Home again!!!

Annabel is doing great! We are home and she has her new picc line. We are going to resume TPN hoping just for night time and feed her at a slower schedule of just breast milk! Thank you for the prayers, so I was late in posting. She had a busy day at hospital going down for the line then getting everything together for discharge.

Can I explain?

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.

We are out...

We are out and getting settled in our room. I am so glad we stayed local and she did fine. The doctor chose just to use gas so she never had to stop breathing. She was always breathing on her own. I will post again and explain what happen. Thank you for prayers.

Prayers for Bella please....

Very soon they will be taking Annabel back to surgery to put a femoral central line. Please pray that I have made the right decision to leave her locally. We know both doctors very well. It is Annabel's airway that always has us travel to Houston. I will try to update after she is admitted and comfortable. I am begging for the Great Physician to be with the doctors and Annabel in surgery.

The great outdoors....

So today our weather was great. Nice enough to bring Annabel outside. Rebekah sits on the patio and plays/sings with Annabel. Even though Annabel isn't us to being in her stander/gait trainer for therapy, she loved hanging in the gait trainer being upright outside. Her brother, Derek came by to visit with her. Annabel has always loved to hold your face with both hands, but lately she stare intently at our mouths. She wants to speak so bad. She moves her tongue and her lips and some of the time she utters a sound. We rejoice and she loves it. This has become her favorite thing to do.
She is still off the TPN! This is good but she is uncomfortable, especially in the evenings on her feeds. She is becoming very distended. Prior to coming into the hospital she was on 4 daily feeds of breastmilk alone. In the hospital they wanted her on pediatric compleat alone and I told them I would only agree to 1/2 breastmilk and 1/2 or what they wanted. So that is what we are doing. She had been on pediatric compleat for 5 months prior to going on TPN and was miserable. We are running about 1 feed per day behind and it is crucial she get all the feeds in. This was the minimum amount she must take in without getting IV fluids. So each day we push. It is hard when she screams and is so uncomfortable. Last night we had to hold the feeds due to the yellow bile when we vented her. We see GI on Tuesday and I am glad it is our regular GI. In the hospital you have to see whoever is on service for two weeks straight.
She is off the vancamycin for the UTI and now we are finishing out the Fluconasol over the next four days. We are glad to be home. Depending on how she feels we may allow her to return to school for some hours this week.