Update & Archive

Thanks to social media, we have not used this blog in so long. I find Facebook & Instagram much easier to use and post pictures, so there is much more Jensen content there (check out the Willis Family Heart Facebook group). I will be archiving this blog but wanted to post a Jensen update first. 

He is now 9 years old. In 2020, we moved from our home in North Carolina to Austin, Texas. This means we also moved his care to Texas Children's. They have a phenomenal reputation, but it was so difficult to leave our family at CHOP and the doctors we loved dearly in North Carolina. 

                                               

Jensen is in 3rd grade and is still a lover of all animals, especially our 1 year old bernedoodle, Broccoli. He is embracing life in Texas and is often seen wearing his cowboy hat and singing along to country music (Tyler Childers and Cody Johnson are his favorites). He has an IEP at school to help him with reading, math and social skills. We are still seeing psychiatry regularly and adjusting his medications as he ages. Emotional regulation and changes in routine are still a struggle. However, he has come such a long way in this area and we are so proud of how in-tune he is with his emotions. 

                                                

He recently had a cardiac MRI and we received a great report. His cardiac function looks great and he has a leaky valve that has been stable for years. He still has several stents and they all have excellent blood flow through them! All good things! 

                                                

We are so thankful for his health and happiness, especially with all the changes in the past 2 years (a pandemic & a cross-country move?! It was nuts!). 

                                       

As always, we appreciate your prayers and well-wishes for Jensen. We cherish every milestone, every birthday, and every fun memory we get to make with our miracle boy. 

Angels

Today started off with a terrible phone call from my dad. My grandmother passed away early this morning. She was a cheery, quiet, and lovely lady who will be greatly missed, but I'm so happy she and Grandaddy are together again. She sent us the most gorgeous day of sunshine here in Philadelphia! Thanks for that, Grandmomma :)

Since we had a free day we tried to make the best of it and let Jensen have fun. We explored the city and he ran wild in a few parks! After his nap we went swimming and he was exhausted after all that playing!

Jensen will have a busy day of pre-op tomorrow. We will also be meeting with all of the doctors on his team. We will find out tomorrow what time he is scheduled for surgery on Friday.

Please remember my family in your prayers as we mourn the loss of my grandmother. Please pray Jensen has an easy blood draw and cooperates for his echo and X-ray. And don't forget that we are asking everyone to go RED FOR JENSEN on Friday! Wear red for Jensen to show your support and please send us pictures :)

I'm confident that Jensen is going to do great during his last stage of the Fonatn palliation because he has an army of angels watching over him and he has an army of people all over the US praying for him and sending us their love. Thank you all ❤️

The final stretch

We are in the home stretch of preparations for the Fontan. We leave for Philadelphia in a week! It has gone by so fast! We are trying to squeeze in as much fun as we can while avoiding crowds...which is pretty hard to do. After the stomach virus hit our house last week, we decided to cancel all of our outings we had planned, including Sesame Street Live and his weekly therapy appointments. We were super disappointed to miss out on those things but its just too risky this close to surgery. 

We have to keep our boy healthy!

Jensen has been doing some pretty amazing things lately...like counting to 10 on his own?! Seriously, how smart is this kid?! He also had an awesome weekend with his Gammy and Poppy, they wore themselves out! Then Jensen had his first adventure on a slip-n-slide! It was all fun and games until someone bashed their head on the ground! haha! Jensen was fine but that definitely ended our slip-n-slide escapade for the day!

As per usual, I have a mile long list of things to accomplish before we leave and no motivation to do them. I would so much rather spend time with my little man outside! There are a few things I will need YOUR help with though!

1. Please put Jensen on every prayer list from Kingsport, TN to Monterey, CA and everywhere in between. Specifically, pray that Jensen has no neurological complications, minimal bleeding from his extensive scar tissue, and a successful operation. He is very much at risk during this surgery and we know he is a stubborn kid, so pray that he cooperates with Drs. Fuller & Nicolson!

2. We are asking everyone to go RED FOR JENSEN! On the day of his surgery, June 6 (D-Day of course...how appropriate...) I would love for everyone to wear something red to show your love and support for our boy! Post your pics on our Facebook group, Willis Family Heart, or on the

 Go RED FOR JENSEN event page. 

Fontan prep

Oh my how time is flying by! We are well under way for preparing for the Fontan. June 6 is coming up faster than I would like, but we are ready to get it over with!

Jensen has been making huge improvements in speech and is starting to say words on a regular basis. He is hilarious and is always trying to make us laugh! We are busy making sure we cram as much fun in as possible before the big surgery day. We have gone to the zoo a couple of times already, we went to the beach, we have had ice cream for dinner, and late movie nights with Jensen =) Hey...this kid gets a free pass for fun for all that he's about to go through!

We will be posting more updates as we get closer to the Fontan date, letting you all know the progress  of how things are going. Be sure to add yourself to the Willis Family Heart Facebook group so you can see more Jensen cuteness! While we are in Philadelphia I will probably be doing more quick updates on the Facebook group since it is so much easier to use and upload pictures =)

Thank you all for your prayers as we prepare to send our brave little man back into surgery <3

And lastly, for those of you who have asked about what Jensen's surgery specifically entails, here is a much better explanation of the surgery than what I can explain! 

Report from the pre-Fontan cath

Hanging out with daddy before the cath started

We had to be at CHOP at 10 on Friday, which meant Jensen was a very hungry boy. He actually did well with the whole NPO thing so we were relieved that he was easily distracted from wanting food. He was given pre-med which made him giggly and groggy, he was also waving to everyone and being super sweet. Anesthesia took him down about 11. 

He was looking a little bit silly from his pre-med

He was finished with the cath at about 1:00, which was faster than we expected. Jensen slept for a bit when he was wheeled into the recovery room but woke up not long after that. We had warned everyone on his team that he doesn't wake up from anesthesia well and would require extra doses of meds to keep him calm (this isn't our first rodeo).  When I say he doesn't handle it well, I mean he woke up angry, ripping at his IV, bending his legs (a definite no-no after a cath), bowing his back, growling, screaming, needing 3 people to hold him down, coughing, gagging.... It was so heartbreaking to watch. As his mom, I almost couldn't bear to see him in pain and scared. But that moment of weakness quickly passed when I realized that no one was moving on getting him the help he needed. I think everyone was shocked that he was so aggressive they weren't sure what to do. A few nurses and nurse practitioners got their egos bruised because Jeremy and I called them on being indecisive and not taking control of the situation. It was intense and scary and maddening and I almost lost my ever-loving-mind. Finally, Jensen was given a dose of morphine, he fell asleep in my arms and stayed that way for the next 4 hours. 

Just coming back from the cath

During that time we met with his nursing staff and the anesthesiologist to go over the procedures to order medication and why my child's care was not handled properly. We had told many people on his team that he would wake up like he did and they had no plan in place to handle him when it happened. These types of incidents prove that no matter where you are, world's best hospital or not, your child's care has to be at the forefront of your mind at all times. You have to be their advocate because there are many chances for them to fall through the cracks and I'll be damned if that happens to my kid. (Please note: these things happen and while I hate that it happened to Jensen, we still love our CHOP people. Yes we have to get a little aggressive sometimes, but we still trust this hospital with Jensen's life. We chose this hospital for a reason and in our minds, they are the best possible place for Jensen. We <3 our Philly team!)

Discharged!

After that fiasco, Jensen woke up much more calmly. He was hungry and thirsty and ended up drinking too much juice in a short amount of time. He threw up on just about everyone in the room, went through 4 different hospital gowns,  many bedsheets and towels and threw up in the elevator twice. He was so miserable but thankfully a dose of Zofran worked quickly for him. Once he got past the nausea he seemed to be feeling like himself. He ate some crackers and slept some throughout the night. By 8 am Dr. Rome had rounded and we were out of there by 9 am Saturday morning! 

My Philly boy eating crab fries!

Dr. Rychik & Dr. Rome were very happy with how his pressures looked in the cath. He had NO areas of stenosis, no need for any ballons or stents, only one small decompressing vein that they were able to coil off. That brought up his sats and he looks much more pink these days! Things looked so good that Jensen is no longer on Lovenox, only on aspirin (thank you sweet baby Jesus!). We also get to pick when we want to do the Fontan! We were totally shocked that everything went so well and that we get so much flexibility in the timing of the next surgery! 

Airplane selfie

 We could not be more blessed! Jensen is still a little sore but back to his old silly self. He's pink and happy to be home! Thank you all for your prayers and messages, they mean so much to us! We will keep you all updated as we start to plan the Fontan, but for now, we are going to take it easy at home after that whirlwind trip!

 

Best traveler ever.

Report from our pre-op day

Jensen is sleeping peacefully in his own bed tonight! And by his bed, of course I'm referring to the king size bed that he dominates while Jeremy and I are pushed to the edges...either way, Jensen is home =) Yay! 

Our wild man in the hotel

To do a re-cap of our trip, I will start with pre-op. At 8 am we had to be in Neurology for an EEG. Having someone in your face, scrubbing & measuring your head, first thing in the morning is not pleasant. Jensen absolutely had a meltdown until the poor EEG tech was finished placing all of the wires. He turned 50 shades of purple!! Thankfully he did well for the rest of it since he was able to sit on my lap and watch Thomas. 

He is the best kid to travel with. Seriously. He's amazing!

Next we saw Dr. Licht, his neurologist. He was absolutely amazed at how huge Jensen is and how well he was doing! He read his EEG and it came back totally clean, which means so signs of seizure activity. He did a physical exam and observed Jensen while he was being especially cute feeding his bunny, babbling constantly, and running to chase toys. I could not have been more thrilled with how this appointment went! Dr. Licht is so inviting and friendly that he made an otherwise over-stimulated Jensen very calm and comfortable. Love.That.Man. 

Snuggling with Daddy after his EKG

We discussed the possibility of some type of preventative treatment for Jensen's seizures during the next surgery. We decided that a post-op EEG would be the best way to ensure he isn't having seizures and that if he is, we aren't masking it with any prophylactic medication. He also talked to us about risks for another stroke, which for Jensen, are very low since his stroke was not caused by a blood clot. He also went over all of the "milestones" that Jensen has achieved and told us that he sees no problems with Jensen's slower start in speech. He thinks he will be right on track once he gets started talking. We always feel so relieved to talk with Dr. Licht! He is so smart and knows Jensen's noggin like no one else! 

He was such a good boy for his echo. And what happened to my baby? He looks so grown up!

Next we went to the cardiac intake center for pre-op. This includes EKG, chest x-ray, echo, & blood work. Jensen rocked them all! We were expecting a terrible echo but he literally didn't move the entire time! He laid on mommy and watched Elmo and was a perfect little angel...I'm so proud! Even the blood work went well, he of course cried for a minute when the needle was in, but he did awesome! After that he got to play with one of the therapy pups at CHOP. This dog was amazingly well behaved, even when Jensen tried to sit on her! He had so much fun!

 

 We spoke with Dr. Rychik after all of his testing was finished. He was very pleased with his echo and thought that the cath would be pretty straight forward with minimal interventions. He said he looked blue, his sats were lower, but there was no evidence on any stenosis on the echo. He had a feeling there were some collateral vessels (small vessels that form, causing blood to flow in different directions that what his surgical interventions allow for, which usually cause slightly lower oxygen sats). Overall, he was happy with how Jensen looked, but of course we would have to wait until after the cath to further discuss the Fontan....

Here we go again...

And we are off to Philly tomorrow! Wowzers that was fast. So fast I haven't had a chance to update the world about it! We had been waiting to hear back from Dr. Rychik at CHOP to see what he thought about Jensen's latest echo. We got a call on Wednesday last week from Dr. Rychik saying he thought Jensen needed a cath with Dr. Rome in the next few weeks. (Dr. Rome did Jensen's last cath and we love him!) Of course this was pretty much what we were expecting but it makes this mama's heart start to panic hearing those words. 

Arggg.

Then we were waiting on a call from CHOP's scheduling center to choose a date for the procedure. We heard from them late on Friday afternoon, which was so unexpectedly fast! Our scheduled cath date is Jan 31...one week from the call! Of course, we had to immediately start making phone calls and getting paperwork together. Thank goodness that we have done this before and somewhat know the process! 

Sweetest face in the world <3

Most of our arrangements couldn't be made until Monday because apparently people don't like to stay in the office past 5 pm on a Friday to accommodate my needs?! haha! Although this week has been insanely stressful and busy, everything has neatly fallen into place and we are ready to go!

Jensen and his new Snuggle Bunny

The only variable in this whole perfectly planned trip is the weather. Of course it has started to snow here in NC and the whole state may very well shut down at first sight of a flurry. Please pray that our flight leaves on time tomorrow and we have a smooth travel day!

He's our tough guy

Thursday Jensen will be seeing Dr. Licht for an exam and an EEG. We will also be discussing plans for the Fontan, which Jeremy and I have only been thinking about since the Glenn. (Poor Dr. Licht is going to be in for a surprise when he sees our list of questions!!)

He's all ready for the plane ride with his headphones on!

After that, we will be on our merry way to pre-op. Obviously I'm being completely sarcastic and I dread pre-op labs as much as the cath itself. The blood draw is always so traumatic and scary for Jensen, plus he will likely need an echo and x-ray. Here's to hoping he cooperates.

This was after a recent blood draw :(

The cath will be on Friday, we won't know what time until Thursday so I will keep everyone updated. Speaking of updates, I started a group on Facebook called Willis Family Heart (just like our blog so it is easy to remember!). This is an easier way for me to give quick updates and post pictures when I don't have a long blog's worth of info to share. We will still be doing detailed blogs,especially with the Fontan coming up and the links will be on my personal FB and the FB group. 

Ready for cold Philly weather

Please keep us in your prayers as we travel and as Jensen goes through all of these procedures.