Waiting

 

Our apologies for the long wait for an update, but that has been mostly what we have been doing this week: waiting.

Since we did not need to do a heart cath, Paige and Henry spent last week just hanging out in the PICU. Henry responded well to the milrinone and was looking and feeling better each day. He has worked back up to taking about half of his feeds by bottle - when he is awake - which is close to where he was at before last weekend.

A follow-up echo on Thursday showed no major change in the blood flow in and around his heart, which isn't really good or bad news. His labs showed a good drop in his BNP, which indicates better heart function. The doctors feel is good and stable again, and we are ready to begin weaning him off the milrinone and on to other medications.

Henry has begun receiving digoxin and they will start back up his enalapril later today. These two medications will hopefully take up the job of the milrinone. Again, the enalapril will help reduce the blood pressure in his body, allowing more blood to flow out then back into the lungs. The digoxin will help the single right ventricle squeeze. As long as his right ventricle needs that help in pumping, he will remain on the digoxin. Both of these medications are oral, so he will be able to go home with them. If his right ventricle gains enough strength, and as he grows into his shunt, it is possible he would come off of the digoxin sooner, but most likely he will remain on it until his second surgery. By running the blood returning from the upper body back through the lungs directly, the second surgery will take a lot of the burden off of the single ventricle. It may also take them some time to dial in the appropriate levels of each drug. Each kid is different, so there really isn't a better method than trial and error.

We will certainly keep updating as we progress, but in the meantime we are simply here: waiting on the doctors to sort out the meds; waiting on Henry to grow; just, waiting...