9 weeks post op (tomorrow)

Today we had a cardiology appointment for both William and Claire. William had a wonderful checkup and everything looked and sounded great! His cardiologist was very happy with where he is and William actually was quite pleasant and no tears (no testing today). As of last Thursday, we were officially off all chest restrictions, but today makes it more real having his cardiologist sign off and say not to come back for 2 months! We’ll take it!

Claire had a full checkup with EKG and echo. Her heart looks perfect and she never has to come back. Yay!

William has enjoyed this past week submerging in the tub and going swimming. He’s so much more active than before surgery and just an incredibly happy child. He loves dancing and overall just having a good time. He is just incredible and we love him dearly!

Below are a few pics over the past week.

5 weeks post op

Quick update on William. We had a checkup today with cardiology. William was stressed from the moment we pulled into the hospital. We tried cheering him up as best we could with ring pops and new toys, but he’s just traumatized and it’s going to take time. He had an echo today and he cooperated but cried the entire time. Immediately after it was over, he was chatty Kathy again. Go figure.

Williams’ heart looked good and the echo showed his fenestration is still open. There are mixed opinions on a fenestrated Fontan but from what we understand, it’s worth it. It basically acts as a pop off valve for when there is too much blood flow.

William saturation’s are around 92-93%. He looks and feels great. We watched a little bit of the horse race this weekend and ever since, he’s been running laps around the kitchen island saying he’s racing. He definitely has more energy than he had before, which we didn’t think was possible! He lost about 1/2 a pound but we will work to get this back. He’s still in the positive from when we were discharged so his doctors are not concerned.

Our next check up is in 4 weeks, and we are off chest restrictions in 3 weeks! We are really looking forward to resuming normal activities!

Go Boy Go! ❤️

3 Weeks Post Op

It’s been 3 weeks since surgery, and a little over a week and a half since we’ve been home! It’s unbelievable to look back and see how far William has come these past few weeks. These heart kids are the strongest people I know!

We were sent home with the usual restrictions: No crowds, no sick people, no lifting William under the arms, no water submersion, and no activities where his feet leave the ground (basically anything that could result in a fall). All of this is for 8 weeks to give his body and sternum time to heal. So far so good!

We had a cardiology checkup last Wednesday (complete with X-rays and bloodwork). At that point, William had lost 4 pounds since surgery. He started this journey at 31 pounds and was only 27 at this weigh in. The goal after surgery was to get William as “dry as a chip”, thus the reasoning he was sent home on three diuretics. He was pretty nauseas with all these meds and his bloodwork last week showed he was pretty dehydrated. We scaled back on some diuretics and eliminated one. Since then, William has perked up and his appetite has increased.

Yesterday we had another checkup with cardiology, complete with another chest X-ray and bloodwork. The results showed that William is doing well, his electrolytes are back up….and he gained 3 pounds in the past week! The X-rays showed that this is all William’s weight and no extra fluid so we were ecstatic to hear this news! No changes to meds and we will have our next appointment in 2 weeks.

As you can imagine, William is traumatized with anything hospital or doctor related, but I think he’s getting better, and will only get better with time. He has major separation anxiety with mommy and doesn’t want me going anywhere. We are getting close to being back on schedule at home and I think that will only help get back to “normal”.

William is doing great and we are so incredibly blessed by all the support and prayers for Team William! Go Boy Go!

Pics below are of William back in the swing, and then by his request…dressing the dogs up as super hero’s. 😂

Welcome Home William!

We are home! William was discharged this afternoon and he couldn’t be more excited to jump into mommy’s car! In fact, when daddy was pulling the car around to pick us up, he ran up to it and tried to open the door before the car was at a complete stop! He was so happy to be in his car seat and say goodbye to the hospital.

Speaking of staying goodbye, I’d be remiss in not saying that we had the absolute best care team taking care of William, and us. This team was remarkable. Every single one of them. We never once doubted a thing, and we are so incredibly grateful for their care.

Yesterday he had his chest tubes removed, and considering the circumstances, he handled it very well. It was incredible to see how good he felt after they were gone. He was running around in the playroom afterwards, and instead of riding in the wagon, he pulled the wagon with his BFF, Gray Bunny, strapped into the seat for a ride. Totally his idea. Our boy is back!

He has another 6 or so weeks of recovery but we are so very excited to kick off this summer with the Fontan behind us. We couldn’t be any prouder of our son. Way to go William! Go Boy Go! ❤️💙❤️💙

Post Op Days 6-8

The past few days have been up and down. When William is feeling good, it’s great! But when he’s feeling bad, he lets you know it, and it’s heartbreaking.

We had a little scare 2 nights ago. His heart rate dropped very low while sleeping, called a Brady. All the monitor alarms were going off and we were trying to wake him up. He had had a big day that day and no nap, so he was sleeping hard. The nurses and doctors are not concerned, and said that we all have a lower heart rate at night. We just don’t notice it because we don’t have a monitor at home. And this particular night, William must have felt very comfortable and was just sleeping soundly.

Yesterday morning we tried to take it easy after that scare. He had a great morning so it was nice to play and enjoy the day. He also had a special delivery of balloons which was super sweet of somebody to send him!

His chest tube drainage was still consistent on the right side but not much on the left. The day before he hadn’t drained at all on his left side through the chest tube. I really felt that there was a clog, and our night nurse had suspicions the drainage box wasn’t suctioning properly. She changed out the box but it didn’t really help. So yesterday they changed him from the drainage boxes to bulbs. The bulbs are great because they can just clip onto his shirt and he can be more mobile, and we aren’t running behind him with the boxes. This is usually an awesome step in recovery. Well, since the left side wasn’t draining, they inserted some de-clotter type medicine into the tube and clamped it for 90 minutes to let the medicine break up any clots in the tubing. Most kids can’t tolerate 30 minutes of this. William fell asleep so he slept through it. After he woke up and they took off the clamp, he drained over 120 mls in an hour. The bulbs have a stronger suction and the medicine did the job to unclog the tubes. But, this is where the day turned awful. William was in so much pain and couldn’t even stand up. He couldn’t get comfortable in bed and insisted on being in the wagon where we walked probably 100 laps on the floor. He ended up falling asleep in the wagon. We loaded him up with pain meds and removed the suction from the bulb. They did a chest X-ray last night to make sure there wasn’t anything else going on. We think he just feels the tube more now that he doesn’t have the fluid pocket that was cushioning it before. They switched the left side back to the box since it has less of a forceful suction. This combined with the meds has provided some relief.

If all goes well, they may remove the chest tubes tomorrow, which should provide immediate relief, after the removal itself. They will give him special drugs to help him not remember it.

We’re taking it easy and following William’s wants and needs. Today has been much better so far, but he’s being cautious. We did use his new chainsaw to shape up the bushes on the rooftop garden this morning. He’s taking a good nap now so we’re hopeful things are moving in the right direction!

Thank you for all the continued support and prayers.

Post Op Day 4 & 5

The past two days have been eventful. Yesterday was a pretty good day. William’s appetite started to return, we had 3 or 4 really good walks, visited 2 playrooms and overall pain was managed. He loved the push lawnmower so much in the playroom that we bought him one for the hospital. Now when we walk the halls, we mow. He’s going for yard of the month up here on the 8th floor.

Today has been rough. William started the morning with a blood draw so without an IV, that’s not any fun. He’s thrown up 4 times I think. 2 of those times came out of nowhere, the other 2 were because of nasty tasting medicines. His potassium levels are low so we’re trying to give him potassium and it’s awful tasting, but we have got to get it down. Drainage is still heavier on the right than on the left side, but his chest X-rays show more fluid on the left so we need for him to drain more. He’s on two different diuretics now so hopefully we’ll see a difference with tomorrow’s X-ray.

We had a therapy dog visit today. Wendi the sheltie was precious. They had a dog show too that we attended but William wasn’t overly interested.

Baby Claire and Mimi came yesterday for a visit so that was fun. I think Claire enjoyed it more than William. She looks bigger than him in the pic, but he’s still taller. 😂

Tomorrow is a new day and we’re hoping he feels a little better. Thanks for the prayers and support! ❤️

Post Op Day 2 & 3

The past two days have been up and down, but I’d like to think we’re doing better. Yesterday morning William had a really hard time with nausea and pain. We finally figured out the right combination of meds and he became a different child by the afternoon. We took 4 walks (against his will) but he seemed to cooperate them better each time. We had a restful night so that was well deserved.

This morning William started off saying he wanted to get out of bed, so we got him up for a walk, but shortly after getting his feet on the ground, he sat down very upset and wouldn’t move. We spent the better part of the morning in bed pretty fussy. He had his central line removed in his neck and the tape irritated his skin pretty badly. Wound care looked at it and gave us an ointment to put on it but it should heal up soon. He pulled his other line out of his hand Friday night so we are out of lines…which means his next labs will require a poke. 😢

We moved up to progressive care today, a day later than planned since the floor was full last night. We pushed William hard to walk today. The first walk was from his bed that he was transferred in, to the playroom on our floor (which happens to be right beside our room). The playroom excited him so I think that will be a good motivator over the week. We were able to get 2 more walks in and will try for one more tonight, but he’s out cold now from his last walk.

He’s eaten pepperoni, fruit snack, a few m&m’s and lollipops. His appetite hasn’t completely returned, but when you’re in the hospital, you get what you want. Fed is best, right?!

William continues to amaze us. He is clearly in pain, but is pushing through. We are so incredibly proud of him and can’t wait for this to be behind him. Pics below show the Warrior Wall, filled with other heart warriors T-shirt’s. Willian got to hang his shirt on the far left. Smiling pics are when we have good drugs on board.

Thanks for the continued support and prayers!

Post Op Day 1

It’s about 4:15pm the day after surgery, and considering William was extubated right at 24 hours ago, he has moved mountains! He slept pretty much throughout the night, however, Russell and I, have not. But that’s ok!

He hasn’t said much but he did ask for water immediately after the breathing tube came out. He asked for his Paw Patrol blanket, and then when we had him sitting up patting his back he said he wanted to go home. That one broke my heart.

Overall last night went really well. He has been a superstar patient. This morning we got up and moved to the recliner to sit up. We then went on a short walk outside his room. William immediately feel back asleep in the recliner when we got back to the room.

We just returned from our second walk of the day and we went even farther! Everybody was rooting him on! The walking and movement is what is going to help him get better and to help with the drainage. He has been in some pain today but they are managing it well with medication. We’ve had popsicles and water but no interest in food, which is common. He asked to lay back in bed after our walk and for mommy to lay with him, so that’s where I am, snuggled up beside my sleeping little man.

We came in yesterday with oxygen saturation’s in the very low 80’s. Today it’s been 94-95 for the better part of the day, without any oxygen support! These are numbers that we have only dreamed of. He may not settle this high, but for now, we’re going to enjoy our pink boy.

He’s off most medications and dropped one line in his hand. He still has a line in his neck and left hand.

We hope to move out of the CVICU tomorrow up to progressive care. I’m hopeful that each day will get a little easier and we will slowly get out sweet little boy back.

We have been overwhelmed by all the support for William! We have loved seeing all the Team William shirts and can’t wait to show our little man everybody that has been cheering him on!

The below pics are a progression of the past 24 hours. He’s already come so very far. Thank you for the continued support and prayers!

Surgery is complete

William’s surgery, the Fontan, was a success. He did wonderfully well throughout and is recovering in the CVICU. We are at his bedside now and he is resting comfortably. He was just extubated and tolerated that well. He has two chest tubes and so far his drainage is minimal.

We are expected to remain in the CVICU for a few days before we move to progressive care. Once in progressive care, the biggest challenge will be to get him moving and walking. We may actually get him up tomorrow if he’ll tolerate it, but at the very least, we’ll take a wagon ride. Getting him moving is imperative to getting things flowing and moving the way they should.

We are anticipating a two week stay. He could be discharged sooner, but could be later. It’s all up to William and these pesky chest tubes.

We greatly appreciate all the prayers and encouragement along the way. Please keep them coming in the weeks to come throughout his recovery.

❤️❤️❤️

Ashley & Russell

Pre Fontan Heart Cath

It’s been quite a while since our last post, but we have been living and enjoying life! William has a little sister now too!

William had his pre Fontan Heart Cath April 9th. He did surprisingly well with everything. He’s grown a lot over these past couple years and has really matured into a sweet little man. They placed two coils during the cath but overall his heart function looked good. We were able to go home later that evening so that was great!

Surgery is scheduled for May 10th. We are anxious to have this stage behind him. We will try to update this blog next week with how he’s progressing. Thank you fo the continued support and prayers!

Pic below is after his cath. A 150 pound Great Dane came to visit. William was still a little loopy but he said he wanted to hug him. Sweet boy! Oh, and he loved the orange popsicles!