Monday, October 12, 2009

Life at 4 weeks old

Dear ML,

You are four weeks today. Good god, son, you have really given us a scare this week.

We have been at the hospital since Thursday morning. And we still don't even have much of a clue.

We thought it would be 48 hours, to rule out a bacterial infection, but then when your fevers finally broke, you started having some seizures. You had 12 seizures on Saturday and they moved you to the PICU and started you on anti seizure medication. You have had 2 rounds of antibiotics and are on an antiviral now.

You have had an LP, blood and urine cultures, several IVs, an EEG, a CT scan of your head and abdomen, and tonight an MRI.

They are ruling our really scary things, but for now, the medication has stopped the seizures, and you have no fever, and you are eating and sleeping appropriately and peeing and pooping, etc. You have even gained weight during your stay, while eating a combination of your mama's breast milk, and formula.

The big things we are still worried about are: 1) a specific viral meningitis, 2) a viral encephalitis, 3) Inborn error of metabolism. The EEG showed some seizure activity but that was consistent with your age. Your head MRI ruled out structural abnormalities in the brain that might cause seizures, but the preliminary results showed some "white matter changes" which are indicative of infection (in other words, encephalitis)... We don't know what this means yet, but they are pretty much all ready treating you for a virus like this.

Being with you through all of this has been scary and exhausting. But revealed the blessings in our lives too.

Your brother is staying with your TT, Bill, and Nana and Papa (even though they don't live together, this is like a group operation) We have missed him so much, but he is distracted and doing pretty well without us. And we don't have to worry about him at all because he is so well taken care of. We have been with you around the clock or have had family sitting with you while we rest, eat, and take anxiety reducing walks.

It seems like there might have been a better way to get all this special "family time" with you, but it's not up to us to dictate these things I guess. We love you so much and your mommies are taking turns falling apart and holding it together. We think in a few weeks, this will all seem like a distant memory, but right now, that seems like too much to hope for.

Keep hanging in there, little boy. You are truly surrounded by love.

Holding you close to us,
Your mommies


AJ's mommy said...

I am so sorry. I am praying for you guys! Please keep us posted.

Sarah said...

wow. thinking about you guys and sending healing thoughts of strength and answers.