Yesterday was Crazy

We went to the pulm. dr. (remember the one with all the crazy comments), well she still had alot of the crazy comments. Basically she said that they have no ideas for helping Avery at this point and was trying to give me everything under the kitchen sink to keep him out of the hospital. So sad. We are trialing prednisone, sudafed (she even suggested caffiene), they adjusted his bipap and increased his o2 requirements for sleeping. They also referred to him as the baby that had the ER in a panic. Nice huh,

We also discussed again some end of life issues such as intubation and what our thoughts and wishes were. Not your typical topic unless you are at the point we are at. It is surreal I tell ya.

We got home and Avery was totally exhausted which made for a bad afternoon. We was in distress b/c he had 3 large mucous plugs which it took 2 nurses to get up while he had periods of turning blue. It is really like a scene out of ER in my house these days. We have everything we need at home exception equipment to intubate. LOL. Okay I know it sounds crazy and unreal that I am talking like this BUT...... it is my normal crazy life.

Once he finally settled down last night the respiratory therapist came to the house and showed us some techniques. I really value their opinion b/c they are in the trenches with kids like Avery and know so much. So she basically said that with kids as progressed like Avery that we have some hard decisions coming up (like him wearing the bipap fulltime, it is just something you really reflect on as another reality check that this baby is GOING to DIE and as much as I say it is still so hard to swollow. This disease has spread like a wildfire. It's like I don't even have time to catch my breath before another crisis hits.

So at this point he is on bipap and o2 for sleeping at all times. We will just see what the next step is and take it day by day and moment by moment.

It is hard..........