Hard to Believe
Dave and I find ourselves in some state of disbelief over the events that have taken place the last couple of weeks. Its just really, really hard to believe that we are starting over. Again.
Ashley is feeling much better in regards to her incision. The swelling and bruising are still there, but she is no longer growling and grunting and crying. I am so grateful that she's better.
Basically we are starting back at the beginning and its expected that it will take us months and months to rehab Ash's gut. She will be going back to the OR next Monday(or perhaps sooner if this line collapses on us) to have a line placed in the dreaded femoral vein. We have done everything possible to keep this from taking place, but are now in the position that we have no choice. Ashley will be placed back on TPN and we have to have a line that it can run through. Her current line needs to hold out until next Monday. It is not capable of having TPN run through it.
We have orders to have albumin infused daily. How or where this will take place is some sort of a mystery at this time. We have lots of calls to make and lots of hoops to jump through to make this happen. I'm not sure if you remember the last time we needed this done, but basically its an insurance nightmare and they refuse to allow us to pay for it ourselves because of the costs of it. Approximately $1800.00 per infusion.
For now we are headed home with her. Literally on our way out the door. Our goal is to make it through next week at home in order to get the older kids out of school and give them the opportunity to attend and be a part of all the end of the year events. Then the focus will be full force on rehab for Ashley's sick gut. She is currently on 8ccs of formula an hour with the goal being 80ccs per hour. We have a very, very long way to go.
Still the cause of this nightmare has not been identified. We may never know what has led her back down this path. All we do know is that we are committed to getting her down it once again and moving forward with allowing our daughter to grow up with the best life we can possibly provide for her. Ash deserves nothing less.
Your prayers for us over the next couple of weeks would be so appreciated. Its not only a physical battle that rages inside of Ash's body, but its also a mental battle that is exhausting to us. On top of all that the spiritual battle that ensues is tough as well. Trying to remain strong in our faith and reminding ourselves moment by moment how very much God has indeed blessed us and blessed our Ashley.
Its time to go. Talk to you all as soon as I can. Take care. Trish