Tomorrow we get sprung! I cant wait to get home. Megan looks better and I hope that we got rid of this infection for real. It took the lab 7 days to identify the bacteria. It seems it is one of the rarer ones that they see. I cant even pronounce it - alcaligenes xylosoxidans - it is one of those that only IV antibiotics works on and it is resistant to almost all. At least we know what it is and can treat it. The bad news is that now that it is colonized in her trach she is more susceptible to it, just like psuedomonas. When infectious disease does see this one it usually is in a trach because they like it there. It is a common bacteria in our environment - our houses, etc but usually it does not cause infection. Key word there is usually - that does not apply to Megan. The change in her skin tone and eyes is so obvious. This thing really had a hold on her. Today was the first day she looked this good and it made me see how bad she has been looking. It is hard to see it when it develops every day right in front of you! Been talking to the pulmonology doctors about decannulation all week and Pat and I have discussed our feelings with them about it and how strongly we feel. This trach served its purpose. It was there to deal with an acute illness and recovery but the acute illness is gone, her airway is fine as are her lungs. Time to get rid of it. The Dr's point was that she can develop a respiratory infection after it is out and can have trouble. My point is that she is developing respiratory infections from bacteria now and is having trouble.........her risk of developing the infections goes down instantly once the trach is gone - no more open wound in her neck that allows germs to bypass her natural defenses and filters in the mouth and nose. And no hands constantly touching it, suctioning - we eliminate so much exposure. Also no more psuedomonas or the other thing there either. Cant live there anymore and wait for an opportunity to attack.
The boys have been wonderful again. James had finals last week. What timing - finals while your sister is in the ICU, your mom is gone so things are out of sync already and then final exams. Talking to Ryan on the phone is sad - he asks with such desperation about when I will be home. To top it off the boys had no school Monday and Tuesday and then Pat had to go away for business and flew in about an hour ago so both of us were gone. Grandmas were there to help out but they want their "normal" home life just as I do. Pat and I have seen each other in passing for weeks now. Really strange.
I asked Maxim Healthcare for a night of nursing. Should be $385 per week for one ni of nursing. $1540 per month for 4 nights of sleep. Who knew sleep could cost that much - 385 a night? I guess sleep can be considered a luxury item or pampering in some way. Like a spa day!! That makes it seem better I guess.
Megan is sleeping - O2 is 94% and heart rate is 73. Just last week her heart rate was averaging 180 and as high as 210 and she needed oxygen.
Thank you God - thanks for seeing Megan through this one too. Please see her through a healthy and successful decannulation so she can enjoy a better life. Ryan asked me why you just cant fix her. I told him I dont know the answer but I know you dont want her to hurt either. He asked if she would be able to go on vacation with our family this summer. I told him I hope so..and to aks you for it when he prays and I will too. Amen.