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Sunday, June 23, 2019

#30 Two down....



Pre-op
Seems like it took forever to happen, but surgery on LJ's kidney is complete.  I will admit it has been stressful waiting.  You want the surgery to go well, but you hope they didn't wait too long.  But, at least it's over.  As I write, LJ is still in the hospital.  His surgery was four days ago, on the 20th of June.  It took a little over two hours.  I got a phone call from the OR nurse during the surgery telling me everything was going well.  I was happy they did that.  Makes the waiting a little easier.  I wasn't alone, though.  Bruce and Kathryn Clark came and sat with me for support.  

I wasn't able to see him after surgery.  While in recovery, he was choking and having difficulty breathing.  He was sent to ICU for observation.  They made me go home, which I did.  LJ and I have always agreed to stay out of the way and let the staff do their thing.  Scooter had been alone for over 6 hours and needed to potty...I was just going to sit in a hard chair in the waiting room and at home I was only ten minutes away.  I didn't sleep well at all that first night and was back at the hospital early the next morning.  

He seemed fine when I got there.  He was confused as to why he was in ICU so I told him what they told me.  We did learn that during all of this, while in recovery, somehow his feeding tube got pulled out so they had to put in another one.  He was blissfully unaware of them doing it, but knew it had been done.  Probably not a bad thing since the original one had been in there four months and the little stopper on top was getting weak.  He was happy to get the catheter out they had put in for surgery.  So now it was just heal and go home.  While in ICU we were visited by a nutritionist who spelled out his tube feedings and the Urologists NP ( he was in surgery).  She told us what he needed to do to go home and explained it takes a week or two to get the pathology back on the kidney.

While I was there, LJ had a furry visitor.  Maggie the therapy dog came to see him.  She's very sweet and sees all the patients in the hospital she can.  Of course she ignored him and sat by me, hahaha.

He did well the rest of the day and was able to breath and cough without assistance so they decided to put him in a normal hospital room.  I expected it to be a semi-private room but the nurse told us they don't even have semi-private rooms except on one floor.  She said they rarely use them.  So off to a private room with a view of the rooftop ventilation we went.  We had talked to the nutritionist and he wasn't to get any food, only IV fluids, until Saturday.  He did say his throat, surprisingly, felt better than before the surgery.  We are thinking maybe the intubation removed some of the muck that was in there (from the radiation).   He was having a little difficulty peeing so I told him not to wait if he can't go...tell the nurse.  He kicked me out once he got up there so he could rest, so off I went.  In the meantime, after I left, Bruce and Kath came in and immediately texted me about his feeding.  To make a long story short, back to the hospital I went to sort it all out.  Discovered LJ (chemo brain) was confused as to how much and when he was to get fed.  So after talking it over, the nurse and I were on the same page.  And we learned LJ gets confused easily.  They had placed a new catheter right after I left the first time since he was struggling to pee.  He went back to sleep and I went back home.  Another restless night for me.  According to him he slept like a baby, mainly because he didn't have to get up and pee every hour, lol.

Saturday we saw his Urologist.  He's a great guy.  He gave us his personal cell number in case we need to talk directly to him or have any concerns.  He said the surgery went well but the kidney was covered in masses, making it a little difficult to remove.  They took the right kidney, some surrounding tissue and some lymph nodes.  He said he saw nothing to indicate the cancer had spread.  It seems confined to the kidney only.  We won't know for sure until the pathology, but he felt pretty good about it.  LJ has good remaining kidney function it seems.  He will stay in the hospital until the "numbers" are where they want them, but he is improving every time they test so that's good.  LJ's left kidney has a couple small spots on it.  Doc says they won't freeze or section those until that kidney is doing well on it's own, probably a couple months.  He said there is no concern about those spreading as kidney cancer is very slow growing.  We are not to worry.

He feels the aggressive throat cancer and the right kidney were the most concerning and now that they have been addressed, it should be all up hill from here!

Now for the OMG really? part of the story.  You know there had to be one, right?  It us, after all.  

So night one in the regular room (Friday)...He tells me he almost killed the night nurse.  This from the guy who treats his nurses very well, lol.  Apparently he started choking and gagging on the buildup in his throat.  He can't breathe.  Nurse comes in and says "oh, I'll come back"!  He says he's reaching out for her, gagging, and she walks out of the room.  Now, in her defense, he was coughing, too, so ....  But she probably could have stayed, just in case.  He gets it under control.  A few minutes later it happens again.  She comes in again.......and leaves again.  When he got it under control again, I guess she came back to do her nightly check.  He of course read her the riot act.  I'm sure he used small four letter words and she put the "AH" sign on the door to warn the others, but he was right.  Why she left while he was choking is beyond me.  Of course he tells me about it the next morning when I get there.  I'm not happy but what's done is done.  He's ok now.  The day nurses are fine....or are they.....

The rest of Saturday goes well.  He's up and walking.  Still has the catheter and IV, but he's doing fine.  BP is high, but he's been off his meds for four days.  They started him back Saturday afternoon. At his request, so he can rest, I leave.  We text later.  He's doing fine.  Another restless night for me....He slept just fine.  Fortunately no overnight choking.  All is good with the world.

I went and saw him this morning (Sunday).  They have removed the bandages.  Little incisions, so scars won't be too bad.  The NP told him the catheter stays until he sees the doc after he is discharged.  Still no increase in food or the required passing of gas, so he can't go home.  He sends me on a mission to find a lighted hand mirror. (It has to do with his throat..don't ask, lol)

I was gone about two hours, running errands, looking for the elusive just right mirror.  I get back to the hospital with the mirror and walk into his room.  He is having a "chat" with the day nurse.  Oh geesh....

So as the story goes... He is up doing his walk.  He walks by the nurses having lunch.  In his words, he lingered there..because, you know.. food..

He gets back to the room and decides to brush his teeth.  At some point the IV becomes detached (at the connection, not the vein). He is now spewing blood everywhere.  He calls for the nurse.  They answer their phone "May I help you?"  Why yes.. my IV has disconnected and I'm bleeding profusely all over the place and am pretty sure I'm going to bleed to death.  "Ok..I'll tell your nurse."  He manages to get the IV put back together to stop the bleeding.  He looks at the clock and ten minutes has gone by.  Now, if he hadn't put it back together, I don't know exactly how much blood he would have lost.  He calls again.  "How can I help you?"  Repeat... "Oh, well your nurse is at lunch.  I'll be sure to tell her when she comes back". click.  So when I get in the room, his day nurse is back from lunch and in there hearing the story.  He made it clear he did not blame her but colorfully told her how he felt about the nurse who ignored him.  He said "What does she think?   I'm not seated in her section, so I don't get service?"  Poor nurse apologized profusely.  He did make it clear it was not her fault but it would probably be a good idea to keep the other one in protective custody.  Yea, I'm sure that was good for his blood pressure.  Oh well.  He's fine now.  They fixed his IV.  He kicked me out because the whole thing made him tired... Sigh.....so here I am.  Watching baseball and updating the blog, lol.

So,  for now this is where we stand:
Throat and thyroid cancer radiated and chemo given
Kidney cancer - Bad one gone, good one on standby for treatment
We won't know how successful everything has been until next month when they re-scan him, but fingers crossed.







House is moving forward...only a month to go.  They took down the fencing so it's actually starting to look like a home and not a model. 

Scooter is a little confused as to why dad left with me and didn't come back with me.  He keeps looking for him.  He lays on the couch looking sad.  Then he sees a fly, barks, gives chase and forgets he's sad.  He does sleep on LJs pillow at night, though.  He's eating, drinking and bringing me his toy to play, so he'll be fine.
And that's the way things are in the James' world.  Keep him in your thoughts and prayers.  I appreciate all the messages.  Forgive me if I don't have a chance to respond.    I'll just leave you with a Noah picture.  Can't wait to be able to see him in person.  Wonder if he cries with an English accent, HA!   Love you all!

NOAH!!
5 months old!!

Friday, June 7, 2019

#29 Day by Day


No matter what you might be going through individually or as a family, the world just keeps turning.  Sometimes you want it to stop...like when I realize how fast all our grandchildren are growing up.  Little great grandson Noah is 4 1/2 months old already!  Another grandchild, Brady, graduated from High School and is getting ready to go to the Military.  Seems like only yesterday his dad was Noah's age lol.




Speaking of time, it's hard to believe it's been a year since the last SSD Reunion.  This year seems like it will be bigger with more going on.  Twice as many people have RSVP'd to the BBQ.  Lots of folks just coming for the day, and that's all right!  I just am happy people have a chance to see old friends and reconnect with folks.  Tomorrow isn't promised so take advantage of today!  Sadly we can't attend this year's event.

LJ is unable to make the trip. (More on him in a bit). So, the show goes on with a new ringmaster, lol.  Thank you Jane Keys for taking care of the reunion in my absence.  I know it will go off without a hitch.  We will be there for next year, though!  Can't wait to see the picture from this year's event.  This is last year, which was the first one.  I put it together on a whim.  Glad I did.




Now on to LJ... This photo is from our cruise a couple of years ago.
I miss that guy.  I do have to say, mentally he is more like his old self every day.  Sadly physically, not much is changing.  For some reason his throat (on the inside) is just not healing.  He still, after 8 weeks can't eat on his own, only getting nutrition through the feeding tube.  He is able to drink water, so that's a beginning.  One day a few weeks ago he actually drank a shake, but then the pain was just so bad he couldn't do it again.  We have seen his ENT who didn't really like what he was seeing when he ran the scope down his throat.  But, we are hoping it is just still swollen.  He did refer us to a Head and Neck Surgeon so we have made an appointment for after the middle of July, when, hopefully we will have his PET results.  No cancer...we can cancel the appointment.  But if it's still there, that's the next step.  It is such a specialty practice that our ENT wanted the appointment made right away as they are very hard to get.  Certainly hope we can avoid any throat surgery.

In addition to that, he went for his pre-op appointment for his upcoming kidney surgery.  The GP didn't like what he saw on the EKG, so we were referred to a cardiologist.  Cardiologist didn't like what HE saw on his EKG and wanted to be sure he could take the surgery.  So he sent him for an echocardiogram and a Nuclear Stress Test.  Well, needless to say we were both muttering WTF next when we left his office.  He told us it could be an after affect of the chemo..nothing..or a blockage.  The test would tell us.  So over the last week that's what we were doing.  Tests.  HAPPPPPPPPY to say yesterday the cardiologist told him his heart is great.  No issues.  Cleared for the surgery and doesn't need to see him again for a year (and that's only because at his age it's a good idea).  I literally skipped out of the docs office.  FINALLY a doctor visit went our way.

So next week he does more pre-op at the hospital, then on the 20th he has his right kidney removed.  His kidney surgeon was hoping the feeding tube would be out, but said, while it's harder and required a large incision, he can do it with it in.  Once this hurdle is jumped then we can focus solely on his throat and why he isn't able to eat.   July and the PET is right around the corner but so far away.

Speaking of July...they finally totally closed the model and have obtained the permits to turn the office back into a garage.  So they start all of that next week.  I have been dreading trying to find time to make all of LJs medical appointments and care for him, along with finding time to buy furniture so we have something to sit on once we get in the house.  Stress is an understatement.  Then the builder offered us everything in the house...decor, furniture..everything... at a ridiculously low price.  Now I am always skeptical of model home furniture, but most of this furniture is decent quality.  We had looked it over carefully when they originally offered individual pieces for sale.  I even found some of the furniture on line and priced the brands.  Their original asking price for some items was great...other stuff priced equivalent to new.  We gave it thought, decided to buy a few odds and ends but get our furniture new.  But with this offer... it was a no brainer.  Now we get everything for the price we were going to pay for a few pieces lol.  It takes the heat off of me.  It is totally decorated and furnished, so other than mattresses, televisions and a recliner for LJ it is good to go.  Even plates and glasses hahaha.  I am so relieved.  Now I can literally take my time and decorate each room slowly with what I want later.  And it's not like I don't like what's in there or the colors, because I do.  It's just now the pressure is off.  There's even outside chairs for the pool, lol.  Downside to them working on the house is Scooter and I can't visit for the next five weeks while they work on it.  Dang it.



Scooter is doing well.

He got a new chair so he's happy.  It's just like mom's hahahaha.

He tries to look out the window in the RV, but he's so small he has to stand on his hind legs with his feet on the window sill, lol. So, to make it easy, I made him a pillow pyramid.  Now he can lay in his little bed and look out the window easily.

It's starting to get too hot to be outside so this is good for him.  He watches the world go by and barks at the occasional bird or dog.

It does get hot here in AZ.  We've had a few days over 100 already.  You learn to get up early and be done with shopping, etc., by 10 am.  I will say this Momentum Toy Hauler has great AC.  It has three of them so the trailer stays very comfortable.  It may be 110 outside.. but it's 78 in the house as Bruce always says HA!

So, that's kind of where we are at the moment.  Day by Day.  Wanting time to stop for grandkids...speed up for LJ's recovery.  I'm looking forward to life being normal again.  But in the meantime, thankful we are doing ok, especially under the circumstances.  Cherishing every minute with LJ.  I'll update again after his surgery.  Keep us in your thoughts and hopefully, one day soon, we will be back on the road...or in the pool 😀