only one update today, most likely

I know, I’m late posting. I’ve been busy holding Oliver for most of the day.

More test results came back today, they were all negative. We are stopping the anti-viral drug at this point because we have ruled out all the viruses that the anti-viral drug can treat as the cause. The infectious disease doctor thinks it was probably a bacterial infection of some sort after all. Anyway, so they don’t know what made Ollie sick. I’m okay with that, as long as it doesn’t happen again.

Now the best news. The neurologist looked at the CT scans and the MRI scans, and his diagnosis is that what he’s seeing on the MRI is just inflammation due to the seizures he had last week. They think the damage will heal on it’s own, and most likely have no lasting effect on Oliver. He will need to be on the phenobarbital for the next three months. This is going to be fun because apparently the meds taste like crap, and so far no one has any good ideas how we are going to administer it to Ollie. A small challenge at this point, but still something to think about it. In three months, he’ll need another MRI to see how the healing is going and to determine if we can wean him off the meds totally.

So we’ll be off the pain meds on thanksgiving, and we should be off pretty much everything else by then too. The nurses all seem really surprised that Ollie is eating on his own. He’s had 10 oz today, and hopefully will eat more later. I’m not sure when that means we will be able to go home. Today’s nurse is just in shock and far along Oliver is in his recovery.

The one thing today has been a weird shaky breathing that he has been doing. The doctors think it maybe withdrawal symptoms despite the methadone, or perhaps just a weird breathing pattern (which is normal an infants, weird breathing patterns), but they are watching it to see what comes of it. They think his breathing sounds okay, and since it stops when you put your hand on him, they tell me it’s not a seizure. More on that as it develops.

only one update today most likely.

I know, I’m late posting. I’ve been busy holding Oliver for most of the day.

More test results came back today, they were all negative. We are stopping the anti-viral drug at this point because we have ruled out all the viruses that the anti-viral drug can treat as the cause. The infectious disease doctor thinks it was probably a bacterial infection of some sort after all. Anyway, so they don’t know what made Ollie sick. I’m okay with that, as long as it doesn’t happen again.

Now the best news. The neurologist looked at the CT scans and the MRI scans, and his diagnosis is that what he’s seeing on the MRI is just inflammation due to the seizures he had last week. They think the damage will heal on it’s own, and most likely have no lasting effect on Oliver. He will need to be on the phenobarbital for the next three months. This is going to be fun because apparently the meds taste like crap, and so far no one has any good ideas how we are going to administer it to Ollie. A small challenge at this point, but still something to think about it. In three months, he’ll need another MRI to see how the healing is going and to determine if we can wean him off the meds totally.

So we’ll be off the pain meds on thanksgiving, and we should be off pretty much everything else by then too. The nurses all seem really surprised that Ollie is eating on his own. He’s had 10 oz today, and hopefully will eat more later. I’m not sure when that means we will be able to go home. Today’s nurse is just in shock and far along Oliver is in his recovery.

The one thing today has been a weird shaky breathing that he has been doing. The doctors think it maybe withdrawal symptoms despite the methadone, or perhaps just a weird breathing pattern (which is normal an infants, weird breathing patterns), but they are watching it to see what comes of it. They think his breathing sounds okay, and since it stops when you put your hand on him, they tell me it’s not a seizure. More on that as it develops.

quick update before I sleep

It’s been a busy last hour here in the ICU.

First of all, the IV in his leg went bad, so they decided to end the Milrinone! And they took the Lasiks off a drip and are going back to giving it in doses as needed. This means that he only has the IV lines in his head (PIC line) and in his neck (central line).

Secondly HE ATE!!! The doctor let us try an ounce of fresh pumped breast milk in a bottle to see how it went down. The nurse and I started giving it to him and Ollie wasn’t sure what to do with it. They warned me that after a week without eating that he might have some trouble remembering how to suck. At first he kept using his tongue wrong. He’d try to suck, and instead he’d spit the bottle out. It was pretty heart breaking for a few minutes. I wasn’t sure whether or not we should keep trying. The reason I kept trying is because he seemed to LIKE the milk, he just didn’t seem sure how to suck the bottle. (He was eating from a bottle just fine before we came down to ICU).

The nurse left me to try on my own when she got called to another room. Suddenly, Ollie just latched on properly and started sucking! I was happy I started crying right then. He ate! And I got to hold him! And the fact that he remembered within five minutes how to suck makes me think that everything in his brain might be okay too.

update from ICU

So we had the cat scan. The doctor looked at it and said that no blood showed in the scan, and that things looked “good” to her. She is just the floor doctor though, so we need to talk to the neurologist tomorrow to see what the Cat scan results mean in conjunction with the MRI results. I don’t know if puss would show on the cat scan or not. Basically worst case at this point sounds like an infection in the brain, which could mean puss pockets that have to be surgically removed. Best case is still that it is just some inflammation from seizures that may all ready be healing on their own.
The good news out of the cat scan is that there is no fresh blood, so currently he is not bleeding in his brain, which is a good sign.

They finally took him off the ventilator. He is breathing just fine on his own when awake, but is not breathing as deep as he needs to when he falls asleep. This is a normal side effect of being on the vent, and so tonight he is on a low level of O2 through a tube hooked up to his nose in order to help him get enough air in the night. We should be able to wean him off the tube tomorrow.

They are starting to turn down the pain and sedation meds. He’s been on them for a week, and they are narcotic based, so he’s probably low level addicted to them. The pain specialist stopped by and prescribed methadone as part of the weaning process. He’s on a five day plan to wean him, so hopefully thanksgiving he will be weaned off of them at some point. This means we will not be home in time for thanksgiving. My ICU nurse today predicted another week, maybe 10 days more in the hospital. Ollie is showing something already that they consider a symptom of withdrawal, it has something to do with his mouth movements. The plan is to give him a dose of methadone now (well, as soon as the nurse gets it from the pharmacy) and then in 12 hours to give him another dose and cut the pain meds in half. Assuming he stands that, then 12 hours later we will repeat, and hopefully he’ll be off the pain meds in 3 days, and then 2 more of the methadone as needed.

They are working to wean the Milrinone next. Hopefully we will be able to start liquids by mouth in at some point tonight. We are going to try and feed him an ounce of breast milk in about an hour, and see how that goes. He’s got to stay on the antibiotics through Weds.

Then there is still the anti-seizure meds to deal with, I haven’t heard the plan of attack on that. That’s really the biggest question at this point. He seems to be doing okay other than that one issue, making steady progress.

Tonight, I finally got to hold him. It had been an entire week (almost half of Ollie’s life) since anyone had been able to hold him. It was pretty awkward, and it took two people to get us situated, but it was totally worth it. He’s still got a lot of tubes. The nurse said once he is off the Milrinone, the catheter can come out, so that will be nice.

Ollie is acting better. He’s having more periods of wakefulness. He now opens both eyes and he does track movement, both eyes together, so that is a good sign to me. They are watching him to see if he acts “normal” but since he was only home with us for a week, normal isn’t well established at this point. Normal for a newborn seems to be a lot of sleeping and eating, so we just need to wait and see. He seemed normal to me while I was holding him, but I’m not the best judge.

11/21/09