It's the Little Things

It's the little things we take for granted...our own bed, clean clothes, toothpaste.  We arrived home last night and are thankfully appreciating those little things.  To make things even better, the kids are home this weekend! Our "plan" for the weekend? Rest and togetherness.

So what's been happening these last few days? To begin with, let me just say that when we are in that hospital setting, it feels like we are in another world.  I cannot find the words to describe it. Time moves differently. I would stare out the window watching people and cars go here and there but it was like that was their world and the hospital room was ours.  There is a detachment from what's going on in life, work, home... Last December I remember asking a friend to send me Snapchats of people doing regular old things around school. I think I needed to feel like that world still existed.

Wednesday night, after being admitted, Kevin was given an ultrasound of his left leg which had been experiencing swelling for the past several weeks.  They wanted to check for blood clots.  We weren't given any results right away but I knew something was up when the nurse said he couldn't have anything to eat or drink after midnight.

They let me sleep on the couch in Kevin's room.  I appreciated being nearby even though it meant I too got to be woke up whenever anyone came in to the room.

As I mentioned in the previous post, they had started Kevin on a Heparin drip to start thinning his blood and were taking blood draws every 6 hours.  About 2:00am they stopped the drip because it was working a little too well.

Dr. Hsu (pronounced shoe) told us the next morning that they had found a clot in Kevin's leg and that they wanted to put a filter in his vein that would prevent the clot from reaching his heart or lungs. They would be going in through his neck with a catheter device which would put the filter in place.  Kevin would be awake during the procedure...even though he tried to convince them to knock him out.

The drawing represents Dr. Hsu's attempt to show us where the filter was placed.  The larger circles at the top represent the lungs.  The smaller circles in the vein represent the range where the filter could be placed.  They could have come up through his groin area, but they chose his neck.

Thursday morning became a waiting game.  We had to wait for the team of doctors to come and officially give us basically the same information.  I found it humorous that this group of 6+ doctors really told us less than Dr. Hsu had that morning.  Also, when one pager went off, they all looked down at the same time to check their pagers. Kind of like a bunch of teenagers checking their phones.  Later, tho, I did discover that this team made things "official".  Dr. Hsu would give us the scoop in the morning and they would put their stamp of approval on it a few hours later.

Since we had a little time, and Kevin wasn't hooked up to any IVs for now, we decided to attempt a shower since it was much more handicap accessible than ours at home. Because the nurses didn't really understand Kevin's strengths and weaknesses, and because I thought it would be less embarrassing for Kevin, I pretty much took over all bathroom duties.  At times, I'm not sure that was the best idea.  For example, at one point we were trying to leave the bathroom. Kevin headed toward the sink and I thought we should head toward the door.  Kevin's brain is thinking: "Head toward the most stable thing in the room." My brain is thinking: "Take the least amount of steps possible."  Of course, our brains aren't talking to each other.  Plus, patience gets a little thin when sleep was minimal at best.  We got over it, but I'm sure the transporter out the hall with the gurney overheard and was thinking, "Oh my. That poor man."

Also, it got a little scary for me at times because Kevin's brain and body aren't always on the same page.  In one instance we were trying to get him stood up in the bathroom but his legs weren't cooperating.  I thought he was falling so I had one arm around him to bring him back and the other hand grabbing the bar so he didn't pull us both over.  My heart was racing. He kept saying, "You're pulling me over."  In his mind, my arm was pushing him in that direction rather than pulling him back.  It made absolutely no sense to me.  Once we got him sat down again, I could breathe.  As usual, my rock is telling me to "Relax".  Not easy to do when I'm feeling the burden of keeping him safe.

Once Kevin left for his procedure, I had the task of keeping people updated.  Let me tell you, that's not so easy.  Kailey asked if I was bored.  Are you kidding?  I was able to watch a marathon of Flip or Flop on HGTV (no cable at our house) and knit while sitting in the recliner. Some people can't handle a sedentary lifestyle but I'm a pretty good couch potato.

Kevin was nervous about the procedure, afraid it would hurt.  But when he came back he said there was nothing to it.  He had a bandage on his neck and had to stay sitting/laying at a 45 degree angle for a while.  Of course, as soon as he got back in the room, the echo cardiogram people were there to check for any clots in the heart.  Not quite sure why they didn't come in the morning but we are not in charge.  Finally, at about 5:00, he was able to eat!  I'm not sure how he lasted so long.  I know I would have been complaining.  By the way, the echo cardiogram came back fine.

That evening our friends from Wabasha came for a visit.  She brought me toothpaste!  I had a toothbrush but no toothpaste.  She actually brought the whole deal--toothbrush, paste, floss, and picks--because she is a hygienist and wanted to make sure we were practicing good dental hygiene. They also brought snacks which I may or may not have shared with Kevin.

The nurses did start the Heparin drip again during the day for a few hours.  However, that night they transitioned into a shot instead of an IV.  Evidently, Kevin's type of cancer can cause clots so he will need to be on a blood thinner from here on out.  The body works to take care of the clots itself and the thinner will prevent more clots from happening.

Friday morning I had to shower.  The "washing up" wasn't cutting it.  Thankfully, one little bag I had along had some underwear in it.  Truthfully, I had forgotten they were in there and I was hoping the elastic wasn't rotted. ;)  Even though my clothes were on day 3, I felt pretty good after that shower. By the way, a friend from high school, who lives in Rochester, read my previous post and called to offer clothes so I had other options. Aren't people great?

Dr. Hsu, and later the team of doctors, agreed that we could go home! The procedure to put in the filter went well, he had tolerated the shot without issue, and his vitals were good.  The head doctor did tell us that he had been sharing the pictures of Kevin's CT scan with others because the clot was so large.  Dr. Hsu tried to give us an idea of its size by showing us the scan on the computer.  They labeled the clot a saddle embolism because the clot went over the vein that connects both sides of the lung (see the shaded area in the drawing above).  They believe the clot started in his leg and as pieces broke off they went through the heart and into the lung area.  The doctors said Kevin has a strong heart.  (I kidded that I thought they did the echo cardiogram to see if he had a heart...hee hee).

The next task was learning how to give those blood thinner shots at home.  We had to watch a how-to video, which was painful enough for Kevin.  I had to keep asking, "Are you okay?" He made it through the video but didn't think he could give himself a shot.  Guess that leaves me...but I did it. The task itself isn't so hard. I just don't like doing something that I know is hurting him.  As of this morning I'm three shots in with no issues.

That whole ordeal must have taken a lot out of Kevin because he slept from 9 until noon, when they gave us the official okay that he could be released.  However, we were surprised to learn that an appointment had been scheduled at 4:00pm to see Dr. Kizilbash back in the Gonda building.   So, 48 hours later, I was pushing Kevin back to the Gonda building where this little change of plans had started.

Thankfully, Dr. Kizilbash saw us early.  His eyes were sympathetic as he knew this had been a long three days for us and we were ready to go home.  Dr. Kizilbash recapped everything for us including explaining the CT scan again.  He said it was the biggest clot he had ever seen.  It could have been fatal.

Now some reading this, who have seen Kevin lately, might feel that might have been a good option. No, I don't take that as being cruel.  I get it. You see the deterioration and think, "I would just want to be gone."  Although it is hard to watch Kevin struggle, we are so thankful he is still here with us.  His body doesn't cooperate but we still have his personality and humor and company.  I am thankful EVERY DAY we are given this time, even when days are hard.

The overall reason Dr. Kizilbash brought us in was to change our treatment plans.  At this point, he does not feel continuing with the Avastin infusions every two weeks is safe.  He does still want Kevin to start on the Temodar chemo drug when it arrives.  We will head back to Mayo in a month for another MRI.

So today we are thankful for so many things:

• to be home
• for our kids to be with us
• for our family and friends--for all they do and for all they offer. We know they are there for us.
• for doctors
• for medicines, even if it means a shot in the belly
• for the little things we often take for granted
• for each and every day

But godliness with contentment is great gain.

For we brought nothing into the world, 

and we can take nothing out of it.

But if we have food and clothing, we will be content with that.

1 Timothy 6:6-8