Sunday, August 07, 2005

55% oxygen, SoluMedrol flowing, Tough weekend

Long post coming, so visit the bathroom before you read on. Those of you with a wireless network and a notebook computer, carry on. :O)
Condition is still critical, but a nice thing has happened. She's been on 55% oxygen since 1am, and is still able to get 89%-93% saturation, depending on whether she's rolled onto the "good" lung or the one that had collapsed & has the tube. They tried 55% a day or two ago, but it wasn't tolerated well. I'm going to go over again after dinner, so I hope she's holding.
Still battling fevers, some of it from infection, some from the Amphotericin.
Another pint of blood because hemoglobin is low.
She'd been having trouble getting enough nutrition (protein concern from a few days back) with both the TPN through the IV and the tube down the throat through which the creamed pizza had been flowing. So they put the gastrostomy tube in a couple days ago and just started putting food through it yesterday. Let's hope that this method will get her the nourishment she needs in order to help the healing process.
Denise has been developing some redness on her back (because she's been on it for almost 3 weeks). So the nurses are rolling her on her sides during the day (this is more than just the automatic rocking that the bed is doing).
The arterial line is going to come out of her arm. It's been in a long time & started bleeding. I *think* they were using it for an arterial blood pressure (which has continued to be adequate without meds... they'll use a cuff to determine it from here on out). And I know they've been using it to draw blood to determine blood gas composition. They'll just have to stick her each time they need to draw now.
She's been started on a drug called SoluMedrol. The doctor found an article that suggested that this steroid would decrease scarring in the lungs. The inflammation caused by the lung infection is what it attacks. One of my aunt nurses thought that in addition, it might have the secondary effect of bringing down inflammation in the intestines, which will help absorption of nutrition (and amino acids in the proteins, and THEN she'll be able to make enough blood cells). And since she'll be getting 120mg/day in 3 doses over 4 weeks (a LOT), we also stand a pretty darn good chance of taking 1st place in the women's shot put event this year.
They attached a really cool graphing screen to Denise's ventilator. In addition to the graphs of each breath, it has a number that the regular vent panel doesn't measure. It's label is Dyn.Char ml/cm H2O. I figure it's tracking pressure measured in milliliters per centimeter of water, but anyone know what Dyn.Char means? My understanding is that the hospital is also going to try to borrow a super-fancy ventilator from City of Hope that measures even more things so they can get a better handle on how to most effectively help Denise.
Denise's dad said that a couple times last night, Denise tried opening her eyes. When I was there earlier today, the nurse got a nostril flare out of Denise when running a pen up the sole of Denise's foot. I take that as a good thing; further comfort that she can still respond to stimuli at times. Dumb, but amusing to me: when I got in my car and turned it on to go home, the song playing on the radio was "I Wanna Be Sedated" by the Ramones. I had to chuckle.

Denise & I started reading The Purpose-Driven Life the day before she started feeling ill. So I've been reading it aloud in the hospital each day. A couple days ago, we hit chapter 25: Transformed by Trouble. It was very encouraging. I'll be re-reading that topic a few more times, I'm sure. Overall, it's a pretty good book. I don't usually jump on whatever Christian trend is being hyped at the moment. But I'd say that this one's worth the read whether you're a newbie Christian, long-time Christian, or anywhere in between. Even if you're one of our loved ones that don't agree with the way Denise & I see things spiritually, I think you might find the book pretty insightful and encouraging during this time. I've been told many times lately that I might find comfort in Why Bad Things Happen To Good People, an oft-recommended book during times of crisis. I've read it, but I think there's a better one called Where Is God When It Hurts? by Philip Yancey. I just thought it did an even better job of tackling the toughest of questions when you start wondering why God lets some things happen. I've got a well-read copy that you can borrow when you need it, after I'm done going through it again.
We also started To Kill A Mockingbird today. It's one of the few books that I had to read in school that I actually liked (I liked the Mark Twain books, also). Denise remembered it being a favorite (though she couldn't remember why). So I thought we might as well pick up a copy and read a chapter or two each day together. I try to do different voices, so at some point I'm sure the nurses will think I'm nuts. At least the nurses will get a break from it... Denise is a captive audience. Good thing they say she' won't remember any of this, huh?

I've gotta say, the last few days have been really rough. Daniel was cremated. They say that two things in life are certain: death & taxes. Add permits to the list. I couldn't believe I was filling out paperwork & paying fees to deal with burial and cremation. With all my energy focused on Denise's situation, Danny's loss has been on the back burner. It all came up again a couple days ago. What's worse is that I had to make all the decisions without Denise's input. We knew with each pregnancy that we could lose the babies. But we never knew to think of what to do next with mortuaries, services, burials, etc.
The kids, especially Gracie have really been missing mommy. Gracie has thought through the situation so well that she suggested that maybe if she couldn't visit, she could call. When I said there's no phone in the room, she told me to crawl under the hospital and wire one in (Gracie & I went under our house to help a friend that was doing electrical work for us). I told her it's not my hospital, so I can't really do that. She said I can use the cell phone. I told her mommy's room doesn't get a cell phone signal. I'm running out of options to tell a pretty bright girl of 3 1/2 years. Jacob simply sometimes asks, "Mama?"
The news that the doctor laid on me Friday, that Denise would probably be in the hospital for months, has been getting me pretty low over this weekend, too. I've got to figure out what to do with the kids once I have to start back to teaching in a few weeks. We made a goal to have Denise stay home & be mommy. In many ways, I think it'd be easier on the family for me to be laid up than for Denise. I'm trying to focus on the fact that it's better for us to have her back in months than for us to lose her altogether.
On the same floor as the CCU, there is a hallway with some windows at the end. Everyone goes there to get good cell phone reception. There are smudges on the windows from people that I've seen talking on phones, leaning their heads against the windows in grief, helplessness, exhaustion... After about 3 weeks of this, and with all that's been mounting over the last few days, I finally added my smudge to the collection.

8 Comments:

Anonymous Anonymous said...

Phil,

Hang in there bud :) You have been doing a great job staying strong. Keep focusing on the small details when possible. Its less overwhelming. Song flash: "One day at a time sweet Jesus..." by Christie (someone)old christian singer.

Right now it sounds like Denise is in a holding pattern which is good. You all have our continued love and prayers.

Chris & Rosejoi Hancock

August 07, 2005 8:42 PM  
Anonymous Anonymous said...

Im so glad to hear that Denise is hanging in there. The Lord knows His plan for her, and for those babies. I am praying now for comfort and blessing on Gracie and Jacob, and am confident that the Lord will provide care for the children once you return to work. And I pray for the arrangements for Danny that you will have strength throughout. God is good. He never abandons us. Is there anything too hard for Him? Lean on that.

Blessings
Sarona Farrell

August 07, 2005 9:25 PM  
Anonymous Anonymous said...

Dear Phil,
May your continue to feel the presence of the Lord surrounding and embracing you all as you go through this very trying time. I know that the Lord is speaking to Denise and that she hears His Voice offering comfort and encouragement. We will continue to pray for the kids as they continue to miss mommy so much. I know that the loss of Daniel is tremendous. Try to find comfort in the promise that you will one day see him again. Blessings to you dear brother.
With love and prayers,
Bob & Rose

August 07, 2005 9:43 PM  
Blogger Christy Wheeler said...

Phil,

I don't even know where to start. You don't know me and I can pretty well assure you that our paths have never crossed. But I received your prayer request from a friend of a friend, etc. What's amazing to me (not really) is the bond that my family and I feel with yours, without even knowing you. I know that's because we're part of the BIG family.

Please know that every night, my 7 and 4 year old little boys get down on their knees with me and pray for Denise. But what's so touching to me is hearing my 4 year old pray for Jacob and Gracie...

Please know that though we have no pictures to place with your names, your lives and your need for Denise's complete healing is etched in our hearts and we stand together believing for God's grace, peace and provision in your home.

Amazed by the love we feel for you,

Christy Wheeler

August 07, 2005 11:43 PM  
Anonymous Anonymous said...

Dear Phil,
Every day I have read the comments people leave looking for the name of someone I know. I haven't known anyone and I've known you for 12 years. What I have been so struck by is how great is the love of Christ. Yesterday, I was singing to Autumn "Beloved, let us love one another, for love is of God and everyone that loveth is born of God and knoweth God; he that loveth not, knoweth not God for God is love; Beloved, let us love one another. 1 John 4:7-8". I can see how many people's lives you and Denise have touched and now we have the chance to come around you and love you. I will be praying that God will give you wisdom and provide for Gracie and Jacob when school starts back up.
Suzanne Sniffen

August 08, 2005 2:53 AM  
Blogger Anne said...

Phil - I have never met you or your family; I was notified about your situation from a friend. You are in my prayers, particularly for your kids. My deepest sympathy for the loss of Daniel. Know that you and yours are being held up by scores of people, like Moses' arms being held up by his friends during that battle.

Anne Floyd
California

August 08, 2005 11:52 AM  
Anonymous Anonymous said...

I heard of your situation from Brigid Nelson. I sympathize with everything that you and your children are going through. I can't even imagine how hard this must be for you. I have started a prayer chain on behalf of Denise, and your family. My prayers and thoughts will be with you during this difficult time.

Steve Hall
Bloomington IL.

August 08, 2005 2:11 PM  
Anonymous Erin Lloyd said...

Dear Phil,
I am so sorry to hear about your wife. I am praying not only for you and your family, but also for the Doctors and nurses that are caring for her. I truely believe that God heals people. Please continue to keep us informed. The more people that read about you, Denise, Gracie, Jacob, and Daniel the more that are praying. I am passing on your web address to my Sunday school class tomorrow. Be strong in your faith, and tell Denise that we all want to hear from her when she's better!!

In His name,
Erin Lloyd
Godley, Texas

August 13, 2005 8:42 PM  

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