Thursday, April 23, 2020

Cath Complete and We’ve Been Released

Lots of good news to report today! Jude had his heart cath this morning and it went well. They were able to expand his stent, which helped his oxygen saturations go up to the 80s. While that would normally be a bad number, for him that is great and will buy him some time before he needs his open heart surgery. Since the procedure was relatively straightforward, and he did really well with the anesthesia this time, Jude was discharged and we are back at the hotel now!

During his recovery time, he had two ultrasounds and an echo to check his blood clots and his heart. The good news is that his blood clots have shrunk; unfortunately they are still there and he is required to get shots for 6 more weeks. At that time he will have another ultrasound to re-evaluate. While it is a bummer that he has to continue the shots, it is good to know that the medicine is working.

The echo came back good and our next step is a televisit with his Houston cardiologist next week.

It was a little eerie in the hospital today. Jude and I were the only ones in recovery today so he received a lot of personalized service from his nurses. Everyone was really wonderful and did a great job of taking care of him. It truly takes a village to take care of the heart kiddos like Jude, and Texas Children’s is a village we are thankful for. Covid-19 has completely changed the medical world and the way it operates. I am thankful Jude was still able to receive the care he needs even during this time of uncertainty.

I also wanted to say thank you to Ms. Tammy Schamerhorn for providing our dinner for tonight. The boys were super spoiled with their very on cheese pizza!

So many have helped us in the last year and we can’t say thank you enough. From gifts, to showers, to taking care of our oldest boys, to providing us meals, and all the uplifting notes and messages sent. We are truly grateful for the friends and family God placed in our lives. Thank you all!

Wednesday, April 22, 2020

Cath Procedure Tomorrow

We are in Houston relaxing in our hotel room this afternoon, waiting for Jude’s heart cath tomorrow morning. He and I went to the hospital this morning for his Covid test and some pre-op bloodwork. Jude was definitely not a fan of the nose swab or pokes for bloodwork. The hospital is still only allowing one parent to go in with him, so Jesse and the boys are hanging out at the hotel while Jude and I go back and forth. Tomorrow morning we have to be there bright and early for his cath. The procedure will take several hours, then he will have to recover and get some post-op tests including an echo and ultrasound. We should also find out this week if his Lovenox (shots) will have to be continued another 6 weeks or if his clots are gone. We may have to spend the night in the hospital, depending on how he does after his procedure.

I know Covid-19 has completely turned the world upside down, and the same applies to the hospital. It is heartbreaking to know there are dads that don’t get to see their babies after the first couple of days until they are discharged from the hospital, which could be months. And moms are handing their babies over for emergent surgeries with no one to hold their hand while they wait for the news to know if their baby has survived. And I can only imagine how scary this is for those going through cancer treatments or have no immunity during this time. I know that we have all been affected in different ways during the pandemic, but seeing how some others are suffering makes me realize how much I have to be thankful for.

The hospital is only allowed to do extremely urgent cases right now. Jude’s procedure falls into this category. If his flow levels and sats are not kept in a certain window, he will not be a candidate for his open heart surgery he needs later this year. And he will not be able to survive without that open heart surgery. Thank you for following along, and I’ll be posting tomorrow with updates.

Monday, April 6, 2020

Cardiology appointment in Plano

Good morning! Jude just finished his cardiology appointment at Children’s in Plano. He is looking good, his sats are doing well, and he’s gaining weight. Which means he was given the green light. 😊

Our next planned step is a cath lab procedure to open up his left pulmonary artery and possibly balloon his stent. Right now, this is currently scheduled for April 23 in Houston. Texas Children’s is constantly changing their protocols and procedures now, so not sure if that will change. He will also get another ultrasound on his leg to check his blood clot status during that visit. We have been told to plan to spend one night in the hospital following the cath procedure since he will require anesthesia.

We will keep you updated and thanks for following along!

Jude getting an EKG