Open Heart Surgery #2 Trip - May 2013

I have been putting off writing up this for quite some time. I don't really know why. I think we were just emotionally drained after it all. So here is all the details on what happened. I put a lot of details in for us, just so we remember. So it is REALLY long. Sorry to anyone else that reads the random details.

Sunday evening we spent at my parents house. Since my parents were not coming to California we wanted some time with them right before we left. Chris and my dad gave little Aili a blessing that night, and my dad gave me a blessing. That always makes me feel better.

We left Monday, May 20th in the afternoon for California. The flight went well. Even though we didn't buy Aili a seat on the airplane it wasn't full so we got to spread out. Thank goodness for the ipad and Signing Time. With it, the flight as super easy, without i,t we might have all gone crazy on the short flight.

We landed, got our rental car, checked in to our trusty Best Western and headed over to our friends David and Liberty Woodland's house. We are super lucky to have them so close when we go out there. I didn't get any pictures of them and their cute family. I'm kind of mad about that.  I think we were just really tired and hungry and gearing up for the long days ahead. Liberty made us a nice, yummy home cooked meal. It was amazing, we were so hungry and it was so perfect! We also got to meet their cute new addition to their family baby Ari. He is the most chill, happy baby ever.

The Woodlands were nice to let us use there pack and play once again. We were worried about Aili sleeping in the hotel this time because she is so much more aware and is use to sleeping in her room by herself. She would not fall asleep in the pack and play. She had to fall asleep in our bed with us, which is UNHEARD of!  That has NEVER happened before, so it was really sweet and cute. Then we would move her to the pack and play. She would wake up once in the night and then sleep the rest of the night with us. We actually really loved that because we got to cuddle her in bed which has never happened before. I think she just needed some extra love and comfort in the unfamiliar hotel room.

Tueasday July 21st we checked in for all of Aili's pre-op stuff at 7am. We had a long day ahead of us. I talked with a nurse the day before about everything we needed to do and how it would go, but nothing can prepare you for 7 hours of different procedures and waiting, waiting, waiting. Aili did really well for the long day. We started off doing the blood work, which is awful. We tried to distract Aili as much as possible. But when they stick the needle in and fish and fish and fish for a vein it would drive anyone to crazy tears. It makes me really mad. If you stick them, you should only be able to move it once. So cruel. And you should have the very best person possible doing it. Then we talked with a bunch of nurses and doctors that were preparing us for Aili's sedated Echo. Aili took the sedation medicine really well and fell asleep calmly. We had to leave once she was asleep so we went and grabbed something to eat while they did the echo.

Aili woke up happy. She loved the nurse that was with her and let her hold her. That always makes things easier I think. She wanted to start walking around right away but she was a little tipsy still, kind of funny.

Then we did x-rays, and talked to some more doctors about the surgery the next day. We got all our questions answered and felt really good about everything. It's amazing how much calmer and less stressed we were this time. Just being familiar with everything really helped. Oh and all day we were trying to get a urine sample from Aili. They stick this little bag to them, and put there diaper back on. Well the lady who did it first put it on bad so all the pee leaked onto the diaper, so we put another one back on and planned to bring the sample back in the morning....horrible idea.

After 7 hours in the hospital that day we met up with Chris's parents who flew in that afternoon. We went to an early dinner, and then went to Pinkberry for dessert. Disaster strikes! We notice Aili's diaper is leaking bad!. This pee catching bag created the biggest, most disgusting blow out ever. The bag filled up with pee, overflows, then she poops but there is now where for it to go with the bag of pee. We literally stripped her down in the parking lot. Poo was everywhere, it was so gross. I collected the pee contaminated with poo and hoped that they could get what they needed from it.

We retired early to our hotel room we had to give Aili a bath that night in prep for surgery and we had an early, and stressful day ahead. It was kind of awesome that Aili wanted to fall asleep with us in our bed. It was just what we all needed before surgery. We said a family prayer that night, that was really hard, and tender, and sweet.

Wednesday May 22nd we woke up really early to get ready for surgery. We had to wiped Aili down with these special wipes that makes her squeaky clean and sanitized for surgery. We then put her in some clean PJs, since she wouldn't be in clothes long. Chris's parents came to our hotel room and they gave little Aili another blessing. Chris blessed her that the doctors would be inspired. That she would be comforted, and that all would go well, and she would recover and heal quickly. We then headed over to the hospital. Poor Aili just didn't have a clue. We would talk to her about what was happening, but she just doesn't understand enough yet.

In the hospital right before we went to the surgery center. Obviously Aili has no clue.

 We got to the surgery center and Aili played while we waited. Which gives my the worst anxiety ever because we have worked so hard to keep her healthy, and keep her away from germs and sickness, and now she is playing with all these toys that other kids have touched. But I tried to just let go, she has to play. Oh and I didn't put shoes on her because I didn't think she would be walking around much.....little did I know.

A lady then called Aili's name, we stood up and started to follow her. She got a call on her phone right then, and then changes direction and says, "Actually we are going to wait in here." So we go into a room and waited some more. It was just Chris, Aili and I in this room now. They said Chris's parents couldn't come with us. So we just thought we were waiting for anesthesia to come get us. We waited some more. Aili played still oblivious.

The "News"

Then a lady came in and said she was from the surgery team. They have a big conference every Wednesday morning (which we know about) where they discuss all the cases. She said she had just come from that meeting. Aili was the first they were to discuss because she was the first to be getting surgery that morning. She precedes to tell us that they reviewed the information from her caths that were done in Utah again and that the doctor that does the caths spoke up and said that he felt like he could take care of the issue she was having with a cath, so that she didn't need to have open heart surgery right now. She said he discussed it with Dr. Hanley and everyone else. And they all agreed that they would go in and try that. She said depending on what they see, there is still a possibility she could still go in for surgery but that it was a small chance.

My Reaction

So I will tell you how I was feeling at this point. First off I was really confused. Then I was really bugged. In my head I'm thinking, "Wait no. We came here for surgery! We can do caths in Utah. Why did we fly out here just for a cath again!" We had done 2 caths in Utah and that is why we were there now because the caths were not taking care of the problem. The only new information they really had was the echo she had the day before all the other information they had already so I was confused at why looking at the same information they had before that now they were changing the plan. Literally RIGHT before she was suppose to go in for surgery.

We started then asking lots of questions of why. She explained the pressures they were seeing, and why they decided this. It was kind of a blur, but it seemed to be making a little more sense. We were still really confused, unsure....don't know the word. She said there was an opening in the cath lab at 11. She left and said another doctor would come in. 

Aili hadn't had anything to eat or drink in a long time because of the early surgery scheduled. They let her have clear liquids for a little while, while we waited. She down a ton of apple juice during this time. We went out and grab Chris's parents to tell them the news. At first they were kind of confused too, but then they were like this is great! I still wasn't sure what to think. I had very mixed emotions.

 I know it is really weird to say that you are not super happy that your child is NOT having open heart surgery. We were just SO prepared for it. We were really focusing on all the positive reasons why having this surgery right now was best, and so weirdly it was kind of a let down.

We spoke with some other doctors and the more we talked the better we felt about everything. We then just had to wait until they took us back for the cath. We just sat in the surgery center waiting room. I called my mom and told her what was going on. I think he first reaction was the same as mine, "What?!?". I told her not to tell anyone yet because we just weren't sure exactly what was going to happen yet. Aili ran around and played...in her socks ( I bow my head in shame, so gross). She was so happy, she waved at everyone, and played with a little boy. Grandma would take her out and walk with her down the halls back and forth. Aili loved it. She would wave and everyone who walked by and she stole every ones hearts.

We then went back to prepare for the cath. They gave us some "happy" medicine to give Aili so she wouldn't freak out going into the cath lab. I gave her her sedation medicine so well the day before I decided to give it to her. I FAILED so bad this time. It all came out to fast, and most of it ended up on her shirt. I felt so dumb....like really really dumb. We could tell she got some of it. We could see her it working on her so I thought she would be fine without getting more. Only one of us could take her into the cath lab and I decided to go. She had done really well going into the cath lab in Utah so I thought she would do fine on the little "happy" medicine that did get in her. Then I suited up.

The cath lab is not in on the children's hospital side so we had to walk a ways to the Stanford side. Chris waited outside the doors and I went in with Aili. So remember how I felt awful about not getting all the medicine in her before? Well now I felt HORRIBLE. They do it way different in the cath lab at Stanford than they do in Utah. In Utah I just hold her while they give her the sleeping gas. Once she is asleep I put her down and leave. Not here. First off there were a lot of people in the lab, and she started freaking out when we walked in. Then they made me lay her down before they started anything. It was a nice heated blow up mattress thing I laid her on, but she was not happy, and I felt so horrible for not getting all that medicine in her, or getting more for her at this point. I had this whole suit on with a mask standing next to her trying to calm her and comfort her but she was crying so hard as they hooked her up to all the monitors. Finally they gave her the sleeping gas, and then I left. As I walked out the doors I met the cath doctor. He is.....an excellent doctors. I know that he is extremely experience, and extremely good at what he does, but he is awful and communicating. We were warned the year before about that, but I had kind of forgotten. He basically says to me, with ZERO expression, or vocal inflections, "Well we are going to go in there if the parts they ballooned before have stayed open we will do some work, if not, she'll go in for surgery." I just said okay, didn't know what else to say. But in my mind I was saying "WHAT!?!" That didn't sound like the small chance of surgery that the other doctors had talked to us about. 

I met back up with Chris. Got out of my marshmallow suit and then met back up with Chris's parents. I told them about what the cath doctor said. It really bothered me and made me way more anxious and uneasy than I wanted to be. And the fact that I was the only one that heard exactly what he said was annoying too.

We went outside and sat in the cafeteria courtyard, out in the sun. And we just waited.....not having a clue what was going to happen, just a cath or surgery. No one knew. We weren't even sure what kind of updates we would get. But I was pretty sure they couldn't start surgery without coming and getting us because I'm pretty sure we hadn't signed any consents for that. 

We were all fasting, and as we sat there watching everyone eat at first it was really hard then it started to not bother me at all. We felt like the longer we didn't hear anything that it was probably good news, that they were just doing the cath. After a few hours Chris went in to check to see if the lady in the waiting room had heard anything. And he came back out and said the doctor had called and was done.

We then went back to the recovery area that Aili was in. She was awake and doing well. She had to stay there a little while before she was moved up to 3 west. The hardest part is that she has to lay flat with her leg straight for like 4-6 hours, can't remember exactly how long.  She just wants to sit up and stand up.   The cath doctor came in and told us how it went. It is just hard to listen to him. He tells you the details of it, but you aren't sure if he feels like it went really well or not. Even if he said, "It went well". It's hard to really believe him, because there are no facial expressions of vocal inflections. And he kind of talks over your head with all the jargon. He asked if we had any questions, I kind of did but didn't want to ask him, because I don't think he could clear anything up. At this point I was kind of annoyed and the no food in my stomach was starting to get to me.

We were then moved to 3 West. We were in probably the worst room they have. Last time we were in 3 west recovery it was in a shared room with one other patient. This was a bigger room with 3 other patients, and it was so small and cramped, and so loud they were all still babies, a lot younger than Aili. Good thing we were only going to be there for one night. I was holding Aili trying to make her comfortable and happy. Chris's parents then came up. Thank goodness they were there, such a help to have other people Aili loves and trusts there. I gave Aili to grandma to hold, and Chris and I left to go get some food together. It sometimes just feels good to escape the hospital for a bit knowing Aili is with people who will make sure she is taken care of and happy. Good thing I got some food, because my patience was wearing super thin, and I was annoyed by everything and everyone.

While we were gone the cardiologist fellows came in and talked to Chris's parents a bit on how it went. I guess they made it sound like it wasn't that good. But I feel like you can never really trust fellows, not all of them are good, and sometimes they don't relay information well. I met them later and for sure one was a complete dope. One of the fellows came in talking on the phone later that night. She gave the phone to me and told me it was Michelle Zebrack. She is the main cardiologist we worked with for Aili's first surgery. We really like her. We didn't know if she was at the hospital, she lives in Salt Lake and flies into work, so she has kind of a weird schedule. She told me that she was sorry that today was kind of crazy, with up and down emotions. Then she told me that Dr. Hanley wanted to come talk to us in the morning. She wanted to make sure we were not discharged before we got to talk to him. We were really excited to be able to talk to Dr. Hanley. We weren't really expecting to, but really wanted to hear his take on everything that happened because he is at the top, he is the absolute EXPERT, and could tell us everything we needed and wanted to know.

We spent some more time with Aili, we got her some food to eat, and she ate really well. She was happy to be able to finally sit up. Then it was time for bed. And for the first time ever I didn't have to spend the night in the hospital with her! YAY! It was Chris's turn. Since I had cut way back on nursing her, she was fine without me. I told Chris good luck, because sleeping in the hospital is the worst. Especially with the poor baby next to Aili that cried constantly because there was no one there to hold him. Poor guy. I went back to the hotel with Chris's parents.

I ended up having the worst sleep ever. Something started to bother me that day my nose was itchy I just thought it was allergies. Then that night the pressure in my head built up so much I seriously thought my head was going to explode. I couldn't sleep at all I was in so much pain. I woke up way early and waited for to head over to the hospital.

 Dr. Zebrack said Dr. Hanley would come around 9:30, so we planned on being there at 8:00. As we were driving to the hospital Chris calls and says, "Where are you?!" I told him we would be there in like 5 mins. He said Dr. Hanley had already stopped by, but said he would come back, so hurry! So we hurried as fast as we could stressed that we missed him. Then as we were waiting for the elevator Chris calls and says he stopped by again, and we were still not there! Ah! So then we got there, in what we thought was plenty of time before he was suppose to come. Chris was so stressed that he turned him away twice, like he had nothing better to do! Dr. Hanley said he would go make some phone calls and come back. We waited for maybe an hour. Then I walked into the hall for some reason and there he was! It was so exciting to see him! I was, "Oh hi!" totally star struck. He came in and talked to us for about 20 mins. It was SO AMAZING to talk to him. He was understanding of the fact that we had a crazy emotional day thinking we were going in for major surgery and then last minute having that changed. He speaks totally on your level. Explains everything clearly. And he was SO positive about everything. And we know that what he is telling us is completely accurate, because he is the expert, there is know one else that knows and understand everything he does. It wasn't second/third hand info passed down through doctors.  He made us feel so good about everything and for Aili's future. We recorded the whole conversation, so we could have it to listen to again. I seriously just wanted to give the man a great big hug. I just feel like we should be best friends. I'm so grateful for him and all that he has done. I have no idea how religious he is but we talked about it after he left that he totally carries the spirit with him. He is a very inspired man, who is using these amazing talents God gave him to bless these babies lives. I'm so grateful for him, I can't even express it.

He told us that the cath went really well. They were able to open up the one area they were concerned about (the pulmonary artery branch that supplies the left lower lung with oxygen). We just want that area to stay opened now. He said for the most part the other areas that were ballooned before had stayed opened. He wasn't too concerned about the cadaver conduit that is in her. He knew that she would be coming back fairly soon after her first surgery (not this soon though) because it was really small when he put it in. Just because of some of her unique anatomy that was the biggest they could do. He said that the two stents that are in it are doing really well keeping it big and opened. And that their isn't and major leaking or pressures in the conduit that we need to be worried about right now.

Dr. Hanley ordered Aili to have a lung scan either before she was discharged if they could fit us in, or to come back the day after. This is where they put radioactive material into her blood and then take pictures of where it goes in her lungs. Then they have an idea of what percent of the blood is going to different areas of her lungs. We ended up being able to get the lung scan around I think 1:00pm. So we just waited around. She needed an IV in for the lung scan, so they couldn't discharge us because then they have to take the IV out. But there was really know reason Aili had to be in the hospital, and all she wanted to do was walk around, and not sit in her stupid crib. So her nurse let her be unhooked from all of the motors and we just roamed the halls of the hospital until it was time to go to the lung scan. A nice lady gave Aili this little piece of paper with sky and grass on it will all these stickers of bugs and flowers and suns to put on it. Aili loved it. They were then ready for us to head down to the lung scan, which is on the Stanford side, so it's a ways to walk. So Aili got to be pulled in a wagon. She loved it. She just laid there and ate her graham crackers. She didn't love being strapped to the papoose board. But she had her blanky and her daddy so she was okay. And then she feel asleep. When it was over we transferred her to the wagon and she just stayed asleep. She only woke up because we had to take out her IV to be discharged.

Blanky and Daddy.

The Future

I still don't really know exactly what they looked at or how they looked at it differently that made them change their plans. What I do know, especially now looking back that it was a direct answer to all of our prayers. It was hard to see that right in the moment, because it wasn't the answer to our prayers we were expecting. But when does God every answer your prayers the way you expect? But he answered those prayers in the most amazing way! We didn't even think about NOT having the surgery as an option at that point. We had prayed and blessed Aili that the doctors would be inspired to know exactly what would be best for her. And that is EXACTLY what happened! These doctors were totally inspired! I'm so glad that they listened to that inspiration! Chris joked that that morning of surgery right when he was giving Aili her blessing is the exact time they were in their meeting making their decision. All jokes aside, that totally could be true.

Aili will be getting lung scans and echos every three months. Those will give the doctors a good idea to weather she needs another cath or surgery. After talking with some of the other doctors and Dr. Hanley we decided that the best thing for Aili is to have her caths at Lucille Packard instead of Primary Children's. The cath Dr. at Lucille Packard is extremely experience especially in exactly Aili's condition because they do so many of these little babies/kids there because of Dr. Hanley. And then Dr. Hanley can be right there looking at the cath information as they are doing the cath making decisions on what is best for her, instead of completing the cath in Utah and then sending the information to him later. It just makes more sense, and will be best for Aili. It will definitely be more expensive, but that doesn't really matter.

So when the lung scan and echo show that either the conduit is getting two small, leaking and lots of pressure, or that pulmonary artery they ballooned shrunk back down so the lower left lung isn't getting the blood it needs, then we will do a cath/or surgery. We have no idea when that will be right now. Could be 3 months, 6 months, a year, 2 years.....no one knows. We just have to take it 3 months at a time. I think that is what stresses me out the most. I can't plan it. I can't plan other life decisions around when she will have her next surgery. That is hard for me. I have definitely came a long way this year in just going with the flow, and not expecting anything to go a certain way. When you expect something, it never goes as planned, and then you just feel really let down.

I still can't believe she didn't end up having surgery. It is crazy, and awesome. Just the other day we were out on deer creek boating with Aili, and I thought about how different our summer is going to be because she didn't have to have that surgery. I'm so grateful. Our family and Aili are so blessed. And we are so grateful to everyone who gave us/Aili care packages, and gifts and fasted and prayed for Aili. Miracles happen because of prayers and fasting. I know that for sure. God knows us, he loves us, he is there for us, and he blesses us.