Emily’s Very Bad Day

Edited to add:
Emily was put on the vent about noon on Sunday. She had been desating into the low 80’s and we feared that it could be damaging her more. Initally they just had her on the conventional vent with her “NO” gas or Nitric Oxcide. We thought that this would stablize her and we could get her transfered to the Childrens hospital on Tuesday when all the doctors were back from the holiday. She did well with it for a while. – Jennifer

I’m sorry for not posting sooner, but we spent the night at the hospital yesterday. We found out early on New Year’s Day that Emily’s condition had worsened and we came right in. She was back on the oscillator and had been given medication to paralyze her so that she won’t interfere with the machine. Her oxygen saturations were in the 60 % range for a while and they thought that she wasn’t going to make it. Her nightime primary stayed for a couple of hours, and one of the nurses called her other two primaries to tell them, who came in on their day off to see Emily. She got a little better, but her saturations took hours to slowly creep up into the 80 % range. One of Emily’s nurses also noticed that she started having siezures, so they scheduled an EEG, which was taken yesterday. They initially tried to move her back to the ventilator on Tuesday to try to a) get an EEG b) move her to Children’s Hospital, and c) get and MRI and/or a CAT scan. This proved to be disasterous as her saturations dropped into the 50’s and took several hours to get back into the 80’s. They were able to do the EEG despite the interferance from the oscillator and the neurologist was able to see that Emily is indeed having siezures, but without and MRI or CAT scan and an assessment (which can’t be done on the medication), she can’t tell us how bad they are. The good news was that she can see that Emily does have normal brain function. She’s been slowly improving but is very sensitive – last night her saturations finally made it back into the 90 % range, but the doctors have to be very careful in planning what tests they want done because she desats very easily and takes hours to recover. For now, she’s been getting one-on-one nursing because she’s so high maintenance.

It must be very scary for our little girl. Although the meds have her paralyzed (on purpose – she never liked the oscillator!), she is still concious of what’s going on around her. We stay by her bedside talking to her and touching her so that she knows Mommy and Daddy are nearby. She also cries sometimes, mainly when she gets her nose suctioned. None of the doctors know what happened to her, but they suspect an infection and are treating her for meningitis. The only way to be sure would be to do a spinal tap, which Emily wouldn’t tolerate now. The viral panels have all come back negative so far. She also had an echo done on Monday and the cardiologist said that whatever is happening has put a lot of strain on her heart. Her pulmonary hypertension had been improving but is now worse than it was last month when he saw her for the first time. He said he would like to do more for her, but it would involve inserting a catheter but the blood pressure in Emily’s lungs is so high right now he’s concerned that she would not survive even minimally invasive proceedures.

Everyone please keep praying for Little Miss Emily. She’s been through so much and we thought that we were finally past the worst of it, but this just doesn’t seem to end and things seem to keep getting worse and worse.

Tony