*** 2023 Recap ***

*** 2023 Recap *** (started in January posted end of April)

We had a very busy 2023 with John !
long story short... all is great

April 2023 was Jasiu's 10 year anniversary of his Fontan surgery - last of three.  Making it to this milestone means that he is now in a new cohort of patients post Fontan.  Our wonderful team here at Advocate prescribed a series of testing to establish a baseline. 

6/1/2023 - we had our annual check up with Dr. VanBergen to discuss the summer to come and reasons for all the testing and to get John comfortable with all that is to come as well.  As usual, John did not disappoint and had a ton of questions and they were all answered, those that know John, know he can talk and talk and talk, and the Dr. took all of his questions seriously and answered thoroughly. 

6/16/2023 - Bone Scan - this one was relatively easy. Funny thing is it's done at a Advocate Center for Breast Care and Joe had to take him that day.. so waiting room was a bit awkward. However, the test was quick, John did great. 

7/13/2023 - MRI Heart/Lung - John did great. Best part, he got to watch a movie during it. The IV was a bother to him, but he took it like a champ. 

7/21/2023 - Heart cath - This one was harder, but they were in and out in 45 minutes. We were going to go to a breakfast outside of the hospital while they do this, since we were first case we didn't grab anything to eat plus John couldn't eat so we fasted with him.  Good thing we opted to go to hospital cafeteria, we barely started breakfast and they paged us to come back.  Getting out of anesthesia was hard for John, he felt he couldn't breath, they had to mildly sedate him for a bit longer until he calmed down. Then the dreaded 6 hour laying flat time. We watched movies, played monopoly, played video games, etc.  By evening we were home and John had a great evening with his cousin watching more movies since his activity was to be limited.  The reason for such a quick Cath---  all looked great and no intervention necessary !  All great news. 

8/4/2023 - Stress Test  - this one was tricky, but John again was a star. At first it was difficult. It's difficult for an adult, let alone a kid. Once he calmed down, he was able to focus and did awesome. He had some freak out moments where he thought he would suffocate (since they close your nose and you have to breath only through the tube). I don't know. I felt bad, I never had a stress test, so it was difficult to see him go through something I had no experience with.  However, the tech was also very understanding, took his time to explain, give him time to recuperate, and start again.  Turns our his stamina is actually pretty good. 

10/30/2023 - MRI Liver/Abdomen - this one was an extra add on. The center we go to got a new machine for this test and it had to be done separate from the first MRI. This gave us more insight on the status of his liver. The liver takes the hardest beating if you don't have perfect circulation, like the one with the Fontan that John has. This one was even faster than the first MRI, John didn't get to finish his movie ...  He  did great, we went for a nice big lunch and celebrated the end of testing. 

11/16/2023 - Final appointment with Dr. VanBergen + Standard EKG and Echo. We discussed the whole summer. John asked all his questions. Some were silly, some insightful. Again, it is difficult to hear questions knowing that he now understands consequences, is taking responsibility for himself and knows that he has some limitations.  The hardest part for him was hearing that someday he may or may not need a transplant. Nothing indicates as such at this time, nothing, but being full disclosure, the doctor did mention it in passing, and John did have questions on that.  It is very very difficult to hear his concerns, concerns that a 12 year old should not have.  It's also difficult as the parent, because all that he is going through & feeling, we just don't know.  We talk and listen, but I can't say I know how it feels and that is not fun/

I will forever remember that it took us over 45 minutes to get him to calm down for echos as a baby, to the point that my arm would be numb from not moving it, for fear of him waking up and not getting a good echo.  Now its so easy !

So there is the recap of the 2023. In between there we had family in from Poland and didn't really have time for a family summer vacation other than quick weekend getaways whenever we could.  We will make up for it with a 5 week trip to Poland in summer of 2024!