Okay, so we decided to leave Autumn at the hospital by herself tonight. I feel so sad for leaving her but James and I have not been able to be together away from the hospital for about 3 weeks so I know we need that time alone together. The nurse assured me that they would take good care of her and that I can call anytime and as many times as I want to check on her. I also know Autumn sleeps well at night so hopefully she will not even notice we have left her. I was able to get her asleep before we left--she loves laying her chest on my chest and sleeping on my shoulder--I think it feels good for her to get off her back.
She has been doing great these last few days. She is taking her bottles like a pro. I decided to give up the breastfeeding because I was not making enough milk for her and I am too tired to try to pump every 3 hours to get my supply back up so she is on formula and I think that will work best for us when we are home anyways. I felt bad for giving up but I know if it is stressing me out then it is not worth it--I already have enough to stress out about. We are still just giving her 2 bottles a day to build up her strength. Today though her little foot was completely swollen because they put a id band on her ankle and a security bracelet on her ankle so it stopped the circulation to her foot. Her foot was hard and you could not even see under her little toes. We took the bands off and propped her foot up so this evening it looked much better. Her face is also a little swollen and I am not sure what that is from--we are wondering if it is from the trach ties being tight on her shunt tubing but I forgot to mention it to a nurse today so we will see how she looks tomorrow. It may just be her growing and getting fatter-who knows. She weighs just a little over 9 lbs. now. :)
The training is going along really fast. They have sheets with 4 different phases on each sheet of things we have to accomplish. We already finished phases 1 & 2 and just have to each do one more trach change to finish phase 3. We started on phase 4 today and hopefully will finish it up by the end of this week. Phase 4 consists of learning the vent, changing the tubing, and learning how to transport Autumn. Everything has been pretty easy so far. The RT showed us how to change the tubing today and James was in charge on bagging Autumn while we changed everything out but she did most of the breathing on her own so he did not have to give her many breaths. The doctor said they may work on changing some of her vent settings this week--they have already been trying to see if she can go without oxygen at night but most of the time she ends up desatting a little and needing some. She is really doing awesome though and everytime she has desatted she has always come back on her own since being trached.
So, tomorrow my goal is to call insurance to see if there is anything I can say or do to convince them that we need home nursing and to call and find some home nursing and home equipment company. We also found out that the house will need to be inspected before going home so I want to get the ball rolling asap. We have made a plan B if we don't get home for Christmas but I am still praying for that miracle.
No comments:
Post a Comment