There's no place like Home

Mel and I are beyond frustrated at the moment.  We had been home from the hospital for 2 weeks and we thought things were going so well!  Mateo was back to his usual happy-go-lucky self, being and doing things that 3 year old boys should be doing.  We went to Disney World two nights ago and had a great time as a family.  We thought we were pretty much in the clear.  We were scheduled to see Mateo's cardiologist on Monday morning to have his effusion checked again.  I expected it to be the same as it was a week ago (as in...gone) or possibly have a little fluid back, but not a lot.

But then yesterday, Mateo started breathing a little shallow and grunting, like he couldn't get in a full breath.  He was also coughing and holding his chest, like it was uncomfortable.  So I worried and called the on-call cardiologist.  How these things ALWAYS manage to happen on a weekend or when his regular doctors are on vacation, I have no idea.  But that seems to always be the case.  The on-call cardiologist told us to give him another dose of his diuretic and if he didn't improve on it, then to bring him into the ER. 

Well, 10:30pm found us sitting in the ER at St. Joe's, waiting to have a chest x-ray done.  Apparently, the effusion was back and was big and the doctors all wanted us to be admitted to get Mateo started on IV diuretics, which tend to be much stronger than the ones taken by mouth. 
They had to place an IV, which of course is never pleasant.  We finally arrived in our room at 2:30am.  I have to say, that after being at All Children's Hospital in St. Pete (the whole facility is only a year old, so brand-spanking new!), St. Joe's seems really dumpy, old and outdated.  Once we got settled into our extremely uncomfortable recliners, we were really wishing we had driven out to St. Pete instead. 

Mateo had another chest xray after being given a strong diuretic and it looks as though the effusion is not flushing out.  So the next step is a chest tube.  The cardiologist wants to put in a pigtail chest tube to drain the fluid off Mateo's lung.  He said he thinks its important to move quickly on this because Mateo has the Fontan anatomy now.  This means that there is no heart chamber that pumps blood to the lungs.  All his blood flows through his lungs by gravity and if this fluid on/around the lung is causing restrictions on that blood flow, it could cause some real complications.  So that's the plan.  We are having a chest tube put in sometime this morning.  Mateo is on a no food/no drink restriction because they will need to give him some strong meds for pain. 

We are frustrated because this feels like big steps in the wrong direction.  I know its usually 2 steps forward, 1 step back.....but this feels like we're going back to the beginning and my heart hurts for Mateo.  I want so badly for him to not have to endure anymore of this.  I know he feels so out of control of everything in his little world and it is very hard on him.  We are disappointed because we thought we were in the clear and able to move on with life.  We had so many fun things planned for Mateo this month, and now I have no idea if we'll be able to do any of it.  The doctor said we will be here for 3 days, at the VERY least.  The tube needs to be for 3 days, even if it stops draining the first day.  They want to try and wean him off IV diuretics and change him to oral diuretics while the tube is still in so they can see if the oral ones will be able to maintain the fluid.  So, we are supposed to be here 3-5 days...maybe more.  BBBLLLLLAAAAAHHHHH!!!
I am super frustrated because I feel like no one is listening to me.  It seems like his card is ALWAYS on vacation when we really need her.  I did not want any big decisions made without her because I want it to be HER plan....not a doctor that we don't know.  But I agree with the cardiologist that IS here.  We talked about it a lot and he got a lot of my uncertainty ironed out.  I just wish his regular card was here to second this doctor's opinion!

I have had to start logging and writing down everything that the nurse/doctors/staff do because they apparently cannot be trusted to record it correctly.  I left for a couple hours early this morning to get a few things from the house for Mateo.  When I got back, it was 5am and Mel said Mateo had had an xray around 4am.  That was only 1/2 an hour after being given the stronger diuretic, and I didn't feel they allowed enough time for it to work before making the decision to put in a chest tube.  The doctor said the xray was done at 6am...which was a BIG mistake because I was here, at the hospital, IN Mateo's room and NO ONE came and did an xray after I got back from the house.  I told him it had been done earlier and Mel told him around 4am.  The nurse sat and argued with me that the computer says 6am....I told her I didn't care what the computer said, I KNEW I was in Mateo's room and what did NOT happen while I was there.  She brushed me off and told the doctor the xray was done at 6am.  I, of course, got upset and angry and had to get "Mama Bear Serious" on her.  She's been nicer since then.  I am not putting up with any of that anymore.  I know my son better than anyone here, I know what I'm talking about and what we're willing to do/not do and I WILL make sure the staff listens.  I will not be brushed off or ignored or argued with.  WILL NOT.  That has happened before in the past and I let it go.  Not anymore.  Anytime I have had a gut feeling or "mommy instinct" about something, I was right and the doctor was wrong....so I'm taking the reigns!
Will try to keep an updated log of some kind....probably on facebook....just to let everyone know what's happening.  For now, we're hanging in there.