Thursday, July 3, 2014

So...What's the Hold-up

I have started and stopped this blog so many times it's not even funny. Not that I don't know what to say necessarily, it's just that life has been busy and this is not been at the top of my priority list. Also, to be honest, I am frustrated. I'm ready to have this done for my child and I'm ready for us to get to continue our lives as usual without being in isolation.

So, many of you are probably wondering exactly what happened during the cancellation of Emma's procedures.  Here is a not-so-brief rundown. 

It  was a couple of emotionally and physically draining days. We are still trying to process everything and doing our best to get Emma scheduled as soon as possible for the next attempt at the heart cath and eye surgery.

That Tuesday morning we went to Emmas ophthalmologist for preop.  It was a very short appointment and we had an idea of what would be happening Wednesday morning with her eye surgery. We learned that he would be working on both eyes to work on vertical and horizontal muscle alignment.

We then headed to children's medical center to meet with Dr. Nugent and the heart team. We get there and are taken into the room at that heart clinic to wait to meet with Dr. Nugent. We were told it might be a while because there were some emergencies that had occurred in the Cath Lab.

 Dr. Nugent's PA came in to discuss with us what was going on. He said that due to the number of unforeseen emergencies both in the CVICU and in the Cath Lab he did not know if they were going to be able to make it work for Emma's procedure the next day. We asked to speak to Dr. Nugent and Dr. Lemler before we made any further decisions. Dr. Lemler spoke with us and was not optimistic that it would happen due to everything that was going on. He was very upset that it wasn't going to work but said he had a room for us upstairs on 8 if we needed it.

We waited for quite a long time to meet with Dr. Nugent. When he came into the room I could tell that it probably wasn't going to happen. He told us that he had done everything in his power, but unfortunately due to the abundant amount of emergencies and unforeseen procedures that were occurring in the heart center..... it looked like Emma would need to be bumped.  

He told us that there was a very slim chance of the cath happening in the morning, but if we wanted to, we could spend the night on the 8th floor to be prepared just in case Emma could go to the Cath Lab.

 We decided to go ahead and stay so that we wouldn't miss an opportunity if it occurred. We spent the night on the 8th floor at children's medical center. They were very accommodating and only made Emma wear a pulse ox probe and held off on an IV.  

The following morning Dr. Lemler came by and said that if the case that was going to the Cath Lab right then went well and did not need to go to the CVICU, then Emma would go to the cath lab around 10 o'clock that morning. They were going to call her ophthalmologist and let him know that it looked like it was going to happen and it would just be a few hours later than expected. We were very excited and relieved that we could go ahead and go through with the procedures; however, her ophthalmologist decided that he could not work her into his schedule and refused to do the procedure. We decided that since we worked so hard to do these two procedures together that we would go ahead and wait and try to reschedule. We called his office immediately to see when his next available day would be and we were informed that he no longer wanted to be on Emma's case, no longer would perform surgery on her, and he was referring her out to another ophthalmologist.

GREAT!!! Now we were having to start at square one again. We were angry, frustrated, and overwhelmed.  We were just ready for her to have these procedures done. We have  been trying since March to do these and keep having obstacles in our way so to speak.

We learned that the ophthalmologist that he was referring us to is at children's medical center and our cardiologist knew of him and thought  he would be more flexible with unforeseen issues that arise when dealing with critical cardiac kids. We called to schedule an appointment and were able to get in (with Dr. L's help) at the end of June.  Emma had a very thorough appointment with the team at children's medical center. We were there for almost 4 hours and were only not being seen by a person during the 30 minutes her eyes were dilating. They carefully looked at everything in her eyes and determined something that we have not been told by her former ophthalmologists: one at CMC Dallas and the one in Plano who no longer wants her case....Emma is apparently extremely nearsighted.  We knew she was slightly nearsighted, but not to the degree she actually is.

The new ophthalmologist wanted her fitted for glasses and wanted to see her back this coming Monday, July 7th, in order to get more measurements to better determine if surgery is actually needed at this time. We left the office and immediately went to get her fitted for glasses. Her glasses will hopefully be in on Monday, July 7th as well. We know it will be a fight to get her to wear them since she is not a huge fan of things on her face, but we will work hard with her so that she can see more clearly.  

To be honest with you, we were shocked at this news. You see, Emma has been able to do things that would seem insurmountable with bad eyesight. She can work puzzles put, pegs into a pegboard, navigate her wheelchair successfully around corners all through the house, spot us from across the room, and many more tasks that would seem very difficult with her terrible eyesight. However, we know one thing for sure and that's emma does things her own way. 

You might say that we are also a little...okay, a lot upset that this was not divulged to us in the past. We were not too fond of the first ophthalmologist, so we moved to a new one in the Dallas area that was ranked very high and that we heard good things about.  We trusted this person's judgment based on multiple exams, and agreed that surgery was the right route for Emma.  And yet, we've gone this long without providing her perhaps what she really needs. I felt like a failure. I felt like I let her down. So now the new journey begins, we are hoping and praying that we have a plan on July 7. We stressed the importance to her new ophthalmologist that her heart cath needs to be done very soon, so if  he believes after the second eye exam that surgery would be beneficial for her then we need to do it now.

 Scott and I are immensely exhausted from this back-and-forth game and we're ready to make decisions for these next medical steps for our girl. Please be praying for us as we do our best to get Emma the things that she needs and get her a new eye surgery/cath date as soon as possible. 

As always God is good, all the time, God is good.

Emma and her Daddy the day she was supposed to have surgery/cath in June

Mom...I can help fold laundry :)

Emma and her side-kick

Emma and buds

Cheering on cousin Coen! 

New therapy exercise to help with mouth closure...;)

Loves playing/wearing her AFOs