Jim is home now.  He's actually been home for 8 days, I just haven't had time to blog since then.  He's glad to be home and I'm thrilled to have him, but it has had it's downside.  The main one being his meds.  He came home with more meds than I've seen anyone take and keeping track of them and in supply is a daunting task.  Not to mention the schedule that has to be followed.  Plus, trying to get a definitive answer as to who is supposed to fill prescriptions, etc., is somewhat like pulling teeth. 

We just got through a two day fiasco that had me ready to throttle someone.  About two days before Jim ran out of his pain meds, we called his doctor to try and get an RX filled.  They didn't call us back until after I had gone to work and couldn't get the meds picked up.   We asked if he could refill the RX and he said he could, but that we had to come and pick up a written one.  I guess certain narcotics cannot be telephoned in.  So, I go the next day and pick up the RX, but they had changed it somewhat.  The original one called for a 20 mg dose and a 40mg dose to be taken simultaneously, but we were given an RX for one 60 mg dose instead.  The RX was written by our regular doctor's colleague, because he wasn't in the day we needed it.   OH, and by this time, Jim had already been a day without his pain pills.  So, I get to Walgreens and the pharmacist says she can't fill the RX because the doctor failed to specify whether the drugs were immediate, or slow release.   So, waiting for a call back once again that never came, I had to go to work, leaving Jim yet another day without pain meds.  I was so mad the next morning that I called the Doc's office and was told that our regular doctor wanted to keep him on the original two pills and dosages and that we would have to come and pick up ANOTHER written RX.  It's 30 MILES ONE WAY to go there.  I was fit to be tied and Jim was in so much pain by this time.    I finally get the RX and when I get back to Walgreens to drop them off, I ask point blank....."Are there any problems with the RX's?".  I was told..."no, we have these and it'll be about 40 minutes."  So, I run home and do a couple of things and go back, only to be told that they didn't have enough, but had an order coming in this afternoon AFTER I would be gone to work again.    Well, that was the STRAW!  I proceeded to let everyone know how tired I was of incompetent people and that after this, I would be taking my RX business elsewhere.    The pharmacist said, "Well, what I can do is give you what I have, but you'll have to get another written RX for the rest later."  I said, "FINE,  just give me what you HAVE and let me get out  of here". 

We go tomorrow to see the surgeon again hopefully he can tell us when we might expect Jim to have his next surgery to close the wound.  We are so anxious for that, because it means that this whole mess will soon be behind us and that Jim can start rebuilding his body again.

More later.....

4-04-2008

I know.....I know, I said I was going to start drawing again a few posts ago and I really thought I would, but when I sat down to actually begin,  the inspiration just wasn't there.  ::sigh::  That's the way it is with drawing.  BUT, I am now feeling a surge of inspiration and have actually created a few pixels in PSP for a new knitting themed page set and a summer collection.  Once I get started,  I'm usually good to go.  So, be watching for that.

Now....how's Jim and other home front issues?   Well, it's been over three months now and he's still in the hospital, but it looks like he can come home for a while before he has his surgery.  The only downside to that....he has to have his dressings changed twice a day and home health care will only come in once a day.  SO....GUESS WHO GETS TO DO THE OTHER ONE??  This is going to be so hard for me to do, because we're not talking about a minor cut that you cover with a Band-Aid.  We are talking about a very large, open wound that has to be "packed" with gauze moistened in saline solution.  I have to tell you that it is really a gross thing to look at and I am going to have to dig deep inside my heart and talk to God to be able to handle this.  I'm going through high anxiety over this, but I HAVE to do it, because I'm not going to make him stay there just because I'm squeamish.   If this were on someone else's backside, I could probably handle it a lot better, but when it's a loved one, that makes it doubly hard!  Please pray for my strength to be able to do this for him. 

3-16-2008

Hello world!  Yes, I'm still here, but obviously haven't been online much. So sorry that I haven't come on to give and update in a while.   Still dealing with Jim's situation.  He's still in the hospital and we still don't have a clue when they are going to do the next surgery.  They are still working on trying to bring his protein level up.  He is getting stronger and has gained back some of the weight he lost.  He can get in and out of bed and to the bathroom on his own now and can walk pretty well, but uses a walker.  They are trying to wean him off of that and he is beginning to walk with a cane.  He developed what they call "foot drop" in his right foot and is wearing a brace to try and correct that.  Foot drop comes from being bedridden for long periods of time.  The brace has helped his gait immensely.  He is still on antibiotics and the wound vac.  The discouraging part is that the surgeon told us that when they do the flap, Jim will be required to stay in bed for 8 WEEKS!!  I fear that this will set him way back again.    He's made so much progress and not only that, he is getting very depressed with being in the hospital.  I am looking into having him come home for a couple of weeks before the surgery, to give him break.  They said we may be able to do that and I know it would help him a lot with the depression he's been feeling.

We continue to pray and ask that you pray for us as well.  This journey isn't over yet.

Here's a picture of him.  He looks pretty good considering what he's been through!

2-24-2008

I think I mentioned in one of these recent posts that I am sure that there will be blessings and other good things to rise out of this whole experience that we've been going through, and I'm starting to feel them already.  Even though Jim is still in the hospital and this is far from over, both of us are feeling a sense of newness in our lives.  Our losses don't seem to impact as much as our hopes for the future.  We have made the decision to sell our dump truck, which is something we never thought we would do, but we're thrilled about it.  We've spent so many years in the fast lane and I think this was God's way of giving us that nudge we needed to simplify.  I know I've talked about our efforts and desires to simplify for a while, but now that we've sort of been forced into it by this awful illness, the wheels have begun to turn in the right direction.  Rather than feeling devastated and like we've lost everything that meant anything, we feel like we've been given what we really wanted and needed for a while. 

We've both done a lot of thinking about mankind as a whole and our definition of success.  The world viewpoint is he who dies with the most toys wins.  Do you ever look around at the world around you and wonder just what it is that everyone's  trying to achieve?   What is their destination?  Do they even know?  I don't think they do.  I don't think that most people do.   Who came up with the "American Dream" concept and why did the majority of the Americans just fall right into it?  Someone please tell me why people think they have to have a certain kind of car or live in a certain neighborhood to be viewed as successful?  These are the questions we've been asking ourselves.  Not only are we thinking outside the box, but we're moving out of the box.  We are no longer going to worry about all the stuff that the rest of the world is obsessing about.  We want to live to serve others as God intended.  It's not about US.  The phrase "It's better to give than to receive" became a popular saying for a reason, because it really IS.  Why save it just for the holidays?  So many people are hurting and suffering and I'm thinking that true happiness can be found in giving.

Jim and I are so thankful for each and every day that God gives us together and I hope that we never take it for granted again.

OH, the normalcy part......Even though Jim is still in the hospital and has many more days to get through, things are getting a little more normal.  We decided to schedule the days and times that I visit so that I get some rest and have time to take care of things that need looking after.  Plus, with the price of gas at around $3 bucks a gallon again, it's expensive to go every day.  Jim decided this himself and so I'm beginning to feel a bit more normal and not so hurried and stressed out.  He said he wants me to start drawing again and not to feel guilty for taking some quiet time for myself. 

So, with that said....I'm staying home today.  I bought a new washing machine that's being delivered today, so I've put off laundry until it gets here.  I'm excited to do laundry, if you can believe it.  LOL 

Thank you so much to those who have come by so often to leave me well wishes.  Most notably, Julie and Melanie.  I appreciate you girls so much.  Big hugs to you!!

2-17-2008

Here I am!  Some of you thought I'd disappeared according to your e-mails.  I haven't, but life has been unbelievably chaotic lately.  I'm about to run out of steam between going to the hospital and working. 

Jim has been moved to an acute care facility to try and get good enough to have his second graft surgery.  His first graft took really well and looks wonderful.  Our plastics doctor does beautiful work!  Of course, the pain and discomfort he's had to endure has been very difficult.  If they medicate him enough to eliminate the pain, he's so out of it that he can't even carry on a conversation without falling asleep.  So, he chose to just deal with the pain and stay more alert.  He is walking a lot now and can sit up for longer periods of time.  He's been able to shower before his dressing changes and that's a daily activity that we ALL take for granted.  He wasn't allowed to shower for 45 days and the sponge baths just weren't cutting it.  This new facility also has much better food than the hospital does, so he's eating better.  It'll be another few weeks before he can have his second graft, so he'll remain hospitalized and that's the hardest part.  He is so tired of being in there.

As for me, I've been on my usual routine of working and running back and forth to the hospital.  Today, however, Jim insisted that I stay home and take care of myself for a day.  I agreed, but I am feeling guilty about it.  I just know how much he hates being there and my visits are the highlight of his day.

I'm so sorry that I haven't done any updates on my graphics site lately.  I just haven't had the time and with all that's going on I'm frankly just not in the creative mood right now. 

I'll try to slip in and keep you updated more often, but no promises. 

1-26-2008

So sorry I haven't done an update for a week, but I've been working some pretty long hours this week and of course, looking after Jim.  He is doing better every day and is regaining some of his strength.  They finally got him set up with a trapeze over his bed....something I've been asking for since he was in the ICU.  I think it will help him to move himself around in the bed and will be good for strengthening his arms. 

Tomorrow we find out if his skin graft took.  I am so praying that it did so they don't have to do it again.  The donor site is painful and pretty icky looking, not to mention it will leave a significant scar.  If the graft takes well, the wound on the leg should heal fairly quickly.  As for the other wound on the tailbone, it's got more healing to do, but is about half as deep as it was originally.

We watched the Super Bowl together today and really enjoyed it.  Jim is now able to sit on the edge of the bed to eat, which is a major improvement.  He couldn't even bend his hips enough to get into a sitting position a week ago.  He has also been walking and feels so good afterward.  He is really working hard to get back to normal.  We've come a long way and he's made major progress, but there is still much to do.  I just hope he'll be good enough to go fishing this summer.  We love to fish and he wants to try out his new boat oars he got for Christmas.  *Ü*

I'll let you know how the graft goes tomorrow.

1-26-2008

Well, it's day 26 and Jim is still in the hospital.  He is off the feeding tube and is eating and drinking regularly now, which has made him much happier.  However, he is really getting sick of being in the hospital. 

They have started getting him up on his feet every day and he's been taking a few steps with a walker.  He isn't able to sit in a chair yet and that makes him unhappy, because he really wants to go outside and get some fresh air.  He has lost a lot of muscle and is working hard to get it back.

Monday they will do the first skin graft surgery on the leg.  The one on the tailbone has to heal quite a bit more before they can graft it.  I am pleased that they can start the grafting this soon.  I wasn't' expecting it so soon.

The hardest part of this whole thing right now is his emotional state.  He is really struggling with the physical limitations he has right now and he seems to be on a spiritual journey as well.  He is rethinking everything in his life right now.  He's prone to tears and I'm not used to him being like that.  I know some of it is the meds, but I think a good part of it is what this experience has done to him.

I'm too tired to write much more, but wanted to give a brief update.  More later....

1-18-2008

Sorry I haven't updated in a few days, but I went back to work on Wednesday and between working, sleeping and spending the extra time in between at the hospital, this is the first chance I've gotten to update since Tuesday.

Wednesdays dressing change went very well.  I arrived at the hospital at 9:00 AM and they were already under way with it.  They must've given him something pretty strong, because he just laid there looking at me and not feeling a thing as far as I could tell.  Of course, more meds meant more listlessness, but it was a good tradeoff. 

He didn't pass his swallowing test and so they aren't letting him have anything but ice chips and they have him on a feeding tube.  I tell ya, I am no doctor, but DUH HELLO, when your throat is as dry as the desert, or course you'll have trouble swallowing.  They're afraid he'll aspirate into his lungs and get pneumonia.  Poppycock!  He's so miserable not being able to drink anything, so when the nurses aren't looking, I give him water with a straw.  He does fine with it and feels so much better.

Today he was totally clear headed and sharp.  He didn't miss a beat and we talked about everything that had happened.  He understands everything that went on.  I guess when they had him sedated from the dressing change the other day, he pulled out his feeding tube, so when I went in this morning, they had his hands restrained.  I untied him immediately and informed the nurse that he only needed that when he'd been given drugs.  Otherwise, I told them NOT to tie his hands.  I think it's mean.  This is why I like to be there with him.  I know him, they don't and on some things, I know better than they do what he needs and doesn't need. 

He is dying to get up and try to walk.  He is still too weak, but it's a good sign that he wants to get moving again.  He's afraid that he'll waste away if he doesn't get up soon.  I tend to agree, but he needs to be a little stronger and his wounds need to heal a little more first.  I don't think he realizes how painful it could be to try and stand up right now.

1-15-2008

Today was a lot better day than yesterday.  Jim was much more alert and not as confused.  He's still somewhat unclear about certain things and a little anxious to get out of bed, but I think reality is coming to him more and more.    He had some trouble remembering our phone number

I am so full of anxiety worrying about his mental state. Such as right now, I'm sitting here worrying if he passed his swallowing test so he can have a diet Pepsi. LOL He's been wanting one since yesterday, but he didn't pass his test yesterday and the lady who does the tests still hadn't shown up to retest him by the time I left today. I called the ICU and his nurse is supposed to call me back. She was supposed to call back as soon as the test was done, but I never heard a thing. If I don't hear anything by 8:00, I might just drive back down there and give him the Pepsi myself!

I know they are busy and Jim isn't the only patient they have, but to me, HE IS. Haha! I am SO dreading the next dressing change. The last one was so awful that I made it clear that I wasn't going to allow him to go through that again. They best figure out a way to make is a little easier for him.

I left a little earlier today so that I could come home and get some things done that are piling up.  He seemed to be ok with it and seemed to understand that I needed to go.    So, I'm going to try and go to work tomorrow if things go well and he isn't panicky. 

Oh my, what a day I had today. The highs are high and the lows are low.

Of course, I was elated that he finally came off the vent and all, but he had a very rough day today. He's very disoriented and I'm thinking he must've had some really awful dreams, because he's convinced that the people at the hospital are trying to kill him.   He must've said 1000 times today, "you gotta get me outta here".

He's also got some short term memory issues right now. He doesn't remember the doctor coming in to see him this morning and he kept asking the same questions over and over again. When I got there this morning, he was crying for me and just extremely emotional.  I am so NOT used to seeing him like this.  I've only ever seen him seriously cry one time and that's when his dad died.  He's such a strong person and to see him like this is horrible for me.   I know it's the drugs more than anything, but it's unsettling nonetheless.

The worst part today was the dressing change on the wound vac. I stayed with him for it and what a horrendous ordeal that was. It hurt so bad that he couldn't stand it. He was begging them to stop and I had a very hard time not just running out of the room. I had to stay and get him through it though. After they were done, he felt much better, but he's just so anxious and keeps telling me that he's scared to go to sleep. I hated to leave him tonight, but he wore me out something awful. I was going to go to work today, but he begged me not to, so I stayed and called in to my job.

They say he failed his swallowing test today, so he's only allowed to have ice chips until they are sure he won't suck liquid into his lungs and risk pneumonia.    That was so agitating to him, because his throat and mouth are so dry.    I think once he's allowed to drink freely, that will make him much more comfortable. 

Hopefully each day will get better.
 

Thank you...thank you to everyone who's been leaving such nice comments and for the prayers.  They have worked wonders.  I will continue to write about his progress and at some point will probably move this subject to an archive so that anyone else who might be stricken with this awful flesh eating bacteria might be encouraged.

Well, the vent is still on, but the sedation meds were turned off this morning at 5:00 AM.  The vent would be off too, except that when they shut the vent off this morning for a test, he got agitated and they don't feel he's ready to be off of it totally  yet.  They will try again in the morning.  The sedation meds are taking a while to wear off.  When you're on them that long, they build up in the tissues and it takes as long as two days for them to totally wear off.  He is trying to wake up though.  He has been lifting his head and his arms and opening his eyes a lot.  I actually saw him follow the nurse with his eyes when she walked across the room.  So, he's coming back, but it's a slow process.  I've been making myself crazy with it, and today I just decided that I need to relax and try to understand that I can't push this thing along any faster.  He needs to be 100% ready to come off the vent, because if he's not ready, it could cause a mad scramble to get him back on it again and we don't want that.  So, I'm praying for patience tonight.  I'm just going to take a one day at a time approach to this. 

I will go back tomorrow and maybe if we're lucky they'll take him off then.  If not, I'll just wait some more.

1-11-2008

And so does the vent.  It almost happened today.  The critical care doctor ordered the sedation meds be stopped so that they could remove the vent as he wakes.  During this time, the wound nurse came in to change the dressings and not only did the nurses notice, but so did I, that Jimmy's right hip looked awfully red and swollen, and it was hard and hot to the touch.  The nurses and the critical care doctor were suspicious that there might be another area being necrotized by this bacteria.  My emotions just went on overload at the thought of him having to endure more debridement and also that this monster bacteria was spreading.  So, they paged our surgeon who's been handling this and he came in and tried to draw out some fluid with little results.  He said that it appeared to be what they call "cellulitis", which is a superficial infection of the skin and underlying tissue. It is usually on the surface and does not involve deeper structures.  I was so relieved!