5/20/12 Last night Whitney called me to let me know that they were doing "parent care" - which is like the step down unit at ACH - the parents room in with the child and do all the care - just as if they are home. This is a BIG step towards going home. So for those that read this part of the page - we have a couple of options for transfer. Our first choice was to get an accepting doctor at Texas Children's and transfer him for a complex discharge. Basically get him here and evaluated and then discharge him to home (my house) after they were certain we were prepared and they had a good baseline on him. Not happening. Our next choice was to transfer to a transitional hospital in Houston - it is kind of a skilled nursing facility for chronically or serioulsy ill children - and it would only be long enough for them to evaluate and make sure we were prepared for home care. The hitch is they are concerned about Liam and want to be able to reach out to TCH if there is a problem - which is totally understandable - he can be a handful! This option is pending - and we would really love to see this happen. And if he transfers hospital to hospital, he will get a medical transport. The last option is he gets discharged to "home" from St Francis. They have said he can't go to his home in Cameron - it is too far from a large children's hospital that is equipped to deal with transplant kids. So "home" would be to somewhere safe in Tulsa. But Liam needs specialists in cardiology, pulmonology and trach care, nephrology, enterology and developmental. All systems are pretty optimal right now so we really want to get him to Texas as soon as possible! If he is discharged to "home" we will have to provide the transportation - that means an approximately 11 hour drive or a private flight in a small plane with an unpressurized cabin. We have volunteers to fly (3 pilots) and a plane, and even a pediatrician who has volunteered to fly with him. So we wait to see if he gets ready to discharge before he gets transferred. Either way, he is really, really doing good. And we got a crib off Craigslist - once the folks heard his story they wouldn't take any money for it. Whitney and Cheyanne fly to Houston tomorrow. And we are going to meet with some people and go see the transitional hospital. Keep us in your prayers - and keep Liam in your hearts - we are still following the path our hearts and prayers are leading us down. 33000 strong - what a journey this little boy is taking us on. Just keep swimming, just keep swimming.As I have seen what the masses of support can do in the past, let come together for this little miracle and help his family. If you can offer any type of assistance, please contact us immediately at shawnsanomaly@gmail.com
