Saturday, January 23, 2010

A quick update

You'd think I'd have tons of spare time to blog sitting around a hospital every other day, but it seems we are busier than ever.

M's surgery last Tuesday went well. She had a ventriculostomy and an external ventricular drain placed. Her CSF is draining well and her infection appears to be under control. There were concerns after her surgery that her ventricles were loculated (walled off) again, so she had a dye study on Thursday. It showed, thankfully, that all of her ventricles are communicating at this time. That means when her new shunt is placed it "should" be relatively uncomplicated. She is tolerating hospitalization as well as ever. She is the most happy, content baby I have ever met!

We have made the decision to hold off on having her new shunt placed until our neurosurgeon returns from the conference he is attending. We had the option of having the other neurosurgeon do it later next week, but my mommy gut says to wait. Tentatively her surgery (number 8) is scheduled for Feb 2nd. She will receive a VA shunt this time with the distal part of the tubing running to her heart instead of her abdomen. Hopefully it will provide better results and we can actually start counting weeks and perhaps even months of shunt success instead of days.

E, my tough, sweet, boy is doing okay with all of this. It has worn on him for sure. Not having both of us at home every day/night has been difficult. He has regressed a bit to being very insecure and needing to have us in constant sight. He is also sleeping with us - something he has never done. As long as we keep him informed of what's happening and who's going to be where each day, he seems to be comfortable.

Kevin and I are holding up okay. We're exhausted but managing. We both have had "those days" although we try to have them opposite each other. It would definitely not be good for anyone to have both of us melt down on the same day! :)

My main struggle right now is internal - I feel so guilty and at times sad and overwhelmed. Guilty when I'm not with my daughter in the PICU, guilty when I'm not with my son at home, sad that I only see my husband for a few minutes every few days, guilty that I'm not giving 110% at work every day, guilty that my house is not in tip-top shape, and definitely overwhelmed at the thought of trying to figure out how we're going to pay our bills this month. I pride myself on being a great mom, a great wife, a great friend and a great employee. Right now I don't feel like any of those and that frustrates me to no end. I know this is merely a blip in our life. I know that years from now we'll look back and it won't seem so significant. Truth is, we're getting by and I know we will come out okay - it's just a matter of time.


Michelle said...

You are inspirational in your perseverence! You have a lot on your plate and you just keep on going with a great attitude (for the most part) no matter what loops are thrown you way! You are awesome and it is always harder to live up to your OWN high expectations than it is to do a run of the mill everyday good job at being mom, wife, employee. Just hang in there!

Kimberly said...

Oh Shannon - that sounds so hard! I'm praying for you guys, for peace and continued healing! What an amazing mom you are!
BTW I created my "things that don't suck" list! :)

Confessions of a Mother, Lawyer & Crazy Woman said...

Wow. Your story has brought tears to my eyes. Your little one is such a trooper. You get to give yourself a PASS on all the other areas of your life right now. I know it is easier said than done. But just getting up each day and dealing with the stress of your child in the hospital is enough. Hour by hour ... thinking of you and hoping this is a blip for you very very soon.