Surgery Day

Well what a crazy week. I am utterly exhausted....... I can only imagine how Victoria feels.

Eddie and I had meetings this week to discuss the game plan for Victoria with her docs. We really respected our discussion with Dr. Zahn and Dr. Bolivar they are really good docs along with many of them here at Miami Children's. They believe the only way to get Victoria home and give her a chance would be with a tracheotomy. We have been reluctant for some time but decided to agree with this care plan at this present time because nothing else seems to be working, in other words there really is no other option. The longer she is in the hospital the more chances of her catching another bacteria germ or virus. She is currently on another antibiotic called Zosyn for 2 bacteria infections and her white blood cell count is up again the last couple of days. So we want to give her as much help as she needs right now and the docs really believe strongly the trach will help her. We pray, trust, and believe because that is all we can do at this point. Victoria had her surgery for her trach and replacement of ear tubes Friday. She came back from surgery around 8p.m. and she is in a lot of pain so she is paralyzed and sedated. Last night was pretty tough. Victoria does not like change in general and surgery of course was an adjustment for her alone. She came back from the OR with very low saturation's in the 60s. Also Victoria had a new nurse one that has never taken care of her before. That alone is hard because Victoria is so complex things that you would normally do with others do not work for Victoria. She had a major episode of desating intot the 40s last night when the nurse decided to stop her sedation and paralytic for 10 minutes so she could run a diuretic through the iv port. The diuretic called lasixs was not compatible with her sedation medication. Victoria freaked out to put it mildly. She started moving around like crazy. Her heart rate and blood pressure went up significantly while her saturation's went down to the 40's. Just after getting her stabilized this happens. I got really mad because if she would have told me what she was doing I would have told her no way, I know that Victoria will flip. It is now noon Saturday this happened at 11 p.m. last night and she still has not fully recovered. It is frustrating to me when they give victoria a new nurse that has never taken care of her before right after surgery on a Friday night. It seems they always learn the hard way with Victoria, of course at Victoria's expense. She was given a bolus of sedation called medaz that makes Victoria crazy it has the opposite effect on her. Of course they did not know this and of course they did not ask Mom. You know what happened. I have to remember that nothing is perfect but I'm so tired of the same issues taking place. It just seems so simple to me to give Victoria a nurse that knows her I would sleep better and Victoria would be better off. This morning they decided to put her on a new antibiotic called zyvox because she looks so pale and her saturation's are not coming up easily plus her white cell count it up. They want to make sure she is not getting another infection. Also she is getting a blood transfusion right now , the 4th transfusion in the past 4 months because her hemoglobin is low for her norm. It is sitting around 12 to 13 however because Victoria's saturation's run low in general they like her to be around 16 to 18. Ok I am done venting for now. Please keep us in your prayers this road is extremely long and tiring. We will keep you all up to date.