Yesterday's Breakdown

The sun was shining in Seattle today; things seem a little less dark after a good night's sleep.

As noted in Amy's post, Zoe's surgery was canceled due to the fact that she was coming down with a cold. The absolutely disheartening thing about this was that it wasn't really identified as a true issue until Zoe was prepped and on the operating table.

They knew going in that her white blood cell count was high from the blood test taken the day before. But, as she showed no signs of symptoms, and numbers indicating infection were low, they decided to proceed.

According to the anesthesiologist, when we met with her after they canceled everything, it was the breathing tube difficulties that ultimately decided the issue. After inserting the tube, she noticed that it was difficult to manually "breathe" for Zoe. Her lungs felt "stiff", she said. This stiffness is usually due to one of two things: the tube being too small, or the patient being sick and having inflammation. She tried putting a larger diameter tube in--and still Zoe's chest felt stiff.

The concern was that the swelling present in the passageway would not allow them to remove the tube in a timely manner after the surgery. Apparently, if the tube is not removed within 24 hours of being placed in, the likelihood of infection, including pneumonia, is very high.

We also talked with the plastic surgeon and neurosurgeon after they emerged from the canceled procedure (actually, before we met with the anesthesiologist). They noted that another point of concern was Zoe's level of bleeding.

Zoe bled profusely at her IV site and at the base of her spine where the neurosurgeon had performed a lumbar puncture for the purpose creating a pressure release for her cerebral spinal fluid during the operation. They said that the amount of bleeding was concerning and not normal. They had blood samples sent to hematology for analysis.

Oh God. What else is wrong with her? Are there more ghosts to reveal?

Both of our hearts were gasping on the floor beneath us.

In my own head I was screaming--what about her bone marrow transplant?! We need her healed from the surgery so that she can proceed with life saving treatment--and surgery is postponed for another month...!!!?

But, as of such, they all concurred that it was not in her best interest to go forward yesterday--a call to Cunningham and to Dr. Manley at Seattle Cancer Care Alliance had them agreeing as well. According to the anesthesiologist, all the doctors involved in the OR got out their calendars and settled on a good day to reschedule for.

Talking to Cunningham later, he said that a November 6th reschedule is very expeditious. I'll have to trust him on that.

We were told that they needed time to get Zoe released from surgery prep; we would see her in a room in about an hour. We would need to spend the night so they could observe her. The tube in her throat had "stirred things up" and now, they said, she sounded a bit rough in her breathing.

Cunningham visited us for a bit about 30minutes later. He had gotten out of a meeting and headed straight for us. He was able to assuage our fears saying that it was unlikely another ghost in Zoe's closet was waiting to be revealed. He also said that a month delay was not a tremendous thing to be worried about as far as the BMT goes.

Zoe's issue has been progressing all her life, he said, and another month was not likely to be the make or break point. He said, too, that her hematocrit levels (red blood cell count) were actually up a bit since the last time they looked, so she was holding steady as far as blood production and storage was going.

If Zoe's having surgery that day was seen as a life or death issue, they would have progressed with it. Cunningham said they have ways of dealing with infection and colds, if need really be, and, if it came down to it, they would definitely proceed in the future if overall protocol demanded it (as far as needing to get the BMT process started).

An hour later had us waiting in a hospital room for Zoe. Zoe came in on a big bed with a crazy haircut--a shaved strip from ear to ear. We could see remnants of the jagged line they had drawn where they had planned to cut the scalp.


The next few hours were simply spent feeding and holding her. She was groggy, but doing great.

During that time we were visited by the hematologist, who came to give us the results of the blood panel. She took a very long time getting to the point (so hard not to scream: Just tell me what's wrong!!!), but the bottom line was, she really couldn't explain what was the reason for Zoe's profuse bleeding. None of the extensive tests revealed anything that would say. She asked Jeff and I if we had a family history of blood or bleeding issues. We told her, not that we knew of.

Please, if you are family and you know differently, let us know. It could be a missing link.

She left us with the remark that she would be doing more looking into Zoe's case. Hopefully, Cunningham's opinion that there are no more ghosts to be found will hold true...

As we were down the hall from the SCCA portion of the hospital where the BMT's are performed, Jeff and I left Zoe sleeping under the watchful eyes of Cinny and Jack and did a little reconnaissance. We only got to peek at the entrance of the unit as signs plastered everywhere reminded us not to spread germs (we had been holding a possibly sick Zoe), but a helpful childcare specialist from the unit came back to our room with us to tell us about some of what to expect when we return for the BMT.

More on that in a later post.

Zoe's continued great progress got us home last night. Thankfully we didn't have to spend the night; the "double bed" for the parents looked suspiciously like a single.

We all got some great sleep last night--thanks to the one benefit I can see regarding Zoe's unnecessary anesthesia.

She seemed pretty fine today. It's hard to know if her raspy voice is due to a cold, or to irritation from the different breathing tubes shoved down her throat. Currently she's asleep and breathing fine. I wonder if she is really coming down with something.

What does it mean if she doesn't? Will it have been canceled for nothing?

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On another bent--great, great news came today from SCCA.

Preliminarily, there have been found two, possibly three "ten out of ten" bone marrow matches for Zoe.

Ten out of ten is the best possible match for an unrelated donor.

Much more needs to be done in the way of verifying and locking in a donor--but this early news is phenomenal.

Many have asked if she has the type of osteopetrosis that can be treated with a BMT--I guess I wasn't as clear about that as I should have been in earlier posts.

Ultimately, it's not absolutely certain. This was to be expected, according to Dr. Manley at SCCA. Osteopetrosis is so rare that they don't have all of the gene mutations identified. One of the two mutations present in Zoe is not recognized.

According to Dr. Cunningham, whose area of expertise includes molecular biology, his educated guess is that she has a type that responds to BMT's. Even so, and even with a "10 out of 10" match in bone marrow, her prognosis is still 50/50 as far as being healed.

The ultimate glass half empty/half full scenario in terms of how we sit with this.

This is so big, and I feel so small and stiff and unequal to the challenge.

All I can do is surrender, over and over again.