Post Cath

Elijah is out of his cath and is currently staying the night at CHLA in CV Acute. The procedure took over six hours and he spent over three hours in recovery. They were able to coil many, many collateral arteries. His body has been working overtime to create more collaterals and his body has even forced blood past coils placed during the last cath to continue to grow arteries that were meant coiled off. It looks like they got all of the major ones, however, he still has a cluster of really small collaterals that the doctor was unable to coil. The doctor was able to balloon his aortic arch with should relieve some pressure. One amazing thing was that they were able to find the left subclavian that they thought had been sacrificed during the Norwood. Not only did they find the artery, but they ballooned it and restored bloodflow to his left arm!!!!

After the cath, he has to lay still and flat for six hours. You can imagine how he must enjoy that! They were able to bring me a reclining chair so that I could hold him and still keep him straight. He was struggling to breath and he was working really hard. He had a very loud strider as well. They had to give him a breathing treatment and he needed a blood transfusion. By the time they transferred us to CV Acute, he was breathing much easier.

Although I love CHLA, I was incredibly frustrated with their personnel this time around. You have to remember that we have been through this many times, but this time was disorganized and not at all what I expect from CHLA. First, I got a call yesterday saying that they needed to reschedule the cath because they didn't have pre-authorization. They had gotten authorization through the secondary, but not the primary. Needless to say, I was upset. I demanded that they put the authorization through and tell the insurance company that it was urgent. I forced the issue until they agreed to do whatever it took to make it happen. You have to remember that Elijah has been breathing really, really fast and that he needed this cath. In the end, they were able to get the insurance authorization and we kept the appointment. Second, yesterday Elijah spiked a fever and was pulling on his ear. I told Dion that I thought Elijah had an ear infection. Dion had the nurse at CHLA look at his ears as part of his pre-cath physical. The nurse told Dion that Elijah's ears looked fine, and that even if he had an infection, he would be placed on antibiotics during the procedure and not to worry. Even if it was an ear infection, they wouldn't cancel the cath. Then, later that same day, the fever spiked and I emailed his doctor at CHLA. She responded that she had spoken with the nurse and that Elijah's ears were indeed fine.

I was still suspect, but went along with them because they are the experts. This morning, Dion told everyone that he thought Elijah had an ear infection. By this time, icky stuff was oozing out of Elijah's ear. Everyone said that Elijah was fine. Dion told the nurse and one of the doctors (not the doctor doing his cath) that Elijah had spiked a fever last night. No one cared. Apparently, during the cath, he spiked another fever. They cooled him down. He then spiked yet another fever in the recovery room. I spoke to his doctor and she was surprised that Elijah had a fever last night. No one had told her. Later, while in the recovery room, her nurse came by to see me. She basically reprimanded me, with a smile of course, for not having told her about his fever. Say What???? She went on to blame Dion and say that she told him that if Elijah was to get a fever, we were to call immediately so that they could cancel the procedure. She never told him that. She was lying. To add to that, she basically told me that we were lucky that they were able to extubate considering that he may be ill. I was soooo mad. We told everyone we saw the details of the night before. She was trying to cover her ass and at our expense. To add salt to the wound, once we were moved to CV Acute, a different nurse came by to look at his ears yet again. She said that he most definitely has an ear infection. Without a doubt. Most likely the fever is due to his ears being to infected. Poor kid. The membrane in his ear had ruptured and the infection was oozing out. I knew that he wasn't well yesterday, but no one took me seriously and then they tried to blame me for their mistake. Not cool. I understand making mistakes. Heck, I  make mistakes on a daily basis. However, you don't blame others for those mistakes. Not cool.

Although I am still angry about the ear infection stuff, I am happy that Elijah is doing well. He is recovering and sleeping and hopefully he will allow Dion to get a little sleep tonight. It is our hope that he will be home tomorrow morning. Please keep him in your prayers!