update

Just the facts today... (although, I did get to hold him tonight!!)

He is currently getting a continuous drip feed of 26 ml/hr with 27 cal NeoSure formula. This ends up being roughly 20 ounces a day, which if he were eating every three hours it would be like 2.5 ounces each feeding. Seems low for a two-month old, but they are slowly increasing his food intake.

He is now 10 pounds 6 ounces. A few days ago he was up to 11 pounds.

Right now he is on really low vent settings, so I don't think he needs to go any further in the weaning process before extubation. If he stays "stable" from a respiratory standpoint, extubation should be soon (either this weekend or Monday probably). He will need to prove that he can handle all of his secretions in order to avoid a tracheostomy (so air enters directly into the windpipe and bypasses the mouth or nose). OH! AND, he was turned down to room air (21%) before I left the hospital tonight!

He has developed a pinpoint rash throughout his chest, abdomen, and now his arms. The nurses are keeping an eye on it. Dr. Brown (the heart surgeon) did find out about it and ordered a CBC and blood cultures to be drawn. If anything looks out of the ordinary, they will start antibiotics.

I was looking through Malachi's chart today. Did you know that he has 26, I repeat 26, consulting doctors!?!? This doesn't even include all the nurses we've had the past 11 1/2 weeks or the residents or the nurse practioners, or the fellows. Whew! That's a lot of people who have been taking care of my baby.

Also, medications. He is on two drip meds: milrinone and sodium chloride. His scheduled meds include aspirin, atenolol (heart), calcium carbonate (electrolyte imbalance), calcium chloride (electrolyte imbalance), digoxin (heart), Lovenox, Flonase nasal spray , Lasix (fluid retention), heparin flush, Lacrilube (right eye ptosis), phENObarbital (seizures), potassium chloride (electrolyte imbalance), sildenafil (pulmonary hypertension). And his prn meds include Tylenol, ammonium chloride (alkalosis), calcium gluconate (electrolyte imbalance), heparin flush, magnesium sulfate (electrolyte imbalance), morphine (pain), potassium chloride (electrolyte imbalance).

Most of these meds, he can come home on. I will definitely need to be adequately prepared to properly administer all of his meds. Not to mention the constant suctioning he will most likely need. Or the g-tube feedings and maintenance. Or the possible trach issues. All of to follow ups with specialists. All of the hospitalizations in between those follow ups. Heart surgery at age 1. And just trying to figure out how to communicate with a child who may or many not be able to see me and who may or may not be able to hear me.

Life will be very interesting, to say the least. This is why I don't allow myself to let my mind wander too far into the future. God has said that He will provide the grace I need for today. So for today, I thank Him for the grace to make it through--day by day.