In Category: ‘Connective Tissue Disorder’

Thankful LT photo Our Story  A Long Ambulance Ride to Cleveland in August

I have been wanting to write this down just to have it all in one place. The past few years have been rough. But they have brought us to a new understanding of who we are as people and really more importantly of who we are together.  I can’t tell you how many times Kevin has looked up from his bed and grabbed my hand and said “Thanks for being here.”  Like I would be anywhere else.  And here we are close to a year and a half from when it all started and we are getting ready to travel to Cleveland once more for Kevin to have the lower part of his aorta replaced below is diaphragm and to finally remove the aneurysm that has been there since the beginning.  We have had a long break from the ICU and recovery times around our house.  I think Kevin has definitely started to feel like himself.  So this trip coming up in June seems harder to face in some ways because we know what is coming and we have had long enough to fully recover from the other surgeries. And in case you are just getting to know us and need  a ‘quick’ update on how we got to be here… here it is!

To start the whole adventure off Kevin had a sharp stabbing pain in between his shoulder blades that had him writhing on the floor.  I decided to take him to the emergency room where they diagnosed him with back spasms gave us pain meds (that didn’t work at all) and sent us home.  He remained in pretty much constant pain for several days and our regular doc decided to check for kidney stones because his pain had moved to his lower back.  I left my kids at a friend’s house while I took him for the CT scan and told them I would see them in a few hours.  I had no idea that I actually wouldn’t see them for a few weeks!  Kevin came out of that scan crying because of the pain and there happened to be an urgent care right next to the scanning place.  I took one look at him and ushered him into the urgent care.  The nurse gave him some pain meds and he got up to use the restroom while the doc went out to read his scan.  I heard the doc call for an ambulance to Christ Hospital 911.  Immediately I began to cry.  Kevin had not returned when the doc came back in to tell me that they had found an aneurysm in his abdomen and he needed to be rushed to the ER.  Kevin’s dad died from complications from an aneurysm when he was 35 (Kevin’s EXACT age!) and he has always had a fear that something similar would happen to him.  So this news was particularly disturbing to me.  Kevin returned and I told him what the doc said.  There were many tears, then a lot of calming, and some more pain meds.  And then he had to go in an ambulance and I had to make one of the hardest drives of my life to the hospital in my van.  I called one of my closest friends,Ellen, who bless her heart, calmed my hysteria enough that I was able to make it to the ER.

IMG 4357 copy Our Story  A Long Ambulance Ride to Cleveland in August(image taken on our first outing after the first surgery Sept 2013)

Christ Hospital ER is amazing.  That day and always.  They performed a full body scan and the doc was so amazing at calming our fears and giving it to us straight.  At this point he really didn’t think Kevin needed surgery.  He felt the aneurysm could be managed medically.  We were relieved and were sent to the CV-ICU to drop Kevin’s blood pressure and shrink the aneurysm.  My mom, who was with us at this point, went home to get my kids and put them to bed.  It seemed like this was all going to be over soon.  Then at about 1 am just as we were settling in, a bunch of people started coming into Kevin’s room and we were told his case had changed and he needed to be moved to the Cleveland Clinic. We literally had NO IDEA what they were talking about.  I doon’t think I really understood this until several days into our Cleveland stay but what happened was that the whole body scan revealed that Kevin’s aneurysm (big bulge in his aorta) had been caused by an aortic dissection (tear in your aorta) that had happened close to his aortic arch.  This is why his initial pain had been higher in his back.  No one is really clear how he lived through the week between his first pain and the scan he had for “kidney stones”.  He was meant to be here.  That’s what I believe.

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(Photo taken after before 2nd surgery in October)

So how did we get to Cleveland?  At first they talked about air lifting him, and I wouldn’t be able to go because of weight. They actually weighed me like I was cargo or something! But it turned out the weather was just too bad to fly, so they sent us by ambulance. This is an experience I will never forget. He had an internal blood pressure monitor that needs to be kept level to work correctly, but I didn’t know that.  So it kept sounding an alarm…over and over.  And they kept pulling over to get an accurate read.  I was just sure that this was it.  He was not going to make it all the way to Cleveland.  All of this and it was over.  The  EMTs could sense I was FREAKED and were very kind and did their best to keep the mood light. And that was awesome.  After what seemed like forever (and a stop for gas!) we made it.

Once in the CV-ICU we saw a vascular surgeon, a cardiovascular surgeon and a genetics person.  Cleveland made the connection right away that they were dealing with a genetic disorder.  A perfectly healthy person (generally) doesn’t have this type of injury.  I am so thankful they got this testing started almost immediately.  And then we met our vascular surgeon Dr. Eagleton.  He explained where the dissection was and how they needed to rebuild Kevin’s aortic arch in order to put in the stent to patch the hole.  He also spent some time explaining how the aorta is like a tire with many layers and the dissection had torn through the inner layers and not the outer layers.  The blood had poured through this new hole forming a new vessel or tube.  So Kevin now had two tubes running down the length of his back, ending (kind of) in the aneurysm.  This is not great.  The hope is that when you patch the hole the new tube (called the false lumen) will shrink and so will the aneurysm.  Did you actually read all that?  If you did congrats!  I asked tons of questions and I have a great friend who is a doc to help me re understand information.  To accomplish the reconstructions and the stent they had to do two almost back to back surgeries.

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(Image taken before the 3rd surgery)

Sending Kevin to surgery is an unbelievably hard thing.  Saying goodbye to him…all I can think of is they are going to stop his heart in that next room.  I am so very thankful that his super awesome brother Derick has been there with me and my super awesome brother came when Derick couldn’t the last time.  Standing alone would be unbearable.  And each time is like I am doing it for the first time.  This first time we forgot to take off Kevin’s wedding ring. So the nurse brought it out to me in a urine sample cup.  I carried that thing around in my purse the whole time we were up there.  And when I got to put it back on his finger…THAT was such a huge victory.  This and every time.

The first surgery ended at 3 in the morning or something crazy like that.  I NEVER would have made it through this night without my brother-in-law Derick, his wife Kate, and one of my closest friends Ellen and her husband Matt.  These guys kept me laughing and tried to feed me.   I seriously will never forget that.  Ever.

Dr.  Eagleton went home to sleep and I went in to be with Kevin.  Coming out of all the meds he was pretty funny, calling Derick Wreck it Ralph and saying he felt like he was in a video game, but the rest of the night was pretty scary. Kevin was mostly sedated but whenever he woke he was freaked.  And there are no walls and a lot of very sick people.  The nurses are not fans of visitors.  But Kevin is a fan of me being with him.  So I stay out of their way and they are okay with me but I am not allowed to have anything but the hard plastic chair.  And it is cold.  Sometimes, if I’m lucky, they will get me a blanket.  ;)

image11 Our Story  A Long Ambulance Ride to Cleveland in August

Second surgery was the next morning.  It went better than planned, which was amazing.  They were unsure if they were going to have to address the area by Kevin’s kidneys.  But after they put in the stent the blood flow corrected itself. Praise god.

Since our journey had begun with what we thought was going to be just a quick scan across town, I had nothing but the clothes I was wearing when we went to get the scan for kidney stones!  Kevin’s mom and my sister-in-law went shopping and bought me warmer clothes at first and then my friend Ellen went and bought me all kinds of organizational items, personal items and even an iPad.  Seriously…if not for the kindness of my friends and family I would have been stranded in my dress and flip flops.

So we spent a while in the ICU.  There is a spinal drain inserted to prevent fluid buildup and swelling on the spine.  It takes a few days before they feel comfortable taking it out and man that is tough.  Kevin can’t be moved up past a 45 degree angle.  Also I am staying up all night to be with him when he feels the most afraid and then sleeping in the lobby of the ICU for a few hours when his brother comes to relieve me in the morning.  Finally after a few days Kevin is released to the stepdown unit.

Cleveland Clinic stepdown rooms are amazing. Floor to ceiling windows, lovely wood behind the tvs so you feel less like you are in a hospital.  And  for me a flat place to lay down.  Beats a waiting room couch any day!  And once we are here they let Kevin go up to the  rooftop deck.  Fantastic to breath real air again!!  In stepdown we  found out that Kevin is a master recoverer.  Even though he needed another quick surgery to plug up a leak he beat the odds and we were headed home in record time.  But not in our own car, remember!  We had arrived by ambulance, so we had to take a “limo” service home.  And stop every hour to walk around to prevent blood clots (which seems extra weird when you aren’t driving yourself). We were so happy to get home and see our sweet babies!  Bless my momma for caring for them this whole time! <3

Kevin is released Our Story  A Long Ambulance Ride to Cleveland in August

We returned to Cleveland after just a month and learned that Kevin has a genetic disorder called Loeys-Dietz, which meant his blood vessels are weak and prone to aneurysms. We also learned that he would need another surgery, soon. October was set for the next date.  Halloween of all days.  This surgery was different because it was Kevin’s first open heart procedure.  This one was to replace his aorta starting at the root where it leaves the heart and through the arch until it hit the stent.  It was scary to say the least and involved a ton of pretesting and appointments before hand.  We started to realize we would be spending quite a bit of time in Cleveland for Kevin’s care and started to get to know the local food scene.  Especially the ice cream.  ;)

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Once the surgery happened it all was strangely familiar.  (How can this be familiar?)  While Kevin was in the ICU, I stayed up all night and slept during the early morning on the waiting room couch.  But again he rocked recovery and ZIPPED out of the ICU.  Back down to the fabulous stepdown rooms and then we were told in a surprise visit that we had to come back in just ONE MONTH for the next surgery.

Now THIS was not cool.  We really needed a break.  But there was no option.  Kevin’s aneurysm was getting bigger and the only option was to replace more of his aorta to fix bloodflow and then we would see how things looked.  There were some serious tears shed.  The LAST thing Kevin wanted was to be recovering from surgery over the holidays.  But being alive is always the most important.  So I came up with many ways to spread Christmas cheer through November and also in the hospital while we were there.

family crop copy Our Story  A Long Ambulance Ride to Cleveland in August

This surgery was a bigger incision and can be tougher to bounce back from.  We knew the ICU stay would be longer so I finally booked myself a hotel room that was super close so I could walk back in an instant if Kevin was upset or I needed to just look in on him.  Even if I only sleep from 12-4:30, sleeping in a bed is better than waiting room sleep. And the stay was a bit longer but as always Kevin beat the odds and busted out a day early.  And we spent our time in the stepdown making the best of our tiny Christmas tree (the nurses LOVED it!).

And I guess that brings us to now… where we have been getting scans every six months…so 2 without incident.  The last scan was the one where they said it was time for the next surgery.  And I think that no time is a good time.  But hopefully this will be the last big one for a long while.  If you have followed our story on Facebook or if you have just happened upon us somehow, thanks for reading through.  As always we appreciate good thoughts and prayers as Kevin approaches his next surgery on June 9th.

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(Image taken on the anniversary of the dissection in August 2014)