Medical Update

Gene had his 2nd to last "regular" appointment at the GI Clinic Friday. The reason it is the 2nd, not the last, is that the wound on his chest has decided to start seeping again this week. Doctor Kukar was sort of dumbfounded as to why it was doing this since the last catscan showed a minor amount of liquid in his chest cavity.

Doctor needs to talk with the GI Oncology Department to see if and when Gene will need to see them. He said that this is such a rare form of Cancer that there may be some new info out there that the Oncology Department has that he hasn't seen yet.

Before Gene had his surgery he met with Dr Ma from this department about what type of chemotherapy or radiation he would need. Dr Ma said that when this surgery was successful there was nothing left cancerous so he didn't know why he would need anything. But, Dr Ma will be leaving Roswell Park Cancer Institute on May 1 for Mayo Clinic. So we will see who Gene needs to meet with this time. 

Dr Kukar's "Espresso" Doily

This time I took the doilies I had made for Dr K, Dr Al-Sukhni and Maureen, since I didn't know if and when we would be going back.

Maureen and Dr Kukar both liked theirs. Dr K said his wife would really like it since she likes "things like this."

Maureen Brady's "Summer Splendor" Doily

Dr Al-Sukhni was in Brazil, as in South America, so Maureen said she would put hers on her desk so she will have it as soon as she returns.

Dr Al-Sukhni's "Caprice" Doily

Last night Gene said he thought they were really surprised when I gave the doilies to them. I think so too. They probably don't get handmade things from the patients very often.

The Check's In The Mail

Well, really not the check, but Gene did get a soft package from Roswell Park today. He gave it to me and as I'm feeling it wondering what it was, I said to Gene, "We didn't leave your underwear there, did we? How about a pair of socks?"

Now, I knew we didn't. When he went into surgery they gave me all of the clothes he wore in. I took them home, washed them and took them back for when he got to come home. So I KNOW he only had one shirt, one pair of sweatpants, one pair of underwear and one pair of socks. So I was REALLY confused.

When I opened it, this is what was rolled up in it. This was the note that came in it. I was just amazed. I wonder how many hats they had to mail out?

How great of New Era, a local hat company that is known through out the US, had donated the hats, along with the Buffalo Sabres and Roswell of sending these hats out. 

Now, Gene isn't a hat wearer but I'll bet he wears this next winter when it is cold in Indiana.

Two Down, Two to Go

Yesterday was a Red Letter Day.

We saw Maureen, Dr Kukar's PA (he was in surgery while we were there.) She checked all drains and was very pleased. Gene has lost 6 pounds this past week, she was concerned about this. So back to Phlebotomy for more blood work to check the Albumin (which has something to do with the protein in your blood) and white blood cell count.

Since it always takes a little while (but no where close to the "several days" it takes to get blood work results in a normal blood draw outside of a hospital) we went to the cafeteria to see what was on the menu that Gene wanted to eat, or could eat. When I saw that they had "beef on weck," (a Buffalo specialty of roast beef on a kimmelweck roll) I knew we had hit them on a good day. This is one of the food that we both love.

While we were in Phlebotomy, Maureen talked to the dietitian about Gene's continual weight loss while eating close to the amount of calories he needs. (Have you ever tried to eat a 2000 calorie diet while only allowed 40 grams of fat . . pretty hard. We have not accomplished it yet.) We found out later that the dietitian thinks his body is still losing the weight he needed to lose when he went into surgery, not much needed body mass for healing.

When we got back into the Clinic, Maureen said she had talked to Dr Kukar about everything she had seen and the blood work, white blood cell count was elevated but they both thought that this came from the "jiggling" around of the front drain (for some reason now  the tube from the drain always seems to be in the way and it is getting moved around) and the healing process of the open chest wound.

He said to go ahead and remove the back drain since it had not expressed and noticeable fluid since March 1. MUSIC TO OUR EARS ! ! ! !

It looks like there is some puss in the opening but it isn't. .
I tried to express any fluid that night be there
when I changed the dressing last night.
Not a drop came out.

I hadn't been there when they removed tube #1, so I was VERY interested to see what this was like. Maureen told Gene that he shouldn't feel any pain, just a strange feeling of something moving. While it was coming out, he didn't wince at all and aid he just felt a strange feeling, but no pain at all. I was amazed that the inner tube was a lot shorter than the PICC tube I watched being removed from his upper arm. But, it had a larger diameter.

So now he is down to the original right front drain from the surgery on Jan 25 and the Penrose drain in the open wound at the top of the incision from the "surprise" expulsion of Pancreatic Fluid on Feb 29.

We got a call, around 5:00 pm, from Maureen. She and Dr Kukar had talked after he got out of surgery. She said Dr. was THRILLED with how well Gene is doing. So THRILLED that  he thinks the last drain, which is expressing enough for the "hand grenade" to be emptied twice a day where it had originally needed to be emptied every 2 hours, can come out. But, since it still is expressing enough fluid to be drained twice a day, he wants to "wean" the it off. So, Gene goes in Tuesday morning and the pull the tubing part way out. Then he goes back on Friday to have it totally removed when Dr Kukar can be there.

Also, he said Gene can eat more than 40 calories of fat a day, as long as his body can tolerate it. The dietitian also thinks this change in his diet will slow down the weekly weight loss.

Today we are going back to the gym to set up an appointment with Charlotte, who is their exercise specialist who graduated from Canisius College with a degree in Sports Medicine/Sports Psychology. She also is a certified Athletic Trainer and is certified in Strength and Conditioning (she is the Strength and Conditioning coach for the Jr Sabres Hockey team.) So she will be able to develop a program for Gene that will allow him to start building up his muscles in a way that won't compromise what he has been through.

Another Day Is In The Books

Early in the afternoon we had our 1st scare of the day. Gene felt the pads around his front right drain and they were wet. Not what they are supposed to do. I took of the padding and, sure enough, their was a leak where the tube enters the body. I wiped the skin off and then around the drain. Nothing else came out BUT the tube going into the "hand grenade" was dripping inside the grenade at the same rate it was coming out of the area around the tube. Too weird.

Then, around 4-ish, I was taking a nap and Gene calls me from the bathroom. The tube going to the same "hand grenade" was full of watery red blood. Damn It! Called Dr Kukar and he said he would call and see about beds at Roswell and call u back. By 6:00 we hadn't heard back and the drain was now draining normal yellowy-tan liquid. So I got in my jammies. About 8 we get a call from Dr K, he was at a conference in Boston. He asked how it was going and I told him it was back to normal. He said "If it happens again, call Roswell and ask for Dr Turner who is on call this weekend. I've explained what is going on. She will admit him."

So, now it is wait and check.

Gene thinks that when the Home Health Care Nurse checked the drains this morning he wiggled them harder than normal and it caused some bleeding inside. This is what he thinks happened the last time he got grenade of red blood only it was a different nurse, but both were male. I decided that I would remove, clean and replace the dressings the next time an unknown nurse shows up. 

Gross! Yes I said GROSS!

Read at your own risk. 

If you are one with a weak stomach 

do not read this posting. 

Are you still reading? 

If so, remember, 

you have been

W*A*R*N*E*D ! ! ! !

This story starts out very simple. On Saturday morning, Gene found a bump to the right of the top of his incision. It was in the area of staples 4 - 6. I had never seen a hernia but have heard that they happen where a muscle i weak or torn. Well I would think an incision would make the muscle weak, don't you?

Now he couldn't have found it, or it couldn't have been noticeable when his Home Health Care Nurse (who comes 3 times a week if he isn't in the hospital) was here so she could let us know what it might be.

It hurt him a little, but he said not in a painful way, just a noticeable way. I still thought it was a hernia, he thought it was an infection.

Monday morning the Dietitian did a home visit. She was pleased at what we have been doing. So we were rather pleased with ourselves when she left.

For some reason Gene lifted up his shirt and that bump looked more like a cyst ready to open. The head was all green/yellow looking. (Oh yeah, when this opens it is going to be gross ! ! ! !)

Home Health Care Nurse comes about 11:30. Gene wants her to look at the "bump/cyst" and it opens. Man, did it ever open. I swear, green/yellow pussy looking stuff came out of it like it was a Niagara Falls. It just kept coming and coming, gauze pad after gauze pad, trying to catch the ooze before it ran down his belly. I ended up getting two cloth diapers (that I have had since my Tavish was a puppy and I used them to line her kennel instead of newspapers) thinking they would soak up the ooze better than the gauze. They did. We had one full, so I threw it away. It was so full I didn't want to even touch it let alone wash it. The 2nd one, basically, sopped up what remained.

While I'm holding the diaper on Gene, Tabatha, HHC nurse, called the GO Clinic to see what we  needed to do. I ended up talking with Jenny, that we saw last week when he had the blood come from the drain, and she said to come in to the clinic ASAP, making sure to stop at phlebotomy before the clinic. "How soon can you be here," she said. 

My answer, "We will see you in 45 minutes."

It was 11:45 am, almost the same time as we called last week for the bloody drain. We were reporting into the GI Clinic at 12:30 . . . 45 minute. Cha-ching! Right on the dot.

The bandaging that Tabatha had put on was leaking so when Jenny took of the dressing it was pretty nasty. (Just thought, all the time it oozed there was never a smell . . odd.) She laid a new dressing on top of it and called Maureen to see it.

Maureen showed up and knew she had to aspirate it. Gene was in some pain while she was doing this but he knew it had to be drained. When she couldn't get anything else out she took a pix and sent it to the doctor. She said, "He just has to see everything that goes on" with a smile.

By this time she had gone into the opening with Q-tips and finger to see if she could figure out where this ooze came from.

Pretty soon he shows up. We find out that this ooze was Pancreatic Fluid. He said it looks for the "road of least resistance" to get out of the body and, for some reason, this was easier than going out through one of the drains. 

It needed to be cleaned out more, so this meant two small cuts from the top and bottom of the openings, right where the incision was. Lidocane didn't numb him well, but he told her to cut it anyway.

She worked and worked to get every little part of the ooze out of the cavity that was now exposed. When she was finished, Dr Kukar came in to take a look into the opening and feel around to find the opening where all of the  ooze came from. Maureen showed him the vicinity so he didn't have to poke and prod. 

When he was done he asked the nurse to call Wound Care to help out. He then took a piece of gauze and packed the cavity. I watched because I knew I would be doing it the next day. By now a member of the Kim, from the Wound Care team,was here now. They discussed how to wrap it. Dr said he didn't want it sealed. He wanted whatever was in the cavity to "wick up through the gauze."

Kim ended up spraying something around the wound that would allow the tape to b e removed easier, then placed a thick gauze pad over it and taped three sides, left the top open.

Now the GROSS part . . . and you thought what I wrote before was gross.

I had to clean it this morning. I asked Gene if he wanted to take the one Oxycodone pill ($0.67 at the Roswell Pharmacy) that they had sent home with him for pain before I started probing and poking in it. He didn't so, after we got the other three drains emptied, the only shot he needs to take administered and did the finger stick for his blood sugar I told him to lie down on the sofa. He said, "No." I repeated and so did he.

When I looked at him he was smiling. I knew that meant that he didn't want to have it done, but knew he had to.

This is what I saw once the bandages came off. Not really as bad as I though. I told Gene I had seen worse when the stitches in Mom's leg tore and she ended up in the ER waiting to get more stitches. It really is interesting seeing what is under the skin when it is clean without blood.

Tomorrow we go back to the GI Clinic for Gene's normal appointment with Maureen (Dr Kukar  will be gone.) We will see if I get a good grade on my nursing skills :)

More Cleaning

Today was a scheduled appointment to the GI Clinic for Gene. Dr Kukar was going to be gone so Gene was to meet with Maureen, his Physicians Assistant.

Things started out fairly well. He wasn't pleased to have to get more blood work. They wanted to see what his white blood cell count was. Monday it was 12. Today it was down to 10 so that count is going the way they want.

Both Maureen and Dr Al-Sukhni came in to check Gene out. Maureen opened the dressing on the wound from Monday and explained to Dr Sukhni what had transpired. After checking it out both Maureen and Dr Al-Sukhni thought Gene needed to get another Catscan to see if any liquid was still pooling up somewhere in the chest. They sent a text to Dr Kukar and he felt the same way. The inner part of the wound had started to heal and they didn't want it to do this until everything had been drained out.

Back into the clinic we went after the Catscan. This time the nurse brings in  an Oxycodone for him to take. He knew they were going to be probing into the wound since they sent this to him. He was right. 

I was sitting to the side of the exam room and could feel everything that happened to Gene. The worse part was when Dr Al-Sukhni pushed her "pointy finger" into the wound trying to open the small drain that had been in the wound on Monday. It took her a couple of times but she got it done.

Poor Gene, I am surprised they didn't have to scrape him off the ceiling with this. 

Next came the lidocane and numbing shots, which never work that great on Gene . . . just like the Oxycodone doesn't do much for him either.

Dr Al-Sukhni cleaned and cleaned out the wound and the "crap" that was still in the 5 cm wound. Not a lot came out, but she is sure more is in there, from the reading of the Catscan.

She put a Penrose drain into the "hole" she had made with her finger and then used one suture to hold it in. Next came the gauze to pack around the drain and a couple packs of gauze and a compress to go over it. The gauze is to catch any drainage from the Penrose tube. Hopefully it doesn't need drained until tomorrow but I will need to check it tonight, just in case.

Nest scheduled appointment is next Wednesday, March 9 at 12:30. Today we were at Roswell from 10:15 to 5:00. Hope we don't have to stay that long next week. Hopefully  next week will be in and out with, perhaps, taking out one of the drains he has had since he left the hospital AND the Penrose drain.

Home Again . . . . LOLOL

Gene got to come home this morning. Dr Al-Suhkni said that the latest blood work that Gene had were better than when he left Roswell on Friday, Feb 19.

Only suggestion is to take it easier than when he came  home last time. 

So, I guess we won't have any hour or so walking sessions :)

Home Again, Home Again, Jiggity Jig Day 4 . . . NOT! ! ! ! !

He's Back ! ! ! ! !

This is what came out of his back drain about 11:30 this morning. I had already emptied it twice (8:30 and 9:30) that had about the same amount only it was normal colored.

I debated with myself whether to call Dr Kukar. (He had given me his cell number in case something happened that I thought he needed to know.) Gene didn't think so it looked that bad but he didn't realize what it really looked like. Plus, there was a clot of blood, almost the size of a quarter, in the drain. Now how it ever got through a tube about the size of a steel crochet hook is a mystery to me.

He said he would check and see if their was a bed available for him to be admitted and would get back with me.

About 10 - 15 minutes later I get a call from Maureen, his Physicians Assistant, asking me all kinds of questions. She wanted to see us in the GI Clinic and said we were to stop by phlebotomy before seeing them.

So 45 minutes after I had talked to her we were waiting for Gene to get his blood work done. Next we were in the GI clinic so between my phone call from Maureen to waiting to get into the clinic was 1 hour (+/-).

We Saw Jackie, one of the nurses, who got all of his vitals

Next Maureen, the PA showed up. She said she had been in surgery with Dr Kukar when she called us. She asked all kinds of questions and, of course, I had left his drainage log at home (taking it in tomorrow) so I tried to remember what I could. I got out the container with what I had drained out earlier and she drained what had accumulated in the "hand grenade" at the end of the drainage tube. It was VERY DARK RED and the clot came out in pieces.

When she left Dr Kukar came in. I apologized for calling him and he said I had done exactly what he wanted me to do. I had caught him with the  phone call right as he was prepping for surgery . . then I felt REALLY bad.

I showed him the container, the contents had gotten darker by now, and explained about the "clot" that had been in the "grenade" which had come out in the other container next to the one I brought in.

He sent Gene down for another catscan, fourth one since he had surgery.

When we got back to the GI clinic after the scan he explained the "worse case scenario" for this color of drainage. I can not remember the name he said but I know when he said it (either a vein or artery) that it was a major one. During the surgery he had to clamp it off and stitch it up. If  there was fluid pooling under it and touching the clamp it could erode( not his word, but a similar meaning) which would cause a major leak and if not caught son enough the patient could bleed out. If caught in time, the patient would need to be rushed into surgery and get it cauterized and h ope it was caught in time.

HOLY SHIT ! ! ! ! !Now I am SO THRILLED that I called him when I did.

He told us that when the radiologist read the catscan he saw no leaking arteries or veins but he would keep going over the scans just in case it was a minor vein that didn't show up well.

After explaining all of this he said he wanted to readmit Gene for 24 - 48 hours to see what that back drain produces. That made me breathe a sigh of relief. Not that we are out of the woods but that he is back where he can be watched closely and not have a wife who is freaking out that something major may be happening. And I know if Gene came home tonight  he wouldn't have slept. And probably wouldn't sleep until he saw Dr Kukar at his appointment on Friday.

So, back to daily drives to Roswell to see what's happening now. But, before I go tomorrow I MUST stop by City Hall to turn n some paperwork and then to the post office to mail some of his bills to American Fidelity, similar to AFLAC. Thank God I took out this insurance when I did. I had never used it and have paid premiums for more years than I can remember. But, if they can help us out at all it will be more than worth it.

Home Again, Home Again Jiggety Jig - Day 4

Well, we haven't killed each other yet :)

I wasn't so sure we would make it this far on Saturday. Neither one of us slept worth a darn Friday night. I suppose we were both wondering what, if anything, would happen with Gene upstairs in bed when the bathroom was downstairs with 13 steps in between them.

We both got up somewhere in the middle of the night . . notice I didn't say we woke up . . . not sure how asleep we were. I knew I wanted to be with Gene on the stairs when he went up and down them so I went downstairs too. I honestly can't remember if we drained the "hand grenades" that are at the end of the drain tubes. But I do know that we both spent the rest of the night on the living room sofas. 

Poor Indy, wanted to sleep on the love seat with me. When I would move to stretch out as much as I could she growled. Totally unlike her. She was, I am sure, still trying to figure out what was going on . . . Gene home after 26 days and we are both on the sofas, not upstairs in bed.

During the day I found out that neither one of us had much patience with our "situation." But, again, we survived.

Can't really remember Sunday so it must have been a smooth part of the road on this "journey" we are on.

Now Monday . . . Oh, Monday! 

Gene decided to wash up. He still isn't to sure of his leg getting into or out of the shower so he did his home version of a hospital bath. Then to shave. Since he is still on a for of Heparin he can't use his normal razor to shave. So he got out the electric razor I bought while he was in Roswell. He hadn't cleaned it out while there so he took it apart to clean it. That wasn't bad but the putting it back together was a Royal Pain ! ! ! ! !

Now, while he is trying to do all of this I am trying to:

1. Test his blood sugar to see how his Pancreas is dealing with the fat/sugar in his diet. This has to be done before breakfast, lunch and dinner.
2. Record blood sugar level in a daily log and get the Insulin Pen, wipe for the skin and gauze to wipe off the 1st blood before the blood test ready just in case he does need the insulin.
3. Get the one shot ready . . . can't remember what it is for BUT he only gets it once a day so that is one plus!
4. Get the 1/2 dose of the Heparin like shot out of the refrigerator (needs to be kept cold and away from light so it is not only in the fridge it is in a brown zip-lock bag. (This is a three time a day shot no matter what.)

Two of the worse parts for me in the morning procedure:

1. Getting enough blood out of the "stick" for the blood sugar test. I have reset the depth of the stick so, hopefully, we can get the blood easier.
2. Giving the "fridge" shot. This is the one shot that hurt Gene while he was in the hospital. It never got any better. It just stings no matter where we "shoot" him. It also is a harder syringe to use. When I give this one my insides "cringe". For some reason my mind seems to hear the needle push into the arm. Then, I can actually feel the liquid going under the skin when it is injected. Makes me cringe just  thinking of it.

I know I will be giving him these two shots for some time. Doctor said the Pancreas will seal/heal itself so it will quit leaking but I have no idea when/if he will be able to quit the insulin. Hopefully he will not need to take it from now on. Yes, if he has to it will happen but if I had a preference . . . . 

Gene goes back to the doctor this Friday (Feb. 26). I must remember to ask him how long he will be getting the "fridge" shot to prevent blood clots. 

Last post I mentioned that he walked all over WalMart the afternoon he got out of the hospital. Yesterday we went to Sam's Club thinking we could find the small packages of cereal, individual fruit juice drinks and different fruit in natural juice like he got at the hospital. (We are working so hard to get him 2000 calories with 40 grams of fat a day into his diet.) We walked the entire Sam's Club food section and were amazed at how little they had that we wanted. This was a real bummer. The one we used to go to in Indiana had a deli (this one didn't so no turkey breast for lunch), items packaged for restaurant sale (like the cereal we were looking for) and small appliances (our toaster broke . . . unless you physically hold the "button" down so it will toast which must take 5 minutes to toast a slice of bread now and this Sam's only had one toaster oven WAY to big for our house.)

So yesterday was not to great for us in the shopping area for Gene BUT we did find cat food and dog chews so it wasn't a total loss :)

Home Again, Home Again Jiggety Jig

Friday Update . . .
I think we left Roswell about 1:30. Gene wanted to go with me to WalMart to pick up groceries. He made it through, but he was POOPED when he got home. Those trips around the floor hadn't prepared him for a "normal" grocery trip. But he did make it through like a trooper.

As I was carrying in grocery bags Gene was sitting at the kitchen table. He commented, "Wish I could help you." (He really was exhausted).

My response, "So do I." LOLOL


Drained one of the drains . . . first job done.

Tested for blood sugar, and administered Insulin . . . second job done.

Microwaved a D*E*L*I*C*I*O*U*S Healthy Choice Salisbury Steak Dinner . . . third job done.

Unpacked all of the supplies and medicines that we brought home . . . fourth job done.

Nothing to do now until bedtime shots smile emoticon

Watching Sabres Hockey now, so we are back to semi normal.

Oh, Indy smelled him from head to toe . . . well, as close as she could get to his head.

Then, all of a sudden, when he was eating supper she took her Gingerbread boy toy and just shook the shit out of it. Then, she started chasing the cats all over the house. This is what she does when she is excited to see someone, she plays rough with her toys and chases the cats . . . poor cats:( LOLOL

Now, time to sit back and enjoy a nice quiet evening, until he gets mad at the hockey game smile emoticon