Posted (jooosh) in All Posts on August-7-2008

Yeah…that’s what I said…surgery. You can see by the look on Ella’s face she’s not too excited either.

I’ll get to that in a minute, but first let me bring ya’ll up to speed. Although I had a work project and couldn’t get to the hospital ’till midnight, I gave Tina a break so she could go home to sleep while I spent the night with Ella.

Once again the prednisolone kept Ella up pretty much all night. She was restless and woke up about every 15 minutes. She finally went to sleep around 5:00am but only for about 45 minutes or so.

Her oxygen was also weaned down to 1 liter last night, and she seamed to be tolerating it ok. She took a long 3 hour nap in the late morning and during that time her heart rate and saturations looked great. Her heart rate hovered around 105 bpm and even dipped as low as 89!

Later in the afternoon Ella started having some problems breathing. Her breaths became more labored and she started getting upset. I let the nurse know what was going on and we began to increase her O2, both in her cannulas and with blow by. Ella had a real hard time recovering but she finally did. We think we figured the cause of this one though. We believe that Ella’s O2 is being weaned too fast.

When she was on a liter of O2, her saturations hovered in the mid 90’s but would dip into the low 90’s as well. When this would happen her body would try and compensate by working harder to maintain the higher saturation. By the afternoon, she was just worn out which caused her to spiral down. We know Ella likes to take her time with things, so moving forward we will be weaning her slooowly so we don’t encounter this again.

Also, Ella had her swallow study done. It wasn’t real bad, but it wasn’t perfect either. The good news is that she is not aspirating immediately when she swallows, but her timing is off enough to where the food is being stopped by her vocal cords and muscles in her throat instead of the epiglottis. We’ll find out in the coming days the recommended approach for giving her food and drink orally.

Ella had an EKG done this evening just as a precautionary measure because her heart rate monitor kept throwing these weird alerts. The doc didn’t think she was actually experiencing them, but just to be on the safe side, she wanted a test done.

The big news of the day though relates to the upper GI study they did the other day. If you remember, the technician told Tina that everything looked ok. But after the radiologist studied the images in detail, it looks as though Ella’s nissen has pushed past her diaphragm and is up in her chest area. This is the most likely cause for her increased retching when she drinks or starts to cough because it’s pressing against her esophagus.

Repairing this will require surgery…something we’re really not excited about to say the least. We still have not talked about all the details with the surgery team, and we’re also waiting to get a consult from Dr. Kays before we do anything. The earliest the surgery would even take place would be the middle of next week, but we’ll just have to see. I just know that with all of Ella’s history, no surgery is going to be very straightforward.

Even with all this, Ella is taking it in stride. She’s seems to be feeling better tonight, even acting more like herself.

Please pray for our girl in the coming days and for wisdom so that path is made clear for the doctors and in our decisions.

Praise God for this sweet little Bun.