We Interrupt Our Regularly Scheduled Programming

Today's Appt. Calm. Cool. Collected. Mickey.

It's time to take a little break from our China memories. Instead, I want to take a moment and talk about our current events. Today was the appointment, as we like to refer to it, for all the marbles. As we've previously mentioned, Jordan was born with significant heart defects that were for the most part repaired in China. Sometimes, that isn't the case with international adoptions and additional or completely different diagnoses are discovered once home in America.

However, since all we really received was a 5-10 page report on his surgery, general health, and likes/dislikes (you may remember some of those here), our pediatrician and cardiologist essentially needed to set baselines that we have no history of and no way of getting. The first wave included fun things like blood work and stool samples (yippee! Derek was in charge of those) and vaccinations--which Jordan was actually more than up to date on.

First Echo: Brave boy

We are so thankful to live within five minutes of not only a children's hospital, but a children's hospital that includes an entire pediatric congenital heart defect team of very specialized doctors. They were able to get us in for a baseline echo and initial consult within a week of being home, and we're beyond thankful that paperwork we received from China matched approximately what his echo told us. That being said, we had only been home a week and had known our son less than a month. It was decided to keep things status quo and see how the next few months went with some tests spaced out in there. There were a number of things we needed to rule out and/or diagnose which is what those tests were for. He's been a trooper for every single one of them, never fighting the doctors or techs administering the tests. Don't worry, he did let us know he wasn't happy about them, but he laid as still as possible for the tests he wasn't required to be sedated for.

To date, he's received two echos, one abdominal ultrasound, one nuclear imaging liver/spleen scan, three chest x-rays (one ordered and two in ED) and a cardiac MRI. We've ruled out things for the time being such as intestinal malrotation, and diagnosed him with heterotaxy with polyspenia--but no daily prophylactic antibiotic needed! He was also diagnosed with complete abdominal situs inversus (so if he has appendicitis, it would be on his left side--organs are mirrored). Also, he's received more EKGs than we can count, because I'm pretty sure they do those like they take blood pressure for standard vitals for him.

Ultrasound Complete!

Liver/Spleen scan Recovery

Waiting for Cardiac MRI

In the meantime, his lungs don't seem to tolerate colds very well. In August and October almost two months to the day he went from the sniffles to gasping for breath, so we got our very first ambulance ride for the first visit to the ED and the for the second time we recognized what was happening much sooner and just went straight to the ED. (Insurance does cover most the ambulance ride, but we live closer and can drive faster to the hospital than waiting for an ambulance to get here.) We have some options to think about to hopefully reduce or eliminate these episodes, but we will worry about that at a later date.

Also, just as a fun little extra, this little dude also has some nearsightedness and astigmatism. Nothing too serious, but enough that he needed correction. Considering how easily he transitioned to wearing his glasses, I think it is very safe to say that he knows he needs them. His attention span and attention to detail has skyrocketed in the past few weeks. Also, he looks pretty stinking cute. He really does need them, I promise. They aren't just for aesthetics. 

But. This is the day we have been waiting for since we got back from China. Not to sound overly dramatic, but really, as mentioned, this one was for all the marbles. All of the tests, procedures, and visits have led up to this point to know how we will proceed with Jordan's heart. We've been home long enough to know his patterns, his general health, etc. He's comfortable with us, and completely comfortable with the doctors (makes himself right at home). And so, the doctors and we scheduled today's appointments to set up a game plan for the future. 

Realistically, we know that the majority of his issues are considered repaired and are truly thankful for that. The concern is the existing condition of extra blood flow backing up in his lungs, (pulmonary hypertension) which is why all of these tests have led our cardiac team (we went from one doctor to several over the past few months) to decide to do a heart catheterization on Wednesday, November 9. In theory, this test should take about two hours, but due to some extra findings in his cardiac MRI it may need to be a little longer than that and require and overnight stay. One of the openings for the deoxygenated blood is too small, which does not allow it to return to the lungs to reoxygenate. If needed, this would be resolved with a stent. The surprise issue we found out today was that he has some blood pooling because of his mitral valve being too small. This does actually line up with the report we received from China, which is kind of a relief knowing that it is not a new development. However, the news we weren't expecting or hoping for is that if this is severe enough Jordan will require open heart surgery to repair this. Our hope of course, is that this isn't or won't actually be as severe as possibly indicated on the MRI. However, if it isn't resolved now, it will most likely need to be repaired in the future.

Right now, he is sleeping, and currently also wearing a 24 hour heart monitor to measure how his heart is performing. A few blips on today's EKG along with some of the other test results indicated there was a need to monitor this. Again, our hope is that this will resolve itself or that it isn't an issue at all. Otherwise, this would be an indicator of needing a pacemaker because he would be at a higher risk for a complete heart block.

Honestly?

About half of these things we anticipated. We assumed there will be a good chance he will need a stent. We knew that a pacemaker would be a possibility. The stent would require some routine maintenance as his body grows and adjusts, and a pacemaker would limit some of his activities as he gets older (such as contact sports) but if it keeps our son healthy and well that's fine with us! The shocker was thinking we may be facing major surgery before the year end. This time I will be a bit dramatic, but heart surgery isn't like getting your big toe operated on. This is his heart. You can take or leave a big toe (maybe have some balance issues but that's it). You need your heart to survive.

A few weeks ago, I posted on Instagram this picture of our silly, independent, energetic, little boy with a severe case of FOMO. All of those things I posted still hold true. He can and will run and jump (maybe work on his balance a little, but that's neither here nor there). We have an excellent team of doctors who proved over and over to us today and in the past few months that they don't just care about him as a patient but as a little person. Most of all, we have a God who can heal all things and knows what is best for Jordan. Please pray with us that his catheterization goes well, that any issues that can be fixed that day will be, that if we do spend the night in the hospital (required if any issues are corrected or extra testing done) we will get rest, and that if heart surgery is needed that God will guide the surgeons' hands, and most of all for bravery for our little boy.

In times of anxiety and uncertainty, I wanted to share what I turn to for peace and comfort. It's not found in the Bible, but is written with scriptural references. I generally use it for myself, but we can also substitute Jordan's name in there as well. I hope you'll find comfort in it l should you need it too.

Heidelberg Catechism, Lord's Day 1, Q&A 1:

Q. What is your only comfort in life death?

A. That I am not my own but belong with body and soul, both in life and in death, to my faithful Savior Jesus Christ.

He has fully paid for all my sins with his precious blood, and has set me free from the tyranny of the devil.

He also watches over me in such a way that not a hair can fall from my head without the will of my Father in heaven; in fact, all things must work together for my salvation. 

Therefore, by his Holy Spirit, he also assures me of eternal life, and makes me heartily willing and ready from now on to live for him.

1.1 Cor 6:19, 20. 2.Rom 14:7-9. 3.1 Cor 3:23; Tit 2:14. 4.1 Pet 1:18, 19; 1 Jn 1:7; 2:2. 5.Jn 8:34-36; Heb 2:14, 15; 1 Jn 3:8. 6.Jn 6:39, 40; 10:27-30; 2 Thess 3:3; 1 Pet 1:5. 7.Mt 10:29-31; Lk 21:16-18. 8.Rom 8:28. 9.Rom 8:15, 16; 2 Cor 1:21, 22; 5:5; Eph 1:13, 14. 10.Rom 8:14.