If you follow me on Instagram, you may know by now that our sweet baby Jackson was re-admitted to Methodist Hospital yesterday morning. We had our first cardiologist appointment in Midland Friday, and unfortunately, the doctor discovered that Jackson’s heart size and pressure have both changed since he was discharged from the hospital two weeks ago. Our Midland cardiologist called the team of doctors in San Antonio with his findings, and they decided it would be best for Jackson to return to the hospital yesterday to be monitored for the next several days, in order to find out what is causing the sudden change.
We left the house early yesterday at 5am, and made it to the hospital by about 10:45am. As soon as we arrived, Jackson was admitted to the NICU where our cardiologist, Dr. Camila Londono, was waiting to start another echo scan immediately. She wanted to compare what our local cardiologist told her Friday on the phone.
Here’s what she found:
First off, Jackson’s heart is functioning properly, which is good news. However, Dr. Londono agrees with our Midland cardiologist in that the right side of Jackson’s heart is dilated compared to what it looked like a couple of weeks ago when he was discharged (i.e. the right side of the heart is now larger than the left). She noticed that Jackson has high pressure on the left side of his heart, which is creating a traffic jam of sorts where the left valve is located (the valve acts like little doors that allow the blood to flow from the top to the bottom of the left side of the heart).
One additional thing Dr. Londono noticed is that there is a small tissue (shaped like a ring) which is situated right above Jackson’s left valve, which is possibly causing the pressure build up. Now that the coarctation has healed properly, blood is able to flow smoothly through the left side of his heart. This is something the doctors here brought up before his surgery – that the left side of the heart would be “tested” more or less after surgery to see how it handles a regular flow of blood. This is most likely what is causing the right side of his heart to be dilated, and it’s also likely creating pulmonary hypertension (he’s not able to breathe very easily – his breathing is a little high right now).
So here’s what they are going to do. First, Dr. Londono is going to consult with another cardiologist who administers catheters into the heart to probe around a little bit without doing surgery. This will allow the doctors to see if the pressure difference (between the right and left side of the heart) is being caused by that extra tissue above the valve, or not. If what the catheter reveals is different than what Dr. Londono suspects, then they assume Jackson has hypertension in his lungs and they can resolve that with medication. This is something that he would outgrow as his lungs develop over time (by 8 years of age).
If the catheter reveals that Dr. Londono is correct – that the buildup is being caused by the tissue above his valve – then they will have to do surgery again to remove it. Unfortunately, it will have to be open heart surgery this time (rather than doing the incision under his arm, which they did in his last surgery). Dr. Londono says this is the most likely of cases with Jackson, based on her assessment yesterday. Of course, this could change once she consults with the other cardiologists – and also the heart surgeon (Dr. Kuperschmidt).
Then lastly, another possibility (in addition to the tissue she found above the valves) – is that they may find that the little muscles that are working to open Jackson’s left valves are not working properly, which they will have to fix with surgery, as well. This is the least likely of all possible cases, but unfortunately the doctors will not be able to determine if this is something that needs to be fixed until they go into surgery to remove the tissue ring above his valve. Dr. Londono will be present during the surgery with a probe and she will decide at the time if this is something that needs to be fixed. The decision will be made with the surgeon at that time, based on his assessment too.
So here’s the tentative timeline for everything. The doctors will most likely do the catheter probe tomorrow, on Monday. Jackson will undergo general anesthesia for this procedure. This is a fairly safe procedure – the biggest risk may be that Jackson could possibly get a blood clot where they insert the catheter (and that’s only if they put the catheter in an artery – if they insert it through a vein, this is less likely to happen).
Once the doctors get the results back from the catheter probe, then we’ll know whether they still need to do surgery, or if he will be diagnosed with pulmonary hypertension (in which they just need to administer medication to resolve). If Jackson needs to have surgery, then the doctors would like for it to happen by the end of this coming week – possibly Thursday or Friday.
Jose is going to stay here with me in San Antonio through Sunday of next week. He technically is going to work these next couple of days from his computer, but his counterpart is on call to take care of any emergencies that happen in Midland while he’s here. Jose has days off starting Thursday through Sunday next weekend. He’ll then need to fly back to Midland on Sunday, since he’s scheduled to work Christmas this year. I’ll stay here until Jackson is discharged from the hospital.
So that’s about it. Baby Jackson is doing really well, just like last time. He is sleeping and eating very well, which we’re happy about. Today we are just spending as much time with him as possible – the nurses have left us to do his feedings and diaper changes, which I’m glad. I want to be as involved as possible with everything while I’m here. Unfortunately, we can’t sleep in the room with him here in the NICU, so we’re staying in a hotel right across the street. But we’re here as much as we can with Jackson during the day.
While I know we’re under the best care and attention here at Methodist Hospital, I have been pretty sad since we learned the news on Friday night. Jackson did so well in his recovery from his last surgery, and it is just disheartening to learn that he may have to endure it all over again. It took a lot of strength and courage for me to make it through the last ordeal, and quite honestly, I’m having a hard time this go around maintaining the same high spirits we had last time we were at the hospital. Looking back, the whole experience was a bit surreal for me as a new mom. And for us to be back in the same place, it’s even more strange and a bit difficult for me to comprehend why this all happened in the first place.
I walked to the chapel this morning, and read through some of the prayer books they have there. I found one in particular that seems to be an answer to my struggles these past days, which I want to share here.
I wait for the Lord, my soul waits, and in his word I hope.
The wilderness is never a comfortable place to be. It is a place of despair, loneliness, and abandonment. Sometimes we are in the wilderness as a result of our own actions, sometimes because of what others have done. Either way, it is always full of questions and doubts and fears.
My own wilderness in the past months has been my struggle as I try to understand why my brother has Alzheimer’s disease. I keep asking, ‘Why, Lord?’ To live by faith is to lean on God as we face life with its sometimes agonizing seriousness. I do not understand why my brother has this disease. But I am learning that all I love and cherish is the Lord’s. When I wait for the Lord, I learn many things. Most of all, I learn hope – hope for what God can do in my life and the lives of those I love, hope for what God can do with any situation.
Prayer: Lord, teach us to wait and put our hope in you, that we may give you the glory. Amen.
I’ll keep everyone posted what we hear these next few days, either big updates here on the blog, or small updates via Instagram. We ask, again, that you please keep our little family in your prayers these next few days as we learn more about Jackson’s condition.
Love to all – xoxo, Jose & Amanda