Saturday, June 30, 2007

The move went well. While I wasn't there for the "big reveal," Chuck's nurse told me his eyes got huge when he saw the GINORMOUS window that looks out into a wooded area. This is a shock, as Chuck is a creature of the dark...preferring indoor comforts and blinds to anything resembling nature or light. My first question, "Do you want me to pull the blinds?" HE DID NOT! Wowwie wow. I told him, "Chuck, this is the place you will heal and go home."

Chuck's swelling has gone waaay down, and he is feeling very much like himself. Yesterday, while I was absorbed in a TV show, he transformed into Cousin It. He tapped my arm, and I turned to see, well, Cousin It. He had pulled all of his shoulder-length hair over his face and put on his glasses. I almost wet my pants I laughed so hard.

He is in intensive care, room 8.

Friday, June 29, 2007

Chuck is looking and feeling really good. His room is cleared out and we're ready for the big move. The hospital will treat tomorrow as a natural disaster...really. Thus, I've opted to help out by staying out of the way. I don't know if you are as amazed by this as I am. God has REALLY brought me a looooong way. I feel completely calm. What up?

Thursday, June 28, 2007

The new place is fantastic. It has a very "healing" sort of vibe. Chuck will be MUCH happier there. It will provide him with much needed peace, quiet, and PRIVACY. Whew.

Today our nephew, Kyser, is TEN. He's hit the double digits! I just can't believe it.

All is well.

Wednesday, June 27, 2007

Chuck had a really good day. Because he was awake and alert, he was BORED stiff. Granted, I can only image how frustrating it is to be confined like he is. Still, the man has an ipod, a computer, a play station portable, AND free HBO. I can only imagine how I would do. Fine on day one...then around day TWO, I'd be bored. After day 400???? Oi. 400 days! Truly, Chuck is amazing.

He just looks so good! I love it when he likes like himself.

I finally found the PERFECT book to read to Chuck. "The Princess Bride," of course. While the movie is great, the book is perfection. I found the copy that Chuck gave me when we were dating. This is part of the inscription: "I would climb the Cliffs of Insanity. I would duel Inigo. I would fight Fezzik. I would mostly die. I would come all the way back." Indeed.

Tuesday, June 26, 2007

Chuck's wounds are doing fabulously!!! Wound care has discontinued the fancy schmancy dressing for his shoulder. The skin there is actually scabbing...sorta. Crazy. The wound now gets a simple sponge dressing. The purpose is simply to keep it covered as the skin continues to knit. I'm so thrilled about Kevin healing. Yes, I named the wound. "Kevin" is how the wound came to be...ahhh, Kevin, he will not be missed.

Chuck's looking much better these days. His breathing is more comfortable.

One of my childhood friends, James Tindell, stopped by for a visit. His lovely wife, Karman, and their two adorable girls, Hailey and Amy, were a welcome sight. They are such a neat family! James took a look at Chuck's bed in the hopes of making some equipment to help Chuck pull himself up to sit. The trapeze thang is a no go. It just cannot be positioned in a way for Chuck to utilize it effectively. As God would have it, James makes adaptive equipment for people with disabilities. How about that?

Monday, June 25, 2007

One liter. The radiologist pulled out one liter of fluid from Chuck's abdominal area!

Chuck seemed really comfortable this evening. Breathing looked good...nothing much new to report.

Thanks for your prayers.
Chuck is going to have a simple procedure to remove the excess fluid in his abdominal area. It is called paracentesis. I found a good web site that explains it: He will also receive more albumin (protein) via his PICC line. The albumin should help the cells absorb the fluid that is currently floating outside the cells.

He received a blood gas this morning, and all looks fine! He's not over run with carbon dioxide like I feared. I'll have more updates once I get up to the hospital.

Sunday, June 24, 2007

Now, I've seen Chuck more swollen than he is currently, but I've never seen his skin weep. Yep, the fluid is coming right out of his skin. Crazy, huh. I talked to the doctor on duty concerning lasix...and several other issues. First, lasix is effective for fluid within the cells, and Chuck's fluid in outside the cells. His protein levels are low, which accounts for the "third spacing." I did not realize it takes at least a week to correct protein levels. They've been pumping him full of protein for the past two days, so I've been expecting the fluid to decrease rapidly. Alas, not that simple. In addition, the fluid is causing excess gas to build in his abdomen, which is putting pressure on his diaphragm, which makes it hard to breathe. Tomorrow they may use a needle to relieve some of the fluid in his abdominal decrease the improve the breathing (that God built).

In addition, Chuck's thyroid is slow. I do not know much about this, but apparently, it can wreak havoc on all his "systems." I am grateful this has been discovered, and that it can be corrected with medication. As always, I think "this time, this is the answer we've been waiting for. Now everything will get better."
Chuck's still swollen and is still sleeping A LOT. He slept all day yesterday, all night, and most of today. Being the worrier that I am, I'm hoping it's not because he has too much carbon dioxide in his blood. Hopefully, his body needs rest and that is it.

Okay, to all my fellow self-sufficient delusionals out there, I have a confession. After one year and one month of Chuck's hospital stay, I STILL THINK I CAN CONTROL HIS PROGRESS. Yes, I still struggle with this issue and it has brought me no end of grief. That voice inside me that urges me on, "Just try harder. If you try harder, he will be better." How hard-headed can one person be? Self-sufficiency in the hands of a stubborn person like me can be quite dangerous...but quite comical to those watching my antics. Let's face it, I still struggle with trusting God. Why? Because he's not doing it my way! Has he proven himself faithful? Yep. Has he proven himself loving? Yep. Has he proven himself powerful? Yep. What gives? It's that seductive pull of seeing things happen when I take action. It's that desire to move things along...move, move, move. Yes, the squeaky wheel gets the oil. I've learned that full well. But is that a benefit? Who am I benefitting? Well, if you are delusional like me, of course you think the answer is yes. Yes, I know what is best for me, for Chuck, for our lives. Have I proven that to be false? Yep. And still, this battle of wills continues. All I really need to ask, when I want to jump in and CONTROL is this, "When I make demands, whose power is displayed?"

My new mantra has become, "I am powerless over Chuck's condition." And I'm sure "if I try hard enough," I'll believe it.

Saturday, June 23, 2007

Chuck's doing well. He slept aaaallll day long. His blood loss issue remains a mystery. The CT showed nothing...nada...zilch. His blood pressure has been fine; his breathing is fine; his potassium level is fine; his blood gas level is fine; his hemoglobin level is fine. What do you make of that? Thank you, God!

Okay, next Saturday Life Care will be MOVING. Every single patient is moving to the brand-spanking-new location. It is lovely...and is right across the street from the Spurs practice arena. How appropriate it that for Chuck?? The place looks really nice from the outside. Thursday I get to attend an open house. All the rooms are singles; everything is new and state-of-the-art. Plus, it's closer to the house. I think Chuck will be much happier there. I don't have the address yet, but it's on Floyd Curl right before you hit Huebner.

We've had a wonderful time with Mom, Christy, and Lindsey. Sadly, they return home tomorrow. Did I mention that Christy gave blood while she was hopes of helping Chuck? How cool is that? Did I marry into a great family or what? I'm proud to be a Picciuti.

Friday, June 22, 2007

According to Mom, Chuck was alert and active all day. We are very thankful for that. In addition, his bladder is fine. To address the "third spacing" thing, they are pumping Chuck full of protein. This will draw all the excess fluid into his cells. We still do not know where the 4 pints of blood went! His stomach looks a bit more distended today.
I keep forgetting to post this! Our friend, Brooke Dorman, is a speech pathologist. She is amazed that Chuck is able to swallow. He has no swallowing difficulties whatsoever. From the standpoint of someone who KNOWS, this is a miracle. That God...that Chuck...adore them in awe of them both.
Liz, perfect prayer and VERY applicable. There's a song that I keep singing...humming...focusing on, "Strength will rise as we wait upon the Lord, wait upon the Lord, we will wait upon the Lord."

Chuck is feeling tons better. Alas, we did not get the results last night. Well, we got the results, but no radiologist to read them. Apparently, Chuck's CT is HARD to read due to all the hardware in his give off a lot of "artifact."

Here is the theory on the blood loss. It is not pooling in his stomach, as it is not really distended. He has "lost" about 4 pints...significant. Where did it go? Perhaps in the space between the stomach and the back.

No theories yet on urine output. He has not been given any lasix...yet. They are trying to fill him full of fluids first, thinking that he's dry and is "third spacing." This means that the fluid in his body is collecting outside the cells...which makes him look a bit like a tick getting ready to POP. Well, he's not that swollen yet...but if he doesn't put out out.

Thanks for the outpouring of love!

Thursday, June 21, 2007

Chuck is okay. He's in I.C.U. again. Here are the issues: urine output is low, thought there is urine in his bladder; distended abdomen due either to urine issue or blood issue; blood count is low and is receiving 4 units today; will receive a c.t. scan to check for the abdominal stuff. The issue that moved him from regular room to I.C.U. was the low blood pressure. The last time I talked to the nurse, that seems to have improved.

Thank God that Chuck is okay; that his family is here; that I got a day of rest yesterday to prepare for another round of...stuff.

Wednesday, June 20, 2007

Chuck is fine. He sat in a chair for 45 minutes today. I haven't talked to wound care yet to get their analysis of his wounds.

This is one of the reasons why I LOVE where I work. I went in this morning, having cried all the way to work. (more on that later). Surprisingly, my face wasn't red and swollen. I went to wash it...and make sure I looked presentable...then went to see my friend Lynn. She was with Susan. (I love them BOTH). Catching up...Lynn comments on how strong I am...which led to me telling her I'd been crying all morning...and did not feel strong at all. Both women insisted that I take a sick day...and Lynn walked me to my cube to make sure I'd leave. Such angels! I work with the BEST people ever.

Okay, so why the crying? I'm tired. Chuck is depressed and sad. He gets upset every time I leave. It tears my heart in two. I can't help him. I pray for him. I listen to him. I encourage him to "just be sad" and to let it out. Alas, my boundaries with him get blurred and sometimes I take on his sadness. On top of that, I've been "fighting the system" as far as concerns with the attentiveness of some staff. Oi. The straw that broke my back was coming in early this morning to discover that his urine output was low. I tried to stay calm, but I just started reliving the memories of his kidneys shutting down in January. (Know this, upon arriving at the hospital around 4:30, output is normal. Thank you, God!!!)

I called Shea, who prayed me all the way in to work. She reminded me of David and God won the battle for David. I told her, "Yeah, yeah, God's won the battle, BUT MY HEART IS STILL BROKEN SO I DON'T REALLY CARE!" Shea is so sweet...she just let me cry and be heart broken. It's times like these that I realize I am not trusting that God loves me and Chuck. I'm not trusting that he is in control. I'm not trusting that he will make ALL things work together for good. And that's the answer to my heart A scripture that keeps rescuing me in these times is "Trust in the Lord with all your heart and do not lean on your own understanding." My understanding gets me into sooooooooo much trouble.

So, I spent the morning (with torrential downpours outside my window), eating popcorn and watching, appropriately enough, "Singing in the Rain." Then I slept for three hours. While all this helped soothe my mind, it was the quiet time crying to God that soothed my soul. I must hold on to truth...Chuck and I are precious to God. God will never take us anywhere that he has not checked out first. I just need to let go...let go...let go.
It's a wall day. I'm home, taking a sick day. I'm not sick in body, just spirit. More details later. Just pray for my endurance. Better yet, pray for me to become so very, very weak that I have no choice but to be carried by God.

Tuesday, June 19, 2007

Chuck's very drowsy today. His vent setting is down to 7. He feels like he's breathing fine. Praise God! Also, he sat in a chair for 30 minutes today. His wounds will be re-evaluated tomorrow or Thursday to see how they are handling the pressure.

Mom, Christy, and Lindsey arrive tomorrow!

Monday, June 18, 2007

Chuck sat in a chair for 15 minutes today! Whew, I had no idea this was coming. He's taking it in stride; I'm ecstatic.

T-bar trials will begin soon. Once he's titrated down to 4 (Friday, by my accounts), Dr. Bell will do t-bar trials with Chuck.
Just a quick morning update: Chuck's vent setting is down to 8. Historically, this is when he encounters difficulty. However, Dr. Bell has taken a different approach this time. Rather than moving Chuck down by leaps and bounds, he's moved him down one notch a day...starting at 20. The expectation is that Chuck's body will not notice the oh so gradual titration.

Sunday, June 17, 2007

Happy Father's Day! I've been blessed with two great men who will claim me as a daughter. Thanks to all you dads out there for all you do for your families. A BIG thanks to my dads...who've had a VERY big job this past year. XXOO

I am pretty much out of the loop concerning Chuck's health. This past week I would get up to the hospital around 7:30 or 8:00, so I missed all of the doctors, etc. As far as I can tell, he's just fine!

He got a new j-tube today. Lots o' drama surrounding the process, a few tears...but it all worked out. He may have inherited a new wound through it all. Please pray concerning the new spot on his right hip.

So, another great message this week. I asked the pastor to come visit Chuck, as I try to emphasize the points he makes, but let's face it, he's MUCH better at conveying a message than I am! (especially a spoken message). The message? If you are praying for rain for your crops, prepare your fields to receive it! Chuck and I are both on "survival" mode right now...just getting through our days. We've both stopped preparing for healing; preparing for increased strength; preparing to be active once more!

Saturday, June 16, 2007

Chuck had a rough day...he's just worn out. However, pain's okay, wounds are okay, breathing's okay.

I had a wonderful day...full of friends. I had lunch with Pat Shields, a friend from childhood. The man has a mind like a steel trap and he is hilarious. Then I had dinner with the Kuennings and the Davises.

Friday, June 15, 2007

Chuck looks MUCH better. I brought reinforcement with me this evening. Marilyn, who has been here all week from Florida, came up to the hospital to pray with Chuck. Her church has been praying all year. Since she was here, she wanted the opportunity to touch Chuck and pray with him. Whew, can that woman pray!! Powerful, powerful, powerful. She prayed for the doctors to gain clarity, as Chuck is a mystery. She prayed for Chuck's hopes to be realized...for strength, strength, strength...for healing. Amen!

As for the new trache, Chuck slept through the change out and doesn't remember a thing. He has had no discomfort.

With the labs that were run last night, a new infection was discovered. He's receiving antibiotics. That's it for this evening.
Chuck's had a rough 24 hours. Stacie noticed he "wasn't quite right" yesterday morning. Alas, I assumed it was due to a double-whammy of pain meds and nausea meds. Nope. When I arrived at 8:30 p.m., he was having uncontrollable spasms...convulsions if you will. It was AWFUL. They could not do anything to relieve his misery...I could not, Stacie could one could! They ran labs and discovered his potassium was toooooo high. This morning, he was not convulsing, but he looked weary!!

My hope is that by this evening, he will be feeling better. Please pray for the poor guy! Also, he had his trache replaced this morning. His other trache leaked. He may be sore for a while.

Lesson learned = if anyone notices Chuck does not seem right...immediately run labs!!!

Wednesday, June 13, 2007

Thank you to all who have been praying for Chuck's wounds. The wound vac is having a positive effect on the hardware areas. So, the vac stays put and keeps doing its thang.

The vent setting is turned down to 12. Dr. Bell told me that his plan is to titrate down one level a day until he hits 4. Then he'll start doing t-bar trials with Chuck. Please commit this to prayer.

Chuck is having an especially rough week. This is a BIG week at work...kinda the culmination of a year's worth of blood, sweat, and tears. It's one of those situations that really bonds people. Our whole reading team pulls together, linking arms, to create tests. However, it's mentally exhausting. We, reading/language people, are doing statistics and the like! It's insane, yet oddly stimulating. Nonetheless, it means long hours. (Chuck is NOT used to that AND he's a clock watcher.) I show up at 6:30 or so, and he looks like he's been hung out to dry. His eyes say it all, "Where have you been???" Special prayers for endurance. Two more days!

Tuesday, June 12, 2007

Sorry for the late post. Yesterday was a long, hard day! Chuck is doing well. The re-eval on the wounds has been postponed. It will most likely occur tomorrow. His tube feeding has been changed to something with more protein and his rate has been increased. If he tolerates it, this could really help the wounds (and everything else)! His vent setting is down to 14...he's getting there!

Sunday, June 10, 2007

Chuck is recovering from his big day. He got a "just because" gift from the Kuennings and the Davises. It's a Play Station Portable...complete with a few games! He got visits from the T's, Christy and the kids, Stacie, the Kuennings, and the Davises.

Speaking of "just because" gifts, Gary and Iris (from the Lions Club) brought Chuck an electronic Sudoku game. Chuck's new to Sudoku, but I'm a devoted fan. Gary and Iris said it's for Chuck or for those who come to visit. So know, there's entertainment here just waiting for you!

The vent setting has been titrated down to 15, so he's making steady progress. His wounds are doing well. Tomorrow is the big re-eval day.

Today's message at church was inspiring and came at just the right time. Basically, it's time to stop and re-evaluate what God is doing in our lives. We have wanted one thing and one thing only - for Chuck to be healed. Obviously, the answer to that is "not yet." So, rather than continuing to pursue our dream without consulting God, beating our heads against a brick wall, it's time to stop and seek God's purpose. He's steering us in another direction for our good.

Saturday, June 09, 2007

Today I celebrate a new year of life with my beloved. Could life get any sweeter??

Friday, June 08, 2007

Christy made a mad dash to San Antonio. She missed her big brother! How sweet is that? Oh, it was soooo good to see her and Lindsey. I just wanted to eat Lindsey up. That child is too precious. Matthew stayed with Mrs. T, so we'll probably see him on Sunday. That will make his Uncle Chuckie smile!

This has been a very full day for me, and I feel a bit out of the hospital loop! The report is that wounds look great. The troublesome "hardware wounds" will be re-evaluated on Monday. If they do not show progress, or have grown larger due to the vac, plan F goes into action.

Tomorrow is Chuck's birthday. Of course, it will be low-key. In fact, I'm taking the morning off. Christy is going to spend some time with him. I wonder if I can find a clear liquid cake??

I am oh so grateful for another year with Chuck.

Thursday, June 07, 2007

Chuck is moving right along. The vent setting was bumped down to 17 today. It started at 20 and has been decreased 1 point each day. Once he gets down around 10-12, he may get to try t-bar trials.

He got a good report on his wounds. Pain in manageable. Fever has gone down. Not too shabby.
Quick update based on questions:

Chuck has resumed occuaptional therapy! The therapist is quite impressed with his strength.

The gastroparesis has most likely been caused by Chuck's immobility and narcotic intake. Also, it could be a direct result of the surgery. It's one of those issues that can have many causes. Because Chuck has so many possible contributing factors, it's impossible to nail it down exactly. There is no cure for this. If it resolves, it will be due to more activity on Chuck's part = sitting up, moving around; as well as fewer narcotics. As far as medicine, he has been on reglan and will continue to be on it. It helps move food through the system. Aside from that, prayer, movement, and time are his best options.

Good news, his pain management is under control. We are thrilled with that!

Wednesday, June 06, 2007

Chuck has been nauseous again today. Apparently he has gastroparesis. The term actually means "a weak stomach." The stomach contracts to move food through. Chuck's stomach is not contracting. This news is good and bad. It's good to know the culprit. It's bad as there is no cure...sometimes it resolves itself. In the meantime, Chuck will continue to get sick when he puts food into his stomach. Can you imagine?? I get frustrated because I can't eat wheat. CHUCK CAN'T FREAKIN EAT!

Okay, aside from that, he's doing well. Wounds are knitting, lungs are strengthening, mood is, well, mood is appropriate for discovering you may never enjoy food again.

Still, today is better than yesterday. We are grateful for daily blessings...which are bountiful!!!

Tuesday, June 05, 2007

p.s. Chuck is running a fever. It's been around 99.3. Now it's up to 100.3. Please pray for protection!
Chuck's vent setting is being turned down sloooowly. This is progress, be it very gradual. Wounds are healing. Stomach still upset. However,he's allowed food now. That's about it for today!

Monday, June 04, 2007

Chuck is looking great, and acting very much like himself. Yesterday I was gushing to Mom about how great his wounds look, and he chastised me, reminding me to not get over excited. Now that's my boy!

Speaking of wounds, I got another look at them today. Wowwie wow, that wound vac is something else, not that I'm getting over excited or anything.

Is it too early to start the "Chuck's-birthday-instructions" warning? Chuck does not enjoy celebrating his birthday. Never has, never will. If you want to give him a real gift, behave naturally, as if it is any other day. In fact, if you want to bestow gifts upon him, do it before or after the "big day." He wants his birthday to be quiet, serene, and as unbirthday-like as possible. (It is this Saturday, by the way.) So, of all days to visit Chuck, this Saturday is the worst. You may want to throw out a prayer for me and my self-control as I LOVE BIRTHDAYS. It is only by my sheer love of birthdays and the desire to celebrate them in a fashion best suited for the guest of honor that allows me to totally ignore Chuck on his day.

Sunday, June 03, 2007

We've had two excellent visits today. First, Tod came up and spent time with Chuck so I could go to church. Tod does this each Sunday, and I think it is a precious time for both of them. Of course, this Sunday was a no-show on the church thang. I slept L-A-T-E. Now, late for me is typically 8ish, but L-A-T-E means I made it to the 9 o'clock hour!

This afternoon, Bob and Sheron Artle stopped by to encourage us and to pray with us. Sheron told me how her aunt spent her final years in a nursing home. Everyday, her aunt prayed for God to take her. Alas, she lived there for 20 years, all the while ministering to people. God had lives for her to touch, and touch them she did. All this to remind us that Chuck and I are ministering to people. As the doctors, nurses, therapists, and techs care for us, we are ministering to them. Yes, we want to go home. However, God's plans are much bigger and grander than any I could come up with.

Thanks for your prayers, encouragement, support, food, emails, phone call, and love!

Saturday, June 02, 2007

Hey! Liz asked a great question, "Why are Chuck's wounds not healing?" The simple answer to that comes from Dr. DeLeon (wound care doc in Dallas). And I quote, "Chuck has the skin of a ninety-year-old anorexic." It is paper thin in areas. Those paper thin areas just happen to be inconveniently over hardware. You know, we really don't know the answer as to how the wouns will close. How can they close? Only God knows.

Friday, June 01, 2007

Wow, two of Chuck's wounds look AMAZING. Seriously, they may be resolved within a month...which is just unbelievable. As for the two that have exposed hardware, well, I try to not focus on them. I try to ignore them as they scare the hooha out of me. There are very few sights that upset me these days. Believe me, I've seen it all. But seeing Chuck's hardware hurts my heart. I just can't bare it. So, I get a look at the "good" wounds and look at the pictures of the scary wounds. What's a girl to do?