I have been terrible once again at keeping this blog up-to date. So here are my last couple of entries from Avery's Care Page. 

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 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.

I am going to print this out and hang it on my fridge.

I love my kids. They are my entire world.

Aug. 29

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.
Stacy, Kevin, Aiden, and Avery

Our short but sweet summer.



Meet the Pirates

We took the kids to the annual Meet the Pirates event at the ECU stadium on Saturday. It was a hot one but Aiden had so much fun playing and bouncing with his BFF Kayleigh.

2nd ER visit

Well another long, frustrating, almost pointless visit to the ER yesterday. Avery's j-tube came out again. The balloon had a hole in it, I don't know what is causing it to get the hole. This time I called the hospital ahead of time to let them know we were coming in and we would not be having a repeat experience. Things started off well, we got into a room quickly. Then it all went downhill from there. We did not have a replacement tube b/c we just used our replacement two weeks ago and the new tube she is supposed to be getting had not arrived yet. We put in her g-tube to keep the site open and so we could give her meds. The hospital staff had no clue what to do. People just walked in asking questions and basically telling us they would have to call someone else to get answers. We waited and waited and waited. Six hours later we told them we were taking Avery home and that we would give her slow g-tube feeds to avoid staying the night. All the right tubes were located today but there seems to be only one doctor to put it in and he is on vacation and then working a week of nights so he can not put it in. I thought that Pitt had the capabilities to place a simple j-tube or g-j tube but they do not. It is insane. It is very sad that I am probably going to have to start driving all the way to Duke or Chapel Hill to get a tube replacement.

Here are some pics from Girls Beach Weekend. We had an amazing time! I love these girls.

They know me in a way no one else ever has. They open me to things I never knew existed. They drive me to insanity and push me to my depths. They are the beat of my heart, the pulse in my veins, and the energy in my soul. They are my kids.

On Tuesday Avery's j-tube popped out. It happened right before Kevin and Aiden got home. We knew exactly what we had to do. We grabbed our replacement and took her straight to the emergency room. We told them as soon as we got there that this a time sensitive thing. It had to be replaced soon or the hole could close up. Everyone acted like they understood. Then we waited and waited and waited. We checked twice about the hold up and they just kept saying they would get to us "soon". "Soon" turned into hours and hours. By the time we got back into a room it was too late to have it replaced right away. We were going to have to be admitted overnight. I was beyond mad. It was after 9pm before we saw a doctor. My next concern was that Avery had not had her meds or any fluid since 4pm. She needed an IV. I had to continue to request that she get one. Nurses and doctors claimed it was coming but it never did. I asked to speak to the charge nurse. She never showed up. I told the doctor three times I wanted to make a formal complaint. He blew me off. Avery did not get fluids until after midnight when she went to the floor. Then her night nurse called down to the ER and that nurse said that she gave Avery some fluid. LIE!!!!!! I was about to lose it. It was almost 1am before she got her medicine. Around 2am we were finally able to get some sleep. At 6am the confusion began again. First they were unsure if she was on or off the radiology schedule. Why that was so hard to figure out, I have no idea. Then they came in to talk about sedation. I refused to sign anything because Avery never needed sedation for a tube placement. They wanted radiology to talk to me after I signed the papers. I don't think so. Come to find out, they were wrong and sedation would not be needed. At 9am we were the next case. While we waited our turn they came in to tell me that Avery had MRSA and how to treat it. Ten minutes later someone came in to say they had mistaken. She did not have MRSA, it was the patient next door. It was 1pm before we made it down to radiology. The whole procedure took less than 15 minutes. The surgeon said we could leave as soon as the tube was replaced. It was after 5pm before we got discharged. Slow people who did not have a clue. That sums up our stay. I understand that most nurses, doctors, ect do not know a lot about EA. I get that. But feeding tubes? That is easy. It is a simple replacement that takes very little time to replace if people do their job. There are several other things that happened that were just not right. But I will end my complainig here. Avery did eat 1/3 jar of carrots while we were there. I think her getting hungry is going to be the key to getting her to eat more. She rarely gets that hunger feeling because she is on continuous feeds. She did a great job. She was excited about it and swallowed all of the bites she was given. It was amazing feeling! We are back home now. Thank God! Even having to go back to the hospital for a short period of time brings back a flood of emotions and anxiety.

Avery had her first regular peds visit today. Right now she is 16lbs 8 oz, 10th percentile for weight. I am ok with that since Aiden was pretty much never on the charts at all. No major news. I called and spoke with some docs in Boston and we are changing one of her meds and probably changing her j tube to a gj tube. We had a nice, relaxing weekend. Spent a lot of time inside, if it was 100 degrees then it was raining.

We played dress up.

Played in the puddles.



Hope you had a great weekend!