Wednesday, November 29, 2006

Update on lungs: Chuck has been off the ventilator all day, every day for two weeks now. He goes back on the ventilator three nights a week. His lungs are growing stronger!

The ear-nose-throat doc came yesterday to take a look at his throat. All looks good. In order for Chuck's voice to be louder, his lungs must be stronger. It's basically an issue of air ... yep, Chuck needs more hot air!

Wounds are stable. The nutrition thing is a bit sketchy ... but Chuck is working really hard to eat enough! Please pray for nutritional needs to be met so wounds can heal!

Oh ... and physical therapy has resumed (yea!)

Monday, November 27, 2006

Much like the contentious Little Bunny Foo Foo, Chuck has been given three more chances. The good fairy is granting Chuck three days to prove he can consume enough calories without any j-peg support. He's giving it all he's got! Every thirty minutes he takes a sip of Ensure ... every thirty minutes. Pray Chuck gets a happy ending!

Sunday, November 26, 2006

A funny thing happened ... not funny (ha ha), but funny (you have got to be kidding me!) Chuck's j-peg (the tube that goes into the intestine) came out. It came out and none of us noticed. It came out and was out long enough that the entry hole closed. Thus, no j-peg. Thus, no nutrition. In time, we wanted the j-peg out. Talk about a big, hard shove outta the nest! If Chuck is to get nutrition now ... it must be done the old-fashioned way. Oy. There is talk that he might not be able to get the nutrition he needs without the peg. This means another surgical procedure.

Pray Chuck can eat. Pray Chuck will eat. Pray Chuck will keep down the food he eats. Pray Chuck's body just absorbs nutrients ... from thin air if necessary!

Stacie is coming tomorrow to protect Chuck. It would really be a shame for him to have come so far ... just to be strangled by his wife in the end. Seriously, she's coming to give me some moral support. I've reached the point of diminishing returns. The more I stay with Chuck, the less of an impact I have ... well, less of a positive impact. Yet I lack the wherewithal to just leave. (Talk about over protective / codependent!)

You know, things really are pretty great. Chuck's body is stronger, his lungs continue to improve, and he has no infections! Nutrition schmutrition. Wounds schmounds. In all this, I praise God for his perfect plan.
I've been asking for prayers for Chuck's health ... it's time to pray that he survives ME. I just might strangle him if does not get better. He's doing the best he can. He feels miserable, yet he tries to please me (too sweet!) He tries to eat small portions ... only to throw them back up. I have this sick drive to keep pushing him ... I will not rest until he is well ... alas, I'm tired! So in my mind, he'd better step it up so we can get some rest. Fair? Not at all.

Today at chapel, the chaplain talked about self care ... for those of us looking after loved ones. "You cannot fill someone else's cup if yours is empty." Mine's bone dry. Thankfully, I have a trip home this week.

Pray for me ... that I know when to push and that I know when to gently comfort. I just might get myself arrested for assault with a high-protein drink, "Ma'am, step away from the Ensure."

Saturday, November 25, 2006

Chuck thinks he has a bug ... whatever the case, today is day three with no eating. Well, that's misleading. He is consuming about 200 calories a day. In any case, his tube feeds have been increased from 30 ml/hr to 60 ml/ hr.

That's about it. We have rented The DaVinci Code ... it's exciting now that all the movies we missed this summer are coming out on DVD!

Friday, November 24, 2006

Chuck's back on tube feeds for 24 hour periods. He has not eaten in two days ... and there ain't nothing good about that. He had been getting tube feeds at night only ... and was inches away from being done with tube feeds and the j-peg completely. Oy.

We were hoping that Chuck could stay off the vent for the weekend, but his blood gas came back with his carbon dioxide too high. Thus, Chuck goes on the vent Friday, Saturday, and Sunday nights.

Finally, Chuck's physical therapy has been put on hold. He's been getting very light-headed, and his blood pressure plummets during p.t.

As you can tell, Chuck's body is in a slump. Please pray his nutrition and everything levels out.

Thursday, November 23, 2006

Happy Thanksgiving! I praise God for the past 6 months ... so many blessings, so many lessons, so much love!

Tuesday, November 21, 2006

Chuck's pre-albumin (protein level) was tested this morning. That stinker ... wouldn't you know it, his score came back 32.6 (normal being 20-40). I'm very happy for him ... but now I can't insist that he eat because he can just give me the ol' "Uh, my level is fine" spiel ... and he'll be right!

Despite the fact that the docs would like Chuck to stay, the care coordinator believes he will be leaving soon. Chuck no longer qualifies for specialty hospital status (this is good). He has no i.v.s; he has no infections; he's relatively healthy (all good!) The push out of the nest is coming from the insurance company. Here's the crazy thing, there is NO, as in ZERO, skilled nursing facilities in Dallas that accept ventilator patients. The closest one is in Celina (north of Denton ... in the middle of nowhere). So, we're contemplating coming back to San Antonio.

Please be praying ... I know we will wind up in the right place at the right time. Pray Chuck's wounds heal, that his nutrition improves (yeah, yeah pre-albumin schme-albumin), and that we feel peace about the next move.
We are staying put for a while (thank you, God). Actually, it's a mixed blessing. Chuck still needs ventilator support every now and again. Also, his wounds are in a state of decline. Thus, we stay at Baylor Specialty (which thrills me!) The only thing better would be going HOME ... with a short stint at Baylor Institute for Rehabilitation.

The reason the wounds are in decline has a lot to do with Chuck's nutrition. Please pray he feels hungry. The boy just won't eat unless he's hungry. For me, this is a foreign concept! Alas, he just will not do it (I could take a lesson from the man). However, he really needs protein in order for his wounds to heal.

Hope you all are well! I'm looking forward to Thanksgiving ... so much to be thankful for!

Monday, November 20, 2006

We had a lovely, relaxed weekend. I would like to attribute the pleasantness of the weekend to my new electric blanket. You see, every Friday and Saturday night, I stay with Chuck. Upon sleeping in the arctic cold (which Chuck LOVES) I wake up with a bit of a back ache. It wasn't until I got an electric blanket that I realized the back ache was from the constant shivering! Saturday I woke up to blessed warmth and to relaxed muscles!

Saturday night I went to a harvest party at my cousin Kam's. Let me tell you, Kam is a GREAT hostess. Not only does she throw a great party, her wife, Teri is a chef. It was one of the BEST Thanksgiving spreads I've ever had. In addition, I got to see Kam's mom, Patty. I've always admired her! Patty's husband, Terry was there and I really enjoyed visiting with him. It's always a pleasure to spend time with people from HOME (Spearman ... God's land ... the Panhandle).

We will hear from Dr. DeLeon today ... regarding Chuck's move. She'll give the thumbs up or down. I'll let you know!

Saturday, November 18, 2006

Hmmm, the latest and greatest involves another move. We are awaiting an O.K. from Dr. DeLeon concerning moving to a skilled nursing facility ... or SNF (sniff). Chuck is doing great, but is not ready for the minimum requirement of three hours of physical activity. He's too involved to come home to get stronger (wounds, trach/ventilator issues). Thus, a SNF is the answer until he's strong enough for rehab. Please pray Chuck gets stronger soon!

Chuck's wounds are giving him some grief ... especially his pressure sore. Please pray they heal!

Thursday, November 16, 2006

Ross sent me an update on the Fix Up Chuck website. You have donated $6, 110 through Fix Up Chuck.

Thank you so much for the financial support. Please know, you have taken excellent care of us. Our needs right now involve prayer and encouragement: Pray Chuck's wounds heal; pray he can go to rehab soon; pray for protection while at rehab; pray Chuck can have the trach removed. Now go watch Greg run a marathon; go visit Fix Up Chuck and post something for Chuck; go buy some Fix Up Chuck gear (because Chuck gets such a kick out of the stuff!)

Thanks for taking care of us! We feel so blessed.

Wednesday, November 15, 2006

Wounds are looking better! Nothing new to report.
Thanksgiving is just around the corner. This year the holiday feels very different. It feels like Thursday ... not a day set aside to be thankful. At first, this made me sad. Then I realized ... it's because everyday has become Thanksgiving for me. Truly. Everyday I spend time with my loved ones. Everyday I note my blessings ... they are impossible to miss. Here's just a sampling of what my life has been like the last six months:
  • My company has gone out of its way to ensure that I can keep my job ... even from afar.
  • Because my company has gone out of its way, my team members have gone out of there way to pick up my slack!
  • Through Fix Up Chuck, people have donated close to 3,000 dollars.
  • Our church family raised almost 8,000 dollars for us. ( Makes me feel very George Bailey in "It's a Wonderful Life.")
  • I have a comfy bed, excellent company, and great cooking thanks to Mom and Dad.
  • My brother-in-law, Greg, is out running marathons to raise money for Chuck.
  • Then there's Chuck ... every day with him is a gift from God.

Tuesday, November 14, 2006

Chuck has made it 24 hours off the ventilator! He is still receiving 1/2 liter of oxygen, but is slowly being weaned to room oxygen. He's getting closer to vent free living.

Nothing much to report ... guess that's good!

Monday, November 13, 2006

Chuck is doing well. The wound along his incision is stable. It continues to improve daily ... but oh so slowly. There is a new spot on his back that is being watched closely. It most likely developed during the fitting of his new brace ... it takes so little to cause damage to his skin! Please pray this area heals quickly. In addition, his pressure sore is rearing its ugly head again. He is now allowed only 15 minutes for meals. Previously he was allowed to sit up 30 minutes. Alas, this is a tiny step backwards. Due to such issues, wound care thinks Chuck is at high risk for skin breakdown were he to go to rehab. So, he'll most likely stay at Baylor Specialty for several more weeks. Please pray for healing!

Sunday, November 12, 2006

Today is an ode to my parents.

It is my 36th birthday!! Several years ago, my dad started a great tradition. He calls me on my birthday and tells me the story of the day I was born. There was a snow storm and the wind was fierce (Panhandle fierce). (This is the theory behind why I'm always sooo cold.) Several hours into the delivery, the doctor came out to tell my dad there was a problem; I would drown if he proceeded with the delivery. Dr. Waide needed to push me up, flip me around, then pull me back out. (Easy for him to say!) Then voila: my parents had a very flat-faced baby!

When I was 16 (20 years ago!!!), my mom gave me a Bible. This is the dedication she wrote:
Go on your way in peace.
Be of good courage.
Hold fast that which is good.
Render to no man evil for evil.
Strengthen the fainthearted.
Support the weak.
Help the sick and cheer them.
Honor all men.
Love and serve the Lord.
May the blessings of God be upon you and remain with you forever.

My mother has been gone for 15 years now. I rediscovered this old Bible just this summer. It's wonderfully mysterious how my mother knew lo those many years ago how her charge would encourage and uphold me in the years to come.

Saturday, November 11, 2006

Chuck is looking really good. He sustained a full day of celebration. My birthday is tomorrow ... however we celebrated it today. The celebration began this morning around 11:00 and wrapped up this evening around 8:00. Granted, Chuck slept through most of it, but family and friends came and went all day. He did very well and I had a blast! Thank you for a lovely day Tony, Heather, Christy, Jonah, Lindsey, Matthew, Mom, Dad, Tod and Nicole!

Friday, November 10, 2006

Looking good! Nothing much is new. Chuck's central line has been pulled, which is a huge step toward leaving the hospital. His wounds are looking stable. He's been fitted for a new brace. He is spending more and more time off the ventilator. Whew ... thank you, God.

Thursday, November 09, 2006

Okay, the word around Baylor Specialty is that Chuck Picciuti may go to rehab next week!!! Can you believe it? Please pray everything falls into place.

Please pray a special blessing on Chuck as he is experiencing a great deal of physical discomfort. He is transitioning off pain medication, and things will get very uncomfortable before they get better. Pray he finds peace as he pushes through this next week or so. He's been so brave and so strong ... wish there were an easier way.

Wednesday, November 08, 2006

I'm back in San Antonio today. Stacie has faithfully made the trip, once again, to keep watch over Chuck. She has been such a blessing!

Nothing new to report ... Chuck's wounds are healing (yea); he spends most of the day off the ventilator (yea); and his body is getting stronger (yea)!

Tuesday, November 07, 2006

Two of our FAVORITE people came to visit us today. Paul Will-do Wilson and Michael Vonderha-ha-har brought great levity and great joy with them. It has been over five months since we've seen them ... since we've been with our church family. Not only did they delight us with their presence ... they brought presents! Our wonderful church family made a special donation ... to let us know they care. Wowwie, wow do we feel the love! God has been good to us ... to give us such support ... to give us such friends. Thanks Cibolo Creek! We love you so much. Truly, your gift is overwhelming ... your are amazingly generous. Thanks for sacrificing for us. Thanks for praying for us. Thanks for loving us. We cannot wait to get home so we can thank you in person!


Monday, November 06, 2006

On the wound care front, Chuck's back looks fantastic. However, his pressure sore looks questionable. Adjustments are being made in physical therapy to help with the pressure issue. Please pray Chuck is able to sit up and do therapy without compromising his skin.

He's working hard to get off the vent. Please pray toward this end.

Nausea is gone and appetite has returned ... praise God!

Sunday, November 05, 2006

And now back to Chuck:

Lots o' activity during the night ... as a result of yesterday's illness. I know many of you know what it's like to be full of apprehension and questions, waiting 12 hours for 5 minutes of the doctor's time. And then the concerns turn out to be nothing of any consequence. So this morning I was PLEASANTLY suprised when the charge nurse came in, sat with me for about 15 minutes and discussed what's going on with Chuck ... HUGE blessing. Ya see, he was puking up black stuff yesterday. As has become my way ... I rushed to the nurse ... what's up with the black puke?? She assured me it was bile and stomache acid ... or what the rest of the staff refers to as BLOOD. Now the words of my mentor rushed in to save me from another bout of "Jan ... what were you thinking? How could you let this happen to Chuck???" She always told me, "You can't know what you don't know."

Good news, if Chuck is indeed bleeding somewhere, it's a slow leak. He's been x-rayed and tested to rule in or out possible causes of the black puke. The results show no immediate danger. Also - all eyes are on him now, looking for any signs of distress.

More good news, the puking has stopped. Please pray all is well!

Thursday, November 02, 2006

Second verse, same as the first! Chuck's getting a new bed as his current one is broken. The cushions at the foot will not inflate ... nothing major. His wound is not looking as well as expected ... Dr. DeLeon is coming to check on it tomorrow. Please pray it heals!

Chuck's been on t-bar all day. He's steadily upping his time off the ventilator.

We got a visit last night from the New Jersey Tony Picciuti. It was GREAT. He brought entertainment (DVDs) ... and love from the New Jersey Picciutis.

Wednesday, November 01, 2006

New bed, new life. Previously Chuck was like a turtle on his back. Now he can push a button to sit up in bed. The stability of the bed allows him to reach for his tray ... to reach for anything he may need. Before Chuck was completely dependent upon the kindness of others.

His wound still looks good. It will be watched closely these next few days .... Issues may arise. Then again, they may not! Please pray Chuck's wound remains stable.