Monday, April 7, 2014

The New Plan

Yesterday, Roscoe turned 6 months old. Alisha dug through the pictures we'd taken and came up with two that were similar to show his progress over the past 6 months:

and then zoomed in on his face:

Regarding future plans, we've received the authorization for Roscoe's medication (Bosentan) and it's already arrived at our house. We thought that we needed a "license" to administer the drug, but apparently when they used the word "authorization" the originating pharmacy was referring to payment. They needed financial authorization that Kaiser would be covering the drug before they shipped it to our house. When it arrived, we were surprised at how such a small box of pills came in such a large shipping box:

You might ask "Why is Roscoe still in the hospital, if you have the medication he needed?". What we found out was that the neonatologist (ie: normal infant doctor) was the one who planned Roscoe's departure, but they hadn't consulted with the cardiologist (heart doctor) or pulmonologist (lung doctor) about those plans. Since Roscoe has pulmonary hypertension (high blood pressure in the lungs) both the cardiologist and pulmonologist wanted his CO2 numbers to be lower before he left the hospital. They ideally want his numbers at or below 50, and his readings from last week (72) and the week prior (69) have been well above that.

The cardiologist, pulmonologist, neonatologist, and UCSF (which is the 3rd party overseeing all of his care) will be looking at Roscoe's CO2 numbers each week after they are measured and having a discussion about whether it's the right time for him to come home. That leaves things a bit murky for Alisha and I, because there's no hard number that he has to hit (50 is ideal, but they mentioned possibly releasing him if he gets to 65). As a good sign, he last measured 7lb 10.4oz so he's still gaining weight which will help supplement his lung capacity.


  1. Those pictures are so sweet! You've come a long way, baby!
    Praying for more strength and growth!
    Love you three!

    And another exclamation mark for good measure!