July 21st – Update

Evan had a fairly quiet weekend. There were some concerns with his potassium and sodium levels which were being monitored very closely. Since he is on so many diuretics and eating more than he has in the past they are walking a fine line to find the right balance. They don’t want him to be too wet because it will cause him to have difficulty breathing and at the same time they don’t want him to get too dry. In order to help with fluid retention they decreased the volume of his formula but increased the calories. He is now receiving 110ml of 26 calorie formula every 4 hours and the formula is given over 2 hours. He is tolerating them very well and no emesis but he does get gas occasionally though I have discovered the gas mainly happens if the nurse doesn’t heat up the milk before giving it to him so from now on I will make sure all of his milk is heated up. His potassium levels are now in the normal range and his sodium levels are moving in the right direction.

This morning he had a slight fever which has come down so they had to draw some labs. Evan has a PICC line to deliver medicine and do blood draws but this morning they couldn’t get any blood return so they had to give him a mediciation to unclog the line. Since he is on a continuous blood pressure medicine that helps his heart function they needed to give him another peripheral line until the PICC line can be used again. The medication to unclog the PICC takes about an hour to break up the clot.

So…Evan has asked that we start a #freemyhands petition! For those of you just joining us Evan loves his hands and he loves grabbing things so occasionally we have to cover his hands with socks or mitts and as a last resort batwinged which is kind Of like being swaddled in a blanket. Speaking him and his hands I forgot to mention he pulled his NG tube out for the third time this morning.

We are still waiting authorization from our insurance company to be transported to Boston so please send prayers that we can get that authorized ASAP. Last night, my cousin who is visiting from Atlanta, reminded me of the story of David and Goliath and how much Evan reminds her of David. Evan is David and his veins are Goliath. He is fighting to keep those veins open and his heart healed because we know with Christ anything is possible. As I was leaving the chapel this morning I noticed some books available for patients and sure enough there was a picture book of David and Goliath so of course I got it for him and we read it this morning….look at God!

#freemyhands