It’s been a hell of a week

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
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
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!
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
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 should be straight so even the bumps suggest clotting/damage
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
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
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…

15 thoughts on “It’s been a hell of a week

  1. As a parent I remember that feeling of helplessnss over the years of rasing two boys but nothing like this. I’d like to be able to hug Isaac and you all and make it all better but know that won’t work so I’ll pray for you all let God take care of things.

  2. Good golly, Warren and Emily!! What a terrifying time for all of you!! Prayers for a quicker healing than you are expecting and a return to feeling “normal” again.
    Stupid question: Can an IVC be something they can transplant (so to speak)? Artificial, bovine, swine, a piece from another place in his body??
    Blood thinners are such a tricky matter to deal with. Is he receiving Coumadin or Lovenox? Eric was on Lovenox after his hip break/surgery. Coumadin and weekly blood labs were just more than he could deal with. Lovenox, while ouchy, didn’t pose as great a risk and was easier to control.

  3. They told us the IVC does not transplant well right now and was not worth the risk in their estimation. He is currently on lovenox and coumadin both. The goal is to transition him to coumadin only once it levels out.

  4. I am stunned. And sorry. Please know that my heart and thoughts are deeply touched by what you all are experiencing, and I keep you in my prayers. And frankly, I let out a good cuss for the lousiness of this! I hope each of you is finding the support you need. (((hugs)))

  5. Chip and Emily, We hold your family in our hearts as the journey continues. Your folks shared this link of your ordeal to help us understand what’s occurred and treatment plan. We enjoyed spending the day recently with your folks and Isaac and Abigail when in PA. We are praying that recovery to the way he was just a couple of weeks ago will be swift and long lasting. Prayers and God’s continued blessings. Ruth and Jim Peterson

  6. What a blessing that this was discovered before anything unspeakable happened. I’ll be keeping you all in my prayers.

  7. Oh man, Warren…speechless here, and so glad the problem has been identified. We will be praying EVERY day, and thank you so much for the updates. We feel your worry and won’t stop asking God for help for Isaac, and really good progress. Sending HUGE hugs to you all!!

    Robbyn and Jack

  8. Really big sigh Warren. My heart is heavy for you all down there. But I am SO thankful that the Lord cleared the way to a place for Isaac to receive the care he required.

    Praying for restoration, relief from pain and patience for The Patient,that is a hard age to keep a young man down.

    Praying for wisdom for his doctors, and compassion from all of his caregivers, that God would endear Isaac to them all so they would take care of him like a member of their own family.

    Praying for you and Emily, this is a difficult road for a parent to travel. It’s hard to watch your children suffer and not be able to fix it. Praying for patience and peace in the midst of an uncertain time.

    Jeremiah 32:27 “I am the LORD, the God of all mankind. Is anything too hard for me?

  9. How is Isaac today, now that he’s eaten and slept in his own house? My niece (a nurse) says to expect some PTSD on the part of all/some of your immediate family members. Hopefully, things normalize for all of you soon.

  10. Thank you everyone for your thoughts and prayers! It means a lot to us all that you friends are thinking of Isaac. He is still in a good bit of pain but that is leveling off some I think. He is still sleeping a lot and I wonder if it is a stress response on his part. He is just sort of checked out right now. The swelling is pretty much gone now but he isn’t walking at all. He rides a wheelchair some and crutches some but mostly prefers to just lay down. We are working on getting he coumadin figured out…his levels are too high now so we have to back off some to get them right. I can tell this is going to be fun getting the dose right. Anyhow, we are all happier at home for sure and I think that helps. If nothing else, we have a larger movie library from which to choose!

  11. Oh how terrifying. I’m so sorry Isaac is going through so much pain and there isn’t an easy button for the situation. I hope he starts feeling better soon and is up and running again in the near future.

  12. Keeping up with ya’ll through your blog & Bud. Praying daily for you all. You all are on our hearts and minds. Please give Isaac our love as well as Emily and Abigail. So thankful for the medical community as well. Will ya’ll return to Nationwide?

  13. Oh my gosh Warren! I just seen this! That just gave me flash backs from when my father in law had a heart attack and had to be transported to a hospital in Kentucky. It too was storming so he couldn’t be air lifted either. So I can relate to the long drive and the being in another state’s hospital not knowing what to do. I so hate it that he is going through this. I will keep him in my prayers and you and your wife too! I didn’t know that there is a condition that causes you to have blood clots.

  14. i know how you feel warren, you just wish it was you instead of your child going through this.he will prevail and be stronger for it.will keep your family in our prayers

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