Update #5-October

 My last update left off at the end of September, having been admitted to the hospital again on Sept. 22^nd for pneumonia due to a Listeria infection.  If you missed that update you can always scroll to the bottom of the blog and click on “Older Posts”.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My doctors were ready to discharge me, however I still required about 3 more weeks of the heavy-duty antibiotics.  Before discharge, I needed to have what’s called a PICC line placed.  This would allow me to have the IV antibiotics administered at home.  The first attempt didn’t quite work out with my anatomy, so a group of doctors from Intervention Radiology came in the following day while I was eating lunch to discuss the placement of a tunneled PICC line.  After they left, Scott and I got the impression they were going to schedule it for that day, but because I was eating, they postponed until the following day. I was not allowed to eat anything before the placement of the catheter, as it would require some meds to have me in a “Twilight” state. 

On Saturday, October 1^st, I had the Tunnel PICC placed in my chest at 9am that morning.  After recovering from that, I had my 5^th biopsy and a right heart cath that afternoon, so still no eating.  I had to lie flat for 4 hours after that procedure because they ended up having to go through my groin instead of my arm for the right heart cath-again, my illustrious anatomy!  The biopsy/cath was schedule at 4pm and I was back to my room at 7:30. I was allowed to eat, but because I couldn’t sit up yet, it made it very difficult.  Somehow it worked out.  I’m pretty sure Scott fed me!   The results of the biopsy and cath were positive- still no rejection despite the infection.  Below are some pictures of the Tunnel PICC.

Anatomy of Tunnel PICC

I was released from the hospital the following day back to our condo.  The kids and my mom joined us at our condo the next day and I had a few days to spend with the kids before they returned home on Friday.  It was so good to see them and I was amazed at how much they had grown and matured.  They decorated the condo for Halloween and gave me ideas to decorate my mask so it wouldn't look so scary when I was out and about.  They also enjoyed the pool and spa facilities during this visit.  We were able to take them to Half Moon Bay one day and it just so happened that our friends were vacationing in Half Moon Bay.  The dads took the kids to a nearby beach to play, while I caught up with my sweet friend Brandi.  I hadn’t seen her since before the transplant, but she has been an integral part of Leah and Nolan’s life while I’ve been gone.

Nolan's Pumpkin Decorating

Leah's Pumpkin Decorating

One happy mama!

Decorated Hepa Mask-with hair accessory

Leah's version of hair accessory-more stylish

Kids enjoying pool

My mom and the kids left on Friday, and Scott and I celebrated our 16^th wedding anniversary with a quiet dinner at the condo. This picture was taken on October 7th, but I'm not sure why Scott and I didn't take a photo together.

We finished out the week with another biopsy with no rejection.  Then Scott was able to go home for a couple of days, as our counter-tops for our kitchen remodel were to be installed.  My amazing friend Robin blasted down for one night until my Dad & step-mom, Louise, arrived as my weekend caregivers. It was good to see them, as if you recall, their last visit down was the day of transplant and I remember nothing from that day!  We had an enjoyable visit and Scott joined us Saturday night to spend some time with them as well, before they left on Sunday.

I met with the infectious disease doctor on Monday, who transitioned me from the IV meds to oral antibiotics for 3 more weeks.  Our only dilemma at this point was trying to schedule to get the Tunnel PICC removed.  A nurse could not do it and we had to schedule it with interventional radiology.  I was told it could stay in (unattached to IV of course) for another week or so, but I insisted I really wanted it removed so I could take a decent shower.  My steri-strips on my incision had finally fallen off during my re-admission to the hospital, and I could finally reach to the top of my head to wash my own hair.  But the PICC line proved challenging to shower as I was not to have any water get into the site where the PICC was placed, and it was an ordeal to cover it with this water proof plastic bandage.  

My awesome transplant coordinator ended up getting us an appointment on Wednesday to have it removed.  Hallelujah, thank you Jesus.  I had to wait one day after the removal before showering but it was a very luxurious shower!

Chris brought the kids down that afternoon, and my sister flew in from Chicago that evening.  After a yummy BBQ dinner that we “door dashed”; Chris, Scott and Nolan went home. Leah stayed with Lisa and me for a girl’s weekend.  It was quite lovely.  On Sunday my friend Chandra was visiting family in the bay area, so she picked up Leah and brought her home.  This gave Lisa and I the opportunity for some much needed sister time (I don't have any pictures from this trip with my sister though but I do have a few with Leah and I.) 

Girls Time 

My oldest brother, Guy, happened to be on in the bay area doing one of his bicycle/camp excursions.  He called to see if he could come visit on Sunday as well.  The three of us had a great time catching up and it was good for us to have some time together.  We rarely just have the three of us without anyone else around.  After he left to go home, Lisa and I began our sister time.

My mom arrived the next day and Lisa flew out late that afternoon, or so we thought.  Turns out her flight was delayed several times then finally cancelled, so she caught an UBER back to the condo and and the three of us had more time to spend together that evening, another rarity.  Lisa caught an early flight out the next day.

Mom and I hung out for the week and we also had some quality one-on-one time.  She took me to my next “Spa Day” at Stanford on Thursday, Oct. 27^th.  That evening, my weekend caregiver arrived, Tatjana, Scott’s cousin’s wife.  Mom stayed with us for the evening and then my step-dad came to pick her up the following morning.

Tatjana and I spent much of the weekend like a typical “girls weekend”.  We watched a mini-series, worked on projects and ate well! My caregiving needs were diminishing week by week as I began to complete some tasks on my own. I still couldn’t bend over if I dropped something.  My hands were still too shaky to give myself the insulin injections, and some household chores were a bit challenging.  I’ve been very grateful for all my caregivers that have taken time out of their schedules to come down to Foster City to help Scott and me out.

To finish off the month of October, I must end with Halloween.  Here are pictures of my pioneer girl and Obi Wan Kenobi.  Chris kept up with our normal trick-or-treating tradition at a friend’s home in Cameron Park and the kids had a blast.

My song of choice for this post!  I couldn't find a video with the lyrics.  I've posted a link to the official video below the lyrics for those who want to listen to the song.  The video has portions of the animated move-Meet the Robinsons.

Little Wonders

Rob Thomas

Let it go
Let it roll right off your shoulder
Don't you know
The hardest part is over?
Let it in
Let your clarity define you
In the end
We will only just remember how it feels

Our lives are made
In these small hours
These little wonders
These twists and turns of fate
Time falls away
But these small hours
These small hours still remain

Let it slide
Let your troubles fall behind you
Let it shine
Until you feel it all around you
And I don't mind
If it's me you need to turn to
We'll get by
It's the heart that really matters in the end

Our lives are made
In these small hours
These little wonders
These twists and turns of fate
Time falls away
But these small hours
These small hours still remain

All of my regret
Will wash away some how
But I can not forget
The way I feel right now

In these small hours
These little wonders
These twists and turns of fate
These twists and turns of fate
Time falls away, but these small hours
These small hours, still remain
They still remain
These little wonders
These twists and turns of fate
Time falls away
But these small hours
These little wonders still remain

These Small Hours Video