Here we go, again

Just a couple of weeks ago I was thinking about how I hadn’t written a blog post in a while and how I should update everyone on the fun summer we’d been having.

Mason had his central line removed at the beginning of June and a whole new world opened up for us. For the first time in Mason’s life, we didn’t have to be careful about germs. Mason had a healthy heart, or so we thought, and although he’ll be immunocompromised for a while (which he takes medication for), if he gets sick, we treat him like a normal child. Restrictions were lifted and we were able to take Mason out in public.

I can’t say we jumped back into the real world, we were still exhausted, but slowly we started to venture out. Mason started daycare twice a week to help socially and developmentally and he absolutely loves it! We enjoyed play dates, going to the park, playing outside in the pool at family get togethers, going to Gigi’s Playhouse, and even simple things like going to the grocery store.

Mason daycare

M daycare

M swing

M blow up pool

Mason Gigi's

M grocery store

On July 23rd, Mason had a routine cardiology appointment followed by his monthly oncology appointment. It was a very LONG day but we received good reports all around.

M echo

M oncologist

Later that evening, I received a call from Mason’s cardiologist. He had taken a second look at Mason’s echo and found something suspicious. He asked us to come back the next day for another echo.The next day, his cardiologist did the echo himself and was 99.9% sure he had found a large hole in Mason’s heart (VSD). This VSD was different than the small one that was too risky to repair during his first open heart surgery. This VSD would require another open heart surgery to repair.

Our whole world was turned upside down…yet again. We were shocked and extremely saddened. The thought of Mason having to go through more suffering and more pain made me physically sick to my stomach.

Because our cardiologist was 99.9% sure and not 100% sure, he got other opinions from his colleagues and scheduled Mason to have a heart catheterization which would confirm 100% if there was a hole in his heart. The cardiologist called the next week and said that he had one colleague who did not believe there was a hole in his heart, but the others did. The heart catheterization was scheduled for August 4th and open heart surgery was scheduled for August 27th.

At this point, we were praying that either the one cardiologist who did not think there was a hole was correct, or that by a miracle the hole would close on its own and the heart cath would not show a hole.

Unfortunately on August 4th, Mason had the heart cath, and it confirmed 100% that there was a large hole in Mason’s heart. Open heart surgery would go as planned on August 27th. We were devastated.

The heart cath procedure went well but Mason had some trouble during recovery. When he woke up, he was in extreme pain and was inconsolable. We were in recovery, an open area with only curtains dividing the patients, for over an hour as we waited for a room to come available on the heart floor and a nurse to take Mason. Mason was unable to receive any pain meds until we had a room. We also couldn’t hold him until then. One of the hardest things as a parent is to see your child in pain and there is nothing you can do. Finally, a room opened up and a nurse was available to take Mason.

Once we got into our room, I held Mason and he was given pain meds which helped with the pain. Unfortunately, shortly after, he began vomiting. He vomited several times and vomited up blood and blood clots. Zofran, an anti-nausea medicine, was given and thankfully his vomiting stopped. He was finally able to get some rest in Grandma’s arms and we were able to go home late in the evening.

M recovery gma

Although we are heartbroken that Mason has to go through another traumatic experience, we are praying some good will come out of this.

Since Mason’s first open heart surgery, he’s had pulmonary hypertension (high pressure in his left lung). He did not have this high pressure before his first surgery so the cardiologist thinks this pressure is being caused by the hole in Mason’s heart. If this pressure goes untreated it can damage the lung. The heart cath shows that no damage has been done to the lung so far, so we are praying that this open heart surgery will fix the hole in his heart and the high pressure in his left lung.

Mason has also been very tired all of his life. Early on, we were told this tiredness was caused by his two heart defects. Once his heart was repaired, we were told the cause was chemotherapy. But in the past couple of months, his oncologist said he’s far enough out from chemo where it shouldn’t be affecting his energy level. This hole in Mason’s heart could explain why he is so tired all of the time. We are praying that after this open heart surgery, we will finally have Mason at his full capacity with a completely healed body.

Most importantly, we pray that God will be glorified through all of this. We pray that when people look at Mason’s story, they see Jesus. We pray that they see a God who is full of love. Who has protected Mason through all of this. Who has comforted Tim and me and given us a peace that surpasses both of our understanding. Who has been faithful every step of the way. Who continually covers us in grace and gives us strength to get through each day. A God who is worthy of all of our praise.

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