Bionic Girl is Back

 Lily's surgery was a10 hour long event, that kept us on the edge of our seats, along with the next 24 hours afterwards. We were taken down to pre-op at 7:30, as she was slotted for an 8 am surgery. She did good until they came to take her, then she looked at us and started crying and said, " I want to go home." She repeated that several times, until Child Life came in, and helped her find somethings, to take her mind off of what was about to happen. Child Life truly never gets recognized for the work they do, how great they are with the kids, and how much us parents appreciate them. 

After she was taken to the O.R, I'm not even going to lie, I went back to the Ronald McDonald House (RMH) and crashed. We got the call that she was off of bypass and was being closed up, that she would be up to her room in about an hour or hour and a half, this was around the 8 hour mark. So we made out way back over to the hospital, so we would be there to meet her surgeon. Well that hour and a half mark came and passed, so I went to check on her status. She was still in procedure, they said they were having problems trying to get her bleeding too stop. 30 mins later, we were shown to a conference room, so we could meet with her surgeon.`

The above photos show the David procedure, which is what we anticipated to have done, what we were truly hoping could be done. It would have saved the pulmonary valve, that was in that aortic position, but it wasn't the valve leaking at any of the suture lines. Instead, it was the leaflets opening, but not closing completely, so we were almost back to the beginning of her ORINGINAL aortic valve. For those who have just started following, Lily was born with an aortic valve, that only have two leaflets, instead of the three that you are suppose too, so when it opened and closed, the back flow was just as bad as what we were experiencing before this surgery. It was like someone went in and blew up a balloon and stretched it out a little bit, at that point in time, it was no longer savable, so the only left to do, was to put a mechanical valve back in.

I wish I didn't have too tell her. I wish I didn't have to see her face so angry and so sad at the same time. I really wish we never did the other procedure. Yet with all the wishes in the world, you can't fix everything, even though that's all you really want. 

While putting a 24mm On-X valve in, the pulmonary valve, that had been placed at her 6th surgery, had to be replaced also. A 17mm valve was placed on that side and "Should" last for a while. I chuckle at the word 'should' anymore. I throw that word away, when they say it, because it doesn't pertain to Lily, her heart has always done what it has wanted too, when it has wanted too. So when I was told the On-X

should last the rest of her life, I heard; The On-X will last, until Lily's heart decides it's done with it. We'll keep an eye on it and let you know when things go south. It sounds so negative, yet, for those who have followed Lily from the beginning, or know her history, KNOW, what I say is the truth. Lily came back upstairs with one chest tube, which surprised me, seeing I mentioned it several times, that if one wasn't put in on the right side, her lung would partially collapse. So after being upstairs 20 hours, they finally decided a secondary chest tube, would help. Thankfully they did it bedside. She was sedated but did not need to be intubated again. Her right, middle lobe, collapsed. Between 4:30-6:30pm, she dumped 550ml out of that tube. All I keep thinking is, if they would have just listened to me, we could have possibly avoided that all to begin with. You win some and you lose some, well in this sense, we lost, and then we won. All that matters is that it finally came out.

So Lily is not only on aspirin now but also back on coumadin. We need to get back to having test strips and lances at home for her. No bounce houses, trampolines, etc. We are back to life before the 6th surgery, and I am trying to let it all sink in, and not be angry myself, yet I am having a hard time. I am now questioning myself, when I question myself. Do I make the right decisions anymore? To do a surgery, only to ruin a perfectly good valve, and now have 2 problems, I have to stop and look at everything now. Will this fix be a permanent solution for the long run? There is no straight paths when it comes to cardiac kids and with Lily and her complex heart, it is more like a corn maze 2.0.

Yes, I just compared my kids heart to a corn maze. I think I have been married to a Nebraska man for too long, and all the corn, and Cornhuskers, just took over my head for a second.

Now this was just the blog post to bring everyone up to speed with her surgical ventures. I am on duty tonight, so I will make sure to get another one out, as we still so much else going on, and it would make this entry way too long for anyone to want to sit and read.

-J

 

A Little Lost but Always Found

So last night as I typed the update onto Facebook, I knew it should have been on here because of how lengthy it was. So today here we are. The first picture right below is of Lily, Facetiming her sister, who is currently in Nebraska. These two share secrets with each other, share a bed, and are thick as thieves together, they are truly missing one another right now. I have never been more glad that we live in a time where things like this are possible, so the separation is more barrable. Our whole family is divided right now and the strain is felt by all. What I'd give to have all the kids here, especially my husband, and my father, when she comes out of surgery. You never truly understand how much weight is on your shoulders, until they come out and tell you the surgery went well or not. That's when I walk outside and cry because I've held it in for so long.

Today was a pretty rough day. Ok scratch that, it was a rough day. We were supposed to get a CT Dye contrast, so they could get better images for Mondays surgery. Let me just tell you, Lily was so brave, and she was so good, we couldn't be once again, more proud of her, for her bravery. 

She took the first IV try like a champ, on her second try, you could see it wavering, because she was getting sweaty, and you could see it in her eyes, she was slipping. 

So when the second IV was a miss, she lost it. She just threw her arms down and said, "No, no, no, no. They have to do it again, no!" Tears and sweat running down her face.

So when it came to the third try and the vein blew, I audibly swore. I knew I shouldn't have, but I was struggling myself, to hold it together. So the last try was the side of the wrist and that one blew too. So the nurses looked at me and told me they were going to reach out to Cardiology and see what they wanted to do. That gave Chris and I time to snuggle and settle her down.

In the end, they told me to head over to Cardiology, I called and asked if all of us needed to come, or if I could go by myself. Thankfully it was just me, I sent Chris, with Lily, back over to the house, for lunch and a rest.

Our new action plan is in plan.

Lily will be undergoing a Cath on Monday, while being under, they will do

 Trans-esophageal echocardiogram

CT Dye Contrast

ENT will be checking her right bronchial tube to see how narrow it really is

A possible balloon of her arch, depending on if the sent have moved or what's going on

also known as Lily being Lily.

I feel there was more, but I can't think of anything else at this moment. Seeing tomorrow is Saturday, we will go and have her Covid swabbed again, and have the rest of this weekend free. Which at this moment in time, something we all really need.

Thank you to everyone for your kind words, messages, phone calls. I have had a few ask if we can receive things here at the Ronald McDonald House, and yes we can. You can reach out to me for the address and I will get it to you. We truly wouldn't be getting through all of this without the support of our friends, family, and our supporters. Just know, we thank you all in our thoughts and prayers daily.

-Jenna S

#BelieveinLily

 

 

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.