Well, Emma Kate and I are still in the step down unit. It has been a long few days with very few answers and even less sleep. She still can not seem to keep her food down.
Even with this, Emma Kate is very happy. She smiles at all the doctors, nurses, people walking by, you name it. She laughs with me and we play almost the entire time she is awake. She has enjoyed the 20x a day we go on walks because she gets to see more than just her room. I, selfishly, do this just as much for me because this room doesn't get any bigger.
Her heart function is looking good. Blood pressure, heart rate, blood gas levels, everything is doing what it is supposed to do. Her sats are consistently in the high 70s to low 80s which is where we want them to be. Her cough has gotten better as well as her congestion. She is now going potty (i still can't believe I use this term on a daily basis) on her own so she is no longer constipated.
All of this leads to the one setback. Emma Kate is refluxing quite often. They have put her back on continuous feeds through her ng tube to slow the reflux down, but it hasn't helped much. This is the only time during the day that Emma Kate shows any pain. Her face turns dark red and she tries with all she is to get this junk out of her. The second it comes up, she looks at me and gives me the biggest smile. She is so relieved when the pain is gone.
The good news is the doctors have ruled out several things. Her chest x-rays came back today clean so they feel that the cause is not pulmonary related. Her diaphragm is still a little elevated, but has gone down over the past few days so they do not feel this is a cause. They are going to continue to monitor this every morning but are pleased with the progress. And as I mentioned, her heart function is looking great so they do not feel there is a cardiac issue.
Dr. Kirshbom, who was out last week, decided this morning to order an upper-GI. We have that at 11 this morning and hopefully will find the cause of this problem. I will update this afternoon with the results. I pray that they are able to see what is causing this reflux and are able to fix it. I am ready for me and Emma Kate to be at home with Bethany and Anna Brooke. More than anything, I am ready for this pain to be gone from my daughter.