Wednesday, September 27, 2017

I'm a little teapot......

If I could have placed bets on how today would have went, I wonder if I would have bet on the original plan, or the outcome of the day. With how things have been lately, I probably would have hedged my bets and went with the outcome of the day.

I woke up and hit the ground running, which is a bad omen to me, I am usually ahead and have the car packed the night before, but I felt like I had a million things left to do, and was still running through check lists as I was dropping Elaina off at school. Chris arrived to the hospital way ahead of me, which is not something that happens, I just felt like I couldn't catch up. I finally got there, we got checked in, taken up, and settled in. That was the beginning of the end. They asked us when was the last time she took her coumadin. We told them the night before, as we were never instructed to stop it (nor were we ever told to do so during her first cath either, but that is neither her nor there.). Dr. G said, if she is above 2.5 she would be a risk and we would not be able to proceed. I laughed and said, "Of course, we won't be able to." I understand the risk, and I would never put my daughter at that risk, so please don't think I am mad at the fact that, we didn't do cath today for that reason.  

I quickly shot off a text to the surgeon's PA to let her know what we were just told and ask why we were not informed of this. She said she would come down to talk to us. After about an hour of waiting, labs came back, and sure enough Lily's INR was 2.8, and was she was at risk or bleeding out in cath lab. They said we would have to reschedule for a time when we could stop her meds 2 days in advance like cath lab advises. I saw red....I lost it...Not screaming unglued lost it, but a dignified you have messed with me for the last time, lost it. 

We were in on Monday for pre-op testing, only to be told we wouldn't be having surgery but a cath, never once were we told to stop her meds. Cath lab didn't call to confirm until 4 o'clock pm yesterday, that Lily was indeed down for a cath, but never did they mention for her to stop her meds, but even then it wouldn't have been enough time. I could have done more by tweaking her diet, then stopping her meds, if we just would have been made aware. BUT NO ONE TOLD US!! So that was the beginning of it, the communication, or lack there or, how no one tells us anything. How I can call and leave a message, and wait the allotted 24-48 hour time they ask for, for you to wait to hear back from them, only never to hear anything back. So I rinse and repeat, until I leave a very pointed message about how I haven't received a call back, and only then, does my phone ring 15 mins later with apologize. That somewhere between her first cath and now there has become such a large disconnect I no longer trust this team. Because if you can't communicate with me something as simple as not to take medication before a procedure, how am I supposed to trust you with the bigger things. You come in and tell me her heart is complex, well I can list her defects, surgeries, repairs, and what needs to be done right now. I listen to every word you say. This may be your patient but this patient is my child, and I have known her heart for longer then you have known her case. You want to come in and make decisions and wait to clue us into what is going on until the last minute, that isn't going to work and we will get another team. A team is built off of trust and respect and there is not an ounce of either in this relationship as of now. 

A few other things we said, but they apologized over and over again, and said they would try to figure out where the disconnect was coming from. We will reschedule this cath, but we will put a pin in surgery until we get a second opinion.

Tuesday, September 26, 2017

Weighing our options

The frustration is real, you could almost cut it with a knife right now in our household. I have spent a lot of time sending emails, on the phone with my ex husband, sounding off with friends, and asking advice from other heart moms. So let me start at the beginning so you can understand why I am feeling this way, why those closest to Lily are feeling this way. 

Yesterday was pre-op testing. We get there and not even 15 minutes into waiting does the surgeons PA come in and say, "OK, try not to be mad." First off, don't start off with that statement, if you don't want a person to be upset. She continues with, "We have been discussing Lily all morning, and I am pretty sure that Dr.V wants to do another cath before doing a OHS." I am pretty sure my nostrils  flared at that statement because she put her hands up and said, I am not positive, and we'll wait to hear for his final decision, but he is in surgery right now. "

So we waited, several hours mind you, no pre-op testing being done, because since they were not sure Lily was going to surgery, they were not going to put her through blood draws and such, when they can just get such things in cath lab, once they put her under. 

Dr. V finally came in, with his PA, while we were getting an echo, because they wanted a new one, so they had that for her cath tomorrow. Every time I say the word cath, it leaves a bitter taste in my mouth. He was very short, because he had another surgery to get to. He told us he wanted to get a better understand of her heart, because it is very "complex". This is a word I hear them use every time we talk. He said that they need to look at the fistula, the arch, and her hole. To find the best approach in "fixing" them. 

Hold just a second. I know we went in and tried to fix issues in her last cath, but we decided from that last one that she did indeed need surgery to fix these issues. Now, months later, you are unsure all over, and need another cath to look at things again. To put a child under repeated anesthesia is a risk, but a child who has sleepy heart rate also known as Bradycardia, is another risk. Last cath, Lily had a lung collapse too, she is battling with lung pressures. I am slowly losing confidence in the cardiac team, and this is something I have discussed with Lily's father, and now with Lily's cardiologist Dr.R. 

We love Dr.R, he has been her doctor since she was born, I trust his judgement, and he has been the one advocating that she needs this surgery. The surgeons PA even said to Chris and I that they didn't want to call him to tell him that they decided to do the cath vs surgery, because they knew it was going to be a fight. I understand the need to obtain as much information as you can, but her cardiologist even said it was not critical for them to do so, but he is just her cardiologist, not a surgeon. He did say, if the information we gained from this was not in at all helpful, he would help us find other doctors and surgeons for second opinions.    

We have never once had to think of going that route, it truly saddens both Chris and I that we have come to this point, but when you have lost confidence and trust in the team that is in charge of your child's health and wellbeing, and on such a huge magnitude, you do what you have to do. I would move heaven and earth to protect my daughter. I have said it before, I would gladly trade my life for Lily's, if it meant for her to live happy and healthy, as I know any mother would. I started doing research, her original surgeon retired but came out of retirement and is a professor at the University of Alabama, oversees cases at the Children's Hospital of Alabama, granted he may not be her surgeon, but he would have his hands on her case, and to us that would be all that matters. Other wise, we are looking at Stanford, CHLA, CHOP, or Texas Children's Hospital. We will have fresh cath results, echo, but a surgery done 7 years ago. I am listening to my mothers intuition on this, it has never failed me before, I pray it won't fail me now. 

So, Wednesday we have cath, we will be in the hospital 1-2 days, Lily doesn't respond well to them at all.I will update that day and let everyone know what is going on then. 

To everyone who donated on Go Fund me. All that money is going into a savings account, so when we do have surgery it is there. Heaven forbid we do have to travel, it will be needed for that. 

Saturday, September 9, 2017

The long awaited decision

So a while back, in the middle of August, I played a little tug of war with a little PCH. I have not been this frustrated in a long time. We had our surgery consult June 16th, I waited, and waited, to hear final word of what was happening. Yet, it never came, even though I called and left countless messages. Finally PCH called and said that Dr.R wanted us to come in, I was thinking we were finally going to find out what Dr.V decided. Well we did! Dr.R walked in and the first thing he said was, "When is surgery scheduled for?"

Chris and I looked at each other baffled. I quickly regained my wits and countered, "Oh, so surgery has been decided. How wonderful to be finally told of the decision." Dr.R asked if we had not been contacted and I confirmed that we hadn't. He quickly excused himself from the room, only to return with the surgery team. They came in and apologized and said that someone would be in contact with me within a week to schedule her surgery.

Well a week came and went, we heard nothing. I waited for a week longer and then finally called. I was then told, they had no confirmation that Lily was due to have surgery and that they needed to hear from Dr.R and Dr.V before we could schedule anything.

I wish I could say I held my temper, but I didn't. I asked if she was a sever case if this would be happening. That I know that she is stable for now, but just a year ago, we talked that we might have a few years before surgery. 6 months later, her heart declined. I told them she is a moderate case, and I understand that there are other children that take precedent over Lily's case. I did apologize to whom I was talking to, letting her know, I know it wasn't her fault this was happening, but I needed her to see my side as a parent.

Lily's health is declining, she grows tired quickly. She is almost always cover in sweat, even when she is sitting doing nothing. Her cough has returned and is not as bad as it was, but it is getting wet again. I see her run around and play, but she always ends up over doing herself. It breaks me to have to tell her to sit down or sit out.

So with all that information that I relayed to PCH, they finally called me back, 4 times in one day. We set up a CT scan, so we could get pictures for surgery. Before setting that up, we put in for a tentative surgery date of September 25th.

Waiting for her CT Scan

Lily and her daddy, he was talking with her about being brave, she had just found out she was going to need 2 IV's

Child life came in and gave her an iPad to help take her mind off of things, while she was getting her IV.

Me and my sweet lady, taking snapchat pictures, to pass the time, while we waited to be called back for her CT Scan. 

Now we wait for surgery. We will be closing her residual VSD, trying to fix the leak around her mechanical valve, or replace it all together. And then, see if we can do anything about her coarctation, it has mild stenosis on the back end of it, but it is in such an odd spot, we aren't quite sure how to address it. 

I forget how to do this, how to prepare my daughter and prepare myself, for surgery. How do you prepare for something you haven't done since your child was 2. We had a team of doctors we had known since before Lily was born. Now we have a surgeon we know nothing of. I have done my research and I know he is a great surgeon, but he doesn't know Lily, he doesn't know the tricks she throws in surgery. Dr.C and Dr.P were always prepared, they knew she threw curve balls. 

Chris and I both on edge about this surgery. I know it is in the Lords hand, all I can do is pray, pray for comfort and ease, for strength so Lily doesn't see how scared I am. Any words of wisdom would be wonderful right about now. 

Until the 25th, I will enjoy all my time with her, take plenty of pictures, and make great memories. You will hear from me next on the day of her surgery.