A Plan A Plan, We Have A Plan

This has been one mighty big week for our little guy! We are thrilled with his progress! Aaron now has awake periods where he gets his eyes open and interacts with people and objects. He is doing well on the Dragger (conventional respirator) and his nitric oxide has started to be weaned and will most likely be taken off completely today. Yesterday for a 6 hour period he had a urine output of 3.3, better than any other time before. He may get his catheter removed today as he pees around it more than into it. His internal temp probe has been taken out as he has lost enough fluid that the sensors are picking his temp up again. His side is still leaking about 100 cc's in a 6 hour period as well. He gets that fluid replaced by half to try to keep his electrolyte levels up. His body is still having a hard time tolerating glucose and lipids so we are watching that. We are trying to get him up to 80 calories at least, right now we are in the high 60's and low 70's. Once he's up to 80 we know he is gaining weight and not losing it and hopefully that will trigger his body to release more of the fluid through his renal system. He is getting 1 ml of breastmilk every 3 hours. So far he is digesting that although his stomach fluid is a little odd, its making too much for how little he is getting. We are hoping to increase his amount as the days go by.

Before signing off yesterday our doctor set a plan in place and reviewed it with the incoming Attending. We have been asking for this a while now and finally this latest doctor pulled through for us and the incoming doc said he thought the plan was great and wouldn't change anything assuming all goes well. Hooray! Here's the plan: 1. Wean the nitric!!! This has been started and should be off today. Watch closely to make sure he is not shunting and keep him stabilized. After 48 hours of stablility get an echo (should be Mon. morning if all goes well)! Call the cardio guys back over to review everything and ask for their recommendations on weaning the milrenone. 2. Wean the milrenone how they recommend. If all goes well for 48 hours repeat echo. 3. Continue antibiotics for 3 or 4 more days and stop. 4. Restart sildenafil. Assuming all is going well Aaron's feeds will be steadily increasing during this time and should be able to have enough to put the sildenafil in his feeds. 4. Watch for 24 hours to make sure he is tolerating the sildenafil and start to wean slowly off the flolan. Get echos regularly to check for effectiveness. Call cardio back and decide what to do about the ligation. 5. At some point within all of this they may decide he is healthy enough to transport for a ct over at Primary's. After he is off the nitric he is able to go across the bridge. 6. Sometime, when his fluid is no longer an issue and his hypertension shows to be under control with the medication he will be extubated and put back on one of the many other breathing machines. We are hoping to go back to the high flow or another new machine they will be getting next week.

If Aaron continues to flush fluid and continues to be stable I will get to hold him again and hopefully give him a sponge bath. He really stinks! We messed with him quite a bit last night, changing his sheets, cleaning out his rolls, changing his diaper twice in one period, changed his leads, and weaned his nitric. He went up on his O2 and shunted a little bit which was to be expected but nothing over 50%. At some point his bed will need to be changed out. It is way overdue!

The atmosphere around Aaron's room is so different these days. Every one is grinning and in a better mood. Every time he gets his eyes open and starts to interact, someone runs for a camera. They have taken several pictures on the hospital camera and will burn them for us, others just take pictures on their phones and send them our way. We have watched several families we have gotten to know taking home their little ones. We cheer for each of them and know we'll be losing a few more families soon. (I shouldn't say losing, that's not a good word, graduating that is so much better). We have developed friendships with so many and love to see the progress each of their little ones are making. Progress, its a beautiful thing!