Monday, April 30, 2007

The lovely and talented Brooke Dorman has volunteered to organize meals. If you are interested in preparing a gluten-free meal, please contact Brooke at

As for my diet, I cannot have anything with wheat...or anything that has touched wheat. For example, I cannot have the patty out of a burger because it has touched the bun. Talk about strict! I can have corn, rice, potatoes, fresh meats (with no sauces and no processed meats), vegetables (with no sauces), butter. If you make a rice dish, check the bag because sometimes the rice was processed in a place where wheat has been processed. Your safest bets are things like pot roast (no gravy), chicken breasts, salads (no dressings), rice and beans. Brooke found these websites for more gluten-free ideas:

Thanks in advance!!!
Dr. Bell, Chuck's main doctor, came to update me this morning. Chuck looks good! He wants to move him to a long term accute care place, much like Baylor Specialty. Chuck will most likely be moved this week. The case manager will come meet with me later, to let me know what places are available. I want to go check them out before chosing one.
I have a meal organizer! I'll get back to you with details.

And now,back to our original programming; Chuck is on the ventilator full-time. They tried t-bar trials yesterday, but he was not able to tolerate it. He had difficulty catching his breath last night, but all is well now.

His wounds look worrisome. I barely tolerate "stable." Seeing them decline is very upsetting, because it takes soooo long to repair damage.

Today is my last day full day at the hospital. Tomorrow work begins. My goal will be to stay in the moment...stay in the day so that I am not overwhelmed.

Sunday, April 29, 2007

I'm looking for someone, not just anyone, to help me out. I'm looking for someone with the gift of organization who would like to use that gift as a blessing to me. Here's the deal, I need help with dinners. I will be going from work to the hospital and do not want (nor does my body need) to rely on fast food. Sounds simple, but there's more...I cannot have wheat (found in sauces, soups, canned and processed meats). Once I have a volunteer to organize food, I'll be asking the rest of you to feed me! I'll also give you a list of foods outlawed by my "food allergen" and put you in contact with my master planner.
p.s. I'm phoneless today! I forgot it at home.
Chuck is still sleeping, sleeping, sleeping. Tod came up this morning so I could go to church. My poor soul is's been rare that I've gone to church this past year. If you ever get the bright idea that you can survive without worshipping with a body of believers as long as you are in contact with believers, listen to sermons on the radio, listen to Christian music, and read your Bible, think AGAIN. If you're like me though, you know best and you do not need anyone's advice.

I've been having a hard time with God's grace. I still feel the need to earn his love. The deal is that I've dumped God as of late since everything has been going my way. Though I ask you to pray for Chuck, I've stopped. So, when things got crazy on Friday with Chuck going to I.C.U., I had a terrible guilt/shame attack. How in the world can I ask God for blessings after being such a jerk??? (Note, this is one of Satan's BEST plans of attack = shame and guilt. He whispers that you cannot go to God after what you've done, thus keeping you away from God). Yep, after all this time, I still think I have to earn his ear, earn his blessings, earn his consideration. I had been soooo unfaithful! (Note, I am short on humility...and accepting God's love without earning it is a BIG obstacle.) Alas, I know truth, I know how it works and I'm in awe that I can go to God and ask. I can go and he's waiting with open arms and no condemnation. And now for swallowing that big lump o' pride and accepting his love.

Saturday, April 28, 2007

Chuck is resting comfortably. He's been sleeping pretty solid since Wednesday. Poor thing...the trip really took it out of him.

For those of you hoping to visit, the I.C.U. allows 2 visitors at a time. From 6:30-8:30 a.m. and p.m., the I.C.U. is closed to visitors. Chuck is in the South Tower, Cardiac Intensive Care Unit, 7th floor, room 778.

Thanks for your prayers and warm wishes upon arriving home.

Oh, and we miss you all at Baylor Specialty! Hope you all are doing well. I feel so out of place here. Who'd a thunk, I feel out of place now that we're home! I know, it will just take time.

Friday, April 27, 2007

Chuck is stable and doing beautifully. He will spend the weekend in I.C.U. as patients are rarely moved on the weekend. This will be good because he'll be watched carefully.

Thank you for your prayers. I praise God for friends and family who rallied to support me. My sister Shea wins the "best advice" award however. Upon seeing me she said, "Stand up straight, Jan. You're slouching. Oh, and zip your pants." Ahhh, Shea, what would I do without her????
Chuck is fine. He's been moved to I.C.U. because his heart rate dropped while being repositioned and suctioned (not the first time this has happened in is illustrious career, nevertheless upsetting). He most likely had a mucus plug. Please pray for strength and healing.

Thursday, April 26, 2007

Everything is under way! I'm sorry this will be short on details. I'm home for a moment (yippee) and then will head back up to the hospital.

I adore wound care here. (sigh of relief) I like his pulmonologist, who I happened to recognize as a fellow runner. Long story...later. I shamefully ran off his first nurse this morning. (Is it shamefully or shamelessly??? I felt sorry to upset her, but glad to get a new nurse.) It was a rocky start, but I feel really good about where he is and the care he will receive.

Details to come. God bless you all. Thanks for the messages from yesterday. Thanks so much for praying for our journey.

Wednesday, April 25, 2007

We're here. We're glad. We're exhaused. Chuck's in room 714 of Central Tower. No visitors til Saturday, please.
Okay, I wish you could see Chuck and me this morning. We're both so nervous and anxious. Chuck woke up I know something's up with him. I'm running around (with my hair on fire} making sure we have everything, covered all the bases, asked all the questions. I need to remember to just breathe, do the next thing, and let God handle all the rest.

Wound care is coming any minute for Chuck's final dressing change. Then we wait. Oi. Please pray that I let God be God and release my desire to control this whole move. Breathe in, breathe out....

Again, thanks everyone. We love you so much. We could NOT have made it without your support, words of encouragement, prayers, shoulders to lean on, arms to hold us, homes to live in, hotel rooms to sleep in, meals to eat, and ears to listen.

I won't be able to post until tonight, from my HOME.

Tuesday, April 24, 2007

It has been a thrilling day! We've said goodbye to Dr. Brancaccio...we'll miss him! He and Dr. DeLeon have been with us for nine months...that's long enough to grow a baby for heaven's sakes. I've been packing and "donating" things to the hospital...dry-erase markers, etc. Chuck, true to the end, shrugs everytime someone ask if he's leaving tomorrow.

Dr. DeLeon told me that I've chosen excellent doctors. She feels really good about the wound care team at Methodist. That Dr. D has been GREAT! She's been good to Chuck AND to me. This is the warning she good-naturedly passed on to our new wound care doctor. "Jan feels like she's fighting for Chuck's life. If you get in her way, she'll hurt you." It's rare that my mother's bold personality peaks out from my meek self. But if that's not Hester Sue in the flesh, I don't know what is.

Dr. Brancaccio feels really good about the pulmonologist we've selected. He spoke with Dr. Bell on the phone and relayed the past nine months to him. Adora (our WONDERFUL ostomy nurse) says that Methodist has a great group of ostomy nurses. I believe we'll be in very capable hands.

We leave tomorrow at 10 a.m. The trip should take 6-7 hours. Thanks so much to all of you who have made this possible. Just look at what you've done! Just look!!!!

Monday, April 23, 2007

I keep trying to celebrate "the last ______," but Chuck has forbidden it. He has reminded me that there are no guarantees. Have I learned nothing these past 11 months???? If God wills it, we will be leaving Baylor Specialty on Wednesday.

As for visitors, we ask that you give us a few days to recoup from the trip and to wrap up assessments with his new doctors. Saturday should be a good day to start. Know this before you make the trip, Chuck greatly appreciates 10 minute visits. No more, but maybe less! If he wants you to stay longer, he'll let you know. Please limit visitors to two at a time. You may want to call me before coming up. There will be times when Chuck needs a rest from visitors.

Even if God wants us to wait past Wednesday, this is a joyous time of celebration. Just look what God has done!! Just look how faithful he has been. Just look!!! To God be the glory, great things he hath done.

Saturday, April 21, 2007

Chuck is looking good. Seems like methadone is just too much for him...he took the smallest dose available and it still knocked him out. We'll see how he handles withdrawal...he may not need the methodone. The methadone is supposed to alleviate most of the issues with coming off dilaudid. Pray for his comfort during this time.

I feel crazy for writing this...for feeling this, but I'm gonna miss this place. I'm going to miss the life we've created here. I took my last Saturday morning run down Swiss Avenue. It was a feast for the senses...beautiful, historic homes with gorgeous gardens to boot. The smells, the gentle was just perfect. I'm really sad...really, really sad.

Friday, April 20, 2007

Things are really coming together. Looks like Wednesday, 10 am, we're outta here! Chuck's doing excellent. He's had no nausea; his lungs are stable; his wounds are healing. The only glitch is weaning him off of high doses of pain medication. The goal is for him to be completely off IV meds by Wednesday. He'll still be on pain medication, but will have to wait the 30 minutes for the oral meds to kick in (no immediate relief through the vein). Right now he's on methadone...too much of it! The doctor is still working with the dosage. However, for the first time in YEARS, Chuck is feeling no pain. In fact, I keep asking him what his pain level is just so I can hear him say, "Low, low, low."

Just look at what God's done!

Thursday, April 19, 2007

Discharge date is Wednesday, April 25!!!! We will go by ambulance to Methodist hospital in San Antonio. Please begin praying for a smooth and painless trip (for Chuck AND for me!) We are so excited we can barely contain ourselves! I haven't seen Chuck this chipper in a long, long time. On second thought, I don't think I've ever seen Chuck chipper...this is a FIRST.

Thank you all for your prayers this year. Part of Chuck's recovery can certainly be attributed to the excellent care he has received from the skilled doctors, nurses, and therapists. However, a BIG part of his recovery has been sheer miracle...the power of prayer.

I'll keep you posted as we spend these last few days here at Baylor Specialty.

Wednesday, April 18, 2007

We are ironing out the details of getting Chuck home. We've decided to transfer to a facility before coming to our home. I have few details for now: we are going to San Antonio next week by ambulance...that's about all I have. We're thrilled and relieved to be going to San Antonio...and to be going to a place where Chuck can get a little stronger before the leap home.

Tuesday, April 17, 2007

I'm home early!!! I was able to wrap up my work early...especially upon getting the news that Chuck will go home at the end of next week! Yep, you read right. He's going home.

Monday, April 16, 2007

Greg finished the Boston Marathon in an amazing 2 hours and 58 minutes! Despite the weather, he beat his top time. Now that's an appropriate finish for his Fix Up Chuck tribute.
Looks like Greg will have a rough run today! Check out the article below! Keep him in your prayers.

Boston Marathon runners brace for storm
Participants expected to race in heavy rain, strong winds

Updated: 3:03 p.m. CT April 15, 2007
Peter Gilmore often runs alongside the San Francisco Bay, where sharp winds constantly annoy him. The wind knocks him off balance, chills his ears and saps his energy by forcing him to fight extra resistance. It might be the worst part, Gilmore said, about living in northern California.

Now, on the brink of the 111th Boston Marathon, Gilmore's windy runs look like a brilliant training strategy.

Participants anticipate the worst weather in the history of the world's oldest continuous marathon when the race begins tomorrow at 10 a.m. Forecasters predict heavy rain, 20 mph winds and temperatures around 40 degrees. Race officials expect to treat many cases of hypothermia among the 23,000 participants. Elite runners, including Gilmore, expect a drastically altered race for the $100,000 first-place prize.

To sustain energy against the wind, the best runners will likely pack together for as long as the first 20 miles. Men's defending champion Robert Cheruiyot -- a Kenyan who set a men's record last year in 2 hours 7 minutes 14 seconds -- expects to run a few minutes slower than usual. Women's defending champion Rita Jeptoo will try to become the eighth Kenyan woman to win in the last nine years.

"When the weather is going to be like this, you just forget about aiming for a time and try to think about the strategy of the race," said Gilmore, who finished seventh last year. "I'm going to watch who's ahead of me. I'm going to figure out who's doing what. I'm not going to pay much attention to my watch."

Gilmore has become something of a Boston Marathon specialist, finishing in the top 10 in each of the last two years. He's an expert at running well on downhill stretches, and Boston has a lot of those. His compact build -- 5 feet 9, 140 pounds -- helps him stay low to the ground against the wind. Because the entire Boston course runs in one direction, Gilmore said he expects to run against strong winds for all 26.2 miles.

The top runner from the United States in this year's field, Gilmore will shoulder the burden of America's 23-year drought in the race. Last year, five American runners placed in the top 10, a breakthrough performance that has forced elite runners to consider Gilmore as a threat Monday.

"I try not to think about all that," Gilmore said. "Right now, my goal is just to do better than I did last year. I want to improve my finishing place every time I'm here."

American women also spend the days before each major U.S. marathon talking wistfully about a breakthrough performance. No American woman has won in Boston since 1985, but Deena Kastor, from California, has the ability to end that streak. Kastor earned a bronze medal at the 2004 Olympics and won the London Marathon in 2006. She entered the New York Marathon as the favorite to win in November -- and then finished a disappointing sixth.

In Boston, she'll face perhaps the greatest field in the race's history. Top-ranked runners Jeptoo and Latvia's Jelena Prokopcuka lead a group of 20 world-class women.

"All the runners will stay together," Prokopcuka said. "With the wind in our face it will be very difficult. I like to run in the cold, but the rain is not so good for the muscles."

Said Kastor: "With this field it will be a battle every step of the way. . . . I feel like I can run an aggressive race right now. I've run in adverse conditions before."

Saturday, April 14, 2007

This day has been full of lessons. I learned how to suction Chuck, and how to give him a breathing treatment. I also got an overview for how to work the vent. That went right over my head. I'll need MUCH more instruction before going home.

When the surgeon came to suture Chuck's feeding tube, I asked what I should do once we are home...since it comes out so frequently. Should I take him to the ER? The surgeon said I should learn how to suture it in...which I've been contemplating secretly! He talked me through it. Because the tube requires a great deal of support, he sutured it in four places...thus I got to watch four times. Now, if Chuck had feeling in his abdomen, he would NEVER let me do it. I would NEVER want to try it! However, we both feel prepared should it pop out at home!

I think we are both excited about me learning how to handle things from home. I was kept very busy today...I put on my respiratory hat, my nurse hat, my tech hat, and my surgical assistant hat. It was fun!
Greg left Friday morning for Boston! Monday he will run the SIXTH of his SIX marathons! Whew, and I thought I was tired. It seems that weather is giving them fits in the Northeast. Shea mentioned they were considering cancelling the event. Blessedly, there may be a break in the heavy rains on Monday. It certainly will not be pleasant weather, but no torrential downpours. Keep Greg in your prayers as he runs THE BOSTON MARATHON.
We made it another week. Just one more to go! Neither of us does great when apart. Alas, Chuck seems to decline. Reports from my spies: he doesn't sleep well, he's listless, he's completely depressed. Oi! It tears my heart out.

On the health front, he's stable. His wounds are continuing to improve. His feeding tube popped out again and we are awaiting the surgeon to suture it back in place. He still uses the vent off and on. I am learning how to operate it since it will be coming home with us. Today I did my first suction. I've watched the respiratory team do it over and over for almost a year. Yet watching and doing are two totally different beasts! To suction, I pushed a thin tube down Chuck's trach and into his lungs. Then I pushed the vac button and suctioned out all the gunk. Before I did it, he looked at me trustingly and mouthed "Good luck." The first time was the scariest. I've done it five times this morning...I feel much more confident. I can do this!

Please pray for Chuck's spirits. He's tired and low.

Tuesday, April 10, 2007

I'm off to Florida for two weeks. I'll be back to Dallas over the weekend though. Whew, I'm trying to catch my breath. So, God's timing is perfect is it?? Yes, yes, I'm sure it will all make sense later. I'm just trusting this is the way it's supposed to play out.

Please pray for nerves of steel as we begin to prepare for life at home. Mom and Dad are coming to help us adjust. Whew. I need to remember to "just do the next thing."

Please pray for healing. Thanks!

Monday, April 09, 2007

As quickly as I fretted, God brought the form of Dr. Brancaccio. He thinks it will be no biggie for Chuck to go home with a portable ventilator. Further, he thinks it is perfectly safe for Chuck to make the trip to San Antonio. It is rare that Chuck needs a vent during the day. It will be used for if the occasion arises.

We are elated...and terrified. Yippee and yikes! Thank you for your prayers. Please continue to pray for healing!
Chuck is looking good. Wound care came this morning. They are very pleased with the way his wounds are progressing!

Chuck sat up today...not in his chair...but sat up nonetheless! He held himself upright for about 10 minutes...that's sorta like running 10 miles to you and me.

He is still using the ventilator at night. I am starting to get anxious about this. If he can't come off the ventilator, he won't be able to come to San Antonio...yet. Please pray he can be weaned completely...and also for a peace with the way God handles this. I know it won't be the end of the world...but I have a hard time accepting anything other than WHAT I WANT. I want Chuck to come to San Antonio.

Sunday, April 08, 2007

Chuck has had a good breathing day! His feeding tube popped out once more. Someone (not our beloved Dr. Tate) sutured it in...but looks like it may only last a day or so. Ahhh, the weekend! Aside from that, Chuck's doing really well. I'll have more specifics once I meet with his doctors tomorrow.
Happy Easter! Christ is risen...and is walking around downtown Dallas...patroning the Starbucks. This morning I went in to get some coffee and met a very friendly man. He was all spiffied up for Easter service at his church. I had a large order (an Easter treat for Chuck's nurses), so we had to wait a while. He asked if I was having a party or something. This led to Chuck's situation. Before long, he asked if he could pray with me, then he took his coffee and left. A moment later, he returned with a business card. Hidden under the card was $100.00! He left before I could thank him. I just sat there crying, feeling overwhelmingly blessed and loved by God. He is risen...alive and well...and living in those who have made him welcome in their hearts. Praise God.

Saturday, April 07, 2007

Chuck is certainly a sight for sore eyes. We have a few days' reprieve before we are separated again. He looks worn out...but good. More's waaaay past my bedtime!

Thursday, April 05, 2007

Update from Dr. DeMoya: Chuck is doing great! The dressing change made to his wound (on Monday) has stopped the leaking. The wounds on his back are looking really good. His tube feedings have been going full-throttle with little to no nausea. Also, there is no intestinal obstruction nor ileus (section of intestine that is not working). Finally, his cultures are infection free!

Chuck is using the ventilator a little at night. He is expected to be discharged...if all goes well...the end of April or beginning of May. Please pray for continued healing.

Tuesday, April 03, 2007

I'm looking for a brilliant pulmonologist in San Antonio. Do any of you out there have any suggestions? You can email me at

Word from Dallas is that Chuck is doing well. Apparently his wounds are doing GREAT! The mystery leak was most likely from one of his wounds...his dressing for that wound has been switched to something more suitable. We'll see what happens.

On the San Antonio front, it is great to be home! I grilled yesterday...the first time in about a year. For those who do not know, I'm a bit of a grill-aholic. Also, a trip to the dentist unveiled that I have been grinding my teeth in my sleep. I had no idea...never done it before. Hopefully it will cease once things calm down.

Please keep Chuck in your prayers.

Sunday, April 01, 2007

Chuck and I are about to embark on a three-week-adventure. We will be separated for big chunks of time for the next three weeks. As God would have it, there are some new issues that have popped up over the weekend. While Chuck will be in good hands, it makes us both a bit anxious to be apart while "research" is being done on him. New issues = mystery leak, ileus (lazy section of intestine NOT doing its job), and a general feeling of yuckiness. Sigh.

Chuck will be in charge of his care for the next three weeks! This is a great thing. Please pray for his endurance! Please pray for attentive and gentle nurses and techs. Please pray the doctors get to the bottom of his mystery leak. Please pray for healing and a feeling of well-being!