Status

I apologize that it is Wednesday and our appointment was on Monday, I know everyone has been worried. In between running to doctor's appointments and taking care of Lucas, I'm trying to keep up with a sometimes demanding job. Clients don't stop asking for things, and meetings still need prepped for, even though things are busy at home! This week has been especially challenging to find free time with him sick and appointments... as soon as I put him to bed, I spend the next few hours working to catch up before getting to bed, exhausted!

I don't know much after Monday's appointment, unfortunately. The ophthamologist confirmed pressure (as we already knew), but said she couldn't really see whether it was so much that an urgent surgery was necessary. She felt a little at a loss because it had been so many months since seeing her (my fault), and couldn't really compare today's exam with past exams, except from January. She was kind of put off that the neurologist didn't call her or anyone from her department to do a bedside exam of him while he was in the hospital in March, when his one eye became dilated. She was very concerned about the dilation. Oh well, that's in the past now! She wants to see him back in 4 weeks (one week before the MRI) to see what has changed. So we'll wait... until 11/5, unless he goes downhill between now and then. That's tough to do, when you know there are negative things happening inside his head. And since he obviously has a HIGH tolerance for pain, he doesn't tell us when he's uncomfortable until it becomes unbearable. I read a website the other day of a girl with hydrocephalus, now in high school... and to hear how she describes the pain when a shunt malfunctions and pressure builds is very distressing. I can't stand thinking of him in pain. I am convinced that his eye is dropping more lately, so maybe we won't make it until November. Its hard when you see him every day to notice subtle changes like this. I asked Mirna (our nanny) what she thought, and she agreed that it was pushing downward much more recently.

So... how about some positive news? She said she thinks he can see out of the right eye, and just the right visual field may be missing. Its tough to say when they're this little, but promising to know he may have "some" vision in that eye. After all, we're just shooting for functional right now -- not stellar. It was also nice to hear her say good things about his overall response, she said he made eye contact and smiled (and there was absolutely no visual response in her records from January). She also said that although she agrees that pressure is making his eye move in the wrong direction, that it may also be muscular... and that can be corrected. The interesting thing is, she thinks the left eye is the one with the problem (the one we thought was normal). She said it is not moving over far enough, and it makes the right eye "appear" to be the one that is facing outward. This is another hard thing to explain without a pen and paper, or my hands.

Monday was an eventful day not because of the eye doctor, we ended up back in the pediatrician's office. Lucas started coughing through the night Sunday and non-stop Monday morning, and wheezing so bad I could hear him struggling to get a breath from the back seat of my car on the way home from the eye doctor. His chest was contracting in, like it was in the NICU when his lungs were very stressed. The pediatrician wanted him in right away, and it turns out the antibiotics are not working on the ear infection (which has gotten much worse in his ears, he said). Now it has spread to his lungs, and with a baby with scarred lung tissue and chronic lung disease (known as BPD), this is very serious, as distress to a baby with BPD can impact other systems (heart and kidneys), as well as develop into a more serious illness. He gave us a stronger antibiotic and we started doing nebulizer treatments every hour on Monday afternoon, and now back to every four hours for the next few days. That seemed to help, but he'd start wheezing again about 10 minutes after the treatment. We are supposed to watch him very closely the next couple of days, and if the wheezing doesn't stop or worsens, we need to go back in for further evaluation. So far it seems to have stayed the same, but at least not worsened. They worry a lot about RSV and pnemonia, so please keep this little guy in your prayers, once again. I just read about another child in my preemie group who just spent the last three days in the hospital from pnemonia... that started from a common cold! Ugh. And its not even cold and flu season yet! I also heard the pulmonary nurse said she's surprised at how many cases she's already seen of RSV in DC (and vaccinations do not start until October, when the season usually starts). I'm reminded again this week of the insensitive comment said to Bran a couple months ago of "when are you going to think of anyone but yourself and Lucas?" when trying to keep the kids separated from one with a fever and illness. This is exactly why!

We're just holding for now and will see what transpires. Thank you to everyone that sent emails or called us this week, after learning the news of his pending surgery... we know he's in a lot of people's hearts. It really means a lot.

PS, he's still all smiles through all of this. My little hero.