iheartRhett.com

Iron Man: “There’s the next mission, and nothing else.”

When we first found out about Rhett’s heart, like Tony Stark (spoilers for Iron Man 1), you may say we were trapped in a cave feeling like there was no way to escape. Luckily for Tony he was imprisoned with a doctor named Yinsen and together they were able to overcome Tony’s condition and IRON MAN was born. We of course had multiple doctors, but Rhett was born and we/they got to work.

Soon after coming to terms and understanding what we were dealing with (Tricuspid Atresia with Dextro-Transposition of the Great Arteries), we found Iron Man becoming a symbol of hope within our little family. At that time, we weren’t very big Marvel fans at all. I had seen Iron Man and some of the older Spider Man movies, but that was kind of it. As the MCU (Marvel Cinematic Universe) expanded and more movies were added to the Infinity Saga, so did our love for the movies. As Rhett grew older he also began to really enjoy the films, starting with Thor: Ragnarok (spoilers for Thor: Ragnarok). Rhett’s favorite part was always when the Hulk came out to fight Thor in the grand arena. I can remember him running through the house running into us and screaming “HULK SMASH, HULK SMASH”.

Through Rhett’s three years we’ve watched Ant Man, the Guardians of the Galaxy, Thor, Spider Man, Black Panther and so many others. They replay on our TV constantly and we have become very big fans of them all and he still gets excited when the good guys win and he gets to see his favorites kick butt.

Doctor Strange: “We’re in the End Game now“

Here we are nearly three years after Rhett was born and it’s hard to explain to a three year old what it even means to go to surgery. He’s old enough to know that something is going on, but too young to understand why it HAS to happen. As a parent, what can you do, except use examples that he knows to try to ease some of the nerves? Over the past few weeks, I’ve found that using the super heroes is working at least a little bit.

The two that have really stuck out in making this comparison to a three year old are Iron Man and Captain America. Iron Man has a scar on his chest too that contains a very special heart within. Captain America was small and frail prior to his “surgery” (spoilers for Captain America: The First Avenger), but then he becomes strong and powerful after surgery.

The Super Heroes in movies come in many different shapes and sizes. Some are born with great powers, some are provided with great gifts, some start out weak and become strong, some start out strong and become stronger. The thing they all have in common is that none of them can accomplish their goals alone. In the end, they always need help from someone, no matter how strong they have become. So, as we go into the next mission, we have our super hero ready to face the battle ahead with a whole team of Avengers ready to lay the smack down on this Fontan surgery!

Rhett is showing fear on occasion, but he is completely aware he is having surgery. He knows it is the last one. He knows we will be there for many days. He knows it’s going to hurt sometimes. But my hope is that I have given him enough comparisons for him to know that when it is over and we can finally go home again that he will be faster and stronger than he has ever been before. In true kid form, all he wants to do is play baseball.

As his dad I couldn’t possibly be more proud and I know he’s going to do great, because as the Mighty Thor once said,

Thor: “That’s what heroes do.”

Finish strong, kid.

Well, here we are. After nearly four years we are to the Heart Catheterization, which is the prerequisite for the big Fontan surgery coming up on July 15th. The letter we received from Cook Children’s summarizes it best.

The purpose of the heart catheterization is to evaluate the structure and function of your child’s heart and/or major blood vessels connected to the heart. In some instances a catheterization is performed to repair a heart or blood vessel problem. A sedative will usually be given prior to the catheterization to relax your child. The procedure is performed under general anesthesia which necessitates your child having a breathing tube placed for the length of the procedure. The procedure is done by inserting long, narrow tubes called catheters into an artery and vein, usually in the groin. The catheters are then passed through the blood vessels into the heart. Movement of the catheters into and thru the heart is guided by x-ray. Once in place, blood pressure and oxygen level measurements can be taken from within the heart’s chambers and blood vessels that are connected to the heart. In some cases, it will be necessary to inject dye material so that pictures can be taken of structure of interest The is a chance that a complication could occur, but the likelihood of this is very low. I will review these potential complications with you in person prior to the procedure. If the catheterization is being performed to repair a problem, I will discuss the details of the planned intervention at the same time. The procedure can last up to several hours, but one of the Cath Lab Nurse Clinicians will keep you informed throughout the procedure if one is available. After the procedure is completed, I will discuss the results with you. In most instances your child will be kept in the hospital overnight for observation.

So we are supposed to be there at 6:00am tomorrow and the procedure will start at 8:00am. I’m hoping everything goes smoothly since the big surgery will be quickly approaching after this one. I’m hoping that somehow Rhett will be less worried about the next one as long as everything during this one goes really well.

We are so proud of this kid and he blows me away every day how he continues to push through the limitations his heart has burdened him with, but he takes in stride. He laughs and plays and brightens everyone’s path he crosses. I hope this next part goes as the doctors have planned and we are all home soon.

Until then, one game at a time.

Don’t forget your Heart Rhett shirts if you haven’t already gotten one. I mean, look how cool this kid looks. Orders are available through Tuesday!

Hey everyone, with surgery quickly approaching in July we wanted to do another t-shirt fundraiser to help with the surgery cost as well as Amanda taking off of work  for 6-8 weeks to stay with Rhett during recovery.

My sister and I designed this new shirt but are using the exact same super soft t-shirt we used in 2015. Hope you like them!

http://iheartrhett.com/product/heart-rhett-shirt/

So first, I’ll get the business portion out of the way and then we’ll get to the semi-professional debut of Rhett the model.

Amanda is and has been so amazing at staying on top of the medical bills and scheduling appointments when it will be the cheapest for us whenever we have the luxury. Apparently, the last time we did our check up at Cook’s she discovered that if we would instead visit Dr. Roten at the Methodist hospital in Mansfield it would save $3,000. Yes, THREE THOUSAND DOLLARS for us to drive an extra 15 miles. Needless to say, we are all about that life now (when we can of course). Conveniently, my mom was working from home so Amanda and Rhett went to eat lunch with her afterwards.

The appointment on Wendesday went great, Rhett is currently at 30 lbs and his oxygen saturation was at 83% which made the doc’s very happy. Dr. Roten said his heart function was looking great and we are on track for surgery in early July as well as a cardiac catheterization in March or April. (If you’d like to read more about it you can click this link.) The heart cath is a pre-requisite to the Fontan procedure in July. I’ll follow up at a later time with my take on the Fontan procedure from a non medical mind trying to read/understand fancy medical terms.

Later on Wednesday we went to Enchant at the ballpark in Arlington. We went last year with the Ylda’s and had a great time, so we decided to go again this year, but the group was much bigger! A large portion of my family and Ashley’s family were there, so it was really good to see everyone even if it was only for a short period of time. Needless to say, 20 people trying to navigate a light maze together isn’t very practical, so we were separated, but I think everyone ended up having a really good time. I’d recommend it to everyone, especially with kids. They have ice skating and about a bajillion christmas lights. It’s pretty magical.

So My sister is growing a reputation for her annual Christmas card and this year she thought she’d parlay her fame into a little love for Team Rhett and his website along with a little shameless self promotion that she’s single! She loves all of her nephews and they all love her back. The photos from the shoot are pretty funny and Rhett seems to be a natural.

I hope everyone has a fantastic Christmas and happy New Year if I don’t get a chance to write between now and then. 2019 is on it’s way and July will be here faster than we’d hope. We are excited and terrified for the next step!

I know, I know – It’s been 997 days since I last wrote an entry. Well, ladies and gentlemen the wait is over. To be honest, the writing process was so important to me as we were going through the early stages of Rhett’s life, but things were/are going so well with him, I think my focus just turned on our family and raising our boys as best I could. I would find myself in the years since thinking every few weeks that I should write something, but as many of you know life get’s in the way. In this case, life was in the way in the best way possible. Rhett has excelled in everything he’s had to face and it just didn’t feel important at the time to stop down and write about it.

Things are great and he is just a normal three year old at this point, minus the scar on his chest, the doctor visits, and the fact that he receives more mail than anyone else in my house. Between the bills and the abundance of parties Cook’s throws for these kids, we get something nearly daily with his name on it or the ever fearful “parents of Rhett Spangler” moniker. Full disclosure, I think that was the first time I’ve ever written the word moniker – something about it felt right to use in this case and after two misspellings and a dictionary.com search, I’m 80% confident I used it correctly.

This kid… He is a bright light in everyone’s day whenever they get the chance to be near him. Just last night Amanda and I were at Walmart and the line was pretty long (I know – total shocker) and there was a woman next to us and Rhett started talking to her and just being a total crazy like he always is. We stood and talked for a few minutes about Rhett – how old his is, how fast he could run, what he wanted for Christmas, ya know the normal stuff. The days of him hanging out with a feeding tube coming out of his nose and warranting somewhat strange looks from our neighbors in the line are long gone. He’s just a fun little kid! Well, as we are waiting in line still – ice cream melting and this formerly extremely patient dad’s temper beginning to flair slightly – the woman comes back up to us on her way out of the store and hands him a little sleeve of animal toys that she had bought in the line while she was surely as annoyed with the waiting process as we were. She mentioned she had a grandson in Abilene that she didn’t get to see as often as she liked and getting to stand there and talk to Rhett was a highlight of her night. We exchanged “Merry Christmas” wishes and it left Amanda and me with a big smile on our face.

When we found out about Rhett and proceeded to go through that portion of our life we gained a new found hope for humanity and the kind hearts of others through the countless well wishes we received: the encouraging words on Facebook, text messages, iheartrhett.com, and the selfless gifts we received. (I really had trouble with the punctuation on that run on sentence, but it’s the internet and not an English paper so you all will just have to live with it.) It seems like every time we go out with Rhett he brings a smile to people’s faces.

He loves to play and laugh and somehow at three years old has figured out the art to the “just kidding” joke. He surprises us on a daily basis with how smart and flat out funny he is and I can’t wait to see what kind of kid he becomes.

Well, 2018 has come and nearly gone and we haven’t had to think much about the surgery looming next summer, but the scariest surgery yet is quickly approaching. When he was born that first surgery was definitely difficult, but now he can talk and share his feelings with us. How do you explain all of this to a three and half year old little kid? How do you explain this to his 6 year old brother? I’m hopeful that when the time comes, God will give me the words to say to comfort their little minds. I have 100% faith in the doctors and the amazing nurses and everyone else who works at Cook’s to take care of their part of the ordeal, but I am really questioning how our roles as parents is going to go. How will we stand there as they wheel him away surgery? How will it feel when we have to make that lonely walk into the recovery room after surgery? How will we hold it together when he wakes up and potentially has a breathing tube and whatever else down his throat keeping him from being able to tell us how scared he is or how much it hurts. When all we can do is look into his eyes and feel the pain through his tears… what then?

I know it’s coming and it terrifies me daily. The only way out of this is through it and I know he’ll do amazing, he always does, but good grief this is going to suck. There’s no other way to say it really. I know in the end we’ll all be fine and he won’t even remember this probably when he grows older. The plan is for this to be last surgery so long as everything goes well, but that doesn’t make it any easier. I wish we could just go to sleep for 6 weeks and all wake up after it’s all over, but I also know we’ll have to be strong, like we always seem to find a way to do. Amanda is forever the perfect teammate and we’ll manage to get through this and a lot of that will be thanks to you all who have had our backs through this entire thing. We are excited to see what 2019 will bring for this little boy, but we’ll also be trudging towards the dark cloud that is looming late next summer. Until then, we’ll cherish all of the memories we are making and looking forward to all of the ones yet to come.

I can also promise it will not be another 997 days until the next update! My sister and I have already started designing the 2019 fundraising shirt. It still warms our hearts to see people wearing the original team Rhett shirts!

Rhett will be turning 6 months old in less than two weeks! It’s hard to believe how fast time has flown by since bringing him home. Now that we have gotten the tube removed he has just been the happiest little kid. It doesn’t even really feel like anything is wrong most of the time and for the most part he just acts like a normal baby… well a normal baby who takes multiple medicines throughout the day and has a scar on his chest. Watching him grow and learn has been one of the most rewarding experiences of my life. I can’t wait to experience all of the things to come over the next few months. We are still working on getting him to sit up on his own, but he has gotten much stronger at holding his head up.

He has no idea that his little life has been so different than a normal kid. I hope that when he truly grasps the idea someday of what he has been through that he will wear his scar as a badge of courage and strength. I’m not sure how to explain it all to him one day, but I can’t wait to tell him about all of the amazing feats that he has accomplished and about all of the love that he has around him. I have dreams that he will someday become a heart surgeon and save lives like Dr. Tam has done for him. Having the experience that he will have had would be an amazing dynamic for any parent that will have to walk the same road that we have.

Speaking of other parents, Amanda was nominated to be a member of the MAIN Family Advisory Council! We asked staff to nominate parents who they feel have handled their child’s treatment effectively, are well-spoken, a good advocate for their child, can see beyond their own experiences, and listen and respect other perspectives. Congratulations on being selected as a parent candidate; this is a great honor! The Family Advisory Councils are made up of parents and staff that look at ways to improve family experience at Cook Children’s and give input, from a families perspective, on policies and procedures. I couldn’t be more proud of her and I’m happy to say that she has accepted the nomination and is currently training to be a Cooks volunteer. I think she will do an amazing job and I know she has become very passionate about giving back and helping other families.

After Rhett’s appointment with Dr. Roten the other day we “casually” ran into another couple who’s son has been in the hospital for a few months after his first surgery. They were finally getting to go home and they were going to be venturing out with a feeding tube. Apparently Rhett was one of the first few babies who was actually able to go home with an NG tube, which we didn’t really know. The doctors have asked a lot of feedback on our experiences and anything they could help with for future parents of NG kids. We sat and talked with them for 30-45 minutes and watching Amanda explain everything made smile. She is so calm and positive even when explaining the pains that went along with it, but what we always try to include is that it will get better. We don’t sugar coat it either. The first part sucks, but it DOES get better. I know she is going to be so good at her new volunteer position at Cooks.

Rhett is growing slowly but surely. He’s just under 13 lbs now which puts him squarely in the 1% of weight for babies his age. Hopefully he’ll continue to grow and get stronger as time goes on now that he is eating everything he needs from his bottle. We have even begun to feed him baby food! So far he has pretty much liked all of them, but who could blame him? Have you ever smelled formula? It smells like cardboard and old socks that sat in the washing machine over night. Blegh!

Talon is absolutely infatuated with his little brother and loves to make him laugh. Amanda and I can already see the special bond the two of them have and our favorite thing is the way Rhett laughs at Talon. It’s a different laugh than when he laughs at anyone else. I know Talon will set a great example and be protective of his little brother. I’ve said it before, but watching them grow up together will just be so great. Talon starts T-Ball this Monday and we’ve had practices and all of that and it’s been nice to have something other than work and come home to do. I was talking to Amanda the other day and explaining to her that it felt like real life was beginning. I always dreamed of having a family and kids, but the baby baby stuff is for the birds… Let’s play ball! I’ve really enjoyed getting to help with practice and Talon seems to really like playing baseball! I’m sure as soon as Rhett is able he’ll be so excited to get to play catch with his big bro. 

I’m thinking about doing a section the website for parents who are finding out that they have a heart kid. Somewhere to have specific posts about things like the NG tube, sleeping arrangements, what to bring to the hospital, things like that. I know Amanda and I just feel a calling to help others who are going through this and I think it could be a good place to get a parents perspective. Maybe even a place where people could send us an email if they have questions or just want to vent. I know we would have appreciated somewhere to go like that.

We only have a few of the Team Rhett shirts left. I think we are going to do a new design before Rhett’s 3 year old surgery, so we won’t be ordering any more of these. We have some in all of the sizes except 2XL if anyone is interested.

Until next time,

This kid is seriously so cute.

Jordan

Rhett has really been excelling since coming home after the Glenn. He definitely suffered through the Glenn headaches but it seems to have subsided over the last week or so. He has really improved his eating and it was a pretty special moment that Amanda and I shared the night before the appointment when Rhett drank all 85ml of his bottle. Watching her mom is one of my favorite hobbies. One moment she will show pure determination and the next she will switch to complete nurture mode to make sure he and Talon are okay. She’s the bee’s knee’s.

Our first appointment was with Chick Fil A. Haha, kidding. (but we did eat at CFA breakfast at the hospital). Our first appointment was with Dr. Roten. Before meeting with her the tech’s checked all of Rhett’s vitals and did an EKG, to which were very happy with the results:

11lbs .5 ounces

Blood Pressure 110/69

24″ Tall

and a big ol’ 90% on his oxygen saturation!!!

They took us back for an echo and then escorted us to go get an xray and then back to the room to wait for Dr. Roten. When she came in she said she was very pleased with what she saw on the EKG, echo and xray, so that was good news. She said that his heart is performing well, but that she is still hoping for it to work a little bit better. But hopefully that all comes with him growing and just getting stronger in general.

Next we talked about his eating. She said that as long as we can get him to eat between 550ml and 600ml a day that he could come off of the tube. Obviously that is exciting, but he still hasn’t quite managed to just completely kick butt on eating. He’s really doing well and we are pleased with the progress, but for now we are going to leave the tube in until he actually does eat 550ml during the day. We have moved up from 85ml per feeding to 100ml per feeding and Dr. Roten said we can start introducing rice cereal!

It’s funny because when all of this was happening all we were thinking about was that first surgery. We didn’t even really process that Rhett is going to grow up and do things! We are pretty sure he has been teething because he’s been munching on his hands, he laughs and smiles, and now he is going to be eating from a spoon! Every small milestone feels like we’ve climbed to the top of the mountain and we are over the moon excited about the progress he has been making.

After meeting with Dr. Roten, Crystal from Dr. Tam’s office came in and checked on Rhett’s incision and said it was looking great! We left there and went and picked up Raisin’ Canes chicken to have a late lunch with our friends from Team Dax. It’s always great catching up with them and we are so thankful to have someone who we can be close to who understands everything that we are going through. I think we have all been able to be each others voice of reason as we all tackle this together. Dax is doing really good too! He had his Glenn last week and was already up on P3 to recover.

We are finally finding a new normal and he has started sleeping in the co-sleeper next to our bed. 4 months Amanda and I went without sleeping in a bed together and it has been so nice to get to share our bed again. Talon is finally starting to get used to being home I think too. He’s done really good about staying in his room for most of the night, even though is crazy and still stays up way too late. It’s hard on him I think to have to go to bed when he knows we are still in the living room with Rhett since his last feeding before we go to bed is at 10:00.

I’ve been having to work really late over the past few weeks and Amanda has been really doing amazing and keeping the family and house in order until I can finally get home. I’m hoping that things will slow down here soon so I can leave on time and spend time with the family.

Next appointment is with Dr. Roten on March 21st!

ECI (Early Childhood Intervention) is coming out to hour house on February 16th to check on how Rhett is developing, so I’ll post an update after their visit. Rhett is still a little slow on holding up his head, but he seems to get better and better every day. Ready for him to be big and strong!!

-Dad

Amanda and I finally made it to bed at 1:30 Sunday night and we had to be up at 4:45 to get ready to take Rhett to the hospital for his Glenn surgery. Amanda had to get ready and I had to load the car but we also had to give Rhett a bath before we left. So in the car we were and we headed into Cook’s and actually arrived EARLY! Anyone who knows Amanda and I know how much of a feat this was. We checked in and they did all of Rhett’s vitals again and had us sign some paperwork.

At around 9:00am they we took Rhett back to surgery and sent him away with the people who would help in the next step of saving his life. We knew he was in great hands, but obviously it was a very tough moment. We walked back to the CICU waiting room to be with our many family members who showed up. We went and had breakfast while they were getting Rhett ready for surgery and then went back to the room for a bit and they gave us a call at 11:21am that the first incision had been made and they were ready to start. The waiting now began…

We hung out for a bit and tried to lighten the mood with some Uno (Amanda and I have been hooked lately). Around noon we went down to the Camelot Court with about half of our crew and had lunch. FYI if you have a party of 12, noon is a terrible time to try to find a table. We received another call while at lunch that everything was going great and they were getting ready to put him on bypass while Dr. Tam did his miracle work.

So back upstairs we went to wait longer and we all just hung out and tried to pass the time. We received the final call at 2:10 that Rhett was finished with surgery and that everything went according to plan! They told us to go to the other waiting room so we could see Rhett get wheeled past on his way to the CICU. It felt like hours we were standing in the hall waiting to see our boy come through, while our family waited behind 8 small glass squares to catch a glimpse as well.

After they wheeled him past our family went to back to the other waiting room and all that was left in the room was another family. Amanda and I stayed behind and sat down to talk with them. Their son was about to go into his Norwood surgery with Dr. Tam and we could see the fear on their faces that we recognized as if we were looking into a mirror three long months ago. We wanted to give them some guidance that we hoped they wanted and we talked for about 10 minutes describing how our initial visit to Cook’s went. We showed them pictures of Rhett immediately following surgery to give them an idea of what to expect and gave them the website and facebook page to go back and look at all that had transpired over our 33 days in the hospital with Rhett. I totally facebook stalked when we got back and saw that the momma had liked Rhett’s page and I sent her a friend request hoping that they wouldn’t take it weirdly. We knew we’d see them around and I knew how nice it was to see a friendly face of someone who has been through the journey before.

We were finally able to go back and see Rhett about 45 minutes later. He wasn’t nearly as swollen as he had been the first time and that was a very appreciated sight. He looked so much better, but he still was hooked up to countless wires and tubes and our little boy who had gone to bed smiling was laying there in what was obvious discomfort and pain even through all of the medicine that was being provided. It’s pretty safe to say that it never gets easier to see. We paraded our family in and out and they all agreed that this time he looked much better, but now the battle was really beginning.

He was bleeding a little more than they had hoped out of his chest tube, so getting that to slow down was goal number one. They gave him some medicine to help with all of that and over the next few hours it made a big difference. They had told us originally that they had hoped to take him off of the ventilator that evening, but it just wasn’t in the cards. He was still having trouble breathing on his own, but he was stable and that’s what counted.

They gave him a blood transfusion to get him more red blood cells for the hemoglobin to carry more oxygen. This helped, but they would have to give him a few more over the next day.

We had a pretty amazing experience as we were carrying in way too many bags from the car as we were stopped by someone in the NICU waiting room who asked if we were Rhett’s parents. She had found the blog and facebook page and thanked us for showing the reality of what to expect. The real reality that not many people have shared with the pictures immediately after surgery. Her little girl was getting to go home on Tuesday, she was very excited.

As we were talking to her the mother and father of the people we had talked to earlier that day stopped and chatted along with us and they were very thankful that we had taken the time to speak with them earlier and said that it had made their kids feel so much better. There are no thank you’s as sweet as knowing that you have truly impacted someone’s life. Their son is now in the CICU with us and he is doing very well.

When we woke up today (Tuesday) they noticed what looked like a lot of extra fluid and put him on diuretics to make him pee more to get the fluid out. He was awake a little and the saddest thing ever is when you can see him making a cry face but there is not sound because of the ventilator being down his throat.

They did an ultrasound and found there were pockets of blood around the chest tube, but not enough to warrant another tube to be put in. Instead they increased diuretics. Rhett woke up for a little bit and watched TV for a few minutes. For a small second I hope he was reminded of being home and found a little comfort.

Dr. Roten wanted to take a closer look so she came in and did an echo because she saw less flow to the left pulmonary artery. They gave him temporary paralysis medicine so they could get a better look. Once she was what she wanted she liked what she saw and told them to start him on heparin which is a blood thinner to eliminate any clotting that might be forming where the central line (where medine is administered) that goes into the Glenn. She said his left ventricle is stronger than a stand-alone right ventricle, but still not as strong as she’d like the left ventricle to be. Part of the surgery is combining the left and right ventricles to work as one.

Talon got to come visit and he wanted to see his brother and give him a kiss, he had to settle for barely rubbing his head, but of course with him being a kid that was enough for him and we was ready to go play games with Aunt Jadi.

Amanda and I went to dinner and when we came back they were changing the tape on the ventilator and Karen (our amazing nurse for last night and tonight) was taking great care of him and gave him a bit of a “bath”. I’m kind of a night owl so I always end up staying up late and hanging out with the nurses. I love talking to them about why they chose the career they did and what their ultimate goals are. Hearing their answers is just more assurance that we are right where we need to be. The love they have for what they do is inspiring and it’s so comforting knowing that Rhett is under their care. Nurses are the best.

The goals for tonight are to keep him stabilized and let more fluid drain out to reduce his swelling. We are hoping that the doctors will like what they see and can take him off of the ventilator. His oxygen percentage that they are giving him is down to 21% and he his holding steady in the 70’s on his saturation.

Overall things are going well. As with last time Rhett seems to be about a day behind schedule with things such as removing the central line and ventilator so we are hoping to see some major strides tomorrow and he can wake up a little bit and not have so much stuff around him and definitely not have a tube going through his nose and down his throat.

I’d say we were better prepared for this time and it’s been a very business trip like mentality from start to finish. We can’t express enough how great everyone has been. We wouldn’t want to be anywhere else. Love you all so much and appreciate all of the comments on Rhett’s page. We read every single one and they fill us with joy to see the number of people praying and thinking of our dear Rhett. Can’t wait to post new pictures tomorrow of him looking much better!

Goodnight!

Today we went to the hospital for Rhett’s pre-op visit. It was a really different feeling than the last time we went in for one of these. Obviously we are still worried, but it just felt a lot different having already been through the first surgery and seeing that everything does end up okay. Rhett was there with us and was quite a little celebrity around there. It was so fun to see some of our old caregivers and hear them talk about how great Rhett looked. Some even went to find other people they had known to “work” on Rhett and brought them by to take a look. If you have to go through all of this mess, I’m glad we ended up at Cook’s. I think Amanda is mostly glad because they have cookie Wednesday’s and apparently they’re pretty good. Wait… Now i’m starting to wonder if she requested this day for the appointment just for the cookies…

We got there around 11:00 and neither of us had eaten anything all day so we swung into Chick Fil A and scarfed down some lunch. Rhett was in a great mood all day and he was smiling and talking up a storm. We went to the registration area and checked in and then we were escorted to an area where they checked all of Rhett’s vitals and they were very pleased. His O2 sats were at 85 which is great. They took his blood pressure and checked out some of his developmental things like holding his head up and things like that. He’s a little behind on the neck strength, but mostly because “tummy time” has been nearly impossible with his reflux issue (aka yack attacks). But they were still pleased and were very noticing of how aware he was. He was just looking around as people started talking and moving around the room. It was definitely a proud dad moment.

He’s been through so much already and we’ve really only hit the tip of the iceberg, but I know he’s going to excel all throughout life thanks to all of the great people around him. He’s 23.6″ long now and weighs 10lbs and 2 ounces, so he’s officially passed my birth weight of 10lbs 1 ounce! It only took him 3 months. His head measured a little under 16 inches which is totally normal for his age. They listened to his heart and could hear his unmistakable murmur (also a good thing).

Surgery has been schedule for 8:00 am on Monday 1/18 and we have to arrive around 7:00am. They told us we could feed him until 1:00am and give him pedialyte until 5:00am. They’ll get started on prepping him for surgery and the actual surgery should start around 10:00am and last 3-4 hours. They’ll give us a call every hour for an update and whenever they make the first incision. They’ll be cutting into the same spot as they did last time so they said it could vary on how long it takes depending on the scar tissue fro the first surgery. They are going to give him bubblegum scented anesthesia so it doesn’t smell like “old beach balls” as they said. Odds are that he’ll need to be put on bypass as they did last time, so that won’t be any kind of surprise to us.

They said they typically will close his chest up following the surgery before he goes back to his room in the CICU. We are hoping that we’ll get to stay in our same room. We went on a “tour” of the CICU again and got to see some of our favorite people!

Being a veteran of this process is really nice because we know what to bring and what not to bring for our stay in the CICU, which should range from 7-14 days if everything goes smoothly. Obviously the sooner we can get out of there the better, but we’ve been pretty good at being patient. They will keep him there as long as he needs to stay. Except for that time they kept him Christmas Eve, haha we weren’t quite as patient that time.

So, you may be asking. What is the procedure? The procedure is called the bi-directional Glenn. “This operation usually is performed about six months after the Norwood to divert half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle. The shunt to the pulmonary arteries is disconnected and the right pulmonary artery is connected directly to the superior vena cava, the vein that brings deoxygenated blood from the upper part of the body to the heart. This sends half of the deoxygenated blood directly to the lungs without going through the ventricle.” (http://www.pediatricct.surgery.ucsf.edu/conditions–procedures/bi-directional-glenn-operation.aspx) You’re dang right I just inserted a cite in my blog post.

Something like what is pictured below.

We are ready to get our kiddo fixed up and this is the next step. Obviously it’s scary, but we know he is in great hands. We visited with Dr. Tam today about the surgery and he walked us through it step by step and made sure we understood as much as we could.

Rhett has been in such a good mood since they put the stent into the shunt and we are hoping that he’ll continue that after surgery. However, because of the increase blood flow they said we should expect him to experience headaches for a few weeks after the surgery. THAT we are not looking forward to, but this will be the last surgery until he is about three years old. At least we are HOPING this will be the last one. I know Amanda and I are both ready to just have a baby and not have to stress as much about the next surgery at least for a little while. The third surgery I think will be the hardest because he’ll be able to talk by then and we’ll have to actually listen to him be afraid and we’ll have to figure out some way to make him feel okay about everything, but for now…let’s just have a baby around. As with everything else we’ve all endured, we’ll cross that bridge when we get there.

Here are some pictures from today!

So Amanda was checking Rhett’s O2 levels today and noticed they were a little low so she got in touch with the nurse who reached out to the doctor and instructed us to go ahead and bring him to the ER and they’d be aware that we were coming in so they could do some tests. They did a EKG, Echo, X Ray, and blood work and everything came back good, but they are going to keep him overnight to monitor his oxygen. Momma is feeling good about things and is going to stay overnight with him. I’ll add more to this post once we have some more to add to the story!