol theater in the WV Culture Center. Since 1983, Mountain Stage has brought all sorts of music to the people of WV and Sunday night a few weeks ago, the four of us got to be a part of that experience. Our show will be broadcast in December so listen for our applause if you get a chance. We clapped vigorously.
There are all sorts of musical styles at Mountain Stage and some/many seem to have absolutely nothing to do with WV or the mountains but each is unique and a real treat to hear live in a great venue. I don’t always agree with everything that happens in our state and there are bad things for which we are noted, but Mountain Stage is one of those things that is a unique and wonderfully WV thing!
There comes a special time in every little girl’s life when she needs to learn how to run a chainsaw. For Abigail, my 9 year old, that time was Monday. <sniff, sniff> It sort of brings a tear to my eye thinking about how my little girl is growing up. It seems like just yesterday we were learning how to make proper spitballs and here she is cutting trees with a saw.
She needs to lean into it!
I had been putting off this important milestone in Abigail’s life but the recent storms necessitated the removal of at least one of our trees that got pretty torn up. I had promised Abigail I would build her a treehouse and one of the trees is perfect for it.
Emily took Isaac to tae kwon do so it seemed like a perfect opportunity to dig into the project. What makes this chore particularly interesting is that it is 15 feet from my house and half of it hangs over the dining room and the main power line into the house. I think that makes this a perfect tree for Abigail to cut upon.
My raspberries got thrashed by the storm…
I think a little appropriate danger is good. But before you worry too much, we decided to do a lot of initial trimming with an electric chainsaw on the end of a long pole. It’s still a serious chainsaw that makes quick work of wood, but nothing like a gas saw. Anyhow, I guided the saw head while Abigail ran the power trigger. We worked pretty well together as a team. She was worried at first but once she took that special step of cutting her first branch, she really enjoyed running the saw. I guess when it comes time to really cut the main parts of the tree, I will use the gas saw and keep her far away. Some day though, I will have to teach Abigail the special thrill of hanging on a ladder cutting a tree right as the sun is crossing the horizon leaving the cutter to wonder if he is cutting the right branch or the leg of the ladder. Ahhh…growing up…
My old pal Billy Joel finds himself in a NY state of mind but I have to tell you, I couldn’t be happier to be in a NC state of mind! We made it to the beach at Topsail Island yesterday and it couldn’t have come soon enough. There has been much chaos in my world lately so this trip is a long desired, much needed get away.
The distance from the border to the beach is far too far!The beach…At last!
After staying up pretty late reading last night, the kids brought me breakfast in bed this morning…at 6am. It was a great start to a great father’s day celebration. We ate and pretty quickly headed for the beach before it was warm enough for sane people to be in the water. The kids, not being sane of course, jumped right in and didn’t seem the least bit effected by the cold. I stayed under the tent some but mostly played in the surf with the kids. We laid around here and there all afternoon and went out to a really nice meal (before the crowds! I guess we got the early bird specials…oh crap, 40 has changed me!) and then took a walk on the beach. It never did get too warm today by beach standards but any day at the beach beats a great day anywhere else!
I was stupid last weekend and got a sunburn on my back (don’t ask….I told you it was stupid). Of course, here at the beach, we always wear rash guard shirts so we are protected. When I had my shirt off on the porch, my peeling lizard skin grossed Abigail out tremendously. I love grossing her out…and trading jabs with Isaac. He is growing into a great middle school kid. He just doesn’t seem to understand that Abigail will not respond like his buddies do. They are used to trading insults back and forth and trying to out-do each other with “your momma” jokes. Abigail has no tolerance for that! Anyhow, I had a great time messing with the kids and doing my fatherly duty to give them material for therapy when they get older! I love the beach where the rules are few and the junk food is plentiful!
Well friends, a book is calling my name so I will wrap this up. Just know that my mental health is quickly returning to “normal” and that I am in a NC state of mind!
