Two Steps Back...

It seems like we keep going one step forward, then two steps back.

Just after I finished the blog last night Taylor started to have to work really hard to breathe. She was really congested, her respirations were really fast and had indrawing in her chest. She also had another fever. The nurse paged a doctor. She was given back to back ventolin through a nebulizer, and they put the oxygen prongs in her nose. Given the recurring fevers, and the increased work of breathing, the doctors were concerned about aspiration pneumonia. They wanted to put her on antibiotics right away as a precaution. Because of the ketogenic diet there are specific antibiotics that have no carbohydrate content. Because it was after 1am at this point they didn't have access to it, and the emergency room didn't have it, so we were to wait until the morning. Poor Taylor was beyond tired at this point, she still hadn't fallen asleep and it was approaching 2am. They just kept re-examining her and asking the nurses to suction her. After she was breathing better I was getting more and more frustrated that the doctor kept coming back and prodding at her. I told her if she wanted Taylor to have a good night that she needed to be left alone or her seizures were going to get out of hand from sleep deprivation.

God bless Nora our nurse, she left Taylor alone after that, she didn't do the suctioning through the night that the doctor wanted. That would surely have put poor Taylor over the edge. And she slept peacefully once they left her alone.

This morning she got a dose of the antibiotics. And poor Taylor looked like she had been in a fight and lost. Poor little muffin has really goopy eyes and a crusty nose. And she developed red circles all around her eyes. Poor thing looks terrible and has had this tired sad cry off and on today. Swabs were ordered of her eyes.

When the docs came in for rounds they had decided to put the antibiotics on hold until they could confirm the need for it. There was also a mixup with the ENT clinic regarding the FEES study, it's scheduled for tomorrow morning at 8:30am, not today. The pediatrician is a bit concerned about whether or not it's a good idea to proceed with the study right now when Taylor is so sick. Would it be a true picture of the way Taylor handles her feeds? She said she'd give it some thought through the day and we'd talk more about it later.

This afternoon Taylor was sent down for another chest x-ray. I'm kicking myself for not bringing the camera down with me, they did it in the most interesting contraption called a Piggostat. I found some pictures online of what it looked like...

I talked with Dr. Vomeiro later in the day, the chest x-ray was fine, no indication of pneumonia. We decided that it's probably best not to do the FEES study tomorrow, but we'll wait and see in the morning how Taylor is in case she has some remarkable turnaround. The swabs taken from Taylor's eyes this morning are growing a bacteria, so she does have an eye infection in both eyes. As well as an ear infection in both ears. It's quite common for a secondary infection to manifest after one is already present. So antibiotics have been started, and drops for her eyes. Poor sweetheart looks like a train wreck.

Dr. Vomeiro is going to call the ENT clinic first thing in the morning to ask when we could re-book the FEES study as an outpatient. If it's going to be too far down the road, then we'll go ahead and do it tomorrow. But if they can get us in in a reasonable time frame then we'll re-schedule it. I have been quite anxious to get these feeding answers, but the test is pretty invasive and uncomfortable under the best of circumstances, so to subject Taylor to that right now seems unfair.

If we do not do the FEES study, then they will keep Taylor here until she turns towards recovery, maintains her oxygen sats and stops spiking fevers. Then they will discharge us and we will maintain the NG feeds at home until our re-scheduled FEES study appointment.

So we shall see what transpires in the morning.