Day 31: Welcome Home

Krista made it home today! She had an appointment with the oncologist at the City of Hope this morning. He thought the plan of going home was a good one, given the circumstances, and even said that she had a good medical team in Santa Barbara to deal with emergencies. Not that there's any signs of trouble right now.  Labs looked very stable, except for her magnesium level which it typical to be low due to one of the medicines she is on. That's an easy fix with an IV infusion, though it took some time. Both Krista and my mother got to take a nap while that was going on since they brought a recliner chair into the infusion suite. That's a nice treat before making the drive up to Santa Barbara.

I managed to dust and sanitize the bedroom and bathroom walls before the cleaners showed up. Our house tends to be very dusty, so I've been doing that as an extra precaution when Krista comes home immune suppressed. The cleaners spent two hours with three people prepping the house, and I got a chance to hang up the "Krista's bathroom" sign on the bathroom and the "Wash your hands" sign on the front door. Those have been very helpful for remembering the precautions we need to take.  The boys made a "Welcome Home" sign too and I put that on the garage so it would be the first thing they saw when they got here. I had a lot of errands to do so I wasn't home to see their arrival (boo!). It was a big day for us all, so I'm off to get some much needed rest.

In peace I will lie down and sleep,
for you alone, Lord,
make me dwell in safety.
(Psalm 4:8)

Day 30: Not Working

Krista is doing great with her recovery. She was able to do the full set of exercises that the physical therapist gave her to do for the first time today. That's the good news... the bad news is the hotel. It's a nice hotel for healthy people, but it's just not working for Krista. The doctors gave her some pretty strict requirements:

1) All food has to be cooked and it can't be from a restaurant. The problem is that there's only a 2-burner stove top in the hotel room, and that only works some of the time.

2) Sterilize dishes and pots and pans. The hotel doesn't have a dishwasher.

3) Use a towel only once. The hotel only provides room service once a week. That is way too long to go with the set of towels she has.

4) Live in fairly sterilized conditions. The hotel is very dog friendly; there are dogs in every room around her. That means there were probably dogs in her room. There's partial carpet in her room which probably hasn't been sterilized.

So since the Village isn't available and this was the best choice in the area, Krista and my mother agreed that Krista would be better off back home for now. I agree. We're going to try it out, for the weekend at least, since her oncologist has already said that weekends away was OK.

The main thing they are cautious about is infection. They want to have her get to the City Of Hope hospital as soon as possible if any sign of infection shows up. We've dealt with infections before at Cottage, so that shouldn't be a problem. The doctors always think of the worst case, which would be if something got complicated they would have to transport her between hospitals and that gets complicated. It seems more likely that she would get an infection in that hotel than at home anyway, with they way we've quarantined her bedroom and bathroom.

The other thing the doctors get concerned about is falling. With Krista's mobility being as good as it is, that risk is really reduced. The only danger left would be if she were to experience a blood pressure drop. Her blood pressure has been quite stable, so again that's not a concern. (Besides we have a blood pressure monitor at home that she doesn't have access to at the hotel.)

So tomorrow I will be cleaning instead of driving. My mother will just drive Krista up after her appointments since mom was coming up anyway. That sounds better to me anyway. Cleaning won't be too hard since MasterCare was already scheduled to come and do a house claning. I just have to make sure it's all picked up for them, and do some of the extra sanitizing that makes it extra safe for the immune suppressed.

The Lord is gracious and righteous;
our God is full of compassion.
The Lord protects the unwary;
when I was brought low, he saved me.
Return to your rest, my soul,
for the Lord has been good to you.
(Psalm 116:5-7)

Day 29: Moving Day

Krista and Jan made the move today into the hotel. It sounds like it went pretty well. The room is nice, though the air conditioner is very close to one side of the bed. The doctors phoned in all the new prescriptions into the local CVS, but apparently that is about 6 miles away from the hotel. My mother went to pick up the new prescriptions and got to enjoy the greater Los Angeles freeway system at rush hour. It wasn't even raining (like it is here in Santa Barbara) and there were three accidents on the way! The storm that's hitting here right now is on it's way south, so be ready for people to forget how to drive. (That's one of the strange realities of living in Southern California.) Thanks mom for helping with all that today!

Sing to the Lord with grateful praise;
make music to our God on the harp.
He covers the sky with clouds; he supplies the earth with rain
and makes grass grow on the hills.
He provides food for the cattle and for the young ravens when they call.
His pleasure is not in the strength of the horse, nor his delight in the legs of the warrior;
the Lord delights in those who fear him, who put their hope in his unfailing love.
(Psalm 147:7-11)

Day 28: Different

It looks like the plan is going to be different than we had originally hoped it would be. Krista is supposed to be discharged tomorrow but, while there is no availability at the Village, she's not going home just yet. We got her a room in a nearby extended-stay hotel for a couple of nights. We're still on the waiting list for the Village, so if something opens up we'll be able to move her there.

My mother is coming back up from San Diego to stay with Krista two nights, and then Friday I'll head down there and she'll come up to Santa Barbara to stay with the boys until Wednesday. Krista only has one change of clothes with her, so I'll be bringing her a bunch of supplies. I understand that the hotel doesn't have many cooking tools, so those will be with me too. And don't forget the cleaning supplies.

Once she's out, she'll be free to roam about (with a N95 particulate filter mask on). Got to keep those germs out! No crowds or retail stores allowed. (Krista wondered if the restriction includes discount stores, too -- ha!) The doctors will also allow her to go home for Thanksgiving, so we're very excited to be able to spend the holiday together at home. She's been picking up some great tips for making Thanksgiving preparations easier from the Food Network, so we'll have the kids pitch in and make a mini feast.

All of this is so amazing and I'm so grateful that God spared us an experience like we had last time. I keep thinking that she should be incapacitated coming out, but she's doing well - just weaker than usual. That strength will come back in time; I expect months, but we may be surprised.

You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing your praises and not be silent.
Lord my God, I will praise you forever.
(Psalm 30:11-12)

Day 27: No Strings Attached

I am back home still, attending training classes at work. While I'm here I'm trying to get as much done as I can, so today and tomorrow it's auto maintenance. Our mechanic is half-way between home and work, so I bring my bike on the car and bike the rest of the way in. Normally I can do that casually, but today it was a bit rushed since our training starts at 8 am! One more time tomorrow.

Krista is now completely off the IVs, not even the nutritional drip remains. They are still adjusting some of the oral medicines to get them right. It's possible that she could be discharged tomorrow, but only if they get an opening at the Village. There's just too much going on right now for them to discharge her otherwise.

On the fun side, Krista got a ukulele from the music therapy group recently but it was badly out of tune. I would have tuned it for her, but that wasn't an option. Somehow, she figured out how to use the tuner and did it herself! Now she's itching to learn how to play it. The music therapy group meets at the Village with free ukulele lessons, so maybe that will work out soon.

[Jesus speaking] “I feel compassion for the people because they have remained with Me now three days and have nothing to eat. If I send them away hungry to their homes, they will faint on the way; and some of them have come from a great distance.” And His disciples answered Him, “Where will anyone be able to find enough bread here in this desolate place to satisfy these people?” And He was asking them, “How many loaves do you have?” And they said, “Seven.” And He directed the people to sit down on the ground; and taking the seven loaves, He gave thanks and broke them, and started giving them to His disciples to serve to them, and they served them to the people. They also had a few small fish; and after He had blessed them, He ordered these to be served as well. And they ate and were satisfied; and they picked up seven large baskets full of what was left over of the broken pieces.
(Mark 8:2-8)

Day 26: Later

I'm writing this post a a bit later than usual because yesterday was too busy for me to write. I spent the day in church, having some quality time with my boys, and doing chores. Krista felt quite well yesterday, and she's off all the IV's except for TPN at night. She said that she was less sleepy and less pained. No news otherwise. We're waiting  to hear today what the oncologist has to say about discharge and availability at the Village.

Do not worry then, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear for clothing?’ For the Gentiles eagerly seek all these things; for your heavenly Father knows that you need all these things. But seek first His kingdom and His righteousness, and all these things will be added to you.
“So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.
(Matthew 6:31-33)

Day 25: Day Off

Today was a day off of sorts for me. I got to sleep in, have meals with the kids, and even go to the beach with Trevor and his friend Dillon. I've never been to Rincon Point before, and it is amazing that as soon as we got there I saw someone I knew! Rincon is a dog-friendly beach, so we brought our dog along and let him run around and get all sandy and wet. It's bath time for him anyway. Tonight we had Dillon and Adam's friend, Garrett, over also and they watched some movies.

Krista didn't have so much excitement. Her red counts came down quite a bit (from 9.4 yesterday to 8.5 today), so she got a double transfusion. (White also went down a bit to 8.2 which is still perfectly normal; platelets are nice and stable at 66k.) She learned today that the incredible boost she had been experiencing may have been from residual Neupogen in the stem-cell donation. They give Neupogen to the donor to increase production of stem-cells, but it also is known to increase production of white blood cells. The pattern of rapid increase followed by a small reduction is expected when Neupogen is introduced.

Aside from the labs, she began experiencing more all-over skin pain recently. The new pain killer had been helping with that, but they replaced her constant IV dose with a sticky patch that's supposed to do the same thing. (The PCA, where she can give herself extra doses every so often, is still there for when it gets bad.) It sounds like they might need to adjust the patch some more, as dealing with this made her sleepy and unmotivated to do her laps around the building. Praying for a better tomorrow.

Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently. In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
(Romans 8:24-27)