Trachs, Children's, and Transfers, oh my...

So, I was trapped at nicole's house until yesterday due to the crazy weather. Lots happened at the hospital while I was gone. Pretty much everyone is in agreement that Molly will need a trach. She could either stay in the hospital,waiting on her lungs to get stronger and for extubation. That could take weeks to months. Our alternative is to trach her and get her home within 2 months give or take. So, here is the plan. We ate currently waiting on a bed to open up at children's hospital. At this time I am not sure if she will be in the NICU or PICU (pediatric intensive care unit). At any rate, once a bed opens up, they will transfer her there. The doctors there will evaluate her for a week or two. Then we will do the surgery. Probably at the same time, they will put in the g-tube. Since Molly hasn't eaten anything by mouth ever, this will be how she takes in all of her nutrition. We will eventually work with therapists who will teach her how to eat by mouth. Anyway, it will take about a week for her to recover from surgery. All the while she will be paralyzed. This will allow her time to heal while not trying to yank the ventilator and trach out. Then we will move to the pulmonology (lung) floor for about another week. Then, Molly will be transferred to Our Children's House at Baylor. Tim and I will learn how to take care of her. We may be there for a month or so. Then, home. We will have to have in home nursing 16 hours a day. I worry about the quality of care we will get in SS.  But, we will cross that bridge when we come to it. She will most likely be on a home ventilator that we will eventually wean her off of over the next year. Then if all goes well, she will get the trach out (decannulated) after two years. This all sounds scary, and believe me, we are scared. But, it is what she needs to breathe and to get her home. She will have less risk of infection being home, plus she can start meeting developmental milestones. Tim and I will be staying at the Ronald McDonald house close to childrens. Assuming they have room.
In the meantime, Molly is doing awesome. She is taking all nutrition through breast milk. No more TPN! This is huge. Hopefully her liver will start working better and all the damage from the TPN will start reversing. She is our awake and curious little peanut once again. Her fentanyl has been weaned down to .5. She may not have to go on methadone to combat the withdrawals from the fentanyl. Methadone sounds terrible doesn't it? She seems to be doing much better on the lower dose of fentanyl, so maybe we dodged the methadone bullet. Other than that, not much to report. Will keep everyone posted about the transfer situation.