I am so thankful to report that Raimey's surgery went very well and her outlook for her GI issue is good.
In all honesty though, her overall recovery has been downright scary at times and there are definitely some ongoing concerns that we need to bathe in prayer.
The main concern is Raimey's heart function. Immediately after surgery, my mom and I stood next to her in recovery as she was coughing and gurgling and gasping for air.
The NG tube that was placed for meds yesterday had irritated her nose and throat. Later she had thrown up the NG tube and while it was hanging from her mouth, and still stuck in her nose and on her face with tape, she pulled on it desperately and it thoroughly irritated her nose and throat. And then it had to be placed again for additional medications needed for surgery preparation.
With the additional breathing tube during surgery, as well as all the extra fluids causing swelling, Raimey was having a very hard time breathing and her heart rate and oxygen saturation was dropping. For awhile, her oxygen was in the 30's and 40's and she had a very purple coloring.
A respiratory therapist quickly came and started working hard to get her breathing under control. They also started Raimey on oxygen and she slowly came back up to her normal 80's range for oxygen sats.
Following this, our next hurdle was where she should go. As you can imagine...when you have major GI surgery, the docs want you in their proximity to watch very carefully. So, following her surgery, despite Dr. Pena's prior orders to have her recover in the cardiac wing, "others" decided to move her back to the GI floor. Yes, I was protesting, but there's only so much you can do with a very hurting 3 year-old in your arms.
To make a long story short, with Raimey's heart anatomy as it is, her oxygen saturation should be in the 80's. That's where her heart is happy...and in fact, putting too much oxygen into her blood is dangerous for her heart. I tried really hard to explain this to Raimey's nurse yesterday, but he would not listen. He had her on 4 liters of oxygen and her oxygen sats at 92 when I began to panic and throw a fit.
My fit resulted in another visit from a respiratory therapist who came to realize the danger of having my daughter anywhere away from the cardiac unit who would understand her heart needs. Raimey was soon transferred to the cardiac floor, whose nurses winced at hearing what was happening with the oxygen downstairs. They turned the oxygen way down to 1 liter, where Raimey's heart was back to it's norm. They also did a fantastic job of getting Raimey's pain under control, as she had been very inconsolable up to this point.
The last big concern was her swelling, as she was so puffy she could barely open her eyes. They did a chest x-ray to make sure there were no concerns with her heart or lungs, and everything looked okay.
During the night, Raimey decided to remove her oxygen cannula so she's no longer on oxygen. Her swelling went down during the night but she does still look much puffier than normal. Unfortunately, without the extra oxygen, she's down to the 60's and low 70's for ox sats which is where her body used to be before the Glenn. No one knows right now why her body is responding quite like this. They don't seem to be too overly concerned yet, but my mama's heart is worried.
Please continue to pray for Raimey's healing...head-to-toe. She asked to be "all done" today, to which we assumed she was asking for the IV tampering by the nurses to be over. When we assured her they were all done, she replied, "No, all done hop-ital." This is day 2, and we are weary.