Yesterday, was a long and exhausting day. It started with Tehilla and I going to have her weighed at the well baby clinic. When I got there, I saw that Tehilla's colour was not good. She was pretty purplish. By the time, we went in to see the nurse, she was blue. She was breathing fine, but her face, body and fingernails were all blue. We weighed her and she went down in weight: She was 3 kg exactly, having lost 22 g in a week. I nursed Tehilla and her colour got a little better, although she was still blue. The nurse took her other measurements and finished putting all of her details into her file, and I went ahead and called our nurse, Ifat.
We went immediately to the ER, where Dr. Golander met us. By then, her colour was back to a purplish colour. So her blue episode was about 40 minutes long. They took her oxygen saturation which was 68. Tehilla's normal level is low 80s. The ER doctor looked her over. Her saturation went back up to 81 and her colour was light purple.
Several hours later, Dr. Golander came back to look her over. Her colour wasn't great still. I told him about the weight loss and that I hadn't known that sweating was a sign of cardiac distress, and that Tehilla sweats a lot when she eats, from bottle or breastfeeding. He felt that over all she seemed to be doing well. Of course, she calmed down really nicely for him, as she usually does. Then her saturation started to go up to 86-89. That's too high for her. So, Dr. Golander explained that he was putting her back on Fusid. She had been on Fusid for urine output, which indirectly causes better blood circulation. He also wanted a blood test done to rule out any infection. He wants me to try to keep breastfeeding her for one more week and see what happens with her weight, as it is the best thing for her. As well, we were given permission to now lift her under her arms and she is allowed to play on her stomach.
The ER was unfortunately swamped, so it took several hours, before they took Tehilla's blood. She was given Fusid. Then her oxygen saturation started going up even higher, 91-95. I notified the ER doctor. He said that if it didn't start coming down soon, he would give her more Fusid. Her saturation went up to 97-100. That's extremely high for her, and shouldn't even be possible. I told the ER doctor, he had them give her more Fusid. I asked if he had notified any of the cardiologists of what was going on- he hadn't. In fact, they had all assumed we had already been discharged hours ago.
I sent a text message to our nurse, telling her about the high oxygen levels. Ifat called me, shocked that we were still there and upset that no one had let them know and in disbelief of Tehilla's oxygen levels. One of the cardiac surgeons came to see us 5 minutes later. He didn't believe that the machine was measuring properly and had them switch her to a new machine and then left. Well, the new machine read the same exact measurements, which they blamed on her crying. Once I had her nursing and calm, and she still had 97-100 in oxygen saturation, they finally believed it. Her blood tests came back with clean results. Calls to Dr. Golander and Dr. Erez and they felt that since other than her having high oxygen saturation, she was fine, we could be discharged.
I felt wary of being discharged, as having high oxygen saturation is a sign that there is too much oxygen going to the lungs and not enough to the body. Which could result in her turning blue again. I voiced my concerns to the ER doctor, who sat and reinformed me of HLHS is and then gave me a speech that there was no guarantee that Tehilla wouldn't die. (It doesn't matter how many times, I am told this, it hasn't gotten easier to hear it.) But keeping her in the ER couldn't necessarily help either, because she might never turn blue again. Because I pushed more, he had another blood test done, where they check blood gases, and it could show signs of heart failure. It came back clean and they discharged us.
She now gets Fusid twice a day, as well as her usual Aspirin. We were in the ER for over 12 hours. Bless Tehilla's little heart, she slept 6 hours last night.