Avery has another leak. Please pray hard for her and our family. We are waiting to find out what exactly is going to happen and when. Dr. J is on vacation. We will probably be admitted to Pitt and then fly out to Boston. There is a very slight possibility we will be able to wait a week at home and then revaulate. Please pray this is the case. I am beyond devastated and have no idea how I am going to cope with Avery having another surgery, another long recovery process, and being away from Aiden for so long.
Boston says stay. Greenville says go. No one ever seems to be on the same page. The surgeon here thinks that Avery really needs to go to Boston to have surgery sooner than later. Boston says we should bring her home for 2 weeks, back to j-tube feeds, and then revaulate (while keeping a very very close eye on her). The surgeon here disagrees so much that he is calling more Boston people to tell them his opinion. I don't know what to think. I wish so badly that this was just a bad dream. Hopefully we will know more tomorrow on how to proceed and where I will be riding out the hurricane, Boston or NC.
They will not pay for a medical flight. I am on my own to get Avery to Boston. Everyone seems to agree that it should be ok to keep her home over the weekend and until the hurricane passes. Then we will catch a commercial flight to Boston as soon as possible. Please take a moment to pray again for my little princess. She has been through so much. Please pray that she continues to have no symptoms from this leak and that we have a safe, boring, no drama, no issues, commercial flight to Boston.
We made it through hurricane Irene with no damage and never losing power. Thank God! It was a long storm and the winds were pretty strong. Many of our friends lost power, some are still without power. Our neighborhood was lucky. Most of the damage was confined to shutter, shingles, trampolines, fences, and those pretty white vinyl fences did not stand a chance. Around Greenville, there was a lot of flooding and downed trees.
Avery seems to be fine right now. I am waiting for the surgeon in Boston to call me back and tell us when to come and what the plan is going to be. I talked to his nurse and they got the cd with all the video and pictures from her swallow study. I don't know if they will admit her right away or if they plan on waiting some, maybe we could stay down the street in family housing. This is going to be so hard. Avery has been getting stronger everyday and steadily gaining weight. Aiden woke up twice last night crying about missing his mommy. And I am not even gone yet. I wish there was some way I could take him with me. I have added a couple of new pictures (for those of you who do not have a facebook account).
Please continue to pray for Avery and our family. Thank you.
The plan.
Boston feels so confident that this leak will heal on it's own. If only I have not heard that a million times from them and been disappointed week after week. But I am trying to hold onto hope, that maybe, just maybe, this time they will be right. This time Avery will catch a break. The plan is to fly to Boston, hopefully Thurday, Avery will have a suction tube placed and she will have a dialation on the 8th. Just so happens her GI doc is out of town. We have the worst luck. Then we wait. I hate playing the waiting game. So please pray that THIS leak does heal on its own, sooner rather than later.
We made it through hurricane Irene with no damage and never losing power. Thank God! It was a long storm and the winds were pretty strong. Many of our friends lost power, some are still without power. Our neighborhood was lucky. Most of the damage was confined to shutter, shingles, trampolines, fences, and those pretty white vinyl fences did not stand a chance. Around Greenville, there was a lot of flooding and downed trees.
The plan.
Boston feels so confident that this leak will heal on it's own. If only I have not heard that a million times from them and been disappointed week after week. But I am trying to hold onto hope, that maybe, just maybe, this time they will be right. This time Avery will catch a break. The plan is to fly to Boston, hopefully Thurday, Avery will have a suction tube placed and she will have a dialation on the 8th. Just so happens her GI doc is out of town. We have the worst luck. Then we wait. I hate playing the waiting game. So please pray that THIS leak does heal on its own, sooner rather than later.
We leave tomorrow at 6:30am out of Raleigh. Change planes in NY and then head on to Boston. They want Avery to be admitted once we get there. I was hoping that I was going to be able to keep her at family housing until her radiology appt. So much for that idea. I have been trying hard all week to not think about leaving again. Not think about how long we would be gone or what the outcome will be. I have done pretty well until today. It is really starting to sink in that Avery and I will be back in Boston so far away from home. Have not even finished packing yet. I want this to all be a bad dream and I want to wake up now. Labor Day was going to be our first holiday all together, not in the hospital.
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