Great news at last!

Hey all,

So I know I haven't posted in a while. First I feel like there hasn't really been any news, and we have been finishing up our house and just moved in yesterday!

That isn't the great news though... Dad went to see Dr. Mulvihill up at the Huntsman and he got his last 2 drains removed and was told that he didn't need the IV antibiotics anymore!!!! And, the doc thought that they should remove the feeding tube and send dad home on Monday. WOW! So, I think dad is going to have them remove the feeding tube, but he better be ready to do some serious eating or he is going to end up having it put back in... I think it will be a lot easier to eat at home. The hospital food make him nauseous ;)

The not so good news is that he does still have cancer in his lymph nodes, like we already knew, and the docs think he should start chemo in the next 2-4 weeks :( It is obviously his choice and they said he could just wait and watch for symptoms and have regular checkups and scans/blood work. I don't think he is going to be ready in 2-4 weeks. He is down to 158 pounds and has a lot of recovering still to do. Not sure what to think about the whole chemo things. Ultimately I guess it is up to him.

Anyway, thanks for all the visits to Dad. It means a lot to him. He gets VERY lonely down there in Orem. Love you all!

Just quickly...

Docs didn't see anything on the CAT scan. Dad is still having the pain, but other than that is doing well. Well enough to call me every night to check and see what we are up to. Almost back to his old self ;)

So dad has been doing pretty well since his move to River Bend minus a couple of issues. His Hematocrit did drop down to 22 and he had to get 2 units of blood transfused, and he has been having a new pain in his left side. It has been going on for about 3 days and so today the docs decided to do a CAT scan. He had to be transported to some Orem community hospital to have that done and we never did get the results today.

So, I guess he is doing okay. I would think if the scan showed something bad they would have made sure to pass on the results...

A change of scenery!

Hey all! Sorry I didn't post before now. We have been very busy finishing our wood floors the last few days...

So! Dad got moved to Utah Valley Specialty Hospital yesterday! His white count never went back up and he is feeling pretty good. So, this is a huge step in the right direction, home!

The hospital is located in the Riverwoods commercial development right at the mouth of Provo Canyon, only 25 minutes from Midway, which is awesome. He is in room 208 and here is the address:

306 West River Bend Lane Provo, Utah 84604
(801) 226-8880

We are calling it River Bend for short :) No one will be spending the night with him there and mom won't be with him all day, everyday anymore, so if anyone feels the desire to visit I know he would love it! It is really good for him.

Thanks for your endless prayers. Love you all!

So, dad is doing okay. Not great improvements, but not really any worse. So, that is good. He hasn't gone backwards for almost 3 days now :)

Friday his white count had gone down to 10, and then yesterday and today it was down to 8. So improvement! His hematocrit has gotten kind of low again, but they haven't had to give him another blood transfusion yet. I think they are hoping to send him to the long term facility on Tuesday, as long as things continue to improve.

He has been able to go walking outside a little bit and that has felt really good. I think this warmth and sunshine has been good for all of us :) Happy Spring!

Hey all,

Sorry it has been a few days. I only have a few minutes but I know so many of you are waiting for news. VERY quickly:

Wednesday-WBC count down (hurray!) and had a good day. Ate more than he had for a long time.
Thursday-WBC back up (BOO!) and had a crappy morning at least.
Friday-From my very brief update from mom, WBC back down a little, bleeding quite a bit around one of his drains, and plan is to keep him over the weekend at Huntsman...

Sorry not very detailed. Not very fun to post when things seem to be up and down every other day... Praying he will beat this stinkin infection.

Love you all!

So, Dad's WBC count was up even more today, so they did another CAT scan. It looked like the 2 large areas of infection from last Friday were smaller, but one other area was not shrinking and so they did another paracentesis (sp?) and drained a bunch of fluid and placed a 3rd drain up between two of his ribs. This is causing him a bit of pain, but all in all everyone seems pretty positive. In general the CAT scan looked better than all of the previous scans, and he feels better today than yesterday. I think he seems better in general than when I was with him on Friday.

SO...one day at time! Lets pray for a lower WBC count tomorrow :) If all goes well they are talking about sending him to the long term facility on Friday.

By the way, the doctors have been very attentive since our meeting last Friday ;) To say the least, we were very bold in voicing our frustration and our desire for better communication. It's nice...

Again?

Hey All,

So... my dad was supposed to be moved to the long term acute care hospital today, BUT his white count was up AGAIN. Will this poor man ever get some good news that lasts??? He just isn't feeling all that well either. Even he's not sure if it is because he really isn't feeling well, or if is just because he is down in the dumps. He ate a single piece of cantelope (sp?) today and had to have a puke bucket nearby. Docs said if it doesn't go down tomorrow morning they will do another CAT scan...

Just in case you have been contemplating it, he does enjoy visitors :)

Sorry that is it for tonight. I know I said I would fill you in on the meeting. Maybe tomorrow...

Love ya,
Darcy

Some answers finally

Hey All,

This is going to be quick for now, but I am exhausted and ready to climb into bed. After and hour and 45 minutes of grilling the doctor my dad will be staying the weekend and then most likely be moved to a step-down hospital (between a hospital and skilled nursing facility) for long term acute care. Sorry for being short. I will try to fill you in more tomorrow evening.

Darcy

They can't be serious!

Sorry I haven't posted any results from yesterday. I still feel like I don't have any answers....

This is what I do know:

They did a Cat Scan and must have seen some fluid pockets (wouldn't know because the docs never showed their faces)

They did an image guided placement of drains and saw, according to my dad only, 2 grapefruit sized abscesses and a bunch of small ones. They placed 2 drains and it sounds like these areas are higher up than the last infected area. Not a single doctor showed their face yesterday to explain or answer questions, since 6:00 a.m. when they said his white count was up. It is so hard being home!!!! I feel so helpless.

This morning they came in and told my mom this: He will still probably go home this weekend, but he will go home with the PICC line and be on 1 month of IV antibiotics, he will go home with his 2 belly drains and the feeding tube!!!!!!!!!!!!!!!! AND he has a bit of a fever this morning. Am I nuts or does this sound asinine?!!!!

Hoping to get some more answers today. I wish I could be a bug in my mom's ear and give her cues of what to say when, like "What are you thinking you.......?!!!!!" My mom is too nice....

Thanks for letting me vent. Am I out of line?

Another set-back?

I just got a call from my mom and my dad's white count is up again. Infection somewhere...

So, they are preparing now to do another CT scan, have started him on more IV antibiotics and are HOPING that it is just a urinary tract infection, not more infection elsewhere. Hopefully we will have more answers this afternoon.

Boooo!