Meeting

Our meeting went really well yesterday. We really like Dr. Adams--we can tell he was really concerned about our family and Autumn's care. He took the time to sit down and explain everything about the Chiari Malformation and talk to us about the patients he sees on a daily basis and what he thinks we should expect with Autumn and her long term prognosis. There is no way to tell right now if the brainstem is just immature or bad. He said the MRI images did not look really bad so he thinks it will probably be that the stem just needs to mature. The brainstem controls breathing and digestion (by the chewing and sucking part of digestion). So, since Autumn's is not wired right at this time when she tries to suck or has something down her throat it is irritating to her and causes her to clamp down and not breathe. By doing the trach you bypass the whole upper airway of breathing and Autumn will be able to try to breathe on her own without having the upper airways irritated. She may though still have to be on a vent that hooks up to the trach but the doctor said it is a more humane way of having her breathe than constantly having tubes down her throat and nose and it is the most safest way of breathing and being able to take her home. He did say that she will probably be on the trach for at least 4-5 years just from what the majority of kids with the Chiari Malformation end up having to do. We also discussed doing a gastrostomy as well on Autumn. This will put a button to her stomach so that when it is time to feed her we can just hook the feeds straight to her belly instead of putting a nasal tube in to feed her. Once she can start learning to suck and swallow then we can start feeding her by mouth and to take away the gastro button they just remove it and it closes on it's own in 4-5 hours. Since she has the malformation we do not see her being about to nipple feed for at least a couple of months so this will make feedings much easier on both Autumn and us. We did not want to have to go this route but really it is our only option because we could get her home or just keep her hooked up to a vent in the hospital in hopes that the brainstem will mature. She had been having desats ALL day yesterday while we were at the hospital and already failed being on auto so they moved her back to full vent before we left. I feel this is God giving us the peace that she is not getting better with her breaths and we need to do something different now. We are hoping they can schedule the surgery for this week but not sure if they can coordinate having both surgeons available at this same time since we want both surgeries done at the same time. I will keep everyone posted on when those surgeries will be.

So, with all that decided we have LOTS to get done before Autumn gets home in 6-8 weeks.

First we need to get rid of our dogs and cats so if anyone wants or knows of anyone who wants a medium haired cat please let us know. She is not friendly to strangers or kids. She likes to be left alone and will be so loving though when she ready to have someone love on her. She is spayed and is declawed. So, if anyone is interested you can e-mail me at llwilliams8@grandecom.net. I will be taking my most loved bullmastiff back to the rescue we got her from so she will find a good home and we think Nana will take our little pomeranian but we will have to see. :) We decided it would be okay to keep the bird as long as we put it in Gage's new room.

Next, we get to move Gage to our room that is currently our office room. We need to fix the floor though and put in carpet first. I have no idea where we will put the computer and office furniture (we may have to get a laptop to save space).

We also want to replace the living room and hallway carpet and change it to hardwood and may need to do the same with Autumn's room. We want to make sure all the animal hair and stains are gone to have it the cleanest and most sterile environment to bring Autumn home to. We will also have to do spring cleaning to the house to get any dust out to minimize the threat of it get into her trach tube.

Next I will have to get organizer bins to hold all of Autumn's medical supplies in. There will be lots of supplies and medical equipment so she will need lots of space and organization in her room. So, I have lots to keep me busy while waiting for Autumn to come home. I can't wait!!!!

We decided to leave Madison in school in Midland and Dr. Adams said he would have social work call our school district to see if they will work with doing any homebound work with her. We think it will be too stressful to move her here for 6 weeks with us trying to get trained on the trach and it will add more stress to Madison. I will probably drive back and forth each week on James's days off and he will fly here on his days off so one of us will always be in Dallas to train on the trach and I can be home each week to give my mom and break and be there for Gage and Madison. The good thing is that Thanksgiving and Christmas break are coming up so it won't be too much having to go back and forth for me.

I also wanted to ask everyone to be praying for a little baby named Maggie. We met her wonderful family because her mother and I both went to Dr.McGee and she found my blog online. She came to visit me in the hospital when I had Autumn and her mom and aunt brought us gift cards so that James and I could eat out. Anyways, Maggie has the same level of SB and she also has the Chairi II Malformation. She is now at Children's as well and had her back closure yesterday. We want to pray that she will not have to go through everything Autumn has gone through and will be able to go home soon. They are a precious family and I hope Autumn and Maggie will be able to become great friends and be there for each other. We are glad that our paths have crossed.