Friday, March 24, 2017

Cath Results and Misplaced Anger

We went in with a hole in her heart and a leaky valve and walked out with so much more.

My processing has taken time, tears, cursing everyone and no one at all, and anger. Oh the anger has consumed me and it took me a while to place who and what I was angry at. So let me start with the  medical side of everything before we delve into my emotional side, because those aren't going anywhere.

So when Lily was in the Cath lab, we found out she now has pulmonary hypertension, which is a new curve ball for me. Now this little present is from the leak in the mechanical valve. So first Dr.G tried to put coils in, which back fired, then he added a plug. It is exactly as it sounds. The picture below shows you what it looks like. I outlined it in orange for you so you can see it a bit easier.

Once the plug was put into place, the blood started flowing correctly again. She is no longer coughing at home, which most likely means her pulmonary pressures are going down, but we won't be able to tell that in an echo, only another cath will let us know for sure. 

The VSD was non-repairable in cath, because in order to repair it, you go through the aortic valve. With Lily that is a no go because of her mechanical valve, you send a cath through there, the metal leaflets would break the cath and would kill her. The only way to repair the hole is to open her up, we are not opening her up for such a small hole.

But wait there is more. When Lil was a baby it was mentioned that she had mitral valve prolapse, but that it was so minor that it was nothing to concern ourselves with. So I filed it away, never truly forgetting about it, but doing my homework knowing, it isn't truly a huge defect, and she can live her life normally with it. Yet it was brought to attention again, and this time it was mentioned that it might be time we started talking a mechanical valve replacement there. All I could think is, "My child is going to have a bionic heart."

Why is this just now being brought up? Why hasn't it been seen on echos? Is it because her heart is backwards and really hard to see certain things? I have a million questions floating through my head and I have a month to wait until I can fire them off at Dr.R.

No here comes the doozy, the dino whooper, gut puncher, I cried, I screamed, I cussed, I've been so angry I haven't been able to talk with anyone about this.
The picture below is Lily's coarctation of the aortic arch, we fixed it during her first surgery with a vein from her wrist. The only time we worried about it was after her fourth surgery, right after we put the mechanical valve in. 

What you need to understand is, they don't make mechanical valves for children, they only make them for adult hearts. So here is a 2 year old little girl, getting a 19mm valve (the size of a grown petite female) put into her heart. So when the blood was being pushed up through the aortic valve into the CoArch, it started to balloon. It put a massive strain on it, also know as gradient levels, and we worried the work done on the arch wouldn't hold. But to our amazement, things leveled out and that was the end of it, or so we thought.
So what you are looking at in the picture above , the marked areas in orange, is now the stenosis, aka narrowing. So the ballooning was done on the front end of the valve but everything comes to a crashing halt on the back end. We talked about if a stint was a possibility but it most likely wouldn't hold because it is at an opening. In normal patients they would worry about clotting, but in Lily, being on blood thinners, she would just throw the stint. So we would have to think of a different course of action.

So you take all of these things and you put them together, you have to ask yourself is it time for an open heart surgery, or do we watch and wait. 

My anger comes into play with her arch, because that was a man made mistake. Please don't get me wrong though. I don't blame her doctors, I am not even blaming myself, even though God knows I did in the beginning, which is irrational. My anger resides in the fact that there is not enough research in pediatric congenital heart research. 

My daughter is a very small percentage of children that have a mechanical valve. Are you telling me this has never happened before? Are you telling me there was no studies done, telling use this was a possibility we took, when we put it in. 1 penny of every dollar  donated to the American Heart Association goes to Pediatric Research. 1 PENNY!!! How is Gods name is that fair? 

We destroyed a fixed heart defect in a child, by trying to fix another heart defect that doesn't have enough research behind it. And I am angry because of it.

This valve has caused this domino effect of problems. Like the pulmonary issues, do you want to know what took us so long to get back to see Lily after cath? I didn't find this out until the next day. Her lung partially collapsed and no one told us, NO ONE!!

I continually pray, to help ease this anger, to let go of this anger, because I detest it, but I know it won't go away until I get answers. 1 month, I have to wait 1 month. I better figure out an inner zen.

Peace and Love

Tuesday, March 21, 2017

Hazy lungs- Fevers- Home bound?

 I know I know, still no post about the findings from yesterday's cath, I am sorry, It was a long night, busy morning, and I am exhausted. We had an echo this morning, I have no idea the findings on that one, because Dr.B that did the cath yesterday is in Gilbert, so he is looking at the images over there, and Dr.Rhee is looking at the images 7 floors down, so I didn't actually get a say in if it looked better or not.
She also had an x-ray and it is showing her left lung is hazy. They told me that it should get better with lots of sitting up and coughing. Yet what worries me is the fever we are going home with along with the hazy lung but they aren't concerned. So after our third round of antibiotics, we are packing up our room and getting ready to break out of here and head home. She is going to relax and watch movies, while mommy gets to log in remotely, and work for the rest of the day from home. At least I am blessed and am able to work from home. My company was very understandable when it came to my daughter. Anyway, I promise I will post tonight about her Cath findings. 

Much Love,

Monday, March 20, 2017

Processing & Low's

I know I said I would update this evening but after the day that we've had today, I am going to settle in for the evening with this lady.  She woke up long enough to smile for and no sooner did I take it, did she fall back asleep. 

We had a bit of an episode shortly after being brought upstairs. She started in on a coughing fit, she had just had a drink of water, and her lung pressures aren't helping. We were on 2 liters of oxygen from the nose canulas at that point, when all of a sudden, she just couldn't catch her breath. I could see the look of fear in her eyes, knowing she couldn't move and not being able to breathe. Her lips turned blue, she turned grey, alarms went off, her sats dropped 69, 68, 67, and I stood helpless. This happened in under 3 minutes, and in those 3 minutes it seems like 30. Her nurse came rushing in, we bumped her back up to 5 liters of oxygen and she was hanging out there until about 5 minutes ago, we are giving it a test run to see if she will tolerate us going down to 2.5 liters. So far her sats are hanging in there at 98*, so we are happy. 

I just got the ok to feed her chicken broth, a tear ran down her cheek and when I asked her why she was crying, she said it was because she was so happy she finally gets to eat. She has been a trooper. It is going to be a long night in here for me, every time I sit down and get comfortable, she asks me for something. But you know what, I am OK with that, 100% OK with that. 

As for the news we got earlier today, I am still trying to make heads or tails of it and see it objectively. My brain feels like mush right now, it really has been a long time since it has had so much thrown at it at once.

Thank you to all for the texts, phone calls, and follow ups on facebook too. I haven't been the greatest at getting back to everyone. I do apologize, just know I have seen them all.

Much love.

Update 3

She is getting her last few x-rays in cath lab right now, the doctors just came out to see us and fill us in on things. I will post in a bit, in depth the findings. We are staying over night.

Things are a little worse than we thought but that doesn't mean we have to rush right into fixing things right away. Overview so you know what to look forward to.

  • Coarctation of the aorta-her repair
  • Pulmonary pressures*
  • Mitral valve issues*
  • Coil's and Plugs
The bullet points with ** next to it are new issues. So stay tuned, I promise I will update soon, first I need to see my girl.

Thank you again to everyone for your continued thoughts and prayers. You have carried us through this day. So much love and thanks.