Well, we've had yet another issue with feeding... Emma Kate has managed to gag out her third feeding tube. This was the second NJ tube they had placed in two or three days, and it didn't last more than probably 18 hours (actually she started to cough it out her nose overnight but it was salvaged that time...). So.... she's back up to full rates on her TPN (again) and we are waiting for a GI consult (still). Hopefully GI will evaluate her tomorrow at the latest and we can figure out how to proceed- the girl needs more in her belly instead of in her veins! She did pretty well today with some mac and cheese and applesauce, and she chugged on some water too, But they don't think she can take in enough yet to sustain her energy needs and hydration.
She was transferred to the "complex airway" unit where the nurses routinely deal with airway issues. The room is nice and spacious, with enough room on the floor for a nice play mat- it's much better than trying to play in the bed all day! Emma Kate is getting stronger and stronger again, and she's just being held back by her IV lines! She's having a blast playing with her My Little Ponies and other toys, and watching Elmo videos. She is one of only two kids currently in the unit, so she gets a lot of attention!
The plan for now is to get the GI consult tomorrow regarding the vomiting issue and how to feed her, and she is scheduled to get a bronchoscopy on Thursday to see where we stand. Dr. Rutter still won't be back in the country till the following week, but one of his associates will be doing the exam.
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I do not know you personally but I have been praying for you and your family. I am a mother of 3 daughters and a grandmother of 4. When my daughter had cancer all I wanted to do was endure the pain for her, take it all away from her. When three of my grandbabies were born preemies if they had to have IV's or test I would whisper in their ear NANA will take away all the pain. I know how your heart feels and my heart goes out to you. I wish I could do more but the one thing I can keep doing is pray. I will continue to pray for your family as God lovingly holds you in His arms and loves you every day. Linda
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