My delayed update- Surgery to Now

Sleeping is her peace and comfort right now

So I have been really bad at posting an update. I forgot what it was like to sit in a waiting room for so long and wait for word. From the time she left the room and returned, she was gone for nine and a half hours. Nigro ended up doing the Ross procedure. His words to us, " The right side of her heart was such a mess, I can't even begin to describe what we walked into." He said even once he pulled her mechanical valve out, the valve still needed to be cleaned up and receded. There was a 25mm cadaver valve put in on pulmonary side and there is minimal leaking, which he told us is to be expected. All in all, the surgery was a success. 

Now lets step into recovery. I asked this question in my Ross support group, because when Lily was finally awake, she was dripping sweat, only once having an actual fever.The question was, is it common for patients to become overheated from circulation change. The response, it is very common for patients who have the Ross, to get overheated very easily. That was only the beginning though, next was the partial collapse of her left lung, from all the excess fluid hanging around. That was why we got her up and walking 24 hours after surgery. She only had 1 chest drainage tube, vs the 3 she usually has, and it wasn't helping her move fluid. Next on the curve ball list, Lily ended up with heart block in the first degree. (Frist-degree atrioventricular block)  So I took the following excerpt from the previous link, because it explains it better than I can. 

First Degree AV Block

First degree AV block is simply an increase in the time it takes for the impulse from the atrium to reach the ventricles. In a normal heart rhythm, the PR interval is in the range of .12 to .20 seconds. In first degree AV block, that interval will exceed .20 seconds and can be as long as .50 seconds in extreme examples. The cause for this delay lies in the AV node. The AV node is suppose to cause a certain amount of delay in the impulse reaching the ventricles to allow for the ventricles to fill with blood, but in first degree AV block, this delay is increased.

Doing crafts in the craft room

They worked quickly to address this, by stopping certain meds, checking her blood gasses and seeing what she needed and what needed to be decreased. It was all taken care of quickly, and 24 hours later, it was it never happened. And then tachycardia creeped in and our missed beats reappeared. Her tachycardia never got above 180's until today and then we hit the 260's. We are currently waiting on her EKG results, which is being done now. Which will also hopefully explain her missed beats. She has 1 to 2 second pauses between beats every few minutes. Lily's heart has always kept us on our toes, which in my language, has always stressed me out. 

In the child life room, the one room in the hospital that brings her joy.

I need to email her main cardiologist and get him in on the loop, I know surgery day, Dr. Nigro was texting him about her and how everything went. But since then, I am not sure if they have kept him up to date on her progress. I am sure he would be able to offer advice and guidance when it comes to Lily, as he has been taking care of her since the day she was born. This momma's nerves are shot, I am done doing the hospital thing, but when it comes to Lily, I will continue to do whatever she needs of me. My beautiful Warrior Princess. 

Surgery day- Open Heart Surgery #6

Today has been a day of a lot of emotions. It started last night. We took a walk and watched fireworks, then we went back to our room to settle in for the night. The tears started, along with her anxiety, the monitor went off because her heart rate was up, and when we tried to ease her fears, it just seemed to make things worse. I finally had her daddy tell her goodnight, and sent him back to the Ronald McDonald's House, which left, Lily, grandpa, and myself in the room. We were waiting for her stepdad to get here. He finally made it, he gave her some love and kisses, got her settled into bed, and then him and grandpa left to go to bed. Normally I turn the TV off and have her go to sleep, but I knew that wasn't going to work last night, so I put a movie on, pulled my recliner chair next to her bed, took her hand in mine, and we both fell asleep like that. I woke up several times in the night, to just check in on her, make sure she was doing OK, which she was. I was awoken at 4:10 to her crying, because we lost the use of her IV for blood draws, it was still usable for meds, but unfortunately, we had to stick her for a blood draw this morning. That set off a domino like effect this morning. After that, everything made her cry. She cried when it was time to use the horrible wipes for surgery prep. She cried when it was time to get into the wheelchair to go do to pre-op. She cried when we met the anesthesiologist and she cried even more when she found out mommy couldn't go back to the OR with her, like I have done the past few times. I wanted to cry with her, I have wanted to cry several times, but that is not a luxury I will allow myself, because Lily needs us all strong right now. She was taken back to the OR at 7:00 am. It took them a good amount of time to get all her lines placed and then to be able to get through her sternum, since she has so much wire from her surgeries. We got the call at 9:00 am that she was finally on bypass. Nigro told us to expect for a 5-6 hour surgery. We still aren't sure what the course of the surgery will be. We came to San Diego with the intentions on him doing the Ross Procedure, but after her cath and some further images he said he wanted to get in there to make sure that was the correct thing to do. He said we might end up retaining her mechanical valve after all.

Trying to comfort her before surgery

Grandpa, Lily, Mommy

Stepdad, Lily, Mommy

Lily & Daddy

My thoughts on it: If we retain the valve, we will continue with life as it has been, and watch and pray that this hole or more holes don't happen over time Which is why I didn't go to Boston, or CHOP, or PCH, because I didn't like the thought of "patching" the hole.

If we go with the Ross procedure, it isn't a guarantee that she won't have to have more surgeries in the future, but it would give her a future of life without blood thinners. Which is what we want for her. Because one day she will want to have children and being on blood thinners is very risky during pregnancy. I know that is way down the line, but as a mother, I try to look at my children's lives as a whole. Lily's life is complex and if we can make that some what easier, somewhat more normal, I want to give that to her. 

I sit here in the waiting room, again, with my heart in my throat. You never realize how long 5-6 hours are, until you are stuck waiting for word on how your world is going to change again.

San Diego-Rady

I meant to post a blog once we got here yesterday, but the trip did not go as planned. For those that follow me on Facebook personally already know what happened, for everyone else, let me catch you up.

Yesterday we left at 10:30 am, I left the other pieces of my heart behind with the remainder of my children, my sister and her husband who is living with us, my nieces and nephew, and my husband. Lily and I started by going to breakfast, which went smoothly. I Should mention at this time that we rented a rental car, as not to put the wear and tear on my vehicle.

We got onto the road and were off, Lily's dad was about an hour and a half behind us, and it truly was a good thing he was. All of a sudden the car started flashing low oil pressure, so I pulled over, we called the rental company and they checked via onstar and everything looked fine, it was just a bad sensor, so we kept going. A few miles down the road, we stopped so Lily could go to the restroom, we came back out to restart the car, and wouldn't you know it, it wouldn't start. Not only wouldn't it start, it was so dead, it locked the key into the ignition. I called my husband, because I was so frustrated, I was afraid I would blow up if I called them. The company ended up bringing us another car, but it took them an hour and a half. By that time, Lily's dad had caught up to us, and had started to give the battery some go juice, and they rental company used a second battery pack to boost the power to jump it. All this time in the heat, (the gas station only had a swamp cooler) had wiped Lily out.

Once we were in the new car, she passed out for a bit, which she totally earned. She never complained, but you could see how hard her heart was working, because I could see the veins throbbing in her neck. The rest of the drive into San Diego was uneventful. We truly enjoyed watching the temperature drop, leaving from the 100+ temps, and arriving to low 70's, was glorious. 

When we first arrived in San Diego

She is starting to look older and older to me. Being able to talk with her more and more about what she is about to go through, makes me realize how grown up she is becoming. Although still a child, she is becoming such a beautiful young lady, and with this surgery, we can watch her become a beautiful woman.

Lily and Dad at RMH San Diego

Lily and Mom at RMH San Deigo

Lily and Daddy snuggles before surgery consult

Lily waiting for lab draws

At the Rady's Children's Heart Center made out of Legos

This was on the board in the surgery consult room waiting for us. I may not be a McLaughlin anymore, but the sentiment was still the same.

 Ok, so there is a story behind this picture. While we were waiting to see Dr. Nigro, Lily picked up this book, and it was pictures with story of heart children. She was just flipping through it, not reading their stories, and came across this photo. She stopped and studied it then looked at me. The words that came out of her mouth next made me almost cry. "Mommy, I'm the one that is sitting out, while my brothers and sister jump behind me. But here soon, that will be me." I swallowed a lump in my throat and kissed her head and said told her yes she will. 

Today during consult we learned that we have to have a cath tomorrow to help balloon the arch in her heart, that the narrowing is not what they want to see. If the ballooning doesn't help, then they will try something different in the OR but it will add length to the surgery. I also felt kind of defeated but it also reaffirmed the choice of coming here, when we were told that her new valve is leaking around it, and blood is once again spilling into the wrong chambers. Several different approaches to surgery were given to us, if the straight forward procedure doesn't work. I will let you know which one is gone with, after surgery is done on Thursday. 

Until then, I am going to go enjoy a little bit of time with my girl before she is checked into the hospital this evening, because her INR fell to fast, and we have to start heparin injections. Thank you to all for your continued thoughts and prayers. I will update tomorrow after cath.

Dreams are not premonitions

Have you ever been so scared, you stop crying from fear, and your next reaction is anger? I keep bouncing between the 2 at this moment. Between utter fear and and raging anger. I had a dream the other night, that it was Lily's surgery day, and she is begging me not to let them put her under. Tears are pouring down her face. She looked at me and said, "Mommy, if they put me to sleep, I will never wake up." I stroked her head and kissed her, while she fell asleep. Shortly into her surgery, I was paged, and was then told, she passed away. She was right. she never woke up. I woke up crying, I know it was just a dream, I know it wasn't real, but it felt so real. 

That is how it feels, daily, I live with the constant fear in the back of my mind, that Lily's heart could stop at anytime. Yet I try to block it out, live each day as a blessing, and thank the Lord for another day with my girl, and of course all my children. I have good days and I have bad days. I try so hard to compartmentalize, so I don't constantly feel on edge, but with this being our 6th surgery, I am so scared. So very scared. So I spend a lot of time on my knees, asking to borrow strength and help with peace of mind. We have 5 weeks and 3 days until we leave to San Diego, and with each passing week, as it creeps closer to us leaving, my brave face is starting to falter. I keep staring at her beautiful little face and memorizing every detail of her, because as much as I know that dream was not real, it still sits in the back of my mind, and has rattled me to the core.

Decision Day- New Beginnings

I have started this blog so many times and have stopped it because I have been angry about it all. Those who don't follow me on Facebook, let me update you. 3 days post-opt, we found a new hole in Lily's heart. It was close to the other one, so we thought it might have just been the stitching came a little undone in that area. Well fast forward from October to April. The mummer we started with has gotten louder and much larger.

Dr.Rhee ordered us to do a CT dye scan, so we could get a better look at her heart and hopefully build  3D model of her heart. We succeed in doing so, but the answers we were looking forward was not a straight forward answer like we were hoping for. The hole in her heart is in the right ventricle and right next to her Onyx valve. The 2 different trials plugs and patches they tried at PCH wouldn't work. One would complete block the flow of the valve. which would kill her. The other one, we would run the risk of it causing a stroke. 

So we reached out to Boston. CHOP, and Rady (SD). Boston suggest coils, which do not work for Lily. She seems to throw them. CHOP suggest a plug for a fix for now, but knows she will need surgery down the line. Rady seemed to be the only one who gave us something to think about. 

Dr. Nigro suggested the Ross procedure, which is where they take the aortic valve and replace it with the pulmonary valve. Then the pulmonary side is replaced with a cadaver valve. What would this mean for Lily? It would be life altering! She would no longer have the mechanical valve, which is the reason she is on the blood thinners. She would be able to play like a normal child. She would be able to have children without the complication of blood thinners, because there are many. If the cadaver valve was to fail, at that point, we would be able to use what is called a Melody or Sapien valve, which would not require blood thinners. They would be able to place the via cath.

As much as we don't want to do another surgery, this hole has happened twice already. The area has deteriorated from the multiple surgeries, the patches we have put on it, have not worked because the area is to thin. This surgery would reinforce the wall between the right and left ventricles. It is a pretty drastic surgery but the best option in the long run. This decision wasn't made lightly but it was made wisely. 

Now, here comes the big part. Could this be done here in AZ at Phoenix Children's Hospital, by Dr. V? Yes it could be. Our preference would be Rady San Diego, Dr. N, because he has done 4 previous surgeries with Dr. C. He was the one who suggested this. I feel that he is the one who understands her heart best. If a surgeon here in AZ couldn't come up with this, why should I trust that he knows her heart best, when he himself has said many times over how "complicated" her heart is. So Dr. R has said he will send to Rady for clinic visit, and for a cath, and when insurance pushes back, which it will, because they will want the surgery done here in state, he will have Dr. V write a letter for the insurance as to why it needs to be Rady.

So now we wait. We wait for the call from Rady. We wait for our lives to change. We wait for Lily's life to change. We wait for our new tomorrow.