Happy to be home for awhile ...

 

We brought some masks home for the kids, thinking they might like to wear one like Grandpa.

 

Akleigh was anxious to wear one right away,  

 

 

but Auger needed a little more encouragement.

He did eventually put it on and had a fun time with it.

 

 

You might notice BrittanyJo and Anthony in the background - they are having so much fun with the new laptop we brought home.  We got one so that we could have one in our room.  I still have to occasionally go use the computer in the library because the lap top doesn't always fit my needs.  (I'm like that sometimes!)

 

We brought a mask for Elsie too, but she was not in favor of it, cute as it was on her.

She immediately pulled it off.

 

 

 

We enjoyed the weekend together listening to conference.

We found a fuzzy caterpillar too.

 

 

 

 

 

Remember You R Loved by Someone

We walked to the clinic today (because we cannot ride the shuttle with Terry in solitary confinement contact isolation) and found this on our way.

This chalk sign was just what we needed.  We had been praying that the doctors would coordinate and come up with a plan that everyone agreed on and that would be best for Terry and that there would be someone taking charge here for us.  We might have been asking a lot, but it was really needed.  We haven't seen the same doctor or nurse twice yet and things have just kept getting more and more confusing.  It seems that we have arrived at a time when all of our doctors and nurses are leaving for vacation, so someone is always standing in for someone else. 

We headed to the clinic today with hope that this would be a better day than the previous few.  This writing on the wall seemed to be the sign we needed.  I was so glad I had my camera with me, and I'm glad we actually walked to the clinic today so that we could see this writing. 

Someone does love us!  And someone loves you too!
How's that for the sights and sounds of Seattle?  Kinda cool huh?

We had a clinic visit with the doctors and this time everyone was on the same page.  Today we had a doctor that seemed to want to do what was best for Terry.  He was taking charge of the situation and accepting responsibility for decisions that needed to be made.  He also apologized for the confusion the last couple days and then let us know what the plan is from here.

We also kept our scheduled visit with the nutritionist.  We thought about skipping it after we left the doctors visit, but while talking to our scheduler the nutritionist came by and we decided we'd better keep it.  At least we'll have this visit done, but we know we will see her a few more times thru transplant.  We remember her from the first transplant and she said that she remembers us.

Let's move on to the info we received at our clinic visit -

The transplant is on hold until we get Terry's sinus issue cleared up.  Terry is presently taking a few different meds to help clear it up, and if they help and things look better we will continue with the plans for a transplant.  If however, his health has not improved we will meet with the ENT specialist, Dr. Davis, for surgery. 

So, tomorrow we go in for a blood draw and a quick visit with the charge nurse and if lab results look good we are free to go.  That means we will head home for a week, taking all of our things with us so we don't have to pay for the room the whole week.  So guess what I've been doing this evening ... packing up my scrapbooking things that I just got set up so nicely.  I guess I just needed something to keep me busy!  ;)  

We come back for appointments on the 13th for a blood draw, a visit with the charge nurse, and an infusion of platelets.  Terry's platelets have to be high enough for this operation to take place on the 14th. 

After these appointments they will put together a new plan for transplant and we will probably meet on the 15th to learn what that plan is. 

We are hoping and praying and praying and hoping that Terry gets better on his own so that he doesn't have to have this sinus surgery, but we will be prepared either way.

Wednesday Wondering

Well, it's been a crazy day today.  (Just to prove it, I posted this and read one comment on it, looked again and found that there was no post for today.  The same thing happened yesterday, so I've got to figure out what I'm doing wrong.  Luckily I got to a computer today where I could copy and paste from my email, the exact thing I had posted previously - which is more proof that it was posted.  What's up?  I can't figure it out! I hope it stays this time.)
 It seems that we are asked the same questions at every appointment, and we are thinking that they all need to read the memo.  Maybe it's not a matter or reading the memo - maybe it's a matter of sending the memo - who knows.  Anyway, at our 9:00 appointment we were told to go to the pharmacy for 3 more prescriptions that she had already sent in. 

We went to our 10:00 appointment and the two doctors there asked all the same questions again and listened to Terry's lungs and heart and looked into his nose and throat, all trying to determine if the transplant should take place as scheduled or be postponed a couple weeks.  They send in their suggestion and the doctors meet and try to determine what will be best.  There are so many different doctors and nurses and physicians of some sort here that it seems kind of confusing.

We left that appointment wondering what would happen next.  That is life around here!

We went to the pharmacy for the new prescriptions that were sent in that morning and found that they weren't actually sent in.  We waited about 30 to 40 minutes and I returned to the pharmacy window to hear that the doctors had stopped that order and we could not get any of those medicines.  That was confusing, so I went up to the 6th floor to ask someone what we were to do.

I learned that they had just contacted Terry about it, and that they were not sure what was going to happen at this point so they are not going to have him start those meds until they decide for sure.  Okay, too bad they didn't have that decided earlier.  Maybe they should have scheduled our appointments in a different order.  There are so many maybes here.

You might sense a bit of frustration in my post today, and if so, you would probably be right.  There are a few things causing that -
- We don't want to be here two more weeks under isolation.  We just learned that we cannot ride the shuttle when he is in isolation, so I'm going to have to drive back and forth each day. 
- We don't want to be away from the family for an extra couple weeks. 
- And, I took the shuttle (without Terry) to Safeway for distilled water and there wasn't any in the store.  I had to wait and return without it.  I guess I will just boil some water. ???

I think everyone at the clinic is confused right now and we are going to have to put up with it for awhile, until they can get their info all together and everyone gets on the same page.  It's finally so confusing that I wonder if it might happen soon because it seems that it cannot get any worse and they must all be feeling it by now.  We do have a clinic visit tomorrow with our team, so maybe they can get something figured out by then.  Until then, we'll just keep wondering ...

 Now, on the lighter side -

We saw the lady who performed Terry's EKG a few days ago and she mentioned to him that day that he was "cool".  There was a bit of fun started with that and she told us that when she would see us in the clinic she would recognize Terry as the "cool dude".  Well, she has seen Terry twice since then and each time she has said "there's the cool dude" - it's been a cute thing that brings a smile to our faces.

And one more cute thing --- we were sitting in the waiting room waiting for the second appointment today and a smaller older woman walked from the counter through the doorway into the hall.  Before she went through the door she looked over to the right and softly said hi.   That doesn't sound strange at all when you hear it like that, so let me show you who she said hi to.


She said hi to Doctor Thomas, the man in the frame.   ;)     She was looking down into her bag and quickly walking thru that doorway and something must have caught her attention, and she didn't want to be rude, so she looked over and said hi before realizing it wasn't a real person.  She was out of sight so quickly that I couldn't tell if she was laughing to herself or if she even realized what she had done, but it sure made me smile.

Smiles are good here.  We enjoy them!   Hope you have a few smiles today!

I'll sign off here, and head out to do some laundry.  :) 

Tuesday Visits

The first visit today was lab work. The gal doing the blood draw invited us into the room saying, "Your table is ready".  She giggled a bit after she said it, and mentioned that she used to work at a restaurant.  It was really cute.

Our next appointment was at UWMC with an Otolaryngology & Rhinology specialist, Dr. Davis.  We really like this guy.  It was a good visit, that we wish we would have had a few weeks ago.  The sad thing about this visit is that he thinks that Terry's sinus condition might cause a delay in transplant.  He put Terry on 3 different meds and a nasal wash, and also set an appointment for surgery to help open the sinuses if this medication doesn't help.  The meds he has already taken for it should have helped, but didn't, so he's trying to correct it in the best way and in the fastest way.  If the meds work, the surgery will not take place, so we're praying for the meds to work.  The doctors will talk and get back with us about whether it will delay the transplant and when we find out, we'll let you know.

Good news - we didn't have to go to the food safety class today.  Bad news - we will have to go to one another time.  Maybe if they served some fresh melon at the class we would enjoy going to it.  ;)  Chocolate might work too!   ;)

I unloaded the rest of the car today and set up my shelves and scrapbooking paper.  I didn't bring my table yet, so I'm kinda waiting to do any scrapbooking till next week.   By then we will hopefully feel a little more settled in and a little more relaxed, so that the scrapbooking will be a little more enjoyable.  We'll see!


Lunch today was BLT's made with fresh tomatoes we brought from our garden at home.  The tomatoes were beautiful and delicious - it made me happy.  I wish I had a photo of them, but I was trying to hurry to get lunch ready and didn't think of it in time.  Waiting for the bacon to cook was an easy time to take a photo, so here is a picture of the kitchen on the 2nd floor.  There are 5 counters like these, and usually there are at least 3 being used at the same time.

 

You can see the refrigerators and freezers along the back wall. They are for our use - we just put our name and room number on each item.  We haven't used those yet because our tiny fridge in the room is adequate for now, but we will probably need to use the bigger ones in the future. 

There are a lot of rules for sterilizing everything when we are done, so hopefully it's safe and clean.  They usually look pretty clean, though I've only used them about 3 times at this point.  The only cooking we can do in our room is with the microwave.  We cannot have a toaster or any other cooking appliance in our room.  We have brought a few things from home that we can warm in the microwave in our room, like Chicken Fiesta that we had tonight.  Mmmm!

It's nice to have this place here in the SCCA House, but I do miss an apartment where I can have my own space.  We are so grateful for shuttle service and for a garage for the car (that saves us up to 16 dollars a day and makes us feel much more safe). 

Have a great day!

A New Week Of Clinic Visits Begins ...

We had a great weekend at home with family.
We watched a great movie we'd been hoping to see for awhile - "Seven Days in Utopia".  We highly recommend it.

We are back in Seattle again, and have had a long day.

We stopped at Costco to purchase one item and arrived at the SCCA House just in time to warm up some (left over) pizza for lunch and then head to the clinic.

The drive was a bit hectic due to the rain.  At one point it was so hard that we had to slow to about 30-40 mph.  It was awful. We were so happy to get out of the weather. We are also quite happy to have the shuttle.

Our day at the clinic only involved 3 visits, but the last two were kinda hard on him today. 

Oral Med - visit with the dentist, because oral health is a big thing around here since there can be so many mouth sores or other issues with transplants.

Pulmonary Function Test - a breathing test that was kinda difficult and tricky with the cold/cough problem Terry is having.  He did good though! 

CT Scan - the contrast you have to drink is the hardest part for these types of things, but today the gal that inserted the IV did a terrible job at poking that vein.  It hurt more than it should have, and it's kinda ugly.

We got back to the House, brought a few things up from the car, put food stuffs away, made dinner, ate, and organized a bit.  We still have some things to bring up from the car (scrapbooking stuff) that I'll get another day when we aren't so tired.

It's a good day to have over!  Hope yours was a good one.

It's Friday!

We have had a busy day today, starting at 8:30 am ...

Blood Draw - 7 vials today, plus 2 cultures that required 10 ml each.

Oral Med - dental history and panorex X-ray.

Bone Marrow Aspiration and Biopsy - both sides this time, each with the marrow and the bone biopsy. Ouch!

Sinus CT - went well.

ECHO - the drive to this clinic was fairly easy to find, the hour and a half allotted for this procedure actually only took thirty minutes. The drive back was slow - we went about 13 miles in about 50 minutes. One fun thing we saw was a red traffic light smiling at us.  It's true - the light must have had some slight damage so that it looked much like a smiley face. It was a fun thing to see.  Happy Day!

Okay, we made it home tonight, and we are so happy to be here.

Today's Schedule

We spent the morning reading through the stacks of paperwork they sent home with us yesterday.  Consent forms and studies and all sorts of research they wish to do. We agreed to some of the extra blood samples and to all of the studies using the leftover specimens, but did not agree to extra bone marrows and skin biopsies or other specimens.  I think he is going thru enough right now, we don't need to add to it.

Appointments started at 1:30, and included these:

Mtg with financial rep - signed papers for help with the donor portion.

Mtg with social worker - she was a very kind and respectful person that assured us she was there to help in whatever way we might need throughout our stay.

EKG - quick and easy.

Conference - this is where we learned about what would take place. The doctor kept it short because we have some experience behind us.  This is where we signed the paperwork we read this morning.

The transplant conditioning will begin on the 12th of Oct. with the transplant taking place on the 16th.

Things have changed a bit since we came in July.  Most of what we learned then has changed.  We have now learned that things will go much like the first transplant experience, except that the transplant will take place in the hospital, but he will only be there that one night.

Terry presently has a bit of Dennis' blood, so after transplant he will have three different types of blood until this second donor takes over. We are planning that it is going to take over!

I'm sure we will learn more as we go along, but that's all I can think of for today.
Tomorrow they will keep us busy with blood draw, dental visit/x-rays, bone marrow biopsy, sinus CT, and ECHO at the UW Medicine Regional Heart Center in Edmunds.

Arrival Day

Our first day of visits at SCCA is over. We are back at the room and will soon get some dinner ready. Before we do that we thought we'd let you all know what happened at the clinic.

Registration - get in the system correctly, receive patient number, get packet for medical history (to fill out before next appointment).

Blood Draw - 12 vials today.

Lunch - back at our room.

Physical Exam - discuss history and present health conditions.

Nurse Visit - more personal health discussion, vitals, tour of the 6th floor, discuss schedule.

Lab Work - 

Chest  X-Ray -

Lab results:
Reds = 3.94(L)
Whites = 2.98(L)
Platelets = 49(L)
Neutrophils = .72(L)

We will have more results from the testing tomorrow.
Tomorrow's appointments include a visit with the financial rep, visit with the social worker,  an EKG,  and the Arrival Conference meeting with the doctor.

Last transplant we were on the orange team, but this time we are on the tan team.  This really doesn't mean much except that it tells us who cares for us (since there are so many doctors and nurses and others who help us).
Last transplant our team nurse was Eileen - we really liked her. She was our only help that stayed with us thru the whole thing.  She is suffering with brain cancer right now and not working.  Our team nurse this time is Pat.  We are quite sure that we are going to like her too.

We've got some paper work to read and sign - two binders full, so we better get reading ...

Oh, one more thing we learned today - our donor is a 38 year old female from Europe. That is the only thing we know about her.

Hey, maybe Terry will begin to like the colors of our new bathroom!  ;)