Up in the Air

We are scheduled to be "up in the air" and on our way toward Omaha in exactly 10 days. However, its all still "up in the air". We have yet to get any travel plans finalized and therefore I have no idea if in fact we are going to make those appointments in Omaha, Nebraska.

Besides the fact that life and death decisions will be made for our sweet Ashley that week its all a little unsettling to not know how we are getting there or if in fact IF we are getting there. Its been a series of miscommunication, misunderstandings, and mistakes made on every one's part, including mine and Dave's. From sending the information to the wrong people, to lost faxes, and missed phone calls. Who knows what is going to happen after all of that nonsense.

Its a 14 hour drive. We are scheduled to be in our office for a full day on Monday the 27th and a half day Friday the 31st. Her appointments are scheduled beginning around 7am Tuesday the 28th and ending Thursday afternoon the 30th. Driving is impossible. There is no way we could make it in time either direction. Commercial flights with 2 bags of IVfluids and one glass bottle of IV fluids, 2backpacks and one wheelchair is not "doable". The TSA has a "ball" when we try and get Ash through the gates. Its just too dangerous, especially with the frail state that her line is in at the moment. We have no idea if the med flights are going to be approved and even if the trip out is approved there is no way to secure approval for the return trip on Thursday evening until after we arrive in Nebraska with no guarantee that it will be granted. The LAST thing that we need to happen is to be stuck over that weekend in Omaha. I honestly just don't know what is going to happen. We may or may not be able to go.

If in fact we do make the trip I have very mixed feelings about how the week is going to play out. First thing on the schedule is a procedure in IR(interventional radiology) to attempt to "create" line placement above her diaphragm. If in fact they find a way then they have been instructed to "go for it". Past experience tells us this could be very difficult for Ashley Kate. Our hope is to keep her out of the hospital and get through this evaluation on an outpatient basis. Its the goal of all involved, but the last time she took a trip to IR she lay on the bed on a ventilator for 4 weeks. Not expected, but in fact the results of the procedure. If they can't find access for Ashley Kate it will no doubt be devastating for us all. The current hepatic line, although functioning, is in bad shape. The skin around the exit site of the catheter has opened up and is actively oozing a mixture of blood and sirus fluid and a creamy discharge. Its frightening! There are no signs of infection presenting themselves and our girl is as happy as she has ever been. Upon discharge last week from Shreveport we had all agreed to begin an IV antibiotic to protect her from an infection beginning until we could get to Omaha. I found out once I was home that our transplant team discontinued those orders stating she could not be on one UNTIL she got an infection. We are all at odds with that decision since our goal is to sustain and protect Ashley Kate's life and an infection in this hepatic line would be disastrous for her. Anyway, the line flushes and draws and infuses and for those things we are very grateful. We are forced to open the dressing up and change it about every 48hours when ideally you don't change central line dressings more than once a week because of the infection risks. It is a sterile procedure and it is very methodical and time consuming with the state of her line at this time. My heart races each and every time we do it knowing the dangers that are there. Needless to say, a line will have to be secured during this trip to Omaha. Whether or not they can place one for transplant or not we have to have a source to "feed" Ashley Kate her IV nutrition. The hepatic line will have to be repaired, secured or replaced while we are there. We are truly at the end of IV support and if these attempts fail we have no answers as to what will take place in the life of our gherkin from that point on.

I have discussed in detail the process that will take place in her body once adequate nutrition is unable to be given and I will tell you that it shook me to my very core last week as I forced myself to ask the questions and sit and listen to the answers. It is not an option and I can't wrap my mind around those days. I pray we are never, ever in that place with our baby although I know that we sit closer to it than we ever have before at this time.

Our hearts are trying to focus on the holiday and not the days after it. I am forcing the fear and the worry to take a back seat to the enjoyment of having my children all together here in our home for Christmas. Ashley Kate makes us laugh every single day. We are all enjoying our time with our girl and there is not a moment that goes by that any of us take for granted with her.

So for today, the trip is "up in the air" and I don't know what will happen. I do know that we have to keep her safe and happy and home for as long as we can and that this trip can not extend itself into the next week. Lots to pray about over the holiday.