We are home. We actually had a team meeting before leaving. These are typically productive b/c you get all the drs. involved in Avery's care and us and basically hash things out. So we hashed out a few things.

1. To do the T&A or not. Well, I thought this was the most cut and dry and it turns out is was the least. The team just did not seem to thing he would get a great amount of benefit out of this. The way I see it is a little benefit for quality of life even if that is only for a yr. or 2 is huge for him. My mommy instinct is telling me to do it, so I am going with it. Afterall, they don't really know Avery like we do and are only going on their medical opinions. I personally think mommy instincts are much stronger.

2. We put on the table to have Avery directly admitted to the ICP and once he is stable that he will go home instead of the regular floor. What they do on the regular floor we can certainly do at home. They were in agreement. I made sure to mentions several times in a few different ways about the whole fiasco on Sunday and how that did not need to happen at all. Not many responses there.

3. Another port. Man did I hem and haw over this based on our previous experience. However a few good things came out of it. They did another ultrasound on his old clot and is was markedly improved. The ICU dr. also spoke with the surgeon who placed his first port and he said what great difficulty he had placing it and believes he got the clot from all the trauma placing it. He was basically going into it blindly. He would like to retry with ultrasound guiding him and feels pretty confident. Hematology was also present and felt he was okay to have another line. If the line worked, it would make things alot easier for Avery. He would avoid all those horrible pokes, get quick fluids when needed, get blood without pokes. We could also manage more of his care at home. So we are going for it. This was really tough. But we have to go with our instincts and with this one the new information that was presented.

These are all very tough decisions with no right or wrong answers. As a parent it is so difficult b/c you don't know if the one you make could ultimately hurt your child but in the end, We are doing the best we can for him. They did bring on a trach for him and this is something Rick and I are NOT willing to do. We just feel that there is no quality of life for him with this. They certainly brought this up in the meeting and we made sure to let them know our opinions. So we will be scheduling surgery for both procedures in a few weeks. It will be a very tough recovery but Avery is certainly a fighter and have no doubts he won't pull through it fine. Hopefully all is quiet until surgery time.