Day +24-Happy Halloween

It was so awesome to have Steven home.  I asked him how he slept last night thinking it would be awesome without anyone interrupting him, and he said he got up every 2 hours!  Not sure why be hopefully he will retrain his body to not get up for an invisible nurse.
A good friend left several boxes of disposable towels and a baby monitor on my doorstep yesterday!  Brilliant!  I've never seen these disposable towels before and they are perfect.  Steven isn't supposed to use a towel more than once.  The baby monitor is perfect for when we aren't in the same room.
I spent a good part of the day sanitizing dishes, cooking utensils, pots and pans.  What does he want for breakfast?  Toast.
I was a little nervous maintaining his Hickman catheter today.  It could be because we weren't in a hospital with a qualified RN standing nearby and a crash cart within reach.  It actually went well...he's still breathing, that's my confirmation.
He is pretty tired.  He wasn't expecting that.  We thought we would take a short walk around the block.  We didn't have to call MediVac but he was pretty done after that.  Baby steps.
Halloween has always been our high holiday.  Our neighborhood is so crazy amazing on this day.  Last year I gave out 500 pieces of candy.  I thought of so many things he could have gone as this year:  Mr. Magoo, Mr. Clean, a genie or Heisenberg from Breaking Bad.  Steven will stay inside this year with Koda.  He is supposed to avoid crowds, large numbers of people and close spaces with people.  My neighborhood qualifies for all of the above!  Happy Halloween!

Day +23-Welcome Home Steven!

Steven went home today!!!  He said it was surreal driving home.  But how did we get to this point???

Steven said the doctors would be arriving early.  I arrived at COH with an extra suitcase.  We accumulated a few extra things.  His WBC count dropped to 2.5 but his ANC was 1.6.

His nurse thought we were leaving so I started taking cards off the wall and packing his extra clean clothes.  The endocrinologist came in and said good luck.  The nutritionist came in and said good luck.  The pharmacist went over all our medications and said good luck.  The case manager came in and said good luck.  I went over to the pharmacy at COH to get the supplies to maintain the Hickman catheter.  No doctor.  I took a load to the car.  No doctor.  We watched a Patient Education movie about PICC/Hickman lines and I had another opportunity to demonstrate flushing his Hickman with saline and heparin.

The doctor finally arrived at 11:30am with an entourage.  She does her examination, answers my questions and signs the release forms.  We are almost free!

I pulled the car around, packed up and off we went!  The next phase, home recovery, has begun.

I stopped at our pharmacy to get 15 prescriptions.  Even though I told the Case Manager our pharmacy had to order one of the prescriptions, there was a failure to communicate and one of the GVHD meds were not available.  Luckily, our pharmacy is awesome and she found this medication at another pharmacy in town.  I bought the mother of all pill organizers and we spent 1/2 hour putting pills in little boxes, but who cares, he's home!

Day +22

Steven is still slated to be released tomorrow.  He received 2 units of blood this morning.  They gave him two units so he would not need more before Tuesday, our first scheduled clinic day post release.  He walked another mile, his 10th since being released from his room.
He has really done well and is hopefully spending his last night with the second wife.  He still has 2 pumps going so they aren't quite ready to totally disconnect him.
Tomorrow's schedule is, fluid.  He may be released, possibly at noon.  It's good to be flexible.  I'll drive to COH and hope for the best.

Day +21

Since Steven is slated to come home on Friday, I will need to prepare.  I'm having the carpets cleaned this afternoon.  COH gives you guidelines on what needs to get done before the BMT patient comes home...vacuum, dust everything including blinds, clean bathrooms, kitchen, clean carpets, etc...  The only reason I went back to work was to justify getting a housekeeper.  Just kidding, but I do love having one.  I despise cleaning and equate it to putting bamboo under my fingernails.  COH actually recommends you have your house professionally cleaned.  The patient is never supposed to clean or pick up pet waste, or...sounds like business as usual :)

I broke the latch on my front door before leaving for work.  Of course.  I have time for this.  It's the latch that your thumb pushes down on in order to open the door.  Double doors look so nice until you need to buy hardware times 2.  Timing is everything.

The carpet cleaners were at the house early and finished my house in 1 1/2 hours.  When they were done, I went up to Simi Valley to run errands.  I needed to get a thermometer for the frig, meat thermometer,  and new hardware for the doors.  One of my good friends texted me and asked if she could do anything to help me prepare for Steven's arrival.  No I'm fine, I have to blah, blah, blah and get new hardware for the front door since I broke one of the latches this morning.  She offered her husband's assistance and voila, he came over and changed them out for me!  I am so grateful and they look marvelous!  Thank you!


Steven on the other hand, had a great day.  He walked another mile and did 7 miles on a recumbent bike.  His WBC count is at 4.0!  They are continuing to ween him off the IV's and substitute pills.  He took 8 pills this morning!
One of my BFF's brought me bleach, cutting boards and sponges.  So awesome!  Thank you :)  She also offered to make a sign that I want to put on the garage doors that says, Welcome Home Steven!

Day +20

We are getting ready to blow this popsicle stand!  Not only is the bag of TPN gone but they just weened Steven off his Tacrolimus IV and was switched to pill form.  They were talking about letting us leave Saturday but now they are talking about Friday.  The whole 4-6 weeks seemed like an eternity on October 3.
The nutritionist talked to us when I got here.  It's worse than when you have a newborn.  All cutting boards, cooking surfaces, utensils, sponges, etc.. have to be sanitized in bleach water.  No honey, no uncooked meats (not a problem), no deli meats that aren't cooked, no bruised or damaged fruits/veggies, no leftovers after 48 hours, he has to eat cooked foods within 2 hours of them being cooked...  it goes on and on.  I have a little light reading to do tonight.  I will also be going grocery shopping for the first time since September.  Thanks to everyone who so graciously provided me food so I didn't have to survive on Ensure.  I literarily had zero time to cook.  I am grateful for all the meals, snacks, and beverages! :)  Thank you!
Steven's WBC count is now 2.4.  For some reason they didn't calculate his ANC today.  Platelets dropped to 77,000 from 89,000 yesterday which they said might happen.
Steven took the bait and went to the group recreational therapy today.  Yes, the one I envisioned being run by Nurse Ratchet with perfect order.  It's purpose is to keep the patient's minds sharp.  They played a card game called Corner Eights and Dominos.  Steven's mantra is compete intensely and win, even against other BMT patients.  They never saw it coming...
Steven did another mile and earned another foot.  He has had some swelling in his feet due to all the IV fluids.  That should go away as the IV's are discontinued.  He has taken advantage of walking when he isn't tethered to the "second wife".

Koda and cats...

Our neighbor has graciously been taking Koda for a walk or 2 every day.  We are thrilled and grateful!
Thank you to everyone who has offered to help us with Koda.
Our neighbor doesn't have a dog, she has cats…I love this picture of her kitty when Koda comes to visit.  This says it all….

Day +16, +17, +18, & +19

I have a little catching up to do!
Friday,  Steven's WBC count stabilized at 1.4 but his platelets started to increase to 25,000.  The doctor said it isn't unusual for counts to sit for awhile...they aren't concerned.  Steven is starting to eat a little more.  Apparently our WBC do more than fight infection.  The RN said that when his WBC count increases he will be able to taste more foods and he won't be as nauseated.

Saturday, WBC's still at 1.4 but platelets are now at 38,000.  Our doctor said the platelets will need to be at least 50,000 and ANC >1.0 before discharge.  His WBC and platelet count is higher than when we were hiking in Wildwood, before being admitted, with the dog, plague, pollen, unleashed pitbulls and anything else in a natural green space.

Sunday, WBC still at 1.4 but platelets are now at 50,000 and ANC is 1.0!!  While I'm looking for his luggage so we can leave, the doctor reminds us that the counts can drop at any time and increase again.  Because of this we are looking at returning to Duarte 2X/week after discharge.
Steven enjoyed the company of a repeat visitor.

Monday, so the WBC's woke up and Steven's count is 1.8 with an ANC of 1.0.  And the platelets are happy campers at 89,000.  He had to have a unit of RBC's this morning.  His RBC count has fluctuated quite a bit.  After discharge, he will most likely have to have RBC's which is why the Hickman will be left in.  Steven is getting close to his target numbers to be discharged.  It's crazy because the time here has gone quickly.  It is possible he will be discharged in the next week.
Steven enjoyed the company of another repeat visitor and platelet donor.  Won't you all be happy when you aren't coming to COH to donate!!

And speaking of the Hickman, I had a tutorial with Steven's RN on the care of his catheter.  It's a piece of cake... don't push a bolus of air in his line and you will be fine.  I'm good with that! Basically I will be pushing heparin/saline mixture in each port once a day to keep the lines open.  The sterile dressing will get changed once per week.

I'm into long term planning and requested the nutritionist come tomorrow to give me the ins and outs on cooking for someone after BMT.  There are a lot of rules.  One of the nurses thought cutting boards had to be cleaned with bleach.  I'm not sure I own bleach...  More on that after my appointment tomorrow.