Sunday, April 30, 2017

We prepare for our Warrior Princess's 5th OHS

So we finally met with Dr.R for the official results of Lily's cath. After doing all the research from the information I was given, I knew what was coming, but it was nice to be given the rest of the technical terms and names. So let me catch you up. 
 Lily's coarch repair that was done at 5 days old, hasn't grown. When they attached her vein, they had to suture it all the way around, in a circle, which in turn has created scar tissue, and it is strangulating her arch. blood goes up into it, but all of a sudden runs into a traffic jam, because it is such a narrowing (stenosis). They will try to balloon that, it is in such an area, that a stent isn't an option. We haven't talked about if that doesn't work, it is something that I will bring up at the surgery consult. 

That is one repair. The second repair is the Ao-Rv Fistula. First, a fistula means, 
  1. an abnormal or surgically made passage between a hollow or tubular organ and the body surface, or between two hollow or tubular organs.
Ao= Aorta   Rv= Right ventricle  

So with that being said, Lily has a passage going from the bottom of her aortic valve to her right ventricle. What I was I told, a patch will be put in place again. So, this is where her original VSD was. The patch was disturbed when we had issues with the Left ventricular outflow tract obstruction (LVOTO). According to Dr.R, the original patch has completely corroded, leaving very little, if any of the original intact. So they will replace that. I am interested to learn what type of material they will be using this time and if they feel we will have a better chance of it lasting, or if we will end up having to replace it again down the line. I know some things can't be foreseen, like this, who would have thought this patch would have done this? But with Lily, we can't close her VSD in the cath lab, it requires open heart surgery, so it is a very valid question for me to ask.

The last repair that needs to be made, is replacing her St.Jude's valve. I have included a picture of it below, so you can get an understanding of what it looks like
The valve is made of metal and synthetic material. The leaflets are metal, so when they open and close, if you were to send a cath through there, they could snap the cath off, and it could kill her. I just wanted to help those understand, who don't know the heart as well as some. 

Lily has a 19mm valve put in when she was 2. The way it was explained to me then, that was the size of a petite adult female. She should never of needed it replaced unless, the valve failed, there was and infection and we had to replace it, so on and so forth. So after all my research I did and Dr.R confirmed the research I did, she has to have it replaced because her valve is "failing" at the top of mechanical valve. Meaning it is coming detached. Their solution to this problem is to put in a 21mm valve instead.

Now I have questions about that too for the surgeon. Trust me, they are written down, he's gonna love me. I have never met him, he has never met Lily, doesn't know that she throws curve balls in the middle or surgeries. So my anxiety is through the roof, thankfully my doctor has given me something to help with that. I spend a lot of time listening to music, clearing my head, and praying.

I finally started talking with Lily about her upcoming surgery, she seems to be taking it well, her biggest worry is, that her heels are going to hurt. She remember waking up from her cath and her heels hurt so bad, that we had to prop her feet up with pillows. I told her she wouldn't even notice her her heels hurting.

Then she turned to me, her eyes wide, and says, "Mom, you'll be there right? You'll stay at the hospital the whole time, you won't leave me, because you never left me when I was a baby. You won't leave me now, will you?"   

I scooped her into my arms snuggled her close and told her I won't leave the hospital until she leaves to go home. I heard a huge sigh of relief, I heard her heart slow down, she kissed my cheek, hugged me, and then ran off. 
I have been blessed with this amazing Warrior Princess, who's heart still beat strong, even when it is tired. She loves her life, she lives her life, and these last 9 years have been the best because I have had this sweet girl in my life.

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
J

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,
Jenna

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.
J