PLEASE EXCUSE THIS WRITING..trying to type on iPad, very tired. Hopefully make more sense tomorrow.
Probably not! The last few days have become hard to get feeds in. She is becoming more uncomfortable each day with feed. We are draining more bile at the end of the day. We have been free of gagging/retching but is coming back. Last night we ran Pedialye at a low rate.We realize how uncomfortable she has become with her sleep as last night on Pedialyte she slept continuously. I have been wanting to do what the doctor sent her home with but in my heart I knew it wasn't working. We were going to GI doctor in Houston tomorrow so was just trying to make it to this appointment. Our nurse was drawing labs this morning and she was able to flush but could get almost no blood return. So Houston said probably dehydrated or line migrated out of place.She did fluids due to not getting her feeds in. Also her line was in close but not ideal. it was wedge against the tissue so when they tried to pull the tissue pulled to the line and made blood draws hard. When you put in TPN and certain antibiotics they are toxic to tissue and will cause damage to the tissue. There is also some question to how much air/gas pushing up on her heart and lungs and causing these lines to not function properly. There was talk about SVC and running some test for this. Everyone from here to Houston says her veins are mostly inaccessible for much use.
Annabel has never been put to sleep locally. We do not have pediatric anesthesia here so the need to travel to Houston due to poor airway issue. We had to decide something very quickly. I remembered my neighbor was anestiologist and he is always asking about Annabel. He said he worked on child so I request him. He came right away. He made a plan and decided to use gas and not risk airway. The procedure with the femoral line is quick. She stayed in recovery longer and was so alert when we were able to see here. I just wasn't ready for her to return to Houston. Everyone here knows her so well. I must say I am spoiled here. Tonight I don't have to endure an uncomfortable couch but an adjustable hospital bed. We are taken care of by people who have known her since birth and become very dear friends. We are blessed.
Not sure if any of this makes sense. I know I understand but have trouble communicating it.