Day +6: Fever City

Buckle up, the ride has gotten bumpy.

I arrived back at Seattle Children's this morning to Jeff telling me that Zoe's temperature was hovering at 40 celsius (that's 104F for all you Americans) all night--and she's continued that trend all day today.

Also, they've found blood in her urine.

The blood samples taken 24 hours ago did not grow any signs of bacteria yet. They just pulled some more blood this evening to be tested again. Their approach is to draw blood for testing once every 24 hours that the fever is still present. Her urine has also been sent to be tested for infections as well.

The concern is that her high fever and bloody urine points to a higher likelihood of some sort of infection, possibly bladder related.

Ugh. This is it, right here.

This is where the work for parents, like us, of children, like Zoe, lies. The watching, the waiting, the working to understand that all we can do is sit here, love her, and not let the pit of fear that this huge unknown creates overwhelm us.

Day +5

So, today was a day of dichotomies.

Zoe started the day with more verve and pluck than I've seen in her since last Wednesday. She had periods of chattiness and even happy playfulness that were great to see after several days of pain and misery.

Then the fever started to spike.

They measure everything in celsius--anything up to 37.4 is not considered worrisome. At 37.4 they begin to monitor the temperature every 15 minutes. She got up to 38.6 this afternoon. They took some blood samples to have cultures run; they moved her chest X-ray up from tomorrow to today to see if there is anything going on in her lungs.

The upside is that her blood pressure is also a bit elevated--the nurse says that a fever with accompanying low blood pressure is more worrisome. She also, after a nap, still maintained the heightened level of alertness and engagement--also a good sign. She didn't seem to be in too much discomfort.

They tell us that fevers are common in transplant patients, and they can't always say why they occur. We'll know more in 48 hours when the blood culture results return; in the meantime they will continue to monitor her closely.

As my chiropractor, whom I visited for a much needed adjustment today, said--I have plenty of good reasons to either worry, or not worry.

So, where do I throw my energy?

Really, do I even have the capacity to choose?

Ask me again in a couple of days.
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Check the YouTube link: Zoe is continuing to expand her abilities, despite her challenges...

Day +4

The doctors keep telling us that Zoe continues to do great. I'm taking their word for it as it's hard to tell with her mouth a mucousy and torn up mess, as well as with her discomfort levels climbing.

But, her numbers continue to look good--liver function and other markers they look at are plugging along. The main development is that they've started an oxygen stream blowing by her face to help keep her oxygen saturation levels up as they had started to dip. Apparently this is a common occurrence in babies as the mucositis progresses; the smaller air passages get more easily gunked up with the sloughing of the mucosal lining.

She is on 100% TPN now that she's not taking a bottle. She can't swallow anything now.

Jeff and I are doing okay. This is definitely a grind. The person who spends the night at the hospital ends up doing a lot of napping the next day. And, even with every other night spent at home, we are both experiencing pretty profound sleep deprivation.

I keep wondering if I am on the barest verge of coming down with something, facilitated by exhaustion; so I constantly pound the immune enhancing supplements and will myself to stay healthy.

There is no other option!

Day +3

It's getting more challenging. Zoe is in quite a bit of discomfort--and it's hard to watch. Her mouth is tearing up inside, she has so much mucous, she's miserable.

I know she won't consciously remember any of this, but it's very difficult to watch an innocent go through something they don't comprehend.

She's gotten so intolerant of people putting things in her mouth, especially the suction tube, that she screams angrily and whips her head from side to side in protest. At least it's clear she's maintaining some neck muscle tone.

We see sun breaks of playful Zoe here and there, but mostly otherwise she's conked out from the meds. I'm learning to love narcotics if only for the way they help her manage the pain.

I'm continuing to explore the swanky real estate around the hospital. Today my friend Risa and I walked the neighborhood and came upon a couple "free" signs in front of a water-view house. A jogger stroller and a kid's bike that attaches to the back of an adult bicycle: both in pretty great shape. We trotted back to the hospital with the bike balanced between us (neither of us wanted the jogger)--her son Zane is in for some great fun! One Laurelhurst person's junk...

Day +2

Short update: Zoe is still doing well--for a transplant patient anyway. She is on a constant morphine drip now for pain management, she only took two ounces of milk by mouth today, and she alternates between cranky and sleeping--with a few bursts of her usual happy self here and there.

They say this is all usual and expected.

I can't decide if I want the waiting period between now and the hoped-for engraftment to fly by, or inch along. Certainly I am not in love with living mostly at the hospital--but, in the present moment, Zoe is doing well.

The present moment is all I know. I'll-- no wait, I do--take it.

Day +1

They said that Zoe would feel worse after the transplant, but I didn't know it would happen so fast. About an hour and a half into the transfusion she projectile vomited. I was worried that it was a reaction to the cells, but the nurses assured me that since her temperature and blood pressure were fine, the nausea was likely only from the chemo.

Today she has been cranky, cranky--crying a lot from pain. They had to give her a couple doses of morphine to get her settled. Her food intake is rapidly decreasing; tomorrow they will likely start her on the IV nutrition known as Total Parental Nutrition, or TPN.

All of this has been expected. But, it's a bit jolting to go from being lulled by her ongoing happy and unfazed self, to this sudden and rapid shift in mood and wellness. Not that I blame her at all. In her place I would be a much bigger mess by now.

We are told that Zoe will be feeling pretty rotten for a solid eleven days or so, but they will be managing it as best as they can. The trick is to help her get out of much of the pain, but not have her so drugged that she sleeps all the time.

Aside from drugs, her best distraction from the pain continues to be singing to her and music.

We've been making up a lot of songs.

Day 0! Day-ay-ay 0!

And, hour "0" for that matter. The stem cells are infusing at this very moment. Check that YouTube link for video of the occasion!

We are tearful, happy, and also scared.

The "Beginning."

And, hopefully of good things to come.