EXTREMELY ROUGH DAY...NO SLEEP, MORE MEDS, POSSIBLE HOSPITAL STAY

Well Maxwell just finished one of his coughing/choking/needing suctioning spells and appears to be on the way back to la la land, so I thought I would use this time to post a quick update. (There is no point in laying down until I know for sure Max is ok and truly going to stay asleep for at least a little bit of time.)

Today was one of the roughest days I have had since Maxwell has been home. I'm exhausted, completely exhausted. Last night was another night of nearly no sleep and I just about lost in the middle of the night. Actually I think it would fall into the "losing it" category. I simply cannot go on like this any more.

First thing in the morning I put calls out to my insurance company to plead our case as well as more calls out to the various agencies that are working on a waiver for us. But unfortunately we are not sure if any of it will work...but there definitely is a renewed full court press. I couldn't help but cry on nearly every phone call explaining how tired and frustrated I was. I thought I had truly toughened up, but when you are working on no sleep...the emotions take a life of their own!

Yesterday afternoon I had to take Max to his doctor's for a weigh in (good news on that front - after being pumped and pumped with extra calories, he finally put on a few ounces) and the nurse could tell right away something was wrong. I didn't give any effort to smile and nearly fell asleep when we were waiting in her room. She and the doctor quickly put their heads together and called the public health department to stress the need for some home health care. They are really trying to push that as the sole caregiver, I cannot be expected to provide 24 hour care for such a medically fragile baby...especially when he is sick and requiring even more care than usual.

They were so incredible with me. I lost it with Max's doctor...I just started crying and crying about being worried about Max and his breathing issues, does he need a trach, will he ever get better, will he ever be able to breathe normally, why isn't he growing, why, why, why???? Then of course when he asked how I was doing...I cried and cried again.

One of his suggestions was to perhaps put Maxwell in the hospital for a night to give me a break...and that made me cry even more. I would feel like such a failure. He stressed over and over again to me that a kiddo like Max could be in the hospital nearly every day of his life and it was me and the full time care that was able to keep him out. And what happens to Max if I end up really sick or simply unable to go on at this pace? He said he was surprised I hadn't broken down earlier than this. He gave me a wonderful pep talk...he's amazingly supportive of both of us. But I still walked out of there feeling so down about our situation. Something must change.

So I'm not sure what to do. I didn't take the hospital option yet...I wanted to try another night at home first. And fortunately tomorrow night I was able to hire a friend of a friend who is a licensed nurse to come watch Maxwell. (I'll just add that to my growing list of medical expenses and hopefully the judge sees to it that the other party pays his share.)

Additionally, Max's doctor prescribed two additional medications to help move along this congestion. He reminded me again how severe his chronic lung disease is and that this is what is going to happen pretty much every time he gets really congested. Max simply doesn't have the physical strength or airway structure to move things along quickly.

I'm about finished with this post and it also sounds like Max *might* be staying asleep (as soon as I wrote that...he started coughing)...so I must run. Hopefully these meds kick in and provide some relief for Maxwell, and hopefully we come up with a good solution for in home care that provides some relief for me.