Scott's Update

Scott is doing better, I think the TPN is making him a bit stronger, he still lacks energy, his stomach gives him trouble at times. He spends most of the day lying down, watching TV with Scruffy, yes, it's going to be a long month, let's just hope the cyst gets drained ASAP!! He is missing food, I think it's all the TV commericals!

No Packers on TV here in RF today, we are blacked out due to Vikings game at the same time, we will be listening on the radio, who knows....maybe a win??? Scott said a win would just help the Vikes...so what do you do???
Remember....Packers GOOD/Vikings BAD...We won't go by team records this year :-)

Next Sunday is our 29th wedding anniversary...where have all the years went??

Have a good week, get all that holiday shopping done, I'm doing mine via the internet - it's great.

Roxane

We heard from Dr. Sielaff's office today, after he reviewed Scott's last CT scan, he has decided to drain the cyst on Monday!! We don't have a lot of the details yet, but Scott will be there with "bells on". He might be eating a turkey dinner sooner than we thought!! :-)

Roxane & Scott

Scott's surgery went very well today. The procedure took less than the expected one hour. The cyst is draining into a bag that is attached by tubing, from about his upper/middle stomach area. We will call Dr. Sielaff's office tomorrow to get our next visit arranged. In the mean time we will just montior the drainage at home. Scott will stay on TPN feeding until he is back to "normal" eating again. This surgery is a "wait and see what happens next", but Dr. Sielaff seemed very confident that this is the right treatment, and improvement should be rapid.

Our home RN will visit tomorrow for the weekly blood draw and changing of Scott's chest port needle.

He is resting right now, it's been a long day for him.

Thanks for all the thoughts and prayers heading our way!!

Roxane & Scott

Scott was admitted to Fairview-University hospital today by Dr. Greeno. After our visit in Hudson with Dr. McCann they both agreed that Scott should be hospitalized.

Scott's blood work levels require strong antibiotics. He also had a CT tonight, we will get results tomorrow.

More as we know it.

Roxane

Just wanted to let you all know that they plan to do another procedure today to check on the tube that was inserted on Monday perhaps it has a kink?? Also, they believe that another cyst has abcessed and it causing the trouble with Scott's blood counts. He is to get a blood transfusion later today also.

He is resting well, and we are all more comfortable that he is in the hands of a very capable staff.

The kids and I and Kyle are hanging around here at the U.

More later as we know it, sorry that it has taken me so long to blog today, but we have been waiting for the plan.

Roxane

Scott had another CT Scan and ultrasound today looking at the pseudocyst and the placement of the drain from Monday's procedure. It has been determined that the drain is in the correct location for the draining, and will work fine (no kinks) so that is a relief. The exam was about a
1 1/2 hour, with a lot of pushing and poking around. Scott said he feels like the Doctor did a very good job, and worked with him all the time by talking and explaining and making him as comfortable as he could.

They are giving Scott some blood now as I type, I am home for the evening, it sounds like it will be a busy room for the nurses tonight between Scott's treatment and his roomates.

We should hear some more tomorrow, regarding the adjustment they are making to Scott's TPN feeding, he needs some more calories. We are hoping for better numbers regarding his blood counts, and a general better feeling.

Keep the good wishes heading Scott's way!!

Roxane

I'm at the clinic now, nothing much has changed from yesterday that I know of so far. We are thinking Scott will be in the hospital over the weekend, but nothing is set for sure yet.

Our NP, Tanya was been in today, but she is still waiting for some answers from tests yet.

Roxane

As it stands now...we THINK Scott will be coming home tomorrow. It has changed a couple times today, but if all goes well he will be checking out of the hospital by noon on Saturday. I guess I cannot really say that Scott has improved a lot, but he is stable, and blood tests are showing improvement due to the antibiotics, he is still very tired and weak, spending 98% of his time in bed lying down.

We are scheduled to go back for a follow-up appointment with Dr. Greeno and our NP, Tanya on Monday. We expect to get some news regarding blood tests and cultures they have done. Thursday will be a follow-up CT scan, we are hoping to see healing taking place at the abcess spots (2) they see on his liver, they believe that these two spots are the reason for the infection, probably nothing from the drain tube being inserted caused the problems of this week, except the pain around this spot on his tummy.

An RN from our home nursing group will be here when we get home to train us on caring for the drain and instruct us on giving the antibotics by IV, the TPN has also been increased to help Scott perhaps gain weight & strength, he is still not able to eat any food or take more than a sip of water with his pills.

We think we will have our work cut out for us the next week or so. Let's hope to ring in the New Year with improved health for Scott!!! It will be nice to have him home and comfortable.

Roxane

We got home about 2pm on Saturday. Our visiting RN met us at the door; she got us all up to speed on the new procedures with his additional treatment.

The first night went well. Scott's antibiotic is added to his IV @ 6a/12p/6p/12a - the full dose is in an infusion ball, we remove it one hour later, let's hope this drug will knock out the infection, he still runs a low grade fever at times, we are hoping by Thursday that the scans will show much improvement.

His strength seems to have picked up a bit, he is talking more, even a couple jokes. He still has pain and is on meds for that, the drugs seem to control it well.

All is going well, I am happy to have him home, no going out in the cold and driving up to the U, we are just tucked in warm and cozy at home.

Roxane

Things are going along pretty much as expected; according to Dr. Greeno, Scott asked him if he was causing a lot more paper work...he said yes, but that's ok. The liver cysts will take a while to heal, the pseudocyst a while to drain. Due to Scott's low strength right now, perhaps a little longer.

We go for a CT sometime this week, when I checked today, they said it was cancelled?? We will be called tomorrow in the a.m. to reschedule. The surgeon will decide when the tube can be removed, and will check the positioning and drainage again. Dr. Greeno expects the antibiotics to take 10-14 days of treatment.

All fluids removed tested negative for cancer, Dr. Greeno said they were looking around for signs of recurrence and they see none!!!

So we are happy with the reports, just wishing Scott would feel better soon, but I guess it will be a while yet. We are scheduled to be back at the clinic January 3rd.

Thanks for reading our blog and sending all your thoughts and prayers our way, it has been a rough week or two for sure, we were very reassured today...slow and steady wins the race :-)

Roxane

As we were getting ready to go to Scott's appointments today, I hear - oh no!!! Scott accidentally pulled out his drain while he was getting dressed!!!

He was already not feeling well, another restless night of aches and pains, and not finding that comfortable position. A phone call to the clinic sent us up for the CT a little earlier, unfortunately there were a few emergencies in front of us, we could wait a bit since Scott did not have additional pain or draining from the site. Soon we were in the CT room, the doctor spoke with us right after the procedure, he said the drain would not be put back in, the pseudo cyst had mostly drained already, which was good, the bad news is that there is another area of fluid that is probably causing some pain too, the spot they would need to go in at is between two ribs, the Dr. thought Scott would be in more pain doing the procedure. His suggestion is that we wait 2 weeks and rescan, unless there is a high fever, then we come right back, and something is done immediately.

I called Dr. Greeno's office to let them know what the result of the CT and recommendation was and they wanted us to come over for a visit. Dr. Greeno called Dr. Sielaff and they decided that next week Scott will have a gastric emptying study done (Monday), due to some swelling/fluid in the stomach/duodenum area. Another CT will be done on Wednesday, Scott has a followup appointment with Tanya, NP. Once they get all the info together another plan will be developed. We were happy to be home about 4:30.

We plan to spend Christmas Eve at home this year; Claire will make our family visits in CF on Saturday and head back home on Christmas Day to have dinner with us and Ben & Jen, (Kyle is keeping EC safe this holiday weekend) We will have fun watching the dogs and just hanging out at home enjoying the day.

It warmed up here today, in the high 30's, it must be because we have the Florida Krause's visiting in CF for a long weekend!!

Take Care Everyone...enjoy your families, have safe traveling, and eat too much good food!!

Merry Christmas - Roxane & Scott

Dad made his way to Fairview today for a test on his stomach. Due to the weakness in his stomach they were unable to perform the testing, it was discovered that his hemoglobin count was very low and he was quickly moved to the emergency room and ICU.

Right now he has been admitted to the hospital and just finished a CT scan. My mom is waiting for him in his new room Claire, Jen and I are on the way there as well.

My Mom says he is weak but stable, we will keep everyone up to date as we can. I'm sure under the hospital care they can get this figured out and the weight loss and stomach problems turned around.

-Ben

Scott is stable, but very weak. They are still monitoring his hemoglobin (which is moving up nicely) and blood sugar (still higher than they want). They are working on issues with cyst fluid building up. There could be another CT scan today and possibly a procedure tomorrow to check out the fluid. We have a lot of good Doc's helping us out. Scott may be moved out of the ICU today, and back up to the oncology floor here at Fairview.

More as I know it.

Roxane

Scott is being moved out of the ICU to unit 6A in a bit this evening, we do not know a room # yet. Tomorrow the plan is to have fluid drained and cultured, after the test results are back, additions to the plan will be made.

Today has been a day of close monitoring for Scott, they also added another central line IV "pic line" in his arm to aid in giving antibiotics.

If you would like to send Scott a e-card the hospital has a web site, they deliver the ecard to the patients daily if received before 2 pm - next day if later.

web address - http://www.fairview.university.org click on "Send a Patient An E-mail"

If you are wondering about Scruff, he is spending a few days in Eau Claire with Kyle.

Thanks for all the thoughts and prayers heading our way.

Roxane & Scott
Ben & Jen & Claire

Things are improving today...the CT intervention was done @ 10 am, a drain was placed, and fluid taken to culture. Scott is resting well, and when he is awake is much more alert.

We are planning to spend the next several days here at the U-Fairview, and are happy with the improvements we see so far.

More news as we know it.

Roxane, Ben, Jen & Claire

Scott is doing better today, we did a few loops around the nurses station this a.m. He has been visited by PT/OT people to get a program set for at home reconditioning and strength building, he has lost a lot of his strength due to the weight loss and inactivity due to his general health.

Scott is still showing high numbers on sugar levels, so something new will probably be added to his meds or to the TPN. Dr. Greeno visited today, the infection is under control, the drugs seem to be doing there job so far, adjustments are still being made. As far as his cancer status, no sign of reoccurence, the doctors are going on the fact that this an infection from the pseudo cysts or the liver absesses.

Scott is more alert, but resting right now. We are SO thankful for all the excellent care we are receiving.

Roxane

Tomorrow Scott should have another CT scan to double check the drain placement and to check the progress of the draining. OT/PT should have a plan together for Scott of exercises we can do at home. We have a class to learn about testing his blood sugar. We will also learn the new schedule of antibiotics and additional medications.

Sounds like a busy day for Scott, he took another lap tonight, but still is very tired and really needs his rest time, his hemoglobin is still low, so a couple units of blood could be given before we go home also. Ruth, Scott's NP said..."maybe you will be out of here tomorrow"!! I am not ready for that, we will see what tomorrow brings besides the 3-5 inches of snow, perhaps we will be home on Saturday or Sunday??? I will keep you posted.

Thanks for all your emails, cards and encouraging words, Kyle brought Scruffy home tonight since it looks like things will back to a normal pace soon, if all goes as expected.

Roxane

Scott sure had a busy day today at the hospital; they were trying to get everything set so he can be sent home tomorrow.

They moved the drain to another spot to get more of the fluid, and will probably move it again next week, he will also have a gastric checkup to see if they can see why he is having the swallowing/stomach trouble. We attended a training class for the insulin usage, we are not sure if this will be permanent or just until Scott is done with the TPN treatment, regardless his sugar is too high at times so we learned how to check and give shots, a little scarey, but I'm sure we will get use to it, especially if this will help with healing.

Though he is still very weak, he is getting around slowly, he missed his nap today, so he was very, very tired when we left tonight about 6, he called me about 9 and said he had slept the whole time.

I will head to the hospital about 10 tomorrow and hopefully we will be out of there by 2 with all our new routine and new instructions.

Everyone enjoy your New Year's celebrations, we will enjoy being at home together!!

Roxane

We got home about 4pm today. We plan to spend a quiet evening.

Happy New Year to All!!

Roxane & Scott