So Close

Overall, things are going great.  My little guy is eating really well and gaining weight, and is now up to 8 pounds, 15 ounces.  He is a happy baby, and is no longer struggling to breathe, or dealing with a stressed out heart.  They've even taken off his pulse oximeter which was monitoring his oxygen saturation, because he no longer needs it.  After months of watching him struggle and watching those numbers dip, and being on and off different breathing machines, I never thought the day would come when we didn't even need to monitor his oxygen anymore.  

If only we could get (and keep) his blood pressure down. 

A nephrologist (kidney doctor) has been monitoring him and trying to figure out the right dosages of medication.  He is now on one medication 3 times a day, another twice a day, and then a third if his numbers are still too high.  Because we have not been able to get it down and keep it down, he decided today to start him on a diuretic to make sure he gets rid of all excess fluid.  If he is retaining any fluids, they could be adding to the high blood pressure.  I am hopeful that this, along with the meds, will do the trick.  As soon as his blood pressure is down to normal levels for a baby his size (right now he has the blood pressure of a healthy adult), he can go home.

Knowing we are this close is making it even harder to be patient.  But it is important that the doctors do not start him on more medication than he needs, so they have had to start very low and gradually increase.  At some point, though, he will be on enough medication to keep it under control. 

We are not there yet, but we are so close.