She had been sleepy the entire day, but I hadn't made much of it. I took her oxygen saturation level and she was at 68 and her temperature was at 37.6. Calls to the cardiac nurse, to the doctors and surgeons...it turns out no one was in the hospital, and they didn't want me just hanging out in the ER, and having the problems that we've had in the past. They told me to wait at home, until they can find someone on call or to go in, to take a look at her. In the mean time, I should feed her and wait a half an hour, then take her saturation and temperature again and of course, look and see if her color is still off.
45 minutes later, her lips were still purple, her saturation was at 66, but her temperature was at 37.2. They wanted us to come in to the ER and they found one of the pediatric cardiovascular surgeons that was in the hospital to come and check on her.
I have to say this, for all the complaining I have done on previous visits to the ER- we had none of those problems. The doctors and nurses were on top of everything, handled everything efficiently and were cautious and caring.
Tehilla's face was very purple/blue when we got to the ER. They checked her and her color in her face returned very quickly, but her lips were still purple. Her saturation was back to normal at 82 and her temperature was at 37.3. They also weighed her and she went up again: 4.400 kg!
They called a cardiologist immediately, who requested standard blood tests, as well as the blood gases test. He also wanted an EKG done and wanted us kept overnight for observation of her saturation. The surgeon came and looked her over and agreed with the cardiologist about observation for the night. At this point it was already 11 o'clock at night, and she was cranky from being off schedule. This concerned them, and they could not get the EKG to read correctly. After they kicked everyone out and let me have time to calm her down and feed her, they were able to do the EKG again. They put us in a proper room, all the way at the back of the ER, to keep us away from other patients. We went to sleep- well, Tehilla did. I don't know how much sleep I got. Her saturation remained normal throughout the night, but her lips remained purple and her color was off.
In the morning, her O2 saturation was between 69-73 and she was checked again by the pediatrician and I was told that her EKG results were good and her blood tests came back very good. They were waiting for a cardiologist to come and check on her again.
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Her saturation started to return to normal and occasionally go too high- all the way to 91. They came to do an EKG again. It was time to give her the Losec (Prevacid) that she takes for reflux, but the ER didn't have any. While I was discussing with the nurse what to do, Tehilla threw up all over me.
We waited several hours for our cardiologist, Dr. Golander to check on her. When he finally came to check on us, he said, "Wow, you look horrible. What's wrong with your face?" Don't worry, I still love him. In fact, I had been in the same clothes, and my contacts for 36 hours, now with the embellishment of throw up. I was in a good place mentally, that's for sure.
I explained to him about what had gone on. The big question now, was whether to move up her Glenn surgery. These interstage episodes are "normal" for HLHS interstage, but that doesn't make them any less dangerous. Each one of them has to be checked out. As Dr. Golander put it, "Better to have a sleepless night in the ER, than to lose your child." While talking with him, Tehilla started crying and her face was blue. Because her saturation was fluctuating so much between being too low to too high, it is an indication that she is not ready for the Glenn surgery, and it would not be successful. Dr. Golander decided to move her heart catheter up. We have it scheduled for January 26th. We go in the day before for blood tests, stay the night and do the heart catheter the next day, and then spend the night. So 3 days in the hospital. The heart catheter will measure the pressure of blood flow in her heart and give them an indication of how ready she is for the Glenn.
He also took the time to explain to me that pulse oximeters can not be depended on for reading very low (low 70s and 60s) oxygen saturation. That they are build for the normal human and Tehilla is abnormal. He was full of compliments today.
Dr. Golander acted very wounded that Tehilla is no longer happy when he picks her up. I told him, "Dr. Golander, she has discovered a world of swings, toys and a warm home. You've got to up your game."
I also discussed with him her reflux. Tehilla had already been on Zantac and now on the Losec, without any real relief. She still usually throws up once a day and gags constantly. He is starting her on Gaviscon, as well as her Losec.
So 15 1/2 hours, 3 EKGs and a blood test later, we were finally released. Thank G-d, she is okay and we (yes, me too) have been napping all day.
Happy 3 months to us! (This kid has got to learn how to throw a proper party.)
you are very strong person B"H
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