Back home

Zoe was discharged yesterday from the hospital--everything seemed to be back to normal with her.

This morning I arose at 5am to find an itchy red rash covering much of Zoe's torso.

Could this be it? The appearance of the dreaded GVHD?
(cue the villain entry theme)
Dum, da-dum, dum!

A visit to the doc today for labs and a skin scan. Manley (today's attending) thought that the skin rash did look similar to GVHD, but wanted to rule out a delayed reaction to the antibiotics administered during the G Tube placement surgery. He had us dose her with Benadryl with the intent of seeing if any improvement might happen. Marked improvement would mean the rash was likely not GVHD based.

So, there was some improvement over the next few hours, but some rash still remains. We check in with Manley tomorrow to find out whether her tacrolimus (immunosuppresent/anti-GVHD drug) levels are therapeutic and to discuss the state of her rash.

It's quite possible that, if it is GVHD, it was triggered by the inflammation response she had to the surgery. The fever she had was the first one she's gotten since her transplant. It very well may have gotten her new T cells hot and bothered and on a tear to attack. This is how GVHD can get going--and why they want us to keep Zoe from getting sick for at least the first year after transplant; her new T cells, when activated by inflammation or viruses, can get confused as to what is the enemy and decide that Zoe (or her skin, or liver, or GI tract, or any and all of it) must be attacked.

It must not be a common reaction to G Tube placement surgery, or else I'm sure they would have mentioned it.

If they determine it to be GVHD then Zoe would be put on a course of prednisone for treatment.

Ugh. Steroids. "Roid" rage. Weeee! Here we go again

--or, maybe not. We may not know for certain for a few more days.....but I tend to like to prepare myself.

By the way...

Finally posted a recent video of Zoe--check the YouTube link for a shot of Cute!

G Tube Placement

Zoe went in on Monday for her G Tube placement surgery. The procedure took only 15 minutes, but recovery is still ongoing.

We were only supposed to stay one night in the hospital with her, but due to her stronger-than-usual reaction she's there for a second night tonight.

She spiked a fever and had bad enough pain that oxycodone and Tylenol did not cut it for her; only morphine seemed to do anything. Her gut function appeared to just halt for a good 24 hours after the procedure in reaction, which made getting her back to her formula feeds impossible for longer than expected.

This all said, she's doing well.

Imaging showed that her G Tube was placed correctly and that the inside of her stomach looks pink and healthy. Tonight is my night to stay home--and Jeff just called to tell me that our energetic and happy girl has made a reappearance. Guts finally seem to be moving, meaning they can go forward with getting her back on her feed schedule.

Had a little feeling that it wasn't going to be quite as smooth as they said it would be. Zoe's just living up to her namesake and continuing to keep us in the here and now.

Blessed tyke.

General Update

Wow. Lookie at that--no posts for two months! As I've mentioned before, no posts undoubtedly mean good news maintains in ZENland. Of course there's plenty to talk about, but the longer I go without posting about it, the more I have to write, and then the less I'm motivated to blog it all out. Enough of you have sent me interweb pant kicks, so I guess I have to put down those bon-bons, roll off the couch, and get to work...

A month ago we took Zoe in for her 6 month check-up post-shunt placement for a CT scan to see how her brain was doing. Every CT image since her transplant has shown an alarmingly large right ventricle--even up to 3 months after the shunt was placed.

This time the CT revealed a very slimmed-down right ventricle to the relief of all. It got me wondering about the brain and developmental movement as it relates to Zoe's experience.

As you know, Zoe is quite delayed in her gross motor skills ability. At 21 months of age she is not yet crawling when most of her peers are accomplished runners, climbers and tumblers. When placed on the floor, for the longest time she would only lie mostly still, on her back, with her movements limited to kicking.

In the month leading up to the CT scan it seemed that all of the sudden Zoe was motivated to do more than just lie and kick. She started to get up on hands and knees for moments at a time, push her self backwards with her hands while on her stomach, and scoot herself forward with her legs while on her back.

With the news of her ventricle shrinking down to almost normal size I wondered if it correlated with Zoe's increased motor activity. The study of developmental movement in babies has shown connection between certain physical movements and the stimulation of brain development in infants. Did Zoe's increased activity help to heal her brain, or did the shrinking of her ventricle help promote her gross motor skills? Hard to say, but it's an interesting question.

As such, she's still just on the cusp of crawling. It's clear that she's muscularly not as strong as her compatriots, as she can only sustain weight on her arms in the crawl position for a few seconds at a time. She keeps trying though. Maybe by her second birthday she'll finally be a crawler. Then I suppose we really will have to baby-proof our house for the first time. Such a novelty!

Plans are in place to remove Zoe's NG tube and place a G tube directly through the abdominal wall into the stomach. We had a satisfying experience when Zoe had to go in for a torso X-Ray in the pre-G tube placement exam. The doc who came in to read her films looked a bit confused and asked, "What is your daughter's condition??" Jeff replied, "Osteopetrosis." The doctor said with further confusion, "But her bones look fine!" A light came on and he continued, "Ah! But she had a bone marrow transplant!"

Guess we know for certain now that it worked :-)

So the G tube gets placed this next Monday, October 26th. It will be a minimally invasive surgery that will require Zoe to stay only one night in the hospital. She'll overnight in the oncology unit where she resided during her BMT -- a precaution taken due to the fact that she is still immunocompromised. Apparently Seattle Children's is currently crawling with kids with H1N1 already, so I'm happy for the immunity-friendly accomodations. Also, it will feel like old home week getting to see all of our favorite nurses again (and yes, even some of the overly-perky ones).

Despite her delays, Zoe is doing her best to be a properly mischievous almost two year old. She's teething currently, so finds it endlessly entertaining to try and use my fingers as teething tools. When she manages to catch me unawares and bite me HARD, my yelp of pain only makes her chortle delightedly and try even harder to lead my fingers to her mouth. I've told her many times that she should bite her own fingers; she's game, but not quite as entertained by that prospect.

She's a dedicated escape artist; we've started to call her Zodini. She takes her right arm out of every outfit we put her in and shoots it out of the neck hole so that she sports the currently fashionable one shouldered look. Any pants that we put on her promptly come off (even the ones we put on her under the onsies eventually get taken off), and those that she can't take off soon have both of her legs in one pant leg, leaving her flopping her conjoined limbs like a little mermaid.

She would have us play her special Zoe music over the stereo all day long if we could stand it. I am chagrined to say that she's as opinionated about music as I am--anything that is not "her" music is marked by wails of protest. Introducing new songs to her is a process --but I'm determined because I have just about had it up to here with "Baby Beluga".

Zoe's been on a jaunt for the last couple months where she's decided that 3- 3:30 AM is a perfect time for getting up. Believe me, we've tried letting her stay in her crib, but an hour of her kicking the headboard and bellowing loudly just on the other side of the wall from us convinces us eventually that there's no going back to sleep. So, we've gotten into a routine of taking turns doing the early shift (the one who has to work the coming day gets to sleep in). On my mornings I take her to the living room, put her in her little room with plenty of toys, turn on her music, and doze fitfully on the couch. I think that's pretty much what Jeff does on his mornings too, but I've never gotten up to check.

Zoe's starting to show signs that she's cycling out of that monstrous phase--she's been waking up a little later: 5am two days ago, 6am yesterday, 4am today (my day to get up--dang!).

As for Jeff and I, I have to say that we are doing and feeling so much better. It's been quite a radical shift, actually. We've been exercising vigorously on an average of 5 days a week for the last 4 months. In addition to that we took a yoga/meditation class about a month ago that taught us a practice we are doing twice a day now. The class was just what we needed to help lift us out of our rut of feeling victimized by what we've been through with Zoe, and has given us a practice which helps us to center ourselves on a regular basis. I highly recommend the class to those of you drawn to this sort of thing--it's offered around the world in different cities, is not religion-based --and will inject some serious juice in your life.

We are getting ready to hunker down for the upcoming cold and flu season. My cousin Caren just called me today to tell me that 15% of her son's school is out with what looks like H1N1. It's not a virus that is looking as dangerous as they feared, but it's seriously unfriendly to young children, especially immunocompromised ones. This may be a long, lonely winter of Netflix and internet surfing for our little family as we try to avoid any of us getting sick.

Wish us luck.