Post Date: 8/2/06 6:13 pm
Just 24 hours ago I was complaining about the wait.
It is OVER. We went to Dr. Green's support group tonight and Brandi told us we had been approved. WHAT A RELIEF!!!!!
We will pre-op on Wednesday the 9th and have surgery on the 10th.
TOM'S BIRTHDAY PRESENT IS WLS SURGERY!!
Thanks for all the support
Tom and Que Rust
Post Date: 8/9/06 11:12 am
We had our final pre-op with Dr. Green this morning. He gave us a pop quiz of the things we have learned from his seminars. WE PASSED
Tomorrow we go to the Hospital at 9AM. We are so very excited we can hardly stand it.
See you on the other side
Tom and Que
Post Date: 8/13/06 5:20 am
We made it home yesterday around 2.
Tom was first on the surgical list and had to have an open RNY. It took 7 hours but it is done. His greatest fear was that the doc couldn't do it because he was too big.
That pushed the whole schedule back and I was last. I got in around 8pm and back to the room with Tom around midnight. We stayed an extra night because Tom was not doing so very well, but to be expected with an open procedure.
We are doing better. I can move a lot better than Tom. The dogs were very happy to see us.
Dr. Green was wonderful. The hospital staff was great. We had a good experience overall.
Love to you all and thanks for the prayers and good thoughts
Tom and Que
Post Date: 8/15/06 8:14 am
David: You make the days so much better. Love that positive attitude.
Azle is dry as a bone and thought yesterday we would get some rain. About 3
the sky went dark, the temp dropped from 101 to 89 in the blink of an eye. Alas no rain. Wish I had a sprinkler system, cant drag those hoses around the house now!!
Off the pain meds, getting back in touch with my new self. Can't say that for Tom, this has him thrown for a loop. Might move him to the chapel car or the hospital car and leave him there a while. Taking him to Doc tomorrow for check of the drains and maybe a pep talk about moving. Having real trouble getting him to walk.
Love to you all
Que & Tom Rust
The following is the first time I never signed both our names.. We are joined at the hip, and when I was going through these post I was startled by the fact that I left his name out.
Post Date: 8/17/06 12:37 am
Tom and I started this journey together, but with his open procedure we have had complications.
He has been in surgery again and is now in the critical care unit. Our surgeon has given a less than 50% chance of survival.
I need prayers and support please.
Post Date: 8/17/06 5:18 pm
I am so uplifted by your responses. Tom did not make any progress today in recovery. He did not slip back either. He is responding especially to our sons but of course that is what a Dad does. He follow simple commands (squeeze my finger, wiggle your toes etc.) and in my book that is pretty awesome.
He is on a vent and too weak for it to be removed. This will be the next major hurdle and I am told can be a long and exhausting process. Small Steps first. Big ones later.
Dr. Green is in Canada at a medical conference, has my cell number and has called more than once. He is do to return on Sunday evening. His assistant, Brandi, has called not only me but the CCU and Dr. Green to keep him informed. She is pleased with what they are telling her and that is so very comforting to me. She is also concerned that I should be in recovery mode myself and is worried I might dehydrate in this awful heat. I am aware of my body and I am OK. She has her spies looking out for me in the hospital.
Please continue the prayers for us and I will keep you informed. I hesitate to put details of the problem that occured here because I want ALL of the preops to understand this is not a typical outcome. This is a result of an open procedure and still saying that is not typical. I am told they have not really seen this one before.
THE TEXAS MESSAGE BOARD IS GREAT AND YOU ARE ALL IMPORTANT.
I am planning a very long sleep tonight to keep my strength up and am due back at the hospital by 8AM. Someone asked Plaza Medical Hospital in Fort Worth.
Our love to you all
Post Date: 8/20/06 10:18 am
I first want to thank you all for your support. I also want to remind Pre-Ops that they should take no stock in the complications Tom has had. Please do not allow what is happening to us to influence and decision you make.
We were totally unsuccessful in removing the vent. They only reduced the sedation and he became totally uncontrollable. He could not tolerate something, I do not know what and was back on sedation in less than 2 hours.
I spoke with the surgeon ( not Dr. Green) this am. They have changed several things. The most important of these changes is the vent. We have been moved to a vent that measures intake and outflow. I do no pretend to undersand but this should give them more control over the lungs which are not failling but are a "serious concern". We will consider in the next 2 weeks whether or not to put a trache in place.
They have idententified some major problems. A common staff (MRSA) is the most concerning. The antibiotics to cure this staff compromise the heart and kidneys. It is a necessary balancing act and a dance we have been to with Tom before.
We had a 2 week window to put Humpty Dumpty together again and have now offically missed that window. Our window is now 4-6 months.
Again I hesitate to go into detail for the pre-ops. There are other major conerns I will not go into. My cell number is 817-360-5737 for anyone who wants more info or wants to check on me more often.
I can only ask 2 things. Where do I get Isopure Protien? I am handling crystal light very well and would like to give that a try. I would love to try cheese but I am only 10 days post-op. Liquids only. Will you please keep Tom in your prayers?
My love to you all
PS forgive my typing brain is not totally engaged.
What is left out of the following post is that when Julie visited, the boys and I were planning his funeral with our Scoutmaster and very dear friend.
Post Date: 8/21/06 3:32 am
I was lucky enough to have an Angel visit with me and my family last night. She came in the form of Julie. She brought me a bottle of Isopure, some samples that smell wonderful, a shaker, a thermos and more love than any angel showed me before.
I was so very blessed by her visit.
Love to you all
This was the first time I laid out all the problems for the kids and his family. If you notice I asked for God's will. At this point I was convinced he would not survive. I needed the peace that letting go and giving it to God gave me.
Post Date: 8/22/06 6:42 pm
Today has been the most roller coaster day of this ordeal. I had awful nightmares last night. Got up and called the CCU and Tom's nurse talked me down. I went back to work, what a mistake.
At lunch I went to check on Tom and the deer in the headlights started. They called Dr. Green to come and talk to me. He was between surgeries. He wants to take Tom into surgery tomorrw to try and repair all this damage. Now remember Dr. Ziegler told me he was too Sick on Sunday and we could not do this. I was up for the long haul.
I paniced. Who was right? What do I do. I have to sign the consent form. Panic is all I could feel.
I gathered my two boys, my husband's sister and Mother and we started hashing it out. Mom was the only sane voice and said "Do the surgery. Every day we wait makes him weaker." Now mind you she is 80+yo and not always in the clearest of minds. But that simple statement mad it all better. He maybe my husband but she is his Mother.
The boys and I went for the 5PM visitation and found Dr. Z in his room working on his incision. He explained he was "cleaning up a few areas" and he would be out to talk to us shortly.
Already feeling better, we were conviced things would be OK. I had a chance to get both sides of the decision. He came to the waiting room sat down with us and proceed to tell us he would be with Dr. Green tomorrow. He said we needed all the experienced hands we could get for this procedure. WHAT A RELIEF.
There are still all the risks, including being unsuccessful or death. We are prepared for this. We are also so happy that he may not have to wait for the corrective surgery we are beside ourselves. We are willing to take the risks, and remember Tom and I have already talked out the "what ifs".
Bottom line, I need all the prayers you can muster once again. Most of all pray that God guides their hands. God's will is not a problem for me. I spoke with my nephew the GP several times today and he feels I am working from the point of survivor guilt. Mine went well, Tom's did not. He helped me work through the guilt.
Tomorrow at 1:30 we need those prayers. If you can pause in your busy day and just say one simple prayer it will mean the world to me.
Pray for God's will and love.
My love and thanks to you all.
Post Date: 8/23/06 10:30 pm
My thanks to you all for the lovely prayers. It worked. Thank you Julie for keeping everyone up to the minute. Teresa, the prayer chain was lovely.
I have never, ever in my life had this kind of support. TMB is the best.
Ok, on to the good news. The surgery did not end until after 10PM. Their are 2 very tired surgeons trying to explain all this to us. They had to hand stitch every suture, no staples or easy way out. It was evident that the staples were the problem. Dr. Green and Dr Zeigler were amazing. They overstiched all of the wounds. The amazing part of this is that ALL of the tissue from last weeks surgery was healthy. They had expected to find some that was dead but that was not the case. They started with an EGD liked what they saw and moved forward.
Just as they started to end the surgery a leak formed. That took another 2 hours but they were able to close it and get out. The wound is open and will require a wound vac to close which means the recovery will be long.
There are many more details but I am just too tired to get into them.
The main thing for today are prayers of thanks and hope. Now that feels really good.
My love to you all
Post Date: 8/24/06 10:58 am
I am late, but I am juming on. Tom is great this am. Nothing negative to report more on that later.
Had my first follow up with Dr. Green yesterday. Moving on to mush foods. My brother watched me turn mashed potatoes into potato soup at the hospital last night. He was amazed and I put some skim milk butter and salt in it and enjoyed every spoonful. YUM YUM
Had Cream of Oatmeal this morning. It was ok.
I am having a problem remembering the vits. Gottem today, 48oz fluid down, working on 49 grams of protien.
Almost sounds like I know what I am doing.!?!????
Hope Sheila continues to improve, what a bullet to dodge!!!
Nap time for me!!!!
Post Date: 8/24/06 11:20 am
I only slept 4 hours last night. Something woke me and sent me to the hospital.
He looks more like my DH that he has in the last 14 days. The body is an amazing thing. Three 6+hours surgeries in 14 days and now he looks better.
Most of you do not know that 2 years ago Tom had Necrotizing facities (never did learn to spell it.) It is the flesh eating disease. I handled the wound vac then. I know that territory. This wound is less than half the size of the one 2 years ago and looks very very healthy. Dr. Green allowed me to watch him change the dressing this am. I did not see any areas that needed debreadment and very little slough. (Sorry, that was for all of you med peeps out there.) I can handle this with one hand tied behind my back. God prepares us for what is coming I guess.
The vent is still a major problem. They lost it last night and had to replace it. All is well now. We have a Pulmonogist (can't spell that either.) He is backing off the sedation today in very very small amounts. Have to see how he reacts. He is now once again moving his legs and arms. Still no Squeeze my finger, wiggle your toes, that could be days away.
My heart is soaring and my body says sleep.
Had my 2wk follow up with Dr. Green yesterday. Down 18 pounds on his scale. First time I let them weigh me with tennis shoes on. I like weighing on my scale in my skivies. Down 24 pounds.
Starting soft foods. YumYum. Crushed meds are still a major problem for me. The gagging is awful. I can't remember the vits, although today I got them early. Protien problem is solved with the Isopure and the other bits I get thru the day.
I am at home in Azle with my dogs. We are taking one very long nap this afternoon.
See, It is all good.
"A Day without Tears" is what I titled this one. I am not sure if I was resigning myself to living without him or had cried all I could.
Post Date: 8/25/06 3:43 am
I woke up this morning and realized yesterday was a day without tears. It was just a thought that ran through my mind.
I have not been to the hospital today and Chris and I saw him around 6 last night. He was very peaceful, which means they increased the sedation. He still looks good, but we have to wean that sedation to get him off the vent. The wound vac is in place, got there just as they were applying it yesterday. It kind of looks like a lake with a lot of little feeder streams. There are 3 major wounds and a few smaller ones.
Will post more later after I see the army of Doctors. I slept from 8:30pm to 5:00am, gotta be a help for today.
My email is screwed. Will have to work on that sometime today.
My love and unending thanks to you all and the big guy upstairs.
Post Date: 8/26/06 12:30 pm
First let me apologize for all the spelling problems that follow. I do not have the education to spell these terms.
We are having problems with the vent. His left lung is not expanding correctly. He is not tolerating being off the vent. Tomorrow they are going to scope his left lung to see what the problem is. Best case is some mucus they can suction out. But so far, best case has been a problem.
Early next week they will put a trach in place. Translation, long recovery with the vent in place. The pulmonlogist says to start looking for a long term care hospital, but they told me that last week after the surgery to put him back together. I was just so hoping he could wake up and talk to me.
He is off the sedation but that is a trade off. He becomes very agitated and they are giving him mega doses of morphine and antivan to calm him. He is of course in pain but being agitated is the worst. I tried talking him down for 2 hours this morning with little success. The nurse finally told me he did not think Tom could hear me.
I did not sleep well last night. Woke up around 3:30 and could not go back to sleep no matter what I tried. I am a little down this afternoon. I stayed at the hospital until 11 and the doctor showed around 1. I am going back to the hospital later to sign the consent forms for tomorrow and check all the numbers.
I guess this is the way it is going to be for a while. One step forward two back. Sorry to be a bummer.
My thanks to you all.
Post Date: 8/28/06 7:24 pm
It was a very long and tiring day at the hospital. Tom's vital signs are good today.
Last night we had a real problem with his blood pressure. We were looking at stroke zone b/p's. He was extremely agitated and fighting all day. He is off the sedation which is a big plus but there is always a trade off. He is on a Morphine drip to control most of his reactions. The problem was getting the drip flow right and enough to keep him comfortable. It took about 2 hours to get to a level that made his b/p come down.
They were unable to do the procedure today. They are concerned that the sonogram guided procedure could result in puncturing a lung. Guess we will decide tomorrow if the chest x rays look better. Looks like the trache will be on Wed or Thur. This is a surgical procedure and will require moving him again.
I got there early and left around 4 when they cancelled the procedure. Came "home" took a 2 hour nap and feel better. Hope I can sleep past 3AM tonight.
I am praying I can make the coffee Saturday, I need some reinforcement my self.
Love to you all
Post Date: 8/29/06 4:52 pm
Not much to report today. He was peaceful all day. We did get him to not open his eyes, but blink without opening them. It was very exciting.
He is scheduled for surgery Thursday at 2. This will be for the trache. I know this will be better for him in recovery but Jeez this is tough. They have to move him to surgery and that is very scarey for me.
Ok, since you asked, I will give you some stats on me. Remember this is very bittersweet for me, we were supposed to do it together.
Started this journey at 276. I am now at 249. Twenty seven pounds gone forever.
I have lost 2 inches in both my boobs and waist. Those were the only measurements I checked today.
My protein and fluid intake along with the vitamins are way under control. I am topping 45-50 grams of protein, thanks to the Isopure and the samples I recieved from Julie and the ones from Ramon, Debra and the Pasadena support group. I know I need more it is just a time thing right now.
I am eating mush foods, ok, they call it pureed foods. Just really don't want them. The only time I feel the need to eat is when I am with family at mealtime. I get something close to what they have and mush it up. It is nice to have a varitey of tastes.
My knees have stopped hurting altogether. Don't even notice them. My right hip is still a problem but much better. I only notice it on steps. This is a big improvement for me since I was limping on that hip a lot.
My problems, sleep, energy, sanity. All could be resolved if I had my playmate with me.
That is the rest of the story.
Love to you all and thanks for your prayers and support.
The following post is from Julie, hope she does not mind I put it here. My response was typical. What was left out "the devil in the details" was complications with his kidneys and fever problems. Again they told me he would not make it.
Post Date: 8/29/06 8:40 pm
I hope you like this...
Sometimes we wonder, "What did I do to deserve this?" or
"Why did God have to do this to me?" Here is a wonderful explanation! A
daughter is telling her Mother how everything is going wrong, she's
failing algebra, her boyfriend broke up with her and her best friend is
Meanwhile, her Mother is baking a cake and asks her
daughter if she would like a snack, and the daughter says, "Absolutely
Mom, I love your cake."
"Here, have some cooking oil," her Mother offers. "Yuck"
says her daughter.
"How about a couple raw eggs?" "Gross, Mom!"
"Would you like some
flour then? Or maybe baking soda?" "Mom, those are all
To which the mother replies: "Yes, all those things seem
bad all by themselves. But when they are put together in the right way,
they make a wonderfully delicious cake!
God works the same way. Many times we wonder why He
would let us go through such bad and difficult times. But God knows that
when He puts these things all in His order, they always work for good!
We just have to trust Him and, eventually, they will all make something
God is crazy about you. He sends you flowers every
spring and a sunrise every morning.
Whenever you want to talk, He'll listen. He can live
anywhere in the universe, and He chose your heart.
Post Date: 8/30/06 4:18 am
Thank you. You continue to be my .
I have tried not to ask God why, I have asked everyone else. The problem is no one has an answer. I gave up asking. I have let go of that part. I am now trying to fight for him. Somehow I think he is going to be the poster child for complications and bouncing back. If I could write, maybe a book could be in the future.
I am thankful for everyday I have Tom with me. There are many decisions to be made now and I have to make sure they are the right ones. I have to trust in the Doctors and in the staff that takes such loving care of him.
Think we could make that cake with Splenda?
Love you lots
Post Date: 8/30/06 4:29 pm
Yep that pic you are looking at is my dear sweet Tom. It is my favorite pic of him. Thanks Rickol, I love it.
This morning I gave him a foot rub. I think he liked it, curled his toes. This afternoon they gave him extra morphine for some wound care so he is really out.
I signed the consent forms for the trache tomorrow. Will let you all know how it goes probably late since the surgery is not until 2.
Mush food, out side the box? Ok, you can all tell me how bad this is. My favorite fast food is Taco Bell. A beef burrito to be exact. I hate beans so I always order beef. I ordered one beef burrito, with green sauce, no red. Took it home opened that sucker up on a plate. Gave the dogs the tortillia and feasted on the best mush I have had in days. Chewed well, ate slow, picked out the big onions. Pouch is fine. No problems.
How bad is that?
It was really good.
Post Date: 8/31/06 6:07 pm
Got to the hospital early. Caught both surgeons. Did not catch the pulmonologist.
Mike, his nurse today, said the pneumonia is worse. Something they call Consentrating? Getting thicker is what I got out of it. Todays chest x rays show the lung whited out again. They are now thumping him every 2 hours, which by the way, he hates. They are suctioning constantly. Mike has made it his personal quest to clear that lung.
He was much more awake today than he has been since the second surgery. I said good morning and his eyes flew open. It was such a joy. I talked to him, knowing he is confused and scared, all I did was reassure him that we were taking very good care of him. IT WAS AWESOME. HE SQUEEZED MY HAND!!
Later my sister in law came in and when I told him Jill was here to see him, the eyes flew open again and he actually looked for her. We were able to stay with him alot.
Surgery for the trache was scheduled for 2 and as things go he made it at 5. Took exactly one hour and Dr. Zeigler was telling us he is ok. They were not able to put in the kind he can talk with, maybe later. I was so happy to see him after surgery. He looks so much better. More relaxed, of course he was heavily drugged, but just being able to close his mouth was awesome.
I am very tired, they do not make comfortable chairs for the waiting room. Think I will turn in early. Tomorrow is a dressing change for the wound vac. Roger, the wound care specialist, is going to let me watch. Remember, I have a lot of experience with wound care.
My love to you all, My thanks, and my prayers for all of us.