Sunday, December 31, 2006

First of all ... Chuck has just been so precious these last few days. His mind seems to be on everyone but himself. Every time he finds out today is Dec. 31, he asks me to call the Kuennings to wish them happy anniversay. (This has happened 8 times thus far).

Okay, so when Lisa (supervising nurse from Baylor Specialty) walked into his room with flowers and goodies, I assumed they were for Chuck. Guess again. They were from Chuck ... for me ... our anniversary is tomorrow. Too precious??? Last week he told her what kind of flower I like (daisies) ... and that our anniversary was on the first. He asked her to take care of me ... can you believe this man???
As much as I would like to claim to be that clever ... the double post was an accident. However, I am leaving it because it's just so funny.

Chuck is doing better. He feels better. He knows where he is, but not how he got here. However, he knows I've told him ... as when he wants a review, he says "Tell me again how I got here." It makes him a bit anxious ... realizing that he does not remember.

Breathing is a bit rapid ... most likely due to all the anxiety he feels over not quite gettting what is happening. Once it slows, they will test him off the ventilator.

Pray for complete healing. Pray Chuck can return home soon.

Saturday, December 30, 2006

Okay, j-tube has been replaced. Dr. Tate came up to the hospital (his day off), and made sure the tube was reinserted sans surgery. I heard him talking to his resident ... he said, "Well, I could have stayed home all weekend and worried about it, or I could come up here and take care of it. That's the price of being an intern." How cool is that? Okay, big thank you to God for Dr. Tate. We love Dr. Tate!

I would like to take this opportunity to clear Chuck's name of pulling out the j-peg. According to the notes from the night nurse ... it may have just fallen out.

The doctor thinks Chuck's memory will return. I did some research on short-term memory loss. One of the leading causes is extremem stress or anxiety. Personally, I think God gives us all kinds of amazing defense mechanisms ... this being one of them. Things got too extreme for Chuck ... alas, he has no recollection of it. Thank you God.

Okay, I am a sick-o, and I accept this. I have been having a little too much fun with the short-term memory thing. We have had the same two conversations today ... over and over. Seriously ... over 30 repeats of the same topics. One of the topics is the amount of tape holding his I.V. in place. I mentioned one of the times that all the tape was to prevent the I.V. cord from dangling. His remark ... yeah, like a participle. No, this was not funny, but he thought it brillant. Well, the next time we had the conversation (5 minutes later) I made the dangling participle comment and he thought it was hilarious. He really got a kick out of it. I did too, but for totally different reasons.

Okay, I also need to give props to Dr. Tate for laughing at Chuck's joke over and over. Yes, Chuck kept making the same joke ... and Dr. Tate pretended it was funny every time.

Chuck is doing well. Thanks for your prayers! Please continue to pray for complete healing ... mindy, body, and spirit.
Okay, j-tube has been replaced. Dr. Tate came up to the hospital (his day off), and made sure the tube was reinserted sans surgery. I heard him talking to his resident ... he said, "Well, I could have stayed home all weekend and worried about it, or I could come up here and take care of it. That's the price of being an intern." How cool is that? Okay, big thank you to God for Dr. Tate. We love Dr. Tate!

I would like to take this opportunity to clear Chuck's name of pulling out the j-peg. According to the notes from the night nurse ... it may have just fallen out.

The doctor thinks Chuck's memory will return. I did some research on short-term memory loss. One of the leading causes is extremem stress or anxiety. Personally, I think God gives us all kinds of amazing defense mechanisms ... this being one of them. Things got too extreme for Chuck ... alas, he has no recollection of it. Thank you God.

Okay, I am a sick-o, and I accept this. I have been having a little too much fun with the short-term memory thing. We have had the same two conversations today ... over and over. Seriously ... over 30 repeats of the same topics. One of the topics is the amount of tape holding his I.V. in place. I mentioned one of the times that all the tape was to prevent the I.V. cord from dangling. His remark ... yeah, like a participle. No, this was not funny, but he thought it brillant. Well, the next time we had the conversation (5 minutes later) I made the dangling participle comment and he thought it was hilarious. He really got a kick out of it. I did too, but for totally different reasons.

Okay, I also need to give props to Dr. Tate for laughing at Chuck's joke over and over. Yes, Chuck kept making the same joke ... and Dr. Tate pretended it was funny every time.

Chuck is doing well. Thanks for your prayers! Please continue to pray for complete healing ... mindy, body, and spirit.
A devotional I saved from earlier in December ... it brings me comfort:

"God will always give what is right to his people who cry to him night and day, and he will not be slow to answer them."Luke 18:7

When we come to God, we make requests; we don't make demands.

We come with high hopes and a humble heart. We state what we want, but we pray for what is right.

And if God gives us the prison of Rome instead of the mission of Spain, we accept it because we know "God will always give what is right to his people.". (Note from Jan: this is what happened to the apostle, Paul.)

We go to him. We bow before him, and we trust in him.
We're still waiting to see the doctor of internal medicine. I have tons o' questions.

This is what I know right now:
  • Chuck's breathing is okay.
  • The pulmonologist has already started weaning Chuck off the vent.
  • It looks like we will be in I.C.U. through the weekend.
  • Chuck's short-term memory is very sketchy right now. I asked the pulmonologist if this could be due to oxygen deprivation. He said no ... and truly, Chuck was never oxygen-deprived for any length of time. As soon as he stopped breathing, he was bagged.
  • Chuck got a little "pull-things-out-happy" last night. First, he pulled out his N.G. tube (from nose to stomach). He cannot stand those things, and I knew it wouldn't last long. However, he also pulled out his j-peg. With the whole short-term-memory loss, he does not remember doing this. Sadly, I've had to tell him over and over what happened, and he gets upset everytime he rediscovers that his j-peg is out ... and will have to be replaced.

Please pray his memory-lapse is short-term. (ha) Please pray the j-peg issue is quickly, and easily resolved. Please pray Chuck is healed and can go home.

Friday, December 29, 2006

First, and most important thing, Chuck is fine ... now. He stopped breathing this morning and was rushed to the E.R. He is fine ... now ... still a bit loopy and out of it, but fine. I was flying in from San Antonio ... completely unaware of any of this. I showed up at Baylor Specialty to find Chuck's bed empty. Moment of panic ... but thank God, Dad was still close. He turned his car around, and quickly drove me to the E.R.

We are now at the I.C.U. at Big Baylor in Truett Tower. I know, I know. Big Baylor is actually four separate towers ... we're in Truett ... in a lovely room, room 414. I will let you know how Chuck progresses.

Let's just pray for the works. Pray he is completely healed. We'd love to go home. Sorry I'm short on info. Hopefully I'll know more in the morning.

Thursday, December 28, 2006

I am actually surviving being away from Chuck. I left him alone this time. He was fine, of course. I cried and cried and cried. I felt so cruel leaving him all alone. Yes, I know, I know ... he's more than capable of handling everything on his own.

We are thrilled to have Dr. Bray for the next MONTH. We typically get a doctor of internal medicine for a two week stint. We have had Dr. Bray twice before and we adore him. It will be a HUGE blessing to have someone we know and trust ... and that knows Chuck's extensive history.

Keep Chuck in your prayers tonight. Oh, who am I kidding! Keep me in your prayers tonight as I miss him like crazy.

Wednesday, December 27, 2006

I receive a couple of daily devotionals ... they help me keep my head and heart straight. One day I received this prayer ... and have prayed it daily since. It's a prayer of faith ... of being sure of what I hope for and certain of what I do not always see:

You are a great God.
Your character is holy.
Your truth is absolute.
Your strength is unending.
Your discipline is fair. . . .

Your provisions are abundant for our needs.
Your light is adequate for our path.
Your grace is sufficient for our sins. . . .

You are never early, never late. . . .
You sent your Son in the fullness of time and will return at the consummation of time.
Your plan is perfect.

Bewildering. Puzzling. Troubling. But perfect.

Tuesday, December 26, 2006

It's official ... we just need the wounds to heal and we are good to go. Chuck's lungs are great. If his blood pressure is taken with the appropriate cuff ... it is okay. Who knew ... if you take his blood pressure with a regular adult cuff ... it can be off by as much as 20 points! It read 91 over 52 with a regular cuff and 124 over 72 with a small adult cuff.

We are awaiting wound care ... anxiously. His back has been hurting ... which worries me. Please continue to pray for wounds to heal ... to heal soon ... we're ready to go home!

I will be traveling to San Antonio tomorrow (with the Coplens). It should be a FUN trip!

Monday, December 25, 2006

Merry Christmas! We are counting our blessings.

The morning began sadly, with the loss of a dear friend's mom. Please remember Letty in your prayers. Such an incredible loss ... our hearts are broken for Letty and her family.

While this is a day of great celebration ... the day our savior was born ... we are feeling the sadness of loss. The loss of a life always brings reminders of the gifts of life ... family, friends, love. Chuck and I are so grateful for the love that has been showered on us. We are thankful that we have each other ... and family and friends who surround us with support and love.

God bless you this Christmas. Hug and kiss on those you adore ... they are gifts from God.

Saturday, December 23, 2006

Okay, here's a little-known fact concerning living in a hospital ... if it's not in the chart, it don't mean diddly. No matter what the doctor says to you, if it's not documented in "the chart," it never happened ... this all leading to the topic of Chuck's pulse-ox toe tag. He still bears it ... because the doctor did not write in the chart that it could come off.

On to the great news ... we moved to a bigger room! We thought we were living large before ... now we feel really spoiled!

Please pray for healing for Chuck.

Friday, December 22, 2006

p.s. I forgot, Chuck get rid of one more tether today. They took his pulse-oxygen sensor off! He has one less tube. Yea!
Chuck's holding steady with the tube feedings, and is slowly adding some food. Dr. Branccacio said the trache is ready to come out ... but we're leaving it in as a safety valve ... in case he goes back to surgery for the hardware issue.

Please pray Chuck's wounds heal.

Thursday, December 21, 2006

This has been a tearful morning. The Moonie family has left Baylor Specialty. I met Mr. Moonie two months ago. His wife started out in the pod; then moved to a regular room; now she's going to assisted living. Mr. Moonie said he'll be taking her home soon. I am so happy for them ... but so sad for me and Chuck. I'm a bit jealous ... when do we get to leave? Why can't we follow that same pattern ... improve, improve, improve?

God sent a QUICK answer to prayer. Last night I was praying for a support group, or someone who could help direct me through this whole care-taker role. I don't know what I'm doing and sometimes I worry that I am harming Chuck rather than helping him ... causing him to become too dependent upon me. WHAMO ... met Betty Wilson this morning. She and I stood out in the hallway laughing and crying about how hard it is to watch the man you love go through all of this. Granted, she's been married to her husband for 54 years, but she says it's not any easier watching him suffer. She is a beautiful woman of faith ... who has had some of the same doubts I have had. I mentioned to Chuck, "Yeah, I've been praying for months that you'd be healed ... but this request God answers overnight? What's up with that?" Whatever is up with it, I am thankful. He must know how much I need guidance!

Wednesday, December 20, 2006

Hmmmm ... Chuck is so listless. It's rough to watch ... sure it's rougher being the one being pumped full of calories ... feeling stuffed 24/7. There is talk of using the T.P.N. again ... feeding through the veins. This malnutrition stuff stinks!

As for wounds, some look BETTER, and some look the same. The plan is to pump Chuck full of calories and to keep him off his back as much as possible. He turns from side to side every 2-3 hours. No back time for the boy. The wound vac may be used later. Right now we are waiting for the dead skin to slough off, and praying that new healthy skin is growing underneath. As the dead skin sloughs, more hardware will be exposed. Using the wound vac right now would pull off too much dead skin ... exposing too much hardware. Please pray Chuck grows beautifully healthy skin pronto.

Tuesday, December 19, 2006

Chuck narrowly escaped receiving a "therapy dog" for a Christmas gift this year. He's been down lately, and I could not help but think that a small, calm dog would do just the trick ... help ease his anxiety, etc. Then I realized it was CHUCK who was anxious ... not me ... and that bringing in a dog to calm him down would be like making me play computer games to calm me down (BIG MISTAKE!) My temporary lapse in judgement was confirmed when a therapy dog actually came to Baylor Specialty for a visit. I was in HEAVEN, Chuck was in HELL. Actually, he smiled a lot when the dog was in the room ... but it was just because I was so elated. Whew ... that was a close one!
Chuck's holding steady. He got very sick to his stomach earlier ... but it was a short-lived episode. Sadly, he threw up his pain medication right after he took it ... the kind he gets every twelve hours.

The respitory therapist removed the oxygen source from Chuck's room. This is waaay cool. They must feel very confident that Chuck is breathing just fine on his own!

Please pray for healing for Chuck's wounds ... miraculous healing ... quick healing ... complete healing.

Monday, December 18, 2006

Okay, wounds are stable. There is no improvement ... yet. However, that the wounds have not declined is a BIG bonus. Please pray for healing for Chuck's wounds.
Morning rounds: Chuck was visited by his internist and his pulmonologist this morning. Both are pleased. The plan for the lungs is more of the same ... trache may come out soon! The plan with the nutrition is to increase his tube feedings to 45 ... with the hope of eventually making it to 50. This leads to wounds. The plan is to treat the exposed hardware with nutrition, wound-care attention, and prayer rather than venturing out for another surgery. Please pray the skin grows over his hardware.

I'll give a wound-care update later in the day.

Sunday, December 17, 2006

Chuck's a super-duper-trooper. The tube feedings are set at a rate that is a little uncomfortable for his stomach. He feels full ALL the time. However, when I asked if he wanted it reduced, he said no. He said he wants to try to make it a few days so that it will help his wounds. Chuck Picciuti is my hero.

Saturday, December 16, 2006

p.s. I get a daily Bible verse and this was today's:
Be glad for all God is planning for you. Be patient in trouble and always be prayerful. (Ephesians 12:12) How perfect is that? It may become the "theme" verse for this whole experience.
Today was a wonderfully full day. Our "camp" crew came to visit today = Brouses, Kuennings, and Davises. We had three four-year-olds (Lindsey, Phoebe, Mason) up to visit Chuck. They brought such a joyous energy. You know Chuck though ... little tolerance for joyous energy! Hannah (10) came as well. She has matured so much ... she is a joy to be around. Needless to say, it was a HUGE blessing to spend time with friends. I miss everyone so much. Chuck and I can't wait to get home!!!!

Chuck's just holding steady right now ... awaiting an improvement in his skin. This is the hard part ... waiting and hoping.

Please pray Chuck's wounds heal. Please pray for something GREAT to happen that will motivate, inspire, and encourage him.

Friday, December 15, 2006

This morning started out GREAT! My cousin, Kam, took me for my first-ever facial. I had no idea what my face had been missing out on! I plan to indulge more frequently.

Chuck's wounds are benefitting from the nutrition. They are not yet improving, but they have stopped declining. Also, the skin around the wounds is looking more healthy.

Guess what fell out today? Just guess. Come on ... yep, j-peg. As soon as I saw it I high-tailed it to the nurses' station, clomping all the way in my fancy new cowboy boots (gift from Chuck). "Quick, j-peg's out. Get a doctor NOW!" (You may remember, the window of opportunity is quite short and I was fully prepared to reinsert the tube myself.) Blessedly, the surgeon came quickly, reinserted the tube, and TAPED it back in. He said it's no use to suture it in, as the sutures just keep popping out. So, Chuck's main source of healing is secured to his body with tape ... I should have known ... you know, the whole wonder of duct tape and all.

Thursday, December 14, 2006

You know how they tell you in school that math is important and you'll use it for the rest of your life? And you know how you blow that off? Well, math rescued my nerves today! It turns out that Chuck is receiving 1,560 calories with the tube feeding! (The dietician brought her handy calculator today. I got confused with the 50mL per hour and the number of calories in 50 mL ... and the whole multiply by 24 ... good grief.) Whew, I feel relieved ... even if Chuck does not eat a thing, he's getting the nourishment he needs. They ran a pre-albumin (protein) test this morning, and Chuck's in the healthy range! Thank you, God. I know Chuck's praising God because now I will stop harassing him about eating.
p.s. I've forgotten to mention the low blood pressure issue. Chuck has orthostatic hypotension ... his blood pressure drops when he sits up for physical therapy ... or any other reason (like an attempted escape from the hospital). We are trying several things. First, he got the compression stockings. That did not work. Now we are trying the pnuematic pressure device (sleeves on the legs that squeeze his legs intermittently). Please include a nice, stable blood pressure in your prayers.
Chuck is slowing getting used to the tube feedings. Temporarily, his oral intake has all but stopped. The tube feedings make him feel full, so we are taking it slowly. With the tube feedings going 24 hours a day, he is getting right at 1000 calories. Thus, he still needs to eat. He takes a couple of bites of food every two to three hours. Hopefully, his body will adjust soon and he'll be able to eat better.

The plan with the wound is to get as much nutrition into Chuck as possible while we "watch" the wound. His skin is too fragile right now to do much with. Pray for healing. Pray God knits Chuck's back together and closes that wound.

Lungs are super duper! We are so thankful.

Wednesday, December 13, 2006

I'm back home with Chuck ... by home I mean "with Chuck." Our home is now Baylor Specialty. He looks fantastic! His spirits seem to have lifted and all is well with the world.

He is still wearing his "military armor." He's been wearing it for months now. This is great because it cuts down on infection and helps with healing. Currently, the plan is to just watch his back. The skin is too fragile to do the wound vac yet ... it could cause more damage than good.

His nutrition is better. His breathing is excellent. He is wearing the red cap over his trache 24 hours a day now. Yippee! Praise God ... praise God ... praise God.

Tuesday, December 12, 2006

Hey! I'm back in San Antonio. I rode back with Shea and Greg after the marathon on Sunday. Greg ran it in 3 hours and 13 minutes ... amazing! Then we rushed back to watch Celis and Kyser in a Christmas play ... too adorable!

The good news is that Chuck's trache may be removed in two weeks. This is beyond fantabulous! Thank you God! So, you can count this as five steps forward.

Now for the four steps back ... Chuck's hardware has been exposed. Yep, the trip was too much on his fragile skin. I keep reminding myself that Dr. D. said the j-peg would be worth it. So, I do not know what this means. I do not know what we will do to address this. I do not know how far back this pushes Chuck's progress. I DO know that God is in control. I DO know that this is the plan and we just have to continue walking this path. I DO know that God is using this to reach people. I DO know that I am heart broken. (Waaaah. Way to end on a positive note!)

Saturday, December 09, 2006

p.s. Greg and Shea just arrived in Dallas. Greg will be running his second of six marathons tomorrow morning.
Alrighty! We're good to go. Surgery went well, and Chuck is back at Baylor Specialty. Nutrition will start flowing soon, and we can all breathe a sigh of relief!

Now ... pray for those wounds to heal! AND thank God for another successful procedure!

Friday, December 08, 2006

Okay, Chuck's on deck for a 10:30 a.m. procedure. Apparently Dr. Tate does not anticipate many accidents tomorrow! This is great for all!!
Chuck will be on-call tomorrow for surgery. The surgeon who will perform the surgery may be able to squeeze Chuck in tomorrow if there are few car wrecks ... funny enough. Seriously, the surgeon is on-call for weekend emergency needs ... so, as long as few emergencies arise, Chuck can get in tomorrow. After midnight Chuck will not be able to eat (not a problem for him) and we wait. If this falls through, then surgery will most likely happen next Wednesday.

Thursday, December 07, 2006

We have no news from the surgeon, yet. He may come see us tomorrow.

Chuck's lungs are doing great! He has started practicing with "the red cap." This is a ... uh, red cap ... that they put over Chuck's trache. He's doing four hours a day. During this time he is breathing normally through his nose and mouth. This is the final step before the trache comes out!

Today was a sick day ... Chuck took in very little food. He threw up most of what he took in. Oi.

Wednesday, December 06, 2006

Status:

Back is ok. There is still a thin ... thin area of tissue over Chuck's hardware. Whew - thank you, God! Talked with Dr. D. and she assures me the j-peg placement is necessary for wound healing. Thus, once we get the green light from Dr. Tate (surgeon), we will make the trek to Big Baylor once more. However, I feel better knowing that it is a must; that no matter what happens in the trip there and back, the j-peg will be worth it in the long run.

Pray the surgery happens this week and that all goes well!
Specifics on Chuck's situation: I think I've left out too much information. Here is what is going on. Chuck's wounds are not doing great. One big reason for this is nutrition. In fact, it's probably the #1 reason. He has tried and tried to consume 2,000 calories each day. He's making some progress and might be up to about 1,500 or so.

Now for the j-peg. The window for that closed one hour after it fell out. We're really not waiting on a window anymore. The whole procedure has to be repeated in order for Chuck to get a new j-peg. The issue is Chuck's back. Going across the street to have j-peg placed is risky for Chuck's back due to the current state of his wounds.

Currently, we are waiting to hear from the surgeon. It's kind of a big deal to go through for just a few hundred calories ... so Chuck and I are discussing alternatives. We have been informed that doing nothing is the most risky thing we can do. A less risky alternative is the j-peg. The least risky alternative is a nose tube (Chuck would cut off his hand before doing that. He'd cut off my hand before doing that.) Oi. The deal is, this whole nutrition thing may be short term ... his eating is picking up, he's getting stronger. We just don't know what we're gonna do.
Chuck will not be having surgery today. The issue is not Chuck's health or anything ... he's fine. It has to do with scheduling.

We are awaiting a damage report from wound care as Chuck spent four hours on a gurney yesterday. If his back took too much of a beating, we may have missed our opportunity for a j-peg. Please pray Chuck's back is alright AND that somehow, some way he can get the nurtrition he needs in order to heal (like by eating or something crazy like that).

Tuesday, December 05, 2006

Long story short ... no surgery. The long version is much more interesting, but I'm too worn out to detail it. Perhaps another time.

We'll try again tomorrow. Please pray for Chuck's wounds and for a flawless surgery.
The surgery is at 1:30 today. Remember the last surgery? It was waaay better than could have been anticipated ... please pray for similar results. Pray that the wait time is SHORT so that NO damage is done to Chuck's back. Pray that the surgery goes flawlessly and that Chuck heals quickly.

OK ... late-breaking news. The doctor just came in with concerns. In the last 24 hours Chuck's blood pressure has dropped significantly and his heart rate has increased. If this continues, the surgery will be cancelled as Chuck needs to be stable.
The surgery is today. The procedure should be quick and simple. It's Chuck's back that is the concern. Right now his wound is soft and open ... so moving him is not the best of ideas. However, it is necessary. Please pray that no hardware is exposed during this move!

Monday, December 04, 2006

Chuck's blood test came out great! His carbon dioxide level is no longer an issue, and the ventilator has been removed from his room!!!

We still do not know when the j-peg procedure will be done ... the sooner the better. Hopefully, tomorrow's the big day. I'll keep you posted.

Thanks for your continued prayers. Truly, Chuck has overcome so many obstacles ... he's come so far!

Saturday, December 02, 2006

All is well. Chuck has been steadily eating today and he looks really good! Please pray for nutrition. As his sister, Christy, mentioned, pray that his Picciuti genes kick in soon.

Friday, December 01, 2006

Chuck has decided to get another j-peg. He gave it all he had ... tried to eat, but just could not do it. Please pray that the trip to big Baylor and the surgery do not cause damage to his wounds. Pray, pray, pray! The surgery will take place either Monday or Tuesday.

Chuck's lungs are doing great. He gets to stay off the ventilator this weekend. He'll get a new blood gas on Monday. If it looks good (not too much carbon dioxide) then he may not have to go back on the ventilator!