Baby Zeke: August 21, 2016

Zeke has been doing ok the past few days.

On Thursday, 8/18, we decided to try to get him off the warmer. I went shopping to buy him some clothes, and his nurse and I got him dressed for the first time! We swaddled him up, put a thicker minky blanket on him, and turned the bed warmer off. They kept an eye on his temp overnight, and he did fine! He's been able to stay dressed and keep his temp up on his own for the most part. He gets a little cool when he's not swaddled or doesn't have a blanket on (he got a good bath scrub down the other night, and they turned the warmer back on for a little while after that, but as long as he's covered, he's good). We were hoping this would mean they'd consider moving him to a regular crib vs. the warmer, but because of surgery coming up, and the fact that he'll need to be open afterwords, they decided to keep him in the warmer.

On the morning of Wednesday, 8/17, they decided to start leaving 5 on with dialysis because he was starting to get dry. He had pump change Friday, 8/19, and it went well. Later that evening, his lines weren't flowing well, so they put tpa in for an hour to try to get rid of any clotting that was happening. Last night, around 3am, the pump clotted, so they replaced it this morning. He seems to still be doing ok though. His lines have been behaving much better than the ones in his neck did, and we've been able to continue changing his position without much issue.

Gary and the kids came up on Friday night, and while they were here, Zeke was still off the pump. We were able to hold him, and we took our first picture as a family of 6. Zadie held Zeke, and she loved it. Ezra really liked being able to touch him and look at him without being held, too. (Ryker was pretty interested in the olympics. lol) I've gotten to hold him several times this past week, even while he's been on dialysis. It seems to calm him down, and I enjoy it too

His lumbar puncture cultures came back negative for yeast or any infection, which is awesome - that means he doesn't have meningitis or any infection in his brain. The blood cultures from 8/12 and 8/14 were both positive for yeast, and the culture from 8/16 wasn't counted because he was pretty dry and they weren't able to get enough blood to potentially grow anything. They sent two sets of cultures on 8/18, and one on 8/19. We should have results for all of those tomorrow or Tuesday.

Apparently yeast is a fairly difficult infection to treat and get rid of, especially in babies, and especially in babies with a lot of plastic in them (so all of Zeke's lines and his breathing tube). It can be fatal, so we're so thankful it's not in his spinal fluid, and are praying it was caught soon enough to be treated quickly.

Zeke has had a pretty upset belly the past week or so. It could be several reasons - they started fortifying his milk with a renal formula for extra calories, they started giving him liquid protein, they started the antifungal medication... all of which can be fairly hard on the stomach. He's been really gassy and uncomfortable. On Friday evening, they started a new med for GI cramping, called hyoscyamine (used for bladder spasms/cramping). It seems to be working - he seems less irritable today than he was on Friday.

He started spitting up a lot over the past few days, and they decided to change his feeds from 50ml over about 30 minutes every three hours, to continuous - he gets 17ml over the course of an hour, all day. He's not spitting up as much now.

He's still on the ventilator, and he will be until after they do the bronchoscopy. We're not sure exactly when that will be. They want to be sure there infection is gone, because they don't want to potentially introduce yeast into his lungs. The last I heard, they were going to wait to do the bronch until 3-5 days after his second negative blood culture. His vent settings are pretty low, though - rate of 20, pressure 21/5, and he's been getting between 25-35% oxygen for most of the past week. His settings are low enough for extubation, as long as he continues having good gasses, and his bronch goes well.

I talked to the surgeon the end of last week. He came in with a plan for surgery. He and the Urologist coordinated for August 31 to do the first part of the surgery (separating the bladder/bowel, trying to find/get rid of the blockage in the urethra, likely do a circumcision, and do the rectal biopsy to completely rule out Hirschsprung's). That is completely contingent upon the infection being gone at that point. Please pray that the cultures from the 18th & 19th come back negative! They're still wanting to treat for the infection for 10 days after they get the two negative cultures, and we need to get the surgeries started, because the timeline is all dependent on when they can do the first surgery.