Tuesday, February 26, 2019

More updates

Here's a brief summary of what has been happening in our life:

Harlie's trach scar.  It is still acting up.  It had another flare up this week.  It came out of nowhere, blew up like a bloody balloon, and broke, all in just two days.  It has had a total of four flare ups (that's what I'm going to call them).  Each time, I have thought - or hoped - that would be the end of it.  No such luck.  It is very frustrating and painful for me.  I don't think it bothers Harlie as much as it bothers me.  Honestly, it scares the hell out of me. I mean, how much more abuse and trauma can that small amount of skin take? And if she has any hope of getting that trach removed again, that skin has to be okay.

My parents.  My siblings and I helped my parents move from their house of almost 30 years into an assisted living facility.  My mom had to have spinal fusion surgery in November and it was hard on her and my dad.  We all realized they were done with going to the grocery store and preparing meals.  So my sister and I went and toured a bunch of different facilities.  We found a nice place and my parents liked it, and moved in right after the new year. Now we have started the process of going through the house and trying to get it empty and ready to sell.  This time period is challenging for all of us, in different ways.  It has also inspired me to live with less.  So, Tom and I have gone through our house and made some changes.  That's been nice.

We took a cabinet from my parent's house.  We painted it and put it upstairs to house most of Harlie's medical supplies.  I think it is pretty obvious that we've been fighting the fact that we need these stupid supplies.  We have been less than organized about them since we reacquired them a year and a half ago.  They were scattered about the upstairs hallway, her room, the bathroom closet, etc.  So, it is "nice" (as nice as it can be to have something you hate) to finally have them more organized. There are still some in her room and the bathroom closet. I would need at least two (possibly three) of these cabinets to hold them all.  But, it is definitely better now.  Looking at the finished product makes me both happy and sad at the same time.


I didn't get any before photos.  It was an off white color. We didn't want to buy any paint, so we used what we already had.  I painted the inside a cream color and the outside a purple.


While painting the inside of it, Mabel went through the paint tray and I didn't notice.  Oops!



Tom's Heart Cath.  Tom has SVT.  In the simplest explanation - it is an extra loop that his heart beat can get stuck in.  It makes his heart rate go up to 230 bpm.  For most of his life, he has been able to force it out of this loop and get it back to a normal heart rate.  However, recently, it has been harder and harder for him to force it to stop and thus, it would stay in the 230s for longer than he liked.  It also forced him to stop his work out, or his hike until it would stop.  Around Thanksgiving, we went to the gym together and it happened.  He had to stop his work out and it remained in the 200s for almost an hour.  He spoke to a friend of his who is a cardiologist and he got him in to see a doctor about it.  We saw him in December and he explained that he could fix it during a heart cath.  Or Tom could take meds to help.  Tom did not want to take meds every day, so he chose the heart cath.  I mean, what's the big deal?  Harlie's had almost a dozen of them.

That heart cath was January 11.  It was so weird being there for him instead of Harlie! Of course, it didn't go as expected.  Turns out he had TWO loops.  One was 200+bmp, the other was 130+bmp.  But, since the 200+ was so high, he didn't really notice the smaller one, even though it was happening a lot more often.  These loops (or pathways, I think is what they really are) are congenital.  Interesting.  Anyway, he ablated the 200+ one successfully.  But, the 130+ one was in a difficult spot, deep in the lining of his outer wall of one of his ventricles.  It was hard to get to and when he ablated it, it would stop, then start up again.  Each time he ablated it, the heart swelled in that spot, so he would have to ablate a different spot.  This went on for quite some time (like hours).  In the end, Tom's blood pressure dropped, and the doctor had to stop trying to get it.

As usual, I was the last one sitting in the waiting room.  And he couldn't go home as planned, they had to keep him over night.  Thank goodness for our cardiologist friend, Massimo.  He kept checking on me, then going into the cath lab to get a report to tell me what was happening.  I am so grateful to Massimo for doing that!  I was constantly fighting my PTSD (which makes me envision the worst case scenario). So, he was a great distraction.  Thank you, Massimo!



In the end, Tom had the heart cath, still has to take meds (for now anyway) and will likely need another heart cath sometime this year to get that second loop.  It can take up to six months for his heart to heal and see where he lands.  So, he has to be patient. It also made us look at what Harlie goes through when she has heart caths.  It wasn't pretty for him and it took him a good, solid week or more before he felt like himself again.  We can't believe we have done that to Harlie like 10 times.

Harlie's Heart Cath.  Speaking of heart caths, yes, she needs another heart cath, too.  It is scheduled for February 26.  I hate that it is during the "year mark" of being there last year.  February 26 was Post Op Day 5 and it was an awful time.  It feels like it was yesterday.

The dogs.  Oh, my poor dogs.  Sometime around November they started itching.  It is awful.  I have taken them to the vet so many times over the past few months.  It has just gotten worse, even though they are on daily medications.  Especially for Rooney.  Poor Rooney has lost so much of his hair and is just miserable.  He as not been himself at all.  A few weeks ago, it got so bad that they were keeping us up at night.  Uninterrupted sleep doesn't come easy to us (we still have to sleep with a baby monitor for Harlie so we can hear her and her alarms), so we had to move them downstairs.

It was frustrating because I just kept going, spending money, and getting no answers.  I changed our laundry detergent to a free and clear one and washed laundry over and over, thinking what we were using was the culprit.

But, this past week it got really bad.  And each day Rooney looked worse than the last.


So, I took him - again.  He has lost three pounds since I took him in December!  Poor guy!  They were shocked at how bad he looked.  So, they did some tests and the vet came back to tell me that Rooney has scabies!!!  WHAT?! He asked me where he's been, because he said he didn't get it from our backyard.  Well, we went to a friend's farm for our family photos on December 29.  They ran all over that place and loved every second.  Maybe they came from there?  Who knows. I love the photos, and since scabies is treatable, it was worth it.

The vet thinks they already had the itching issue, then got scabies, which made our last month so much worse.  Thank goodness we moved them downstairs and haven't let them in our bed!  The vet gave Rooney a shot while we were there.  We gave him, Mabel and Morty (Mabel's brother who comes over a lot) meds.  And I gave them medicated baths and washed all their bedding.  We will retreat them again in three weeks and hopefully all will be gone for good!  Rooney is already so much more like his old self again, I am so happy for that! 

Morty, Mabel and Rooney, with his face down. He was not himself at this time.
Just some more pug pics, because why not?

Mabel and Morty (on his back).

Murphy eating, Mabel hoping to sneak a snack.
For Christmas, Tom gave me a puzzle.  I did it and this is how it ended. I had three empty spots and three puzzle pieces that didn't fit into any of the empty spots.




Crazy, right?

Okay, I'll finish this one up for now.

Much love,
Christy xo



Heart Update

Hi. Here's another thing that's been on my mind - Harlie's heart. l think I'm just going to think out loud and hopefully it&...