Jason: October 2003 Archives

The doctors are still concerned about Matthew's high direct biliruben levels and elevated results of recent liver function tests. Another hide-a-scan test has been ordered for sometime this week. They're looking at the common bile duct area for abnormalities. If that looks normal, the doctors may also consider performing a liver biopsy.

We still don't know when Matthew's eye surgery will be. The eye surgeon said he would try to reschedule in one to one and a half weeks which should be near the end of this week. We haven't heard anything which probably means it will be delayed somewhat.

Jenn is still working with the occupational therapist to get Matthew to feed from a bottle. He does fairly well on the breast when he's very alert, but still isn't taking very much of his feeding that way. He's still tolerating his feeds though, so that's a good sign. It probably means we won't have to do the intestinal surgery.

Matthew's weight's been hovering around 2900 g (6 lbs 6 ounces) for the last couple of weeks, so they've upped the amount of fortifier they're putting in his milk. By itself, breast milk is 20 Calories per ounce. When they first started adding fortifier, they added enough to raise the level to 22 Calories per ounce. This wasn't enough, so a couple of days ago they increased the amount of fortifier to raise the level to 24 Calories per ounce. He was up 60 g (2 ounces) yesterday, so it looks like it might be working.

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Matthew's on full feeds now (49 ml every 3 hours), and so far he's tolerating it well. They've been giving him additional fluid (dextrose) via his broviac, but he pulled it out today, so they've stopped the additional fluid. They don't seem too concerned that it's out. They were planning on feeding him through it during the surgery on wednesday, but they'll just use a peripheral line instead.

He's starting to get the hang of bottle feeding. He took about 6 ml from the bottle around noon today. He gets tired pretty quickly, but as he gets more coordinated it should be easier for him.

He's actually down a little bit on weight from a couple of days ago. If he doesn't start gaining weight regularly pretty soon, the doctors are going to want to start adding fortifiers to the breastmilk.

    

Matthew's doing great; his feeds are up to 37 ml every 3 hours and he's having little to no residual and is stooling great. He's now up to 2973 g (just over 6 pounds 8 ounces), so full feeds for him are about 56 ml every 3 hours. They're increasing his feeds 8 ml every day (2 ml every other feeding), so he should get to full feeds by friday morning if there are no complications or if he doesn't have any residuals.

The CF sweat test is scheduled for this friday. I doubt he's old enough for the test to work, but the doctors wanted to give it a try.

Jenn's working with the occupational thearapist tomorrow to try and get Matthew to take a bottle. He's pretty good at sucking on a pacifier, but he still seems to get confused when he gets a mouthful of milk.

The eye surgery is scheduled for October 22nd. The doctor is planning on removing the lens, fixing the retina (if it's fixable), and adding silicone oil to try and push the retina back against the back wall of the eye.

Matthew's been doing really well the last few days. He's tolerating his feeds really well and is up to 11 ml every 3 hours. Jenn even got to breastfeed him for a little bit. He didn't know quite what to do when he was first put to the breast, so the lactation consultant suggested using a breast shield (basically a silicone nipple cover that gives Matthew the same mouth feel as the pacifiers he's been sucking on). Once Jenn tried that, Matthew suckled for several minutes before getting tired. It's hard to say how much he got during that time, but he definitely got some and he seemed to like it.

If Matthew continues to tolerate his feedings and is able to make it to full feeds (currently 49 ml every 3 hours) and be there for a couple of days with no complications, he could be ready to come home. They're still trying to get the surgery scheduled on his right eye, but he doesn't necessarily have to stay in the hospital until that can happen (he could come back just for the surgery and would only have to stay 24 hours post surgery for recovery).

Matthew was doing quite a bit better yesterday. He was alert for long periods and relatively quiet. He was fighting the ventilator quite a bit, so they were giving him sedatives to keep him calm.

The eye doctor examined his eyes yesterday and determined that he needed to do a bit more laser treatment as well as possibly some cryotherapy (where they freeze a portion of his eye to stop the progress of blood vessels) on his left eye. Surgery is scheduled for sometime this morning.

The lens on his right eye has clouded up, so he'll have to take the lens out of his right eye soon. If the rest of his eye improves, he'll get a contact in that eye temporarily then receive a synthetic lens sometime later (when he's between 6 months old and 3-4 years old). It will be a fixed focal length lens which will give him clear vision from about 10 feet out to infinity, but he'll need reading glasses to read out of that eye. All this could be moot if he really has a hole in his retina. If that's the case, he'll likely only see patches of light and dark in that eye.