Wednesday, May 31, 2006

So, 9:30 P.M. counts as "after"noon - right? There really were very few changes today. Chuck's slowly improving. Stacey noticed that he looked thinner when she came in to see him this evening. I couldn't see the change, as I'd been staring at him all day long. I'm hoping to notice the difference when I see him in the morning.

The docs' main focus right now is getting Chuck's "water weight" off. Once most of the fluid buildup is gone, they'll take him off the ventilator. So, everyone is working towards that end.

I'll post in the morning!
Morning update:
Stacey stayed with Chuck all night. Apparently, things got pretty active during the night shift - he was sent for a CT scan, was x-rayed, had both a new central line and a new pick line put in. Whew, I think Stacey is pooped. She's gone to the hotel to sleep! She's been a God-send. Please offer prayers of thanksgiving for her!

There is not much new this morning. He looks a little less puffy; he's still being sedated; and he's still on the ventilator. One new thing, the doctor of infectious diseases took a gander at him yesterday, ran several tests, and has declared that Chuck is disease/infection free. Yea!

I'll post later this afternoon. Have a great day!

Tuesday, May 30, 2006

Evening update:
From Shelokov = Chuck's bed can be raised now. To me, this is HUGE. This should help him to breathe more easily.

From Dr. Biederman, "kidney doctor," as he introduces himself: First of all, Chuck's kidneys are great. He is trying to take care of Chuck's swollen state. Honestly, he does not see the swelling as a problem, and firmly believes his kidneys are working perfectly. They are not producing much urine, because his body is trying to conserve liquids ... like it would if he were in the desert. He is now eating, and he is not receiving many liquids into his cells. Dr. Biederman thinks the kidneys are smarter than we are ... and are doing a great job. Now, the swelling, he explained, is a natural occurence. Think of spraining your ankle. It swells and stays swollen for quite a while. Well, some of Chuck's ribs and vertebrae have been broken or cut, and this has caused swelling to occur ... just like a sprained ankle. Thus, he looks like Violet Beauregarde after she tries the three-course-dinner-bubble gum. Here comes the quirky part, ... Dr. Shelokov does not want Chuck to be swollen, so Dr. Biederman is working to make take care of that. Tonight, he will give Chuck some new blood, which should help pull some of the liquid that is currently outside of his cells into the new blood cells. Then, his kidneys can get rid of it.

All is progressing well. I'll update you in the morning! God's blessings to all!!!
Afternoon info:
Chuck is doing really well. Sorry for the lateness of the post. I've been waiting for information from the pulmonologist. He did a ????, yeah, I'm very detail oriented. To do the ???, he put a camera down Chuck's breathing tube to get a look inside his lungs. While I've not heard from the doc yet (not sure how long that will be), the pulmonology nurse said all looked good. They removed very little mucus, and no culutures needed to be collected. Sounds good to me!

All of his levels seem really good = blood pressure, heart rate, oxygen absorption ... all within really good ranges (yea Chuck!) That boy's a fighter!

I hope to meet with Shelokov one more time this evening. I'll post again sometime tonight.

Thanks again for your words of encouragement.
Morning Rounds:
Alrighty, hold onto your hats. Chuck will most likely be on the ventilator for up to ten more days ... that means he'll be in the ICU for up to ten more days. Please pray for NO infections. This is very important. Shelokov keeps reminding me that this was a very invasive surgery, and Chuck's body has gone through a great deal (he says this to encourage me??? ... or so I think). His body is just very weak and tired. Please pray for his strength ... he's scared. I know this is something he must go through alone ... dealing with the fear ... but any support he can get through your prayers is greatly appreciated. Stacey and I are trying to speak words of encouragement to him so that he will fight.

Stacey has a brilliant idea, we are going to start researching what the doctors are saying so we can tell Chuck which part of his body to focus on. As many of you know, Chuck has an incredibly powerful body-mind connection. The other night I told him to fight, fight, fight to get his blood platelets up. He said he understood ... and the next day they were up.

Hold Chuck up in prayer, please. I'll post again today around noon.

Monday, May 29, 2006

Wrap up from Monday:
Chuck was kept sedated all day. Again, he got an excellent day of rest. The nurse calls the med that's keeping him sedated Milk of Amnesia: it's white, milky, and keeps him happy.

That's it for today. I hope to have more news tomorrow. In my humble opinion, it seems that once he's able to sit up, many of his issues will resolve themselves. As my dear friend, Bob-O, keeps telling me - keep the faith!

Oh yes, Stacey, Chuck's business partner, drove up to keep me company. I am so touched by her kindness and concern for me and Chuck. It's a beautiful reminder of truly blessed we are.
Update from this morning's rounds:
  • Chuck was heavily sedated so they could poke, prod, and reposition him. He is still out, but will be more alert later today.
  • Seems he started to develop pneumonia in his right lung, which was why he had such difficulty coming off the ventilator initially. They've been giving him antibiotics through the weekend to combat this. He is not running a fever, which is an excellent sign. Not sure when he'll be taken off the ventilator.
  • His liver function is "sketchy" due to the incredibly rich, intraveneous nourishment he's receiving. Aparently, the liver is not fond of this, and things "back up" there. This is not a huge concern, however.
  • They found some "sludge" in his gall bladder, but nothing serious = no need to remove it (which is GREAT since I had no idea this was an issue...or an option!)
  • He looks like a swollen tick = retaining tons o' fluids. Once he is sitting up, and moves around a bit, the doc thinks he'll deflate quickly.

Things are going great so far! I'll keep you posted.

Chuck opened his eyes for about 30 seconds yesterday, and occasionally responded to the question, "Can you hear me?" They are weaning him off of the morphine drip, so he is more responsive. Today, they will try to wean him off of the respirator again. Also, I’ll be able to find out the results of all the tests they performed on Saturday – testing his lungs, a CT scan of his abdomen. The doctors are not readily available on the weekends. What, they think they should have time to see their families of something?? Seriously though, I feel that if anything had been questionable concerning the tests, they would have notified me immediately.

I’ll let you know how today goes. Please pray for Chuck’s comfort. It will be a rough ol' day for him. Please pray for my strength. It's hard to see him so uncomfortable. Pray that I remain calm. I’ve come to the point where I’ve reached the end of myself and need to lean heavily on God for strength. Of course, he’s thinking, “Well, it’s about time, sweetie!”

Love you all!

Saturday, May 27, 2006

Ahhhh, two days of blissful rest. Though Chuck must remain on the respirator for a while (sad for me), he's on a morphine drip (happy for him)! He's been dreaming of this for months. He looks wonderfully peaceful. I'm not sure how long he will be sedated like this. He had such a rough day yesterday, Shelokov thought it best to give him a good, long rest. It's the weekend, so I don't receive much information from the doctor. Once I know more, I'll let you know!


Friday, May 26, 2006

But this precious treasure—this light and power that now shine within us—is held in perishable containers, that is, in our weak bodies. So everyone can see that our glorious power is from God and is not our own.2 Corinthians. 4:7... this is one of my favorite verses ... and seems so fitting for Chuck right now. The strength within his frail body is amazing and shines brighter every day!

The respirator tube was reinserted last night. It's just too hard for him to breathe while flat on his back. I don't know when the tube will come out. I am still hoping that he'll be out of ICU later today.

This is short and sweet today. Chuck had a rough day yesterday ... trouble breathing, very thirsty, and everytime he was awake he asked for food. It just broke my heart. He's tough, though. Praying for physical comfort for him, relief from those naughty physical impulses he has to eat and drink, and for healing.

Chuck's first questions: How long was surgery? When can I sit up? Who won American Idol? The repirator is out ... there is a slim chance that it will go back in. All depends on how much oxygen vs. carbon dioxide is in his lungs. He has had two drains removed today ... in addition to the removal of the respirator. He probably feels a bit naked.

I got my first gander at his back today. Wowwie, wowwie, wow, wow, wow! Thankfully, it is not straight as a board ... let's face it ... I'll miss the hump just a little. His new back is beautiful ... what it means for him is even more beautiful. I can't wait til he feels better ... watch out world!

He must stay flat on his back for 36 more hours = he will remain in ICU for 36 more hours. Of course, this is not definite. The hope is that tomorrow evening or Sunday morning he'll be moved to a regular room. Once there, I'll let you know his room number.

Dream BIG, hope MUCH, keep the FAITH.
Today is “weaning” day…hopefully Chuck will be taken off the respirator. The boy looks a mess … he’s doped, swollen from all the fluids they’ve pumped into his body, and tubed out the wahzoo. The tubes are protruding from almost every orifice in his body: one up his nose, one in his mouth, an arterial line, a central line, three tubes in his back draining fluid, and two in the front which collect the blood produced during the breaking of his bones to straighten his spine. The blood is cleaned and pumped back into his body … amazing. I am happy to report he looks better each day. I'm anxious see how he's improved over the night. Oh, and there is the hair issue. It's a bit greasy ... so I've spiked it ... a little something for my amusement. He'll never know.

Concerns: his blood pressure is a bit low which prevents the doctors from fully knocking the boy out. Pray his blood pressure comes up and stabilizes … oh for a day or two of perfect, peaceful sleep! Please pray that the hardware stays securely in place.

Please say a pray of thanksgiving for Chuck and Mary (my wonderful in-laws). They've been great through this whole thing! Oh yes, I left Debbie off of my prayer list yesterday. She's the nurse who called me each hour from the O.R. to update me... BIG prayer of thanksgiving for her. She was such a comfort ... and used words I could understand ... like "the stuff in his spinal cord"... rather than the clinical terms.

We feel so fortunate.

Wednesday, May 24, 2006

First of all, Chuck is fine! Thanks for your prayers, phone calls, emails, and words of love. I feel so incredibly blessed to be surrounded with so much love and support.

Chuck is currently in ICU and is O-U-T. Mom, Dad, and I saw him momentarily, while he was alert ... not pretty. They needed to check his leg function, thus the alert state. Before the surgery, he had no feeling in his legs but could move them ever so slightly. After the surgery, he had no feeling in his legs and could not move them at all. This does not mean that he has lost the use of his legs, however. Shelokov is treating him as a if he has a spinal injury = steroids to reduce swelling in the spinal cord. We will see how everything progresses

As for Chuck's back, Dr. Shelokov said he has beautiful muscle and skin covering it, again, a FIRST. Please offer a prayer of thanksgiving to the following AMAZING doctors: Dr. Huse anesthesiologist extraordinaire, Dr. Shelokov - master mind and gentle soul, Dr. Patty Young - plastic surgeon divine ... and to my sweet and supportive in-laws. God love those two!!!

Second - your comments have given me so much encouragement. You are amazing friends! Thank you, thank you.

Okay, third, may I just say that the New Jersey Picciuti's rock??? How blessed I am to be a member of such a supportive group. Uncle Eddie and Aunt Helen, way to raise a fabulous family. I was so touched by your words of concern and love.

Whew, what an amazing day. Mom, Dad, and I witnessed the miracle of modern medicine. The day was long and intense. It began at 4:30 A.M. and wrapped up about 8:00 P.M. Dr. Shelokov kicked us out at 8:00 ... reminding us that we are running a marathon and need to take things in stride. He made it clear ... there will be NO spending the night at the hospital ... and we all are to be well rested and ready to give Chuck the support he needs during his recovery.

Alright ... let me give you the highlights of this amazing day. First, a reminder of the main lesson of whole ordeal ... nothing is for certain. Those of you who know me well are aware that I like definitives ... if I put something on my calendar ... it damn well better happen. Well, God's been chipping away at that adorable personality quirk, helping me release that whole "control" issue. For the past two years ... absolutely nothing has gone "according to plan." I'm actually getting the hang of this thing called flexibility ... it's still not pretty, but I'm getting there.

So, that outline I provided ... basically very little of that happened! Ha ha - that God's a laugh riot! Turns out that Chuck will need six to eight weeks of bed rest before attempting physical therapy. It is imperative that the "hardware" in Chuck remain securely in place. Any bets on how long this "bed rest" will last??? Serioulsy, if the hardware fails to function properly, he will be in worse shape than before the procedure. Soooo - please pray for this situation. Pray that I don't take a frying pan to his head to keep him on his back.

How does he look? The man was FLAT on his back ... no jutting neck, no head dropping back ... no curve in his back ... this is the first time EVER that I have seen this. Before seeing Chuck in person, Shelokov showed us before and after xrays. Whew! The space below his 12th rib has increased about 33%. His curve is all but gone ... his head is now positioned over his pelvis. He still has his scoliosis curve, but that hump is G-O-N-E. His chest is gorgeous ... lots of room. As is expected, this new shape will be incredibly uncomfortable for him ... bone, muscle, tissue all rearranged, all manipulated. Please pray for quick healing.

Funny thing, when we went in to see Chuck, he had a breathing tube so he could not speak. He used his handy-dandy sign language to communicate with me. Now, my sign kinda stinks ... so he spelled out everything. Either Shelokov tweaked the "spelling" portion of Chuck's brain, or an angel of mercy whispered in Chuck's ear ... because he could actually spell words! You must know, my brilliant husband's spelling in on par with my six-year-old niece's. God, I love that man! After providing directions for me to bark at all the nurses, he signed "I love you." I completely lost it, and Shelokov kicked me out. Damn, I love that Chuck Picciuti. He's in agony ... but still looking out for me.

I do not know if Shelokov is a believer in Jesus as Savior ... but he has a keen understanding of how to handle situations that are out of one's control. His wise advise: you can do nothing to help Chuck. It is out of your hands. The best thing for you to do is to just accept that you cannot make him better, and release control. Little did he know that I already realize that I'm not in control ... and am thankful that THE MAN's got everything going accoring to HIS plan. Oh - ask anyone who knows me, I don't always accept this fact ... you know the whole control issue I have with scheduling everything! However, I recently heard an EXCELLENT definition of sovereinty = God provides the best outcomes through the best means for the highest good. While some things make no sense to me in my finite mind, God can see the whole picture and knows the best way to bring about the best results for the most people.

I recorded abosultely everything that happened yesterday and am debating posting it ... could be quite mind-numbing: example: 8:05 Chuck went under ... 8:45 Debbie called to tell me surgery has started...etc. If you're like me ... you just want to know that the surgery was a success, Chuck is OUT and resting. I will keep you posted on his leg use. Sadly, while he was awake yesterday, he was in a great deal of pain ... mostly muscular... absolutely every muscle in his back and neck has been manipulated and repositioned. Please pray for my baby's comfort!! Please pray that I am a good support and don't cry everytime he winces in pain.

Chuck and I are blessed beyond belief.

Tuesday, May 23, 2006

Wow, Chuck and I've had so much fun reading your responses. We had no idea what a HUGE blessing this would be. I've received some questions concerning the surgery via email, and would like to provide some basic information:
  • Chuck will be at Baylor Regional Medical Center at Plano, 4700 Alliance Blvd., Plano, TX 75093.
  • The purpose of the surgery is two-fold.
  1. First, his spine is currently fused except for the last four vertebrae. He has developed arthritis in those final four, the disks between them have worn down. Thus, he is living with a great deal of pain. The first two segments of the surgery will take care of this.
  2. Second, his lungs and other organs have very little room due to the compressed space known as Chuck's chest! Currently, his lungs function at 40% capacity. This is "fine" now, but as he ages, this percentage will continue to decrease. After the surgery, his lungs should be at about 60% capacity. Though it sounds small to me, the doctor said Chuck will feel like running a marathon! The final segment of the surgery (vertebrectomy, insertion of rods) should take care of this.
  • The surgery will not have a direct impact on Chuck's ability to walk. However, you never know. Once he is out of pain and able to breathe ... there's no telling what the man will be able to do.
  • Full recovery will take at least a year. However, we expect Chuck to be up and "running" in about a month. If all goes well, he'll be in a regular hospital for one week, then a rehab hospital for two weeks. Once he's free from the hospitals, he'll stay with his folks, in Bedford, for a month for follow up visits with the docs and to be fattened up with Mom's GREAT cooking.

Peace out.

This is the day before the BIG surgery; the surgery that will forever change the lives of Chuck and me. (a bit dramatic??) Seriously, thought I'd outline what should occur tomorrow. For my friends who have actually gone to medical school, just grin and bear my feeble attempt: Chuck's surgery will take about twelve hours. It is divided into three segments.

  1. The first segment lasts 30-40 minutes. The surgeon makes an incision on the left side of his abdomen, removes some of his disks, and replaces them with cages. (does this sound as bizarre to you as it does to me??).
  2. The second segment lasts about the same amount of time. The surgeon will make an incision on the right side of his abdomen and repeat for more of his disks. Yeah, those who know me well know that's about all the details you can squeeze out of me ... not so much a detail person.
  3. The third segment will last several hours. They will flip Chuck over on his stomach ... and do the vetebrectomy. First, the incision ... then the cutting of the bone to straighten his spine, then the insertion of the rods.

The nurse, Debbie, will give me an update every hour. Dr. Shelokov will come out at the end of each segment and give me an update.

After the surgery, Chuck will be on a respirator for a few days. Not sure how long ... Dr. Shelokov says 2-3 days is average. He'll be sedated while he's on the respirator and is GREATLY looking forward to the rest.