We left for SLC on April 7th. We were hoping to make it down to the valley that day, but we got a really late start, and traveling with a nursing baby, who was still having coughing fits, and a baby we couldn’t let cry for long periods of time, made progress really slow. That, and we left a lot later than we were expecting to. We arrived in ID Falls around 7:00 to eat dinner and decided that driving the rest of the way was probably not a great idea. Benson hit the “witching hour” around 7:00 p.m. every day and would cluster nurse and be super fussy. We just didn’t want to risk having a tet spell. So we got a hotel room, got everybody settled, and went to bed.
We spent Easter Sunday driving to SLC, and then spending time with Grandpa. Monday was spent as a family, and then Tuesday it all began. We started by having some lab work done, and then to have his sedated echo. I must admit, I was a little curious why they had to sedate Benson– he had done fine for all of his other echo cardiograms– but that is neither here nor there. He had a mild reaction to one of the sedatives and had to have an albuterol treatment. Once the echo was done, we were sent to recovery. We were hoping to be out of there in a couple of hours and to spend those last few hours before surgery as a family again.
Then he had a coughing fit. And with the pulse-ox attached, we saw Benson’s stats drop to 46. Dangerously low blood oxygen levels.Once the fit was over, his levels rose to 80 again like normal, but it made the doctors very worried. They were concerned that he might have a major tet spell, and decided that we were being admitted that day instead of going home.
We feel just plain horrible! While we truly had done what we could to try to get Benson’s cough taken care of, diagnosed, and treated, none of the doctors seemed as worried as we were prior to this. We had no pulse-ox to test how low he was getting when he had a coughing spell, and had NO IDEA he was statting THAT low EVERY TIME HE HAD A FIT! Had we known this, and had the cardiologist known how low Benson was getting, the surgery may have happened even sooner. He was having small tet spells every time! While there wasn’t much that could be done in retrospect, we worried that maybe we had caused permanent damage to our little boy for letting him get so low so often! ESPECIALLY since we did have Oxygen in the house. We just never figured we needed to use it! We had no idea.
Anyway, since Benson was nursing, I stayed in the hospital with him that night. I had Aaron bring me some things, and was able to scrounge up some PJ’s at the hospital as well. Once again, he really didn’t have any other coughing fits (oh, the irony!) and we had a quiet night.
Aaron came to the hospital around 7:00 am and we spent that last hour just holding Benson. Our hearts were breaking. No baby should have to go through something so horrible!
They had us walk him down to a waiting room. I was really grateful that they let me hold him until the very last minute, while the nurse and Aaron pushed his little bed down the halls. Then they took him away, gave us a pager, and sent us upstairs to the waiting room. Aaron’s dad was not able to watch the kids all day, so Aaron stuck around in the waiting room as long as he could. He waited until Benson was on by-pass before he left to watch the other 3. I sat in the waiting room, reading, praying, (pumping), trying to do anything I could to keep my mind off of the fact that our little boy was being sawed open, heart stopped… waiting for the pager to go off for any and all updates. After a couple of updates, and 7 agonizing hours, Dr. Burch (the cardiothorasic surgeon), came and talked with me. He said that surgery went well, and that I would be able to go up to the CICU in just a little bit and be with my little man. He talked about his pulmonary valve and expressed his amazement that Benson had lasted as long as 2 1/2 months– the opening in the valve that the blood had to get through to go to the lungs was a mere pin prick! He had spliced open the valve and stretched it and put a patch in it so that the blood could now get into his lungs. He explained that this was still a temporary fix, and that at some later point, probably when Benson was a teenager, his pulmonary valve would have to be replaced via OHS again. But at that point, they would insert a stent so that future valve replacements could be done in the cath lab. He also had patched the ASD (the hole between the two ventricles) and showed me the little patch they placed in Benson’s heart– the size of a small white bean, or a little hole punch. The patch would remain in place for the rest of his life, but the muscle would grow around it so the hole should never open up again or be a problem. By patching the hole, he effectively “corrected” the overriding aorta problem.
When I finally got to see my little baby, I felt such a mix of emotions! It was painful to see so many tubes and wires all over him again, and looking so swollen! BUT, there was another feeling– RELIEF, and BLESSED! Because, when I saw our little boy, HE WAS SO PINK!!!! It is amazing how as a parent, you can grow so accustomed to the off color of your baby, slightly blue-tinted. But once that blue was gone, the difference was amazing!
I sat there, staring at my little boy, wanting to hold him, and being unable to do so. But it was amazing to see his oxygen levels so high! 96%! Now, to recover, and to be a normal kid!