Thursday, April 28, 2016

April 28, 2016

It's been a few days since we've posted anything. Gary was here in Birmingham and I was home with the kids and my parents for a few days. He and I came back Tuesday evening.
Zeke has had a rough few days, and we've gotten a lot of information that we're still processing.
Over the weekend, they did a head ultrasound, since brain bleeds are fairly common in preemies. They found that he had a Grade I bleed in the right side. It's mild and they're not really concerned about that. They also found that he's got some cystic areas in the white matter of his brain, called PVL (periventricular leukomalacia). This is more prominent on the left side of his brain. PVL is one cause of Cerebral Palsy. Right now, the PVL is fairly mild, although any kind of damage to the brain like this isn't treatable. They'll follow up every two weeks with repeated head ultrasounds to monitor the damage.
They believe that the PVL is possibly being caused by his difficulty keeping his blood pressure stable. He's had chronically low BP, and is on Dopamine to try to keep it up, but he's on the maximum dose for his weight, so as of today, they've added Vasopressin, which is another medication used for raising BP.
His swelling has been increasing throughout his body, but especially in his abdomen, and we were all becoming more concerned about it. They ordered ultrasound and xray this morning to try to see whether it was just the tissues expanding or if there was fluid built up in the abdomen. They did see a large amount of fluid, and were able to use a needle and syringe to extract about 80mL of fluid. That has been sent to be tested and have cultures done to determine whether it is just fluid, or if it is infection. He's currently on a 14-day course of three different antibiotics (Gentamicin, Vancomycin, Flagyl) since his surgery last week, but if there's so much fluid built up that, if there is infection, the antibiotics wouldn't be able to treat it.
The fingers on his right hand are still discolored, with his ring finger being the worst. That fingertip, from the nail bed up, is almost entirely black. His middle finger was worse, but looks better today than it has. They've been using a nitroglycerin cream to try to clear any microclots that may have moved and gotten caught in his fingertip. They're also hoping that the new BP med will help with that as well.
He is having some urine output - about 40mL per day. They've sent that for testing. With him being on dialysis, the machine is doing most of the work his kidneys should be, but there is a very small amount of kidney function. We asked the nephrologist (kidney dr) today whether there's any chance of the kidney function improving, and he said it's not likely, but there is a very small chance that it could. The last time they had to change out the dialysis pump, they tried to leave him off for a while to see how he'd respond, and he didn't like that. In order to get a good, accurate reading of his actual kidney function, he'll have to be off dialysis for a period to see the quality of the urine.
As of last night, he still hadn't had more than a bit of mucousy fluid out of his colostomy, so they gave him some oral medicine. They'd said he might spit some of it up since he's not used to having anything in his stomach. About 45 minutes later, he was spitting up quite a bit. We suctioned it from his mouth and nose as it came up. They'd decided not to do that again. Today around noon, as the surgeon came in to extract the fluid from his abdomen, he'd had some more solid output from the colostomy, which they're really happy with.
The struggle with having any infection in the abdomen, other than the fact that it's infection, is that it causes scarring, and that makes it more difficult for the peritoneal dialysis to work, once he's big enough and stable enough to be on that. So they're trying to keep that to a minimum.
Over the past several days, he's been fairly agitated and restless, so they put him on a low dose of Versed, in addition to the Fentanyl he's on for pain management. He's also still receiving the HAF (electrolytes, etc...), lipids (fats), and the heparin (blood thinner) with the dialysis.
He's still on a decent amount of Oxygen - he was up to 100% again last night, but right now is down to 40%, with a ventilator rate of 55rpm. He's still needing fluid boluses, as well as blood transfusions to keep his hematocrit up to a normal level. It's normal for any newborn to have low hematocrit for the first few weeks while the body is getting rid of the fetal red blood cells and making new ones, so hopefully in the next few weeks his body will start producing an adequate amount of rbc's and he'll be able to cut down the amount of blood he needs to receive.
They did switch his dialysis machine out today with no issues. They're leaving 5mL of fluid on per hour until he's more stable and able to tolerate in=out. The goal is to remove a small amount of fluid during dialysis and get his swelling and his weight down (right now he's at 2350g - his birth weight was 1440).
We're just hoping that the new med will help get his blood pressure stable, that his finger will start looking better, and that the fluid inside his abdomen was just fluid and not infection.
I'm sorry if this is really choppy and doesn't make much sense... It's hard trying to relay all of the information we get. We still appreciate the prayers and positive thoughts. Gary and I are headed home this afternoon to see the kids. I'll be back Saturday evening, so unless something happens, good or bad, we probably won't have another update until sometime on Sunday.

April 27

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