Friday, October 9, 2009

First the Good News

The Good News:
Somaya is doing much better. We spent 6 hours in the ER Friday night getting IV antibiotics. They also gave her some morphine because she was in so much pain and Tylenol for the fever. The doctor said she could be admitted to give her another dose of antibiotics in 24 hours or we could go home with our current oral antibiotics and some Lortab. I didn't want to spend any more time in the hospital so I opted for going home and thankfully she's doing fine now--back to her old feisty self.

The Bad News:
Yusef's EEG still shows frequent seizure activity. We saw the neurologist on Monday and he thinks it's definitely a good sign that we're not seeing clinical seizures so he wants to give it 6 more weeks and redo the EEG. If at this time, Yusef is still showing seizure activity, we'll go ahead with the ACTH treatments. This also explains why we're not seeing any progression in his milestones and the limited interaction.

ACTH (adrenocorticotropic hormone) is generally a very effective treatment for infantile spasms. However, it comes with a whole host of scary side effects. Everything from irritability, to gastrointestinal bleeding, to sepsis.

The Dr. said these would be given weekly, and that I could do these at home. He knows I'm a nurse and I have worked with him before in the professional setting. I'm assuming Yusef will need a PICC line, which again, I've cared for many, many times.

Kudos to all you Mom's out there who've had to care for your little ones at home with NO medical training. I remember when Zainah had her Hickman and later a PICC line, how stressful it was caring for them, even with lots and lots of experience. I can't even imagine how intimidating it would be for someone learning everything for the first time.

Part of me just wants to get this over with and go ahead with the treatments. I want to see my my boy advancing and working on all his milestones again. Sigh. Patience is a virtue I guess. . .

Oh yeah, and now Zainah is sick with stomach cramps, vomiting, and fevers. Blah. I mean, can we catch a break with these kids. Sometimes, you just gotta laugh so you don't cry.

1 comment:

Sonia said...

Your poor babies! They are lucky to have a mom who is also a Nurse! I do understand ... it's the same here. If one is not sick, the other one is. And that's including my husband!

Hope the family feels well soon!