140

That's how many days of her 190 day life M has spend in either the NICU or PICU. There is currently no end in sight. Her numbers, you know the famous "numbers", are all over the board and she is in no state to head to the OR Tuesday for a new shunt. Our theory is that she will still head to the OR, but for another ventricle flush. We're probably looking at another couple weeks. If we could get a decent, consistent nurse, things would be A-okay, but we've had some real winners (insert sarcasm here) lately! Thankfully our neurosurgeon is due back from his week long conference (which happened to be in the Caymans) tomorrow. I have no doubt he'll have some answers and a fabulous plan in place. :)

Hospital Life

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.

Lucky Number 7

7th surgery scheduled for 7:30 this morning. I guess it's not lucky that M is having her seventh surgery today, but hopefully after this one we are one away from being done for a long, long time! Just trying to find the sunshine in all of this............

Things That Don't Suck

Alright, thank you to all who indulged me in my pity party last night. I'm over it and ready to move on. It sucks that M has had to go through so much in her short life and that our family is once again separated. So, to lift my spirits, I thought I'd start out our 2-3 week hospital stretch with a little game of "Things That Don't Suck". Here's how it works: Take into account your current life situation, ignore all the things you might be inclined to complain about and list ten things in your life right now that DON'T suck. If you're reading, consider yourself tagged and post your answers to your blog. I'll start:

1. My Husband - my wonderful, amazing, strong and supportive husband who lets me have my freak outs, understands my insanity (or at least pretends to) and loves me no matter what.

2. My Kiddos - my silly, crazy son who can always make me laugh and shows me the beauty and excitement in everything around us; and my beautiful, resilient daughter who faces each obstacle with grace and shows me every day what tough really is.

3. Support - we have had such an outpouring of support from our family and friends. It's so comforting to know that there are so many people poised and ready to help us out.

4. My job - so far, they have been extremely supportive and understanding of my need to have time off.

5. Our doctors - we have some of the finest doctors in the nation. I have complete faith in the care M is receiving and at a time like this, that is a huge weight off my shoulders.

6. American Family Children's Hospital - I've said it before, this is a phenomenal facility with incredible staff that we are blessed to have access to.

7. Our Insurance - we all complain about it, we all hate to pay for it, but without it, we would be financially devastated. We have some excellent coverage and for that, I am so grateful.

8. The Internet - may sound shallow, but without it I would not have access to the virtual family and friends I've come to depend on these last few years.

9. Living in the US - if there's something you want to complain about, watch 2 minutes of Haiti coverage, then get over it and be thankful for what we have here!

10. Diet Coke and Hospital Potatoes - need I say more?

Speechless..........

We're back in the PICU, where we will remain for ANOTHER 2-3 weeks. We had five whole days at home. I have absolutely nothing to say right now.

Surgery, Diet Coke and yes.....more potatoes

M went to surgery at about 8:30 this morning. I went down to the cafeteria to get the super giant soda - nothing beats fountain Diet Coke! I decided I should grab some food and you guessed it - I ended up with Cheesy potatoes. There has to be some sort of potato addiction support group out there.

I digress.

M's surgeon called shortly after she went down and said that after reviewing her scans he did not feel the planned left sided shunt placement would be best for her. He didn't want to put it back on the right because that's where the infection and bulk of the inflammation was and she's had 5 other surgeries on that side. By putting on the left we risked one or more of the ventricles not draining well and ending up right back in surgery. By putting it on the right, we have a little higher risk of a repeat infection or blockage from the remaining inflammation. Ultimately, long term, having on the right is the best option, so that's the plan.

It appears she will probably come back to the PICU after surgery to finish out her IV antibiotics. If all goes well we should go home Saturday night. Apparently, the other floors of the hospital are filling up fast.

So, we wait and pray that our little fighter continues to fight and that we'll all be home together again this weekend.

Step away from the potatoes

If I have to be stuck in a hospital, this is a pretty darn good one to be stuck in. They have a killer cafeteria, which is really more like a food court. It's crazy expensive, but after 10 days here I'm pretty sure I've tried everything. There's only one problem......they have the best potatoes and desserts! I'm not really sure how many times I've had mashed potatoes and gravy or cheesy potatoes and I know I've had at least one gormet dessert each day. We have to go home soon or I'm going to weigh 300 pounds!

M is slated for surgery tomorrow morning. If all goes perfectly, she'll be discharged after her antibiotic course is completed on Saturday. Keep your fingers crossed for us.

Pictures

I'm home today for a couple more hours. E is napping so I thought instead of yet another picture-less post, I'd give you a little sampling of our holiday. M continues to maintain. She's happy and comfortable, eating well, tolerating her medications. We're hoping for surgery next week if things continue to go well.

Happy New Year Everyone!

Best buddies (until Cash demolished the gingerbread train).

The gingerbread train about 30 minutes before it was demolished by Cash.

M wasn't having any part of Santa. E asked for.....letters and numbers!

Yes, she always looks this surprised!

Christmas Eve 2009.

Day 1 - before the Hickman.

That's my girl - always making the best of a difficult situation.

Have you ever seen such an angelic face?
My crazy kiddos!