Day +64: Fun with Home Care

Monday was the momentous discharge day--and I was too darn busy to properly dignify it with a posting here. I am just going to have to get comfortable with always being two steps behind in this next year--because DANG, this home care regimen is pretty much a full time job!

But, I get ahead of myself.

I was the one who got to spend the last night at the hospital--fitting as I was there for the first night as well. The little stinker must have heard me say to Jeff, as he was leaving for the night, that it would no doubt be a much better night than the first sleepless one.

It was, but just barely.

Zoe decided that 1am was a perfect time for playing and jabbering. The lovely nurse offered to stroll her around the unit--and had her out for 2 hours before Z tired of socializing with the night nurses and showed signs of wanting to nod off again. Then she was up every hour from then, and I was reminded of the days when she was a newborn.

Monday was marked by a flurry of activity aimed towards getting us out of the hospital at a decent time. And, even though everything went very smoothly, we didn't get out of there until 2:30pm.

The home care regimen has been a shock to the system in terms of how much work it involves. Zoe needs medications administered at four different times a day, the earliest dose coming at 8am, the latest being given at midnight. Makes for figuring out an adequate sleeping schedule rather challenging.

We hook her up to IV fluids every night (nerve wracking in that we are accessing her central line and therefore increasing her risk of infection) and have to maintain and administer feeds through a pump that pushes formula through her NG tube at a set rate. Feeds have to be turned off 30 prior to administering meds and then turned on again 30 minutes after meds (admittedly we don't wait 30 minutes after the midnight feeding).

Also, we have to flush her central line once a day and change the dressing on the central line once a week (which is a big improvement from when people had to change the dressing daily). In a couple weeks we will have to start back up with the twice daily blood thinner injections to make certain she doesn't clot around her central line.

Twice a week Zoe needs to go to clinic appointments at the SCCA for a few hours worth of blood draws, check ups, and consultations with the attending doctor, the nutritionist and the PA.

All we know is that between work, home chores, baby and baby's medical schedule we are seriously running most of the day--and not sleeping enough at night. They tell us this will get better with time as her medical needs start to taper, but that it IS a seriously overwhelming experience for all parents who leave the hospital with their newly transplanted kid.

Here are some pics of all of her paraphernalia:

From top to bottom: gloves and alcohol wipes, medications, central line flushing supplies, dressing change supplies, tubing, IV pump

In the refrigerator: IV bags, meds

Supplies for the blood thinner injections that we will have to start doing again twice a day in a couple weeks (once her diaper rash heals)

Supplies in bedroom

Zoe in bed hooked up to her IV pump and feed pump (both in the black and red bag at the upper right hand corner of the picture)

It's quite a lot--but it still beats living at the hospital where all the stuff was done for us (but the worrying). Well, off to bed, perchance to sleep (but no guarantees)...

Day +62: HOME!

Just a quick note to say we are indeed home, we are surviving it so far--and we have a truck-load (not my original description) of stuff to do for Zoe's home care.

Will post a more thorough documenting soon--

but I have got. to. get. some. SLEEP!

Midnight and morning medication come altogether too fast...

Oh, and Zoe is fabulous.

Day +59: Ten weeks!

Wow, I stop posting every night, and the next thing I know it's been days since I last updated.

The MRI of Zoe's gall bladder revealed no change: still full of sludge, the walls still thickened. A consult with the GI docs indicated no procedures needed; the general consensus is that the resumption of feedings will eventually help her gall bladder clear itself out.

Word is Zoe gets to be discharged this coming Monday. This time I'm thinking there is a strong likelihood that it will actually happen.

Jeff and I were trained today on how to operate her feed pump that pushes formula through her NG tube. Tomorrow we will get trained in how to hook her up to her IV nutrition as she is not fully off of it yet.

The amount of stuff she is being sent home with, from a mountain of medications to be administered three times a day, to all of the medical paraphernalia required for her support--wow.

I'm just hoping that I won't start to secretly want to be back at the hospital when we really get to experience being 100% in charge of her daily maintenance. I hear it's very overwhelming at first, but that every week gets easier as medications and clinic visits gradually begin to taper.

I ran into our favorite nurse Kelly last night before tucking into bed at the hospital. Turns out she had to race her daughter (the one who had gone through BMT and is now around Day +180) to the hospital due to sudden and violent symptoms that indicated what turned out to be an infection. She's on antibiotics and doing okay now, but it was a grim reminder that immunosuppression is serious and dangerous--and that being discharged from the original hospital stay does not mean that the transplant process is over.

The coming year will be about vigilance and stamina for us. We've finished the steep hill climb portion of the marathon, now comes the long haul.

I'm feeling good about it though. Real good.

Day +55

We still are inching forward toward discharge. Tomorrow's ultrasound will tell us more, but there is a question as to what is going on with Zoe's gall bladder. Her liver enzymes keep spiking, so tomorrow they will see if any improvement has been made.

In the grand scheme of things it's not really a huge thing, but it is part of what's keeping her from being discharged.

The other issue holding her back is getting her GI tract to handle appropriate feed levels for her size. She's still on a fair amount of IV nutrition as her gut doesn't seem to like having too much food in it. It could all be related to the gall bladder issue--again, tomorrow's ultrasound will (hopefully) tell us more.

Aside from these two sticking points, Zoe is just a little spunky chunk of fun--and mischievousness.

I am having to learn the lesson every parent eventually learns: Do Not Laugh at Behavior You Don't Want Repeated!

Oy.

She started pulling off her diaper tab (you know, the one that keeps it shut), and I thought she was so funny and brilliant for her dexterity and skill--and perhaps reacted in a not entirely appropriate way (or at least not in a way that had future vision).

Consequently she now has this horribly magnificent way of unlatching her diaper directly before she poops and has a kicking frenzy.

I'm loving the endless laundry service now, but when we go home this new talent of hers will be a problem.
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Jeff got his turn at being the patient today: he had to have a root canal this morning. Poor guy! I just have to tell myself that if it had to happen during this process, it's a very good thing it didn't need to happen a month ago. Always something to be grateful for!

And speaking of gratitude, here's an email I just got today from Diana, the organizer of Sunday night's fundraiser, sent out after the event:

Greetings everyone -

I wanted very badly to express much more tonight than I was able and thought that maybe I could finish off in an after party email.

First, I am so very grateful to Deborah Music and Joe Whinney from Theo Chocolate for all of the amazing effort that they put into tonight's benefit. They provided the venue, the tours and the chocolate samples at no cost so that more of our money raised could directly benefit Jeff, Kellie and Zoe.

Kelly and Manny Loya (representing Altered State of Wine) donated wine for the occasion.

Tony Stevens and Trevor Larkin donated their time and talent so that we could listen to live music.

Kal Austin provided the food and drink.

Henry, Skiah and Manny made posters and helped to organize and clean.

Countless other people brought wine, printed pictures, collected the donations and spread the word and without this concerted effort the benefit would not have been such a great success.

Many of the people attending tonight have never met Jeff and Kellie before. This is a perfect reminder that we need not know everyone to be a community of people helping one another. I am quite overwhelmed at the generosity displayed here tonight.

Between us all we raised over $2500...

For those who attended, for those who did not and still donated and for those who have sent well wishes - I thank you all deeply.

- Diana.

And how!

Blessings have a way of persisting in this process. We are deeply grateful.

Day +53: Choco-Love

I am blissfully buzzing on love and chocolate from tonight's fundraiser for Zoe at Theo Chocolate in Fremont, Seattle.

Our friend Diana, her son Skiah and a couple other friends of his organized an amazing party at our local chocolatier to raise money for us to help get us through this experience with Zoe. Many people showed up for the event, half of which we didn't even recognize.

Wow. It just blew us away. I kept bursting out bawling tonight.

The factory gave a couple tours during the event. We learned that chocolate contains phenylethylamine (which speeds up the flow of information between nerve cells), dopamine (the feel-good chemical) and norepinephrine (which stimulates the production of adrenaline and makes our heart race fast) — all the same chemicals responsible for that energized and euphoric feeling that new lovers experience.

All I know is that I'm warm all over from a love vibe that I don't think is entirely or even mostly chocolate-induced.

Gratitude. Grace. Community.

Zoe's got her village, and it is circled tight. Thank you, and namaste.

Day +51: Platelets!

It's official: Zoe is manufacturing her own platelets!

There was a debate a couple days ago about whether to transfuse her the supply of matched platelets that was due to expire that night. I was all for it as I really couldn't stand to see bag go to waste (no, they wouldn't give it to anyone else for some reason), and as I figured that she could probably benefit from a bump.

The doctor explained that with a transfusion of blood product there is always a risk. As her count of 43 was not below the threshold they had set of 30, he felt that the risk outweighed the benefit. Besides, he said, her body had not been chewing up the platelets nearly as fast as it had been, so it might just be possible that she was on the verge of making them herself.

Wise doctor.

The very next day's lab results showed a boost of her platelets to 47. Today they were in the mid 50's. The girl is making them! As I said many posts ago, platelets are the last thing to "come on line" when the new cells engraft. We had heard that it can often longer, but 2 months is long enough for me!

We keep having hiccups with the whole transitioning of Zoe out of the hospital. She gets to a certain point in her hourly NG feed levels, and then she starts barfing. It's difficult to tell whether she had an allergy to the cow milk-based formula, or whether her GI is simply too sensitive. They switched her to goat's milk, but then she barfed shortly after they switched her from fresh goat milk to the powdered variety (for food safety concerns). So now she's back on the fresh goat milk, and we're waiting to see how that goes.

Also, her liver enzymes keep fluctuating. They upped her liver medicine, but there's not much else to do except keep trying to get more food in her gut. There's a whole lot of the "wait and see" approach to dealing with Zoe.

Again, outwardly she's acting like a healthy, boisterous kid who's getting sillier by the day. It's really good to see-- and Jeff and I are just so done with being at the hospital. She's getting more energetic; we are getting more and more exhausted.

In fact, yesterday I ran a red light because I was spacing out. No talking on the cell phone, just simply did not notice that the light was red. I drove into the intersection and almost became the inside of a car sandwich as two cars from each direction headed straight for me. Thankfully they were more alert than I: one swerved, the other braked, and no one laid on their horn. I think we were all too shocked.

Thank heaven for the competency of strangers!

Day +48

Well, I think I'm going to let myself relax on the daily posting approach--I mean, how many different ways can I say, "Zoe continues to do fine, but not fine enough to go home yet"?

I will definitely update when there is more news to tell. But, if no post shows up for the day, just assume that it's probably more of the same!

Day +47

A repeat of a liver ultrasound today showed that Zoe's gall bladder still has thickened walls and is full of sludge. But, her pain is considerably down (aside from a brief and intense bout of it just tonight), as are her liver enzymes.

They still aren't really certain what went on with her there, but they are keeping her on the antibiotics and upping her ursadiol doses (liver support medicine).

Other than that, we are spending a lot of time hanging out with a happy baby.

No firm word on when we'll go home. It feels like we're in a very slow moving limbo state, and it's hard not to get antsy.

Day +46

Zoe seems to peak at 10pm--no, scratch that, with daylight savings, 11pm.

So, I sit here torn between wanting to squeal and giggle with my baby because it's just so lovely to see her this way--and trying to calm her down so that she'll sleep reasonably soon and let me go to bed already!

So, so grateful that this is the main struggle of my day today.

What a way we've come, eh, Baby Girl?

Day +45

Another attending doctor has come into rotation--Bob Andrews. He is a very nice, gentle and grounded older gentleman who I liked immediately. He doesn't have the charisma of Manley, but as long as he instills confidence and calm in me, I'm satisfied.

Zoe seems to be back to her chipper and happy self, and she's having periods of time that she's so bursting with joy that she actually breaks out into happy laughter when she hears my voice.

Does a mama's heart good!

Her liver is still tender to touch and, as such, the doctor wants her to be on her new antibiotic for two weeks. It's still not quite clear what's causing the sludge in her ducts and her gallbladder to be inflamed, but they are calling it possible cholecystitis and treating it accordingly.

A friend of ours came to the hospital this morning and gave both Jeff and I an acupuncture treatment to help us with our exhausted, yet wire-y, states. Apparently Jeff had a very weak kidney pulse, and I had a very weak liver pulse. I can't remember the remedies for Jeff, but I'm supposed to eat red meat.

Apparently pork is not supposed to be the greatest for me.

But-- bacon!?

Day +44: Tip Toeing Back to "On Track"

Aside from the fever that Zoe spiked early this morning, things seem to be heading back to the former state of smooth sailing. She was happy today and not in pain.

I'd write more, but I'm experiencing this frustrating jag of not sleeping well on the nights I go home. No matter that I bulk up on the sleep aides those nights, inevitably I wake up at 2 or 3AM and can't sleep well after that.

Maybe it's just too quiet at home!

Anyway, I'm tired; thus the short post. Not that you'd complain, right? ;-)

Day +43: Eyeing that Rollercoaster...

This morning I woke up to the news that Zoe's liver enzymes were very high. It simply happened all of the sudden. Manley looked visibly concerned and, based on her recent history of extreme discomfort coupled with this new development, he opined that there was a 90% likelihood that the culprit was either infection or liver GVHD.

Hello, Worry! Was so glad you were gone for a fair bit...

Labs were drawn, meds were transferred back to IV form from the oral versions, morphine dose was raised a bit, and an ultrasound was scheduled.

I sat huddled in a corner generally catastrophizing and reeling from the reminder that Zoe, though she's looked hale and hearty for the last couple weeks, is indeed going through a major fracking process.

Blurg!

(you can really tell the shows I watch by the curse-word euphemisms I use...)

Our favorite nurse, Kelly (and no, she isn't our favorite because of her awesome name--and curses! today was her last day in our unit for two months!), talked me down from my terror tree.
She's a good one to do it as she went through a BMT with her own daughter not too long ago herself. Kelly said that even if it were an infection or GVHD that there would be treatment options--and that Zoe has demonstrated that she responds well to treatment.

She told us to get used to this rollercoaster ride, that it will be like this, will turn on a dime in an instant, that this is the nature of the beast we are riding.

So, we got the lab reports back showing decreasing liver enzyme numbers, and the ultrasound they took of Zoe showed sludge in her bile ducts, gall bladder irritation, and the possible start of a gall stone.

The 10% option had won out; her liver was likely irritated from hard work and lack of food moving through her gut for so long.

Manley came back in visibly relieved. He said that of the things that could be wrong with her liver, this was the best! Zoe was looking pretty good herself by then--not as uncomfortable and out of it as she had been for the last couple days. She even managed a grin for him.

They are switching her antibiotic to one that better deals with gut bacteria making its way up through the bile ducts (in case that's an issue). And, they are going to start all over again and gradually bring her up on the formula feeds through her NG tube. Irritation is best dealt with by getting her liver working on food digestion, but they want to ease her into it.

So, we are not going home on Monday, even though--so far--she's sidestepped a deeper pitfall.

Truth is, I really don't want to go home until it's clear that Zoe is stable. It's very comforting having the professionals always available to keep their eye on things.

Day +42: Bit of a Backtrack

It started yesterday, and ramped up today: Zoe's agitated misery. The theory that she might be suffering from morphine withdrawal developed, so they started her back up again on a small dose. Additionally, they gave her two boluses to get her to calm down and ease her high-pitched squealing that indicated pain and discomfort.

Poor baby!

While Jeff was with her today during my work hours, he swore that nothing but James Brown's music kept her calm. When I came back tonight it was playing loudly. He explained that whenever he turned it off her squealing started up, only to calm down when he turned JB on again.

Right now she's finally settled down back into her morphinated bliss. They will taper her even more slowly now, possibly using methadone to ease her back down.

James Brown?? Girl, who were you in a past life?

I don't know karate, but I know ca-razy!

Day +41: Happy Birthday, ZENDada!

Another, longer walk today with the girl. Fortunately her parents didn't wig out with neuroses as expected.

Little complications have been arising, such as more frequent emesis and traces of blood in her stool. So far it's watch and wait. Is it just the GI tract getting used to more things moving through it? Or, is it signs of gut GVHD starting to show?

Not worried yet, just wary.

I'm detaching myself from the expectation of Zoe really being discharged on Monday. As tonight's nurse told us, "Don't pack until they tell you that you're free to go." I guess she would know. The team is hyper vigilant with babies and doesn't want to discharge us only to have us immediately return due to complications.

I'm so fine with that!

Tonight we had a mini birthday party in the room for Jeff's birthday. Six adults and Zoe. Fortunately our nurse had no problem with people being in our room past visiting hours.

Bribing with cake never hurts.

Day +40

In case any of you noticed, I misnumbered and skipped Day+39 in my counting. Maybe I'm just a little too anxious to push this healing phase right along.

Next in Zoe's progression of steps towards normalcy was the ending of her morphine drip, which allows her to be unhooked from the IV for up to 4 hours at a time. Then-- she got to go outside for the first time in 7 weeks!

I was off to give a few massages today by the time that momentous occasion took place, but Jeff got to wheel her outside in the play yard. He said that taking her past the double doors that mark the entrance of the SCCA unit felt strange and unprotected. It will probably take a few practice runs before it starts to feel liberating!

No doubt we will be revisiting that experience new parents have when they take their fragile newborn baby out into the world for the first time: hyper-protective vigilance and a strong discomfort that everyone just may try to touch and/or cough on your baby!

But Zoe--and Jeff--survived the walk, and tomorrow she will have another excursion.
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A dear one has just let us know that she is organizing a benefit on Zoe's--and our--behalf at the amazing Theo's Chocolates (details in the post prior to this one). The gesture touches us deeply.

Again, we are humbled and rocked by the support of our community and look forward to when we can give back in kind.

Thank you all, and namaste.

March 15 Party & Benefit for Zoe!

This from JK&Z community member Diana Garde - Wow!

(especially note "FEEL FREE TO SPREAD THE WORD")

We would like to invite you to a special night dedicated to Zoe Elan Newton.

Here is the link to the e-vite (NOTE!!! Do not RSVP directly at the link, click on "invite more" to make sure you RSVP as yourself otherwise you will be RSVPing as Jon Howe!).

Come and enjoy appetizers, wine, music and chocolate treats.

Theo Chocolate will also have two factory tours during the event.

All proceeds are to benefit Zoe and her parents, Jeff and Kellie, while Zoe heals.

Tickets are $20 for adults and $12 for children to be paid at the door (check or cash).

We ask that you please RSVP by March 8th.

If you cannot make it, please consider a donation.

We hope to see you there, in the spirit of community, love and healing.

Feel free to spread the word!

Thank you Diana! What a wonderful idea to bring to life.

Day +39

Today we had our favorite nurse again--she was happy to watch lively Zoe for a few hours so that we could drive up to Edmonds and see my sister-in-law and her family. She is fighting for her life--and the cancer is showing itself to be a dogged adversary.

The life and death battle never really goes away does it? It's just that I've been so good for so long at living the illusion of immortality of my life and of my loved ones.

Death always ultimately wins the match, but it's Life that gets to roll around with Love.

Rumi, bless him, wrote in his poem "The Price of Kissing"--

"I would love to kiss you.
The price of kissing is your life.

Now my loving is running toward my life shouting,
What a bargain, let's buy it."