Tuesday, April 12, 2016

There's so much to say...

I don't even know where to start. This year so far has been hell and we're just trying to stand on both feet at this point.

It all started back in March on my birthday (the 12th). Violet was standing in front of the TV watching cartoons when I heard a pop and she collapsed on the floor screaming like I have never heard this child scream before. Urgent care tried to tell us she had a virus that causes inflammation in the joints and sent her home. But you could clearly see there what something wrong with her knee. It looked deformed. So on Monday I called her pediatrician but they don't have xray capabilities so I called her ortho. The ortho she normally sees was between moving offices and out for the entire week. We finally got her in with a different orthopedic dr and they did xrays and discovered that Violet's kneecap is completely dislocated and on the side of her leg. They sent us home saying there wasn't anything they could do for us. The red arrow is pointing at the white oval. That's her kneecap. The red circle is where her kneecap is supposed to be. This is looking straight down at her leg.

I was a bit miffed for not getting any answers. No hope. No nothing. Just a pat on the back and sent us on our way saying for us to contact the Shriners. 

I contacted the Shriners hospital that we normally go to in Shreveport, LA but they said Violet would need to see a sports medicine Dr and that the Sports Med Dr wouldn't be in until April 18th...over a month away at that point. There was no way I could leave her in pain for that long. So the local Shriners and I started calling every single Shriners orthopedic hospital in the country trying to find SOMEONE that had a Sports Med Dr on staff sooner. We started with Greenville, then Houston, then Chicago, then Tampa,....the list kept going. So I was bouncing between calls at around 12 different hospitals trying to coordinate days that someone would be able to see her. Trying to email over the reports from her orthopedist and the copies of the xrays that I had. It was complete chaos. I would be on the phone from 7 in the morning until around 7 at night and not get a single moment off of the phone. I just switched from one call to the next.

We finally found a sports med dr at the Shriners hospital in Philadelphia that would be able to see her but they needed us to get a sedated MRI first since the Shriners hospital in Philly didn't have the capabilities to do a sedated MRI. If the surgeon in Philly agreed to proceed with surgery, she wanted a very clear look at the knee before hand so it just made sense for us to go ahead and get the MRI before flying all the way to Philly.

So I called the orthopedist that did Violet's xray and left 4 messages for them to call me back and that I needed them to order a STAT MRI with sedation so that we could fly out to Philly. It took days before I could finally get one of them on the phone. By this point I had already called around to different hospitals to see what the wait list is like for a sedated MRI and had been told by the imaging department here locally at the Childrens hospital that they were then booking in to the third week of was March at this time. There was once again no way I was going to make Violet wait that long. She couldn't walk. She couldn't even stand up.

So I started calling children's hospitals in different states trying to find ANY of them that could get us in sooner. I knew Children's in Birmingham, Alabama would be able to since I had spoke to them on the phone. So the orthopedic office finally calls back and I inform them that the surgeon needs a sedated MRI scheduled and could they please send the orders up to Birmingham, Alabama (5 hours away) instead of to the local hospital. Finally got the order through and everything scheduled. Violet and I drove up for the procedure and since she was already going to be under anesthesia I asked if they could do her echo on her heart at the same time since she was due for the test and they agreed.

They sent the results of the echo down to her local cardiologist in Mobile (back home) and we had our completed MRI to bring to the surgeon. We were scheduled with the hospital in Philly on the 7th of April and started making the arrangements for us to fly up to Philadelphia on the 6th.

So the 6th arrives. I've had the flights arranged, rental car, hotel and spoke with TSA to make our screening process as easy as possible. I had all but forgot about the echo results that had been sent to Violet's cardiologist because they honestly weren't even on my radar. We never worry about her echo anymore because for several years we have had nothing but good results and each time they have told us that she should never need another open heart surgery.

We had just made it through TSA screening and I stopped to buy a water in the small cafe before I had to board my flight. I was chatting with the woman behind the counter when my phone started ringing. I saw it was the cardiologist office and figured the nurse was calling to tell me that everything was fine and they would see me in a year...but that didn't happen.

As soon as I answered the phone I knew something was wrong. It wasn't the nurse on the phone but the cardiologist herself. She never calls. The only time a Dr ever calls us directly is with bad news and my heart sank into my stomach. The minor defect with Violet's heart had got worse and she needs another open heart surgery. I'm alone in the airport, having the rug pulled out from under me and I'm trying to keep it together in front of Violet. It didn't work. As her words started sinking in, all the emotions from the first open heart surgery came flooding back in and I crumbled. (to read about her first surgery click HERE)

The sweet lady from the cafe came from behind the counter and was my shoulder to cry on and my support during one of the most "alone" moments of my life. I wanted my husband there with me. I needed him to be strong so I could fall to pieces. But he was working and I was in an airport about to fly halfway across the country in hopes a surgeon could make it so my child could walk again. I had to suck it up and put a happy face on so I didn't stress Violet out and get us on the plane. As we were about to board I heard a voice calling my name. It was a very dear friend's dad. He was on the same flight as me. Talk about a blessing.  A friendly face to keep me grounded and not feel AS alone.

We got to Chicago for our connecting flight but missed it by 5 minutes. So we had to get put on standby for the later flight which we were able to catch with no issues. We arrived in Philly and got to our hotel without a hitch. The next day was our appointment with the sports med surgeon at Shriners.

First let me start off by saying that Shriners hospitals are top notch. The staff is always incredible and treat you like family. I love our Shriner's family and will always be thankful for what they do.

Upon arriving at the Shriners we were informed pretty quickly after they found out about Violet's cardiac issues that they would not be able to perform any surgery (if they were even able to do the surgery) until her heart was fixed.

A bit later we finally were able to see the Sports Med Dr and she informed me of the VERY severe risks of the surgery for Violet. It wasn't good. We would likely have more than a 50% chance that the surgery would fail and it could damage Violet's leg causing loss of mobility. That isn't a gamble that myself or my husband is willing to make. They might "possibly" be able to do the surgery once Violet is over 10 years old and her growing slows down quite a bit but we will have to revisit that option at a later date. So until then, we will be focusing on rehab therapy, physical therapy and we're trying to get her into hydrotherapy and possibly hippotherapy. We now have a loner wheelchair from the Shriners and 2 leg braces that will keep her leg fully extended so that she doesn't use the muscles that tighten around her kneecap. 

We will fly back up to Philadelphia for another leg brace that needed to be custom made. They made a cast of Violet's leg so they can custom fit it for her. We also have to fly back up to get her wheelchair that is being made to fit her with the adjustments that she will need. This will be a long term ordeal for us. She's only 5 now and the option for surgery won't even be available until she is over 10. It's a tough pill to swallow. We worked so hard to get her walking. She started walking shortly before her third birthday. Then just 2 years later she has the ability stripped away from her in the blink of an eye.

I'm honestly thankful that she doesn't understand anything about needing another heart surgery. Right now she just thinks we're going on fun trips where we also stop at hospitals during the trips. I wouldn't know how to explain to her that she needs surgery again. That she might need a follow up open heart surgery to the surgery she's about to have. Because she will likely be receiving an artificial valve...and since the valve doesn't grow with you, they will likely need to replace it in a few years.

After everything was done and we were back home from Philly, I did find out that her left atrium and left ventricle are both dilated. Not severe at this point but it could signify that she is either going back into heart failure...or possibly already there in the beginning stages. She has moderate to severe mitral valve insufficiency so it's pretty definite that the valve will need to be replaced. Two pediatric cardiologists have looked at her report and both have said she needs open heart surgery. We're just waiting to hear from her heart surgeon at this point to see what the game plan is going to be after we do a couple more tests. Then we will be heading back up to Birmingham, armed with all of her information to see the cardiologist (the Director of Cardiology) up at UAB which is in the same practice as her heart surgeon. Then they will make the call. We have an appointment on the 27th with the Director. It's an exhausting process, trying to keep everything organized. Which Drs scheduled which tests. Making appointments with several different Drs that don't overlap other Drs. But not only are we doing this for her heart...but we are having to schedule everything for her legs around everything with her heart. So our flights back and forth to Philly and her getting her wheelchair all depends on when her heart appointments are and if she will be cleared to fly for the appointment.

Now we are trying to sell my SUV so that we can get a more handicap friendly minivan. Her chair is extremely heavy so lifting it up and down out of the back of the SUV is proving to be quite the challenge. We had a rental minivan while we were in Philadelphia and it was so much easier to put all of her equipment in to the vehicle. Then we are building a ramp on the back of the house so she will be able to get her wheelchair in and out of the door easily. There's just so much stuff to do all at once and my brain actually hurts.

I know several have sent me private messages asking about a gofundme site so I will include the link at the bottom of this blog post for everyone to be able to share. And we would greatly appreciate you sharing if you are unable to donate. Like I mentioned on the gofundme page...we never planned on her needing another open heart surgery. We never planned on her needing to be confined to a wheelchair. We sure didn't plan on both happening within 24 hours of each other.

Violet's Medical Fund