It's Friday, again!

Good afternoon from sunny South Georgia,

Yes, you read that right. I am at the James family farm in south Georgia for some much needed rest. More about me later. I know you are anxious for an update on daddy.

Well.....the trach came out last Thursday with no problems and daddy removed the feeding tube all by himself in the wee early hours of Friday morning. Yes, I was there but it was one of the few times I slept. And he woke me when he was done. The rectal tube and catheter were removed a few days later. He and I had good nights and some really not good nights. One early morning at 4:30am he kept calling out and when I would answer he was already back to sleep. This went on for a short while. I finally went over to him and he was drenched in sweat and very disoriented. His blood sugar was 24. He was given sugar water and it went back to normal. The hallucinations have come and gone and come again. Monday it was decided that I should not stay at night with him anymore, that he was capable of doing a few things for himself and didn't need us there at night. So after 24 hours of being there I went home, crawled in bed at 5pm and slept until the next morning.

We were also told on Monday that by the end of the week he would be ready to go to short term rehab, they had done their job. We thought Specialty Hospital would do all his rehab but they were only there for getting him off the trach. Barbara and I toured one short term rehab facility Monday and Cindy joined us Tuesday to look at 2 others. We decided the best fit for daddy is LifeCare Center.

That brings us to Tuesday night / Wednesday morning.....Somewhere around 3am his blood sugar went low and his heart rate went high. Sugar water brought the blood sugar back to normal. Not sure what they did for the heart rate. Again at 6am the heart rate went up. While the supervisor was tending to that they told him of the happenings just 3 hours earlier. They checked his blood sugar and again it was low. After more sugar water and calls to his doctors, he was sent to the ER. Cindy and I got the call about 8am and joined the family by 9. Long story short, he needed to be admitted for observation. He was transferred back to St Lukes and sent directly to ICU. We were so very glad to have him back in familiar, trusted surroundings. Since then they have regulated his blood sugar, fed him very well, transferred him to a regular room, given him a shower, added meds for elevated heart rate, and transferred him to the cardiac monitoring floor. He is doing MUCH better. No more hallucinations! He is also in much better spirits but is still not sleeping. Oh, almost forgot, he does have some pneumonia again, this time in the right lung. Ugh!

Cindy, Barbara and Julie have taken over staying nights with him and I left town yesterday and came to the farm. Reports from St Lukes are that he is having a great day, eating alot, and getting restless. A rep from LifeCare came to see him today and they have a bed for him in short term rehab. We are just waiting now for the docs to give the OK.

Wayne is already on his way to join me here at the farm as I type this. We have not seen each other in almost a month. Looking forward to our time together very much. I'm not sure if I will head back to Jacksonville Sunday or Monday. I would like to be here for my nephew Seth's piano recital Sunday night. Will just have to see how things are going with daddy.

Please pray for:

- Daddy's mind to remain clear

- the pneumonia to respond to the antibiotics and not get any worse

- his appetite to continue to increase

- for the nurses, techs and docs caring for him

- strength for Barbara, Cindy and Julie as they care for him in my absence

- the time Wayne and I will have together

- a bed at LifeCare to still be available when he is ready to leave

I am very tired and drained from the last 3 weeks of rehab. I am trusting God for whatever happens next and counting it all as joy. Thank you all for keeping us in your prayers. Again, I miss you all, very much!

Well, the clouds are darkening and the wind is picking up. Time for me to go stretch out and let the storm rock me to sleep.

Resting in my Father's arms.

Prayer request for Elaine's dad

Elaine just called.

Her dad's blood sugar is very low, his heart rate is very high. He is being taken from the rehab facility to Memorial Hospital. She and her sister are hurrying to go to the hospital.

Thank you for supporting us with your prayers.

Standing with you, Wayne
--
"And how blessed all those in whom you live,
whose lives become roads you travel;"
Ps 84:5 (MSG)

Rehab is hard work!

Dear friends,

Sorry for not updating sooner. I am spending 12-15 hours a day at rehab with daddy and am now on the night shift with him. So when I am home I'm sleeping and getting right back there.

Daddy is progressing. Finding the right drugs to calm him down and something to make him sleep has been a challenge this week. He got the most sleep last night he's had in, well, since he got there. We have good and bad days in therapy and in the room. I arrived yesterday to him having thrown his coffee, muffin and water pitcher. That's when I took over nights. Cindy and Barbara say he's had a good day. In therapy today he did all of the upper extremity exercises AND he walked the length of the parallel bars with assistance. I'm going for another good night. Hope I can get some sleep, too.

GOOD NEWS - Just got a call that the trach comes out tomorrow. Praise God. That is one less thing to deal with. Now if we can get him to eat enough and swallow pills so we can get the feeding tube removed.

Please continue to pray. Daddy is afraid to be alone. Cindy is gone now until next Tuesday so it's Barbara and I to take the bulk of being there with daddy. I am still certain God has me where he wants me.

I will update more when I can.

Praying for another good night.

Friday night from Florida

Good evening,

I need to be careful what I put in these emails. Wednesday night i ended with "I'm just gonna hang on for the ride." and what a ride it has been.

Yesterday began with a call at 8am from rehab saying daddy was being uncooperative and belligerent. He was refusing to let them take his vital signs or give him any medication. Cindy and I threw on clothes and out the door we went. So many things happened thru the course of the day. We didn't give him a choice about the meds or vitals. We made it through the morning. He did get to start eating. After half a grilled cheese for lunch, he refused physical therapy but we left him up in the wheelchair for a couple of hours. When Barbara arrived, she had to work yesterday, she marched in and gave him a stern talking to. The sad part is, his mental status is altered. He listens and says he understands but it doesn't take long before he is back in la-la land. When Cindy and Julie arrived we all went to dinner leaving daddy alone for about 45 minutes. We did have a good talk as a family. There is still alot for us all to process, together and individually, about how to care for daddy.

Being alone for the time was very good for him. When we got back he was almost in a panic. He was alone in his room with the door shut and he got scared. He cried and begged us never to leave him alone again in that room. He actually sounded more lucid than he had in a long time. As the evening wore on his mind would come and go. I spent the night with him. He was calm and cooperative through the night, just didn't sleep much even with the Benadryl and Dilaudid. I think with all the sleeping he did in ICU that he is all slept out. Throughout the night he and I had a number of short but very good conversations. He apologized to me for the way he had acted and treated me, and said he didn't want me to be afraid of my daddy. I heard him pray last night like I have never heard him pray. All I could do was cry.

By the time Barbara arrive at 8 this morning, breakfast was there and I was beyond exhausted. 24 hours of dealing with daddy and no sleep had really taken it's toll on me. Cindy came and took me home as I was in no condition to drive. After a quick bite I was off for much needed sleep.

I have only had a brief chance to catch up with Cindy on the events of today. It appears as the day went on he got worse and worse. Much discussions are now being had as to why this is happening and what are we going to do about it.

Please pray for:

- Clarity of his mind. Difficult to watch him act like someone I have never met.

- Healing of his bottom. A little better today.

- PT and OT. He did go today and worked for about 40 minutes today but they don't do in on the weekends.

- Weight gain. He's started eating, just not much at one time.

- We have requested a meeting with the case worker and our entire family to discuss what is happening.

- Peace that surpassed all understanding and comfort for the family. We are all struggling with what to do.

- For my marriage. Wayne and I married to be together, not apart. Satan tried to stir things up but he did not win!

Still standing on the Solid Rock.

Daddy passed the swallow test and I fired a nurse

Good evening,

My goodness, what a day. And yes I am tired. Not weary, tired. My plan for today, yes I know...if you want to make God laugh tell him your plans, was to go with daddy to Memorial for the swallow test, see how he did in rehab, and then come home early afternoon to work some and pack my stuff up with the idea of leaving tomorrow. God certainly had a good laugh at that cuz it just didn't go according to my plans. I left at 9:30 this morning and got home sometime after 8 tonight. But I know you aren't reading this to hear about me.

I arrived at rehab just in time to watch him being transferred from bed to stretcher for the trip to Memorial. Our ambulance drivers were wonderful with daddy. They even let Barbara and I ride in back with him. At Memorial he had to be transferred to the movable x-ray bed/table. Shortly after we moved him he began to complain of alot of pain on his bottom. And that he was "FREEZING". We were able to roll him slightly onto his right hip and nothing we could do or say brought any relief. The tech who did the study was great and even made adjustments for his positioning for comfort. AND HE PASSED! He can now, well when rehab gets the results and the doc writes the order, have thickened liquids (consistency of V8) and soft foods. But by the time he was done, he was complaining of severe, excruciating pain on his bottom and all he wanted was to sit in a tub of hot water to relieve it.

The day nurse joined us in his room shortly after transport left. I told her he was having severe pain and may need to be cleaned. She looked down at him, did not touch his body or move the gown, and said he did not need to be cleaned. I then asked if we could get some warm wet towels to put on his bottom and in a very loud voice she said "No, that would burn him". (If she had assessed him that morning she would have already known he was severely burned) The respiratory tech in the room all this time offered to help the nurse reposition him in the bed. When they started to move him around he screamed in pain and guess what they found?! I immediately left his room, went to the nursing station and asked to see the supervisor...now! I'll spare you the details of what all I said, there were no wirty dords, but he got my message loud and clear. He said the first thing he would do was go remove the nurse from the room and assign a new one. Well, I didn't want to be there for those fireworks, so I met Barbara in the cafeteria for lunch. There we ran into our infection control nurse and told her what had happened. Boy oh boy, did she ever get an ear full from us.

Side bar: Daddy has C-diff, a contagious bacterial infection in stool, which causes diarrhea. This getting, and staying, on your skin for any length of time has best been described as "battery acid". Very caustic. He started with this last week while in ICU at St Lukes. There he was kept very clean and had no burning or scalding to his bottom. Apparently C-diff is not uncommon for patients with prolonged hospital, or rehab, stays. He was transferred to rehab last Friday night. By this afternoon his poor bottom had severe burns from the caustic stool. No wonder he screams and throws a fit when this is on him.

I now return you to your regularly scheduled update.....

And if all that happened this morning wasn't enough, an hour after we got back from the swallow test, and they got him cleaned up, PT came and took him to the gym to work our for an hour. I'll bet you can just guess how cooperative he was with them. He was still having severe pain from the burned bottom and insisted on seeing a doctor. He was convinced the doc would say it was OK for him to sit in a tub of hot water. So I went to the director of PT, gave him the details, he went to see daddy as "the doctor" and told him politely that no he could not get in a tub of hot water. And yes, I enjoyed that just a little too much.

This afternoon went much better. Our new nurse was the best. Just like we had come to expect at St Lukes. She gave daddy something for pain, cleaned him very well and got him comfortable in the bed. I spent a great deal of time soaking his hands, one at at time, in warm soapy water and cleaning his fingernails. He slept through most of it but is was a most special time for me. Tomorrow I plan to do the same with this feet while he is up in the chair. We have requested the same nurse for tomorrow. Daddy even kissed her when she left.

Cindy and I have made a list of things done, or not done, and are going to request a meeting tomorrow with the director of nursing. (I met her Friday night on our way in.) The events of today, as well as a host of other things, needs to be addressed now before anything else happens.

Please pray for:

- Healing of his bottom. When that is painful he is not cooperative at all and very foul tempered.

- PT and OT to have a better day with him tomorrow.

- Weight gain. We want food!

- Clarity of his mind. A little better today at times.

- Peace that surpassed all understanding and comfort for the family.

- Clear direction for me. Should I stay or should I go now?

Well, dear friends, I must get some sleep. I feel pretty sure God already has tomorrow planned out for me and I'm just gonna hang on for the ride.

Praising God for today.

Welcome to Rehab

A gracious good evening to everyone,

We are in rehab! Daddy was transferred last Friday, night, at 8pm. So much for "in the morning". But we got there. Before he could be transferred, his feeding tube had to be changed. Dr Hartigan arrived at 3:30pm to do that. Then we had to have an x-ray to confirm positioning which was not correct so he was taken to radiology at 5 for it to be done under fluoroscopy. And if that wasn't enough, while we waited for transport to come at 7:15, daddy's heart went into A-fib again and looking at the monitor this all started about the time he was taken to x-ray for the tube to be repositioned. The heart doc did call back quickly, meds were given and we were on our way....in a torrential down pour.

The weekend, well, it was just a weekend. Nothing is done at rehab on the weekend. Daddy spent his time sleeping during the day and catnapping at night. The nurses did have to put him in "boxing gloves", a type of restraint that only stops him from using his hands but not from moving his arms. Seems he was trying to pull things our again. He is still in isolation, gown and gloves for us, because of the C-diff bacteria in his stool. And because of the isolation, I cannot have my computer in the room. So, no updates till I get home and no working while I'm there either. We were told he would be evaluated Monday by PT, OT, speech, recreation, dietary, wound/skin care, infection control, and anyone else they felt should see him. The only person who came in yesterday was speech. She needed to get the records from St Lukes regarding the failed swallow test before she could go any further. By the time I left yesterday I was not very happy that he had been there since Friday, was still in the bed and no one else had evaluated him.

Today, now that's a different story. When we got there daddy was being cleaned up. He managed to get one of his gloves off and, let's just say he was quite the artist. It wasn't long after we arrived that things started happening. Respiratory came in to give a breathing treatment. Infection control introduced herself and told us all about isolation, how low the catheter tubing should not hang (among other things), and how to take our gown and gloves off and wash our hands when we leave the room. While she was busy doing that, speech came back in to do the preliminary swallow test. She fed daddy a cup of ice chips with blue food coloring. This was so she could see if he aspirated. He laughed and joked with us quite a bit. And he PASSED the preliminary swallow test. When she suctioned the trach after the test there was no blue liquid in his lungs. Praise God! He is now scheduled for the real test tomorrow at 11am at Memorial Hospital. It can't be done at Specialty because their x-ray is down. Cindy, Barbara and I took a break to each lunch while the nurse did a few things to daddy. When I got back to his room I found PT and OT there to do their evals. That went way better that I expected and much better than last time in ICU. After helping him to the side of the bed he was able to sit there with minimal support but did require them to stand him up and support him. They got him in the recliner and then finished the eval. He has very good range of motion in his arms and is able to comb his own hair and wipe his face with a wash cloth. His legs, not so good. He is not able to straighten either leg out completely and had very decreased sensation on the sides of his feet and no feeling on the top of the feet. There is no strength at all in the feet and ankles. Beginning tomorrow he will go to the PT gym once a day for an hour for PT and OT. My nephew Andrew and his friend Justin came to visit shortly after PT left. He had a great time cutting up with the boys. Once he was put back in the bed he went to sleep almost immediately. All that activity really wore him out. Maybe he will sleep better tonight.

Daddy has minutes of complete clarity and more time of great confusion. He always gets the current president correct, usually gets Jax, FL correct, but the day and date are too much. We ask him multiple times a day and correct him each time. We explain where he is and how he got here. We tell him his job is: #1 to pass the swallow test, and #2 to do what he is asked to do when he is asked to do it, no matter what. His weight is down to 106. I noticed this afternoon that one of his wrist bands was up around his upper arm.

Tonight I would like you to ask you to pray specifically for:

- The swallow test tomorrow at 11. That he will be cooperative, there will be no problems and he will pass.

- PT and OT to be able to communicate in a way he will understand and want to participate.

- Clarity of mind. He is slowly getting better but easily reverts back to acting like a child to get his way.

- Weight gain. I don't have to tell you that a man 5'6" should not weigh 106 pounds.

- Clear direction for me. I want to go home, to be with my husband, and to get back to work full time.

Thank you all, again, for your continued prayers and support.

Still praying for a God sized miracle.

What a difference a week makes

Good Thursday afternoon my friends,

I am sorry that it's been so long since my last update. My days go quickly with all the doctors, therapists, respiratory, x-ray, nurses, and the like coming and going in our room. I started this update Tuesday morning. Now it's Thursday afternoon. So much happening. Let's see if I can catch you up.

Daddy has not had a fever in quite some time. The only problem with his nose is the tube that goes down it into his stomach. He has tried to remove it multiple times. The feeding tube could not be inserted directly into his stomach and Dr Hartigan, his surgeon, said he would not open him back up just for that. There is a smaller feeding tube that can be inserted through his nose into his stomach if needed. He has developed a yeast infection on his tongue and doesn't want the medicine put on to clear it up. He will let the nurses do it sometimes. Yesterday I pried his mouth open for them to finish. Have instructed todays nurse to do the same. Speech therapy took him to radiology yesterday for a swallow test which he failed. He did not like the taste or consistancy of the barium they wanted him to swallow so he told them no. Today we are allowed to give him water on a small sponge on a stick. He wants the cup but is not allowed. We gave him the stick this morning and he threw it on the floor. I got very stern with him and told him that was not acceptable behavior. If he wanted water, he would do it my way or not get any. Later he accepted the stick a few times. His heart rate and BP are doing good. THE VENT IS GONE!!!!! He has been weaned down to 28% oxygen which is almost like breathing room air. The trach cuff was changed Tuesday morning to a smaller size and the cuff deflated. Respiratory put a Passy-Miur valve on his trach which allows him to talk and we can understand most of what he says. His kidneys are working just fine. Blood sugar is doing well. Finger sticks are now every 4 hours, instead of every hour or two, and the insulin IV is gone. But he does get the insulin shots which he does not like. Last week his bowels stopped working. The tube feedings were stopped and he was put back on TPA for nutrition. A CT scan showed no obstruction. Fortunately over the weekend they started working again. Tube feeding have not resumed yet. Yesterday a stool culture was done and last night his room became an isolation room - he now has C-diff, a type of bacterial infection that is contagious. We must now wash our hands and put on gowns and gloves to go into his room. Physical and occupational therapy are working with him. He is up in the cardiac chair at least once a day.

Now to today .... It has all happened very quickly but we believe daddy will be transfered to Specialty Hospital either today or in the morning. Specialty is a rehab hospital where he will be taught to swallow, eat, care for himself and get him walking again. I believe he will eventually go home and that the trach is not permanent and will be able to be removed. My step mother is reluctant for him to go, she worries that it's too soon. She is comfortable in our little "bubble" here at St Lukes. I told her it is time to get her and daddy our of the comfort zone so we can get him home.

Since my last update I have been spending a great deal of time in the room with daddy. He knows where he is but doesn't understand all that has happened or needs to happen before he can return home. He asks a lot of questions and is confused at times. It is difficult for some of my family to be stern and unwavering when daddy doesn't want to do what he is told. I have no problem being the bad guy and standing my ground. I want him out of hear as soon as possible and will do what it takes to push him along. Wayne did come down last week for 5 days. It was wonderful to spend so much time with him and still spend my days at the hospital. We got to see fireworks twice and spend some quality time together.

I am hoping once daddy is transfered, gets situated and starts all his therapies, I will be able to go home. Wayne and I talked about this today. Will have to wait and see. I may need to stay to be the strong push he needs to get him home. I am praying God will make that direction clear for me. I am weary but still sure I am right where I am suppose to be doing what I am suppose to do.

Please pray that this is the right time to be moving daddy and for peace for my family during this transition.

Praying for clear direction.