Saturday, October 01, 2005

Leaps & Bounds, Visiting Guidelines, Work

Doctor said Denise is better today (Friday) than yesterday, totally flipped around, recovering by leaps & bounds (can somebody give me an “Amen!”). If all goes perfectly, expect 3-4 weeks ICU, then to the floor, then to rehab facility. I hope that eventually, all this can move closer to home, as we’re still looking at a long haul. It was one thing to live 5 to 10 minutes from the hospital… now I’m 20 minutes (no traffic) to an hour (with traffic) from the hospital. I asked what the “magic bullet” treatment or change was that accounted for the improvement. He thought maybe patience, maybe not giving her too many treatments too fast. Whatever it is, she’s recovering and he’s just letting her march on. We may never know, but I hope it keeps going, quickly and completely. By the way, the doctor took plenty of time to fill me in after firing off a salvo of questions to a resident. Today seemed less hectic to me (or perhaps I’m getting used to the feel of the place), so I felt more at ease about asking questions (sorry… I didn’t write the answers down, so the nurses in our audience will have to wait for many of the specifics). I’m starting with just a few. They should get sick of me asking questions pretty soon. I was hanging around Denise a lot today… more than any day yet.

Big day for her… CT scan & MRI performed and will hopefully give the doctors some insight into the elusive infection(s). A tube was inserted to continually drain off ascites from the abdomen (hopefully this will avoid paracentesis every few days). They took her at about 2pm and she didn’t return until about 7pm. She looked exhausted before, and even more so after (she was seldom very awake today). A sedative besides Ativan was used, but I can’t remember the name. The J-tube feedings are being tolerated well. No vomiting, and the machine was cranked up to 30. I’m glad that she’ll be getting some more food, as she’s looking pretty skeletal & tired to me at the moment. Then again, she’s critically ill and apparently still a bit septic, so I guess that’s what I should expect. Urine output still increasing, liver function is on the way, but will take a couple weeks. In the mean time, she’s jaundiced. I saw heart rates between 127 and 143. Cardiac index was hovering above 4 most of the time. I saw temperatures between 101.4 and 102.7… they’re keeping her under a cooling blanket & icing her up sometimes. She hates the plastic ice bags, so I wrapped them in pillow cases whenever I could. Blood pressure is good, too. They have her on a vent mode I hadn’t heard of: SIMV. It sounded like Bi-level to me, but it’s not. I’ll have to research that one.

I found out that yesterday there was a conference at Arcadia Methodist that had been scheduled months in advance. It happened that her doctor from there and the doctor from USC sat by each other. Small world when you wear white coats, I guess. Speaking of, I’m thinking of buying a white coat. The ICU at USC has a door with a big push button next to it. No phone call’s required to get in the door. All the white-coated people go in that way. I could sneak in and just stand around with a clipboard and people might think I’m a lab guy waiting for someone, and I could see Denise. Add a mask & yellow gown, and I’d blend into the crowd… they’d never find me. Did I mention last night that I look really silly wearing shorts with the gown? I didn’t think of it until I saw Denise’s dad. We look like we’re wearing housedresses. I guess there’s a reason that they only make scrubs with long pant legs.

Guidelines for visiting:
So far, there are no restrictions on who can visit. As long as no procedures are being performed, they’re letting us in, 2 at a time. Preferred visiting hours are 11am-8pm (ICU hours are more flexible than for the rest of the hospital). I heard someone say that they only bend the “Two Visitor” rule for Siamese triplets, but I’ve seen some cheating here & there. I’d recommend calling ahead if you’d like to visit (323-442-8500), ask for “7 ICU” and ask if Denise Williams will be having anything done at the time you’d like to visit that might preclude you from visiting. And then be prepared to wait sometimes. Unfortunately, the parking structure isn’t free (the attendant leaves at 10:30 pm, so you can get out for nothing if you’re willing to wait). 3 moms from PCS came by to pray with Denise (her favorite thing for visitors to do with her). It was like church came to the bedside. Our pastor came by, too. He’s a tall guy, so the gown looked like a miniskirt on him. Also got a visit from Denise’s dear friend that came all the way from Idaho. OK, she was down here for a wedding. But still, there’s the beach, Disneyland, and all sorts of other things, and all she really wanted to do was visit Denise. She’s worth the visit.

I need some wisdom concerning what to do about work. Denise is going to be away from home for months. Options are to dive back in at work or use up sick days & possibly also do family medical leave and have a long-term sub. When Denise is stable or improving (and just a short drive away), I find it tolerable to go to work… even helpful to have some normalcy & so much support. When there’s a crisis (and when she’s a longer drive away), I want to be by her. Since I never know what’s going to happen when, I don’t know what to do. Earlier today I felt good about jumping back in at work, at least for the time that Denise’s folks are in town (it’s brought me peace to have them to tag-team with). Then I went to the hospital and saw Denise looking frail, dazed, with more hoses, still with a high fever, and I had second thoughts. I love the school where I work (been there 12 years) and want to do right by them almost as much as I want to do right by Denise & the kids (and I was reminded to take care of myself… I forget that a lot lately). In fact, I’m having a hard time coming up with ideas of how to schedule a balance of time at the hospital with Denise, time with the kids, time on the road, time at work, time just keeping on top of pesky things like bills & paperwork. For proof of that, notice that I'm posting this at about 1am. So save some prayer energy for that aspect of our struggle, and be sure to post ideas & insights if you’ve got ‘em.


Anonymous Anonymous said...

Phil,You ask for advise here it is:GOD first,Family second,Work third.Work can wait.Split your time between Denise and the kids.
Blessings to you all,Continuing in Prayer.....

A friend

October 01, 2005 3:41 AM  
Blogger Call Me Grandma said...

You are an amazing man, husband and father. I pray for our Lord to take you by the hand and to guide you. I pray he gives you strength to be all and to do all that you have to.
May God bless you and your family with the things you need.

October 01, 2005 3:50 AM  
Blogger barb pfister said...

AMEN!!!!!!!!! God is good and I pray that Denise's recovery continues. I also pray for you and your children.Make sure to take care of yourself so that you can take care of everything God is having you do right now.

May God continue to bless.

October 01, 2005 6:23 AM  
Anonymous Anonymous said...

Phil, All of us at PCS are here for you. We all want what is best for your family, we can stand in the gap for you at work. Be patient with yourself and listen to the Lord, he'll guide you. Remember, eating a bear is one bite at a time! I can't help with computer class (those that know me can attest to that) but I promise to pray on it for you. Be gentle with you, you are precious to us too! In the Gap, Di Evans and Family

October 01, 2005 6:38 AM  
Anonymous Anonymous said...

WOW!! Is God good! I am so happy to hear that Denise is doing better! You guys are in our prayers daliy. Phil, the Lord will lead you in the direction he wants you to go in. God Bless

October 01, 2005 8:52 AM  
Anonymous Anonymous said...

Hey Buddy,
Praise God! He is so good and he is faithful to complete the work that he has begun! I believe in my heart that God has a plan and a Miracle for your family. I love you both! About work, the minute I read it, the first thing came to mind, GOD FIRST, FAMILY, WORK! The Lord will provide, he already has let him provide for you! I believe he wants to! He has given you so much, I know that work is important, but your family wow! what a ministry you have there. God will take care of those whom love him and trust him. He will show you what to do, give yourself Grace and know that he only has your best intrest at hand.

Your life long friend,

October 01, 2005 9:34 AM  
Anonymous Anonymous said...

God will supply all your needs from his glorious riches, which have been given to us in Christ Jesus

Philippians 4:19 NLT

October 01, 2005 9:36 AM  
Anonymous Susie said...

Phil, Ask Denise for her input regarding work/visits/etc. and see what she says.

October 01, 2005 11:16 AM  
Anonymous Anonymous said...

This is from Diane in Washington. I don't know you or any of your friends or family, but I have been thinking the following...I don't know what your financial situation is with work, but I bet there there are lots who would be willing to contribute to a fund so that you could take the time off that you need to be with Denise and the kids. Is there anyone reading this blog that could check with Phil if there is a need and coordinate such a thing? I'm sure its hard for Phil to ask for this kind of help. Diane in Washington

October 01, 2005 1:32 PM  
Anonymous Anonymous said...

Phil - Here's my 2 cents...your PCS family will respect whatever decision you make; many of them are most likely wondering why you haven't taken a leave already, considering what you've been up against. I agree with other posters, GOD, FAMILY, WORK. This dicision won't come easily, but most of the decisions you've had to make lately didn't. Seek God's advice, and talk with Denise about it too. I'm sure she'd love for you to be spending lots of time with the kids, since she can't. Praying for you in all of this.

October 01, 2005 2:19 PM  
Anonymous Anonymous said...

Working at PCS was a source of strength for me, stay in relationship in some form. To the extent it makes sense to do some work its a good place to be.

Questions I'd ask...

While its not the same as before she was sick, consider what is the effect on the school when you have to be gone for a crisis compared to being gone on a leave?

Are there ways some of us on your cheering team could help with duties that would make balancing easier for you? Eg tech support?

Which options are motivated by the fears that sneek into our hearts, versus the love that God pours in and wants us to pour out? What are the differences?

And by the way, you are doing GREAT!

October 02, 2005 4:22 PM  

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