The Journey

Victoria is improving and becoming more stable every day. They are slowly weening her off of a bunch of meds she was put on Tuesday when she crashed. No more dopamine, she is almost off of nitric oxide. Her heart rate and 02 are back to normal. Hopefully today they shut off the Fentanyl. They doctors were very impressed that she was able to maintain herself when her 02 was so low for so long in the 30s. She has not had a fever in over 24 hours. They have her on 2 antibiotics which seems to be helping. She tested positive for another staph infection. The docs believe that Victoria is aspirating her Silvia into her lungs and then gets sick because bacteria gets in the lungs. They are stumped as to why she did not aspirate before her Glenn surgery and after it is a problem. There is nothing they can do for that however, they believe a tracheotomy would be the best thing for her at this point. They explained to us that even though she did not have problems breathing the trach may help with aspirating. I wish we knew if it will help. However, we do know that victoria's body does not tolerate intubation. The last 3 times they intubated her she almost died. They are stumped about that too. When you intubate a child it usually helps them not hurt them. With the Trach she will not have to be intubated again from which I am told. The docs say that her low saturation's come when she aspirated her Silvia and then her lungs start to collapse. This has been the crazy cycle she is in for the past 3 months. They are hoping the trach helps but they said they will not know for sure until the procedure is done. For the next couple of days the plan is for Victoria to get her strenght back and then we will talk to the ENT doc next week to proceed with the trach. Please keep Victoria in your prayers. thank you .. talk with you soon....