Two days later the NP called saying that she got his results back from the chest X-ray and that she was really concerned. She saw something on his X-rays that isn't normal in children. She said she'd call his pediatrician, Dr. Lei. Not 5 minutes later, Dr. Lei called and said he wanted to see Enzo right away. With Enzo's history, I pretty much mentally prepared myself that he was going to end up in the hospital again. However, Dr. Lei checked him out and said that Enzo didn't seem to be as sick as he thought he might be. The doctor didn't know why the hospital had prescribed the specific antibiotic and told us not to give it to him anymore. Enzo did, however, have a double ear infection, so we went home with a different antibiotic. (It looks like our favorite NP couldn't even properly diagnose an ear infection.)
I was still quite worried about all of the congestion in his chest and was thankful that we were scheduled to see the cardiologist on Thursday. When we drove to the doctor's appointment, we were again mentally prepared (and physically packed) for another emergency trip up to Primary's. We were worried and knew that something just wasn't right. At his appointment, Enzo had another routine chest X-ray done. He wasn't scheduled for an Echo, but I planned on requesting one so that we could make sure everything was okay with his heart. When we saw Dr. Mack, we explained Enzo's recent health history. He said that what was seen on the X-ray was similar to what might be seen in adults when they had pneumonia. He had us get an Echo right then and also sent us down to the lab to get blood work done to see if he had penumonia. The Echo showed that there was some more narrowing in his pulmonary veins, causing some blood flow restrictions. It wasn't nearly as bad as when he had to have surgery in April, so Dr. Mack said he would call Dr. Burch, Enzo's heart surgeon, and then get back to us. We didn't hear back anything at all for several days. I finally put in a few calls to Dr. Mack's office and heard back from him on Monday afternoon. The pneumonia came back negative, but Enzo did need to have a cardiac cath done - a procedure where they insert a catheter up through a vein in his leg and into his heart to get a more accurate reading on what was going on in his heart. They would measure the amount of narrowing in his veins, and if necessary, put a stent in to hold the veins open. They would also be able to tell if another open-heart surgery would be necessary. His cath was scheduled for November 8 at 11 am.
The hospital called us a couple days before and told us that his procedure was moved to 1 pm. Enzo couldn't eat anything the morning of the surgery, so we woke him up in the middle of the night to feed him a bottle. James gave him a blessing, and I know it was because of that that Enzo wasn't completely miserable having to wait all day without eating. He did wake up a little grumpy, but wasn't too bad at all.
We then took him down to the Cath Lab where they would do his surgery and left him with the nurses and doctors. We were told that it would be a 3-4 hour procedure, give or take. 5 hours later, we finally got paged to go back to the lab and hear the results. It was really neat because were able to see the video of exactly what they had done. After the inserted the catheter into his heart, the injected a dye and we could see it move through his heart and veins. We got both good news and bad news. The good news was, they were able to put a stent into his upper right pulmonary vein to help it remain open. The bad news was, his lower right vein had closed up completely. I guess it had narrowed so much that it was completely gone.
We asked what this would mean long term. Basically, as long as the upper stented-vein remained open and un-obstructed, Enzo could live a normal life, playing sports and doing everything a normal boy would do. However, worst case scenario, if the stent did not work and his upper vein closed off as well, he would loose the use of his right lung and would have to live off of one lung. This would mean a more limited life style, with no sports or strenuous activity. It may sound bad, but to me it was happy news. Limited activity was a worse case scenario that I could live with. Up till that point, I thought that his worse case scenario was that they couldn't do anything about it and he would die - and that was always in the back of my mind. Every time he got sick, wouldn't eat, wasn't gaining wait, etc. - I would think that my baby was going to die. I know that in the big picture, this is still an option. I know my Father in Heaven can take him back to live with him at any time. I know his heart still isn't perfect and there's always a chance that he won't be with me his whole life. But I'm always grateful for every minute with him that I have been given. And I was very grateful to hear that the most likely worse case scenario was a one-lung limited lifestyle.
After we talked to the doctors, we had to wait again in the waiting room until Enzo was ready to be taken to recovery. Because it was so late in the evening, he was admitted for the night instead of staying in same day recovery. It was a rough night. Enzo was awake, but still very calm and sedated, for about 2 hours after surgery.
However, once the sedation started wearing off, it was a whole different story. Once he started waking up, he wanted to move around. But we had to keep his leg still and flat for 4 hours. To make a long story short, he pretty much screamed and cried all night long. It went from sleeping...to screaming...to crying...to whimpering...back to sleeping....about every 5 minutes or so. During all of that, he had a reaction to the anesthesia that caused him to turn bright red. The nurses thought it might be an allergic reaction. That eventually went away and he finally drifted off to sleep at about 1:00 in the morning. Then, his oxygen levels plummeted. They had to wake him up again to put oxygen on him - which was a 3 person wrestling match to accomplish. His oxygen levels stayed low, even with the oxygen on, so they took him down for x-rays at 4 am. Everything worked itself out by morning, but it was one long night. He was almost back to his normal self and was climbing all over his crib by morning.
He was discharged at about 10 in the morning, but had to go home on oxygen again. That didn't stop him from moving around and having fun though!
We saw Dr. Mack again a week later, where they did another Echo to make sure everything was okay. The stent looked great and he got to come off the oxygen. Dr. Mack was pretty concerned, though, about the loss of his lower pulmonary vein. He said that we need to be very careful and watch him closely because he is at a higher risk for infection in that right lung. We now need to take him to the doctor if he ever gets a fever and be very careful that he doesn't get sick. He also takes asprin daily to help prevent any kind of build-up from forming around the stent.
Once again, he seems like a normal kid. Unless you could see his scar, you'd never know about all he's been through. Here's hoping he stays that way for good!
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