Tuesday, October 2, 2012
Dallas bound on Thursday
It started out about 6 months ago with the occasional desat into the 50's or 60's about once every other week or so, and seemed to go through phases. Then it began to happen more and more until it was multiple times an hour and nearly every time she would even walk from one room to the other.
Although we were concerned and even talked with her cardiologist, she kept acting fine despite turning blue and being out of breath and she always brought her oxygen right back up within minutes of the desat episode. As long as she kept coming right back up it wasn't quite as scary.
About 4 days of this and we took her in to be seen, she had been desatting a little less but had started having some faster heartbeats when she did desat so that was a concern of possible rhythm problems. We were instructed to buy a blood pressure cuff so we could monitor her multiple times a day along with her pulse ox/heart rate.
A few days later her heart rate began to get very high even while she was sitting still, and didn't seem to come down much at all staying in the 120's. 130's, 140's, 150's, 160. That was it, we called the doctor again and said 160 for a resting heart rate is too high. Meanwhile the last few days she had begun to have some diarrhea and low fever. Both of these symptoms can cause a fast heart rate due to dehydration. Dehydration is not only very serious with a post Glenn baby, but it is also very easy for it to happen since she needs a lot more fluid then a healthy heart kid. We realized that she was cutting at least 3 of her 2 year molars at once. So we thought the pain could also be playing a roll in the heart rate.
During all of this her previous desat episodes into the 50's and 60's seemed to be less frequent but she wasn't being monitored for that quite as much so we aren't sure exactly how often that occurred.
With all this going on, her doctor decided it would be best for her to wear a 24 hour monitor because of the possibility of a rhythm problem. We were going to get that put on yesterday, but as we began to control her pain level and fever with ibuprofen and give her crazy amounts of fluids, It took a day or two, but she started to improve. So we decided to hold off on the monitor until we could talk with her Dallas cardiologist.
All morning Monday she did well for the most part, her fever was on and off, her heart rate was staying in the 120's/130's, and her oxygen was low 80's. By late afternoon she was having lower then usual sats and I started feeling really uneasy, her heart rate kept dropping to a more normal level.
All day today Ella's hear rate has been pretty good usually under 130, but her oxygen is floating in the low to mid 70's and that is just not where we would like it to be.
I have contacted Dallas again, and since Ella is just not making enough improvement or even maintaining well enough for us to wait until her appointment on the 18th we are heading down for an appt the day after tomorrow. We are really anxious for her to be seen and try to figure out the reason for her low oxygen levels.
What we need from you: We NEED your prayers!!!
1. For Ella not to be anxious (if she is too upset they will have to sedate her for her echo)
2. For protection from germs in the hospital
3. For wisdom for the doctors
4. For peace in God's timing
5. For good results and some answers
6. For as little pain as possible for Ella she will be having an echo, an EKG, blood work, an x-ray... who knows what all really.
This will be a long hard day for all of us, but especially Ella. We have seen God's super natural peace over her before in these situations and we ask that you ask God for His peace to wash over her in a way that can't be explained. Thank you all for praying. I will update when I can. We don't know what to expect right now, but we are hoping that she won't have to be admitted. I may not be able to update tomorrow, but I will try to update as soon as I can. Thank you all.
Posted by Amy at 4:05 PM