Wells Family: Baby Simeon Heart Surgery

Our catheter procedure on September 23rd went well. So many answered prayers for our little boy. He came out of anesthesia great, he didn't need any oxygen afterward, and though we prepared for a night or two in the hospital - we were sent home the same day! So thankful, and celebrating victories for our buddy.

The catheter doctor said pressures in his heart looked promising for a Glenn surgery. There is some concern due to his Down Syndrome that his arteries could possibly not handle the extra pressure from blood flow to his lungs, but results from the procedure looked good. The procedure itself went great, but Simeon stayed on brand and gave the cath doctor something she had never seen before. Usually tissue builds up on the inside of the vein or artery where the stent or shunt is placed, in response to the foreign object. Simeon has tissue building on the outside of where his stent was placed, and it is causing a little kink in his artery. Another stent could have been placed, but it is in the area of the artery that will be cut out and rewired in a Glenn. The doctor who did the procedure thought the kink was concerning enough that she moved us up on the list to get surgery within a couple weeks.

We got a call a few days later that our surgery had been scheduled for October 12th.
We had originally been prepared for surgery in October, but with everything in the medical world moving so slowly...we expected the end of October or possibly into November. October 12th now expedited the process and put us into the last two weeks before surgery very quickly - without having hashed out with doctors and surgeons what would actually be taking place.

Physical therapy yesterday went well. We saw a different PT that seemed to be a better fit for us and was very encouraged by where he was at with head and trunk control, as well as the way he engages his muscles when trying to roll on his side. We are still struggling with a super flat head, but his muscles and development seem to be making good progress!

Today we saw our out-patient cardiologist, a nutritionist, and Simeon's general pediatrician who works specifically with medically-complex kids.

Little sir is still 98th percentile for height on the Down Syndrome chart, and weighs in at almost 17 pounds now. He charms everyone he sees, and is such an easygoing guy even on full, hard days. We're waiting on some blood work recommended by his pediatrician, just to rule out a couple of things she saw as possible issues, but other than that she was happy with how he is doing.

His cardiac echocardiogram looked unchanged, which is good news. We got to ask questions of our cardiologist and get a better idea of what to expect for surgery. Our impression was that Simeon was higher risk and more complex, so we could expect to be on the longer end of recovery time and follow-up. But the time frames our team gave us today are looking like a couple of weeks in the hospital to recover post-op, and about a month of follow-up after discharge.

We could possibly be sent home in about 7 or 8 weeks from now. Which brings up all the feels for us. We've been away from home for 7 months now, and we're ready for real life again. But Simeon's life is just beginning, and we know there are so many things ahead to make sure he is well taken care of after we go home to Texas.

On Monday we will have another full day of appointments and meetings as we prep and meet the team that will be performing the surgery next Wednesday. That will be the place where we get to ask final questions and get the best idea of what to expect as far as surgery and post-op goes.

It feels exciting and terrifying at the same time. Surgery is the whole reason we've been living away from home for so long. The teams and surgeons here in Colorado are incredibly well-equipped to take care of our baby. And yet heart surgery is no small feat, and variables and risks are very real.

You can join us in praying for peace. For wisdom. For miracles before Wednesday, and also for doctors and surgeons who are well-rested and on their A-game as they operate on Simeon. Pray for Leland and Veil and their little hearts, as life gets crazy for a few weeks again. Pray for smooth, clear paths to take, and for our lives to shine the light of the Lord as we spend time in a place that is dark for so many people.

We love you all. Thank you for walking with us.