Day +47: Outpatient Daze

Note: A bit of a cute picture round-up today, I had a few more inpatient pictures to get up before we move on.

Where to begin? So much has happened the past few days it seems like. It feels very similar to our first experience of leaving the hospital to care for Zoe for obvious reasons, however things are much more complicated this time around. We’re managing her IV pumps, oral meds, blood draws and cap/dressing changes now.

Hats handmade and given to the kids, most of whom lose their hair

Our first night out was a whirlwind. We left the hospital, headed to our apartment a short distance away, and began unpacking all of our things. We were scheduled for an outpatient nurse to come check on us and supervise our first night’s medical routines, but she arrived 4 hours earlier than we had been expecting, almost immediately after we arrived home. Add to it that we were exhausted and she was, well, a bit of a Drill Sergeant, and the evening was bumpier than it could have been.

We had just been lying down for a nap, Zoe was asleep, Maya was asleep, and Michelle and I wanted nothing more than to sleep — when the knock came. Grizzly, our dog, was still here at that point, and he got up to see who was there. Before I could get the door fully open, I heard, “is that a dog I hear?!”. Uh oh.

“Yes, but he’s friendly,” I said. “He’s going to have to go away,” she replies. So I shut the door, shuffle Grizzly off to a bedroom and return. No big deal.

We gather into the (only) central room to get acquainted. She asks us where our supplies are, and we explain that we haven’t had a chance to get to the store to buy a storage chest, we were expecting her later, so they’re still boxed up. This is met with what I can only describe as disdain. Clearly we have failed already.

We’re told that they would never schedule a visit as late as we’d been expecting, which is probably true. Unfortunately it doesn’t change what we were told, and not knowing better we’re now firmly confused as to where we should be.

We start to lay out our supplies on the table to make sure we have everything, when suddenly Maya comes charging in from the other room “flying” (she’s a big Tinkerbell fan) in her fairy costume, and bumps something that was left on a chair onto the floor.

“You’re going to have to control her! Do you have any Grandparents?! Can you call someone?”

Were I quicker with the wit, I would have explained that we keep them in the pantry nearby for just such emergencies, which seemed to be the expectation. Instead I replied that, yes, we do have my parents nearby and yes, I can call them. God help us if we hadn’t had someone nearby on call, who knows what might have come of our toddler.

Our gear all laid out, we begin to prep. It’s painful, and bumpy, and even though we have had training with demonstration gear we haven’t actually drawn the medicine before, so it takes a little learning. Each mistake is met with a look of disapproval as, though she sees us making it, she allows it to continue. In one case she pointed to a small puddle of medicine on the table mistakenly over-primed from the tubing, glanced at Michelle, and made a remark to the effect of, “now you know”. I am glad there were no sharp objects close by at the point, I fear we would have been needing a new nurse (I kid!).

By the end of the approximately 3 hour visit, we have prepped the IV nutrition and lipids, injected vitamins into them, started 3 timed medications through Zoe’s lines, flushed the lines repeatedly with saline consuming roughly 30 alcohol wipe packets, and given her her two direct slow-injection medicines. I would estimate we also shortened our lives by a month, give or take, just based on the stress. But who’s counting.

Zoe with her primary nurse.

Thankfully Zoe and Maya slept well that first night, and our two subsequent visits have been performed by patient, sane nursing staff who helped us get comfortable with the process of caring for a child fresh out of the hospital. Grizzly has not been “sent to live on a farm”, but has been packed off just the same to our actual home with his Grandad, who is the one who has been doting on him the most these past months anyway. I was sad to see him go, but he is much happier with a yard and his familiar sleeping spots.

We made it through the weekend, veering from one crisis to the next. We would begin a treatment (nervously, fearing any moment we’d cross a wire and blow up our baby) then realize we needed to do something else immediately after and swerve to that. Each night we collapsed on the couch, exhausted, nevertheless happy to be together once again, stressful as it was.

Zoe's new onesie, compliments of her primary nurse.

Each day has gotten better and we’re slowly creating a new schedule of duties to manage things. The important thing is that Zoe is doing great and Maya is happy to have us both back again. Soon we’ll be old pro’s at these new things, and the stress will dissipate.

Zoe’s labs have been good, she has not yet needed cell growth factor again (GCSF), nor has she needed platelets, blood products, or minerals. It’s astounding, we would absolutely have expected her to need them these first few days. She has also begun to drink her milk again very happily — she seems just as thrilled to be eating as we are to see it.

Day +43: Home Sweet Home (Away From Home)

Maya ready for the big day

We’re out! What a day. Maya and I arrived at the hospital this morning around 10 to help pack up and do some celebratory dancing while we waited for Zoe’s meds to finish. She’ll continue to be on various medications for awhile, and TPN (IV nutrition) for a few weeks until she’s eating normally again.

Zoe knows something is up

Zoe knows something is up

Our unit is still largely on isolation due to the summer cold that went around. Though most of the kids and parents were negative, we’re kept on isolation for the duration of our stay just to be safe. This meant that our confetti parade was  almost all nurses, with a few parents and kids watching through their blinds.

It was a really nice moment, though. We’re incredibly grateful for everything Duke and WFU have done for us. Zoe had what can only be considered a successful and relatively easy stay, considering her procedure, and I have to believe that Duke’s transplant expertise and care contributed heavily to that success.

From here on we’ll be outpatient, with clinic visits daily for awhile. We’ll be managing all of the things that the hospital managed while staying there, only now it’s split — med administration, blood draws and dressing changes happen at “home”, tests and checkups happen at the clinic.

I’ll go into more detail about everything once we understand it all, honestly it’s a little overwhelming.

For now, we’re going to get some sleep and enjoy being together again.


Day +42: Packing Up

It’s hard to believe, but we expect to be leaving the hospital tomorrow. It’s been a very long and painful trip so far, but we hope that the hard part — survival and cure — is done. Now we have to keep Zoe healthy, stave off GVHD and infections, and see her through to a new beginning, when she’ll be healthy enough to venture out into the world confident that she has a strong immune system.

We will be staying in Durham to be close to Duke for the next few months, give or take. It’s necessary to be within 10 minutes of the treating hospital in case of rashes or other signs of a problem. Once we have reached Day +100, we will be transferred to Wake Forest for ongoing care. Zoe will be seen daily for a couple of months, then weekly, and eventually monthly. After a year or so we’ll be on a yearly schedule of check-ins with her transplant doctors, essentially for life. She should be completely out of danger in a couple of years, but because she is part of a study we will be trying to keep in touch long-term so that the doctors have any data they may need to help other kids.

Zoe is doing well. She is feeling good, very energetic and doesn’t want to sleep very much at all. When she does finally give in, she sleeps soundly through the night. Her WBC count has been good, it dropped a little below 3.0 Monday night so she received a dose of GCSF to bring it back up. No major pain this time, we’ve learned how to navigate that a little more effectively.

The physical therapist came by for a final inpatient visit, and she was really enthusiastic about Zoe’s progress. Granted they are enthusiastic about everything, but she pointed out a few areas where Zoe has continued to improve. Her sitting is much better, she’s learning to catch herself to avoid tipping over, and she’s getting very adept with her fingers, holding and turning toys to examine all sides before giving them a nibble.

It was a relief to hear that Zoe is not “plateauing” in any areas — ie she continues to develop at her own pace, without any stagnation that might point to a long term problem. I have a feeling that once we’re out and she can be around her sister, who she adores already and is extremely active, she will do just fine.

I wrote awhile back about some of the chance encounters we’ve had along the way, in particular with a man on staff at Duke named Mikey. I had an opportunity to speak to him a greater length recently, and he gave me a copy of the poem he recited for Zoe one day. We found it really touching, and Zoe responded so well, calming down during a really rough patch, that I am pleased he was willing to let us have a copy to keep.

He has an interesting story. Raised in West Virginia by two teachers, he spent time in California during the 50’s and 60’s, then Paris, working as a choreographer for most of his life. He ended up in Durham working for Duke as a housekeeper later in life, and when asked why he’s still here he says that he feels God has a plan for him, and that he’s here for a reason.

Mikey volunteered to take on 5200, the transplant ward, after finding that much of the staff didn’t like working here due to the strenuous cleaning requirements. I’ve only seen two people up here doing the cleaning on this wing, both older than the rest of the staff and very dedicated.

The poem was originally written on a whim in response to a child named Daniel on 5200 who rarely spoke, but who Mikey wanted to connect to. He went in one day and recited it, and they were able to make a connection, speaking regularly after that whenever Mikey passed through their room. Since then he has occasionally recited it for kids who seem interested or who he through might appreciate it. We’re glad he’s here. A kind caring voice can mean a lot during hard times.

Under God’s Chestnut Tree

Hello my child, you’re sitting under my chestnut tree,
looking back and up at me.
My child, you’re under my chestnut tree,
the birds and bees fly around thee.
My child, under my chestnut tree, you gaze up
at the stars which look back at thee.
Yes my child, under my chestnut tree,
you look to your friends to play with thee.
Oh my child under my chestnut tree,
your parents began to run and play after thee.
And now my child, under my chestnut tree,
the eagle flies high above thee.
But do you know my child, who sits under my chestnut tree?
God looks down and smiles on thee.
And yes my child, under my chestnut tree,
God has chosen you, for don’t you know, you are he?
— Michael Hairleace-Harris

Closing In

Day +40. We have been in the hospital at Duke for forty-six days now. That plus our time at Wake Forest, and our inpatient days so far this year have totaled a little over seventy days. That time has brought Zoe to a new level of health but has worn her parents down with week-long colds and an injured arm. Our poor dog has even been sick! Everyone is healing of course and trying to focus on what has gone right, because most importantly, Zoe is getting better.

The unit itself has been a sad place the past several days as two patients died at the end of last week. They each had had a long, hard fight with their illnesses. Early on one of the nurses described 5200 as the place that families come for their last chance. That is the sober reality of a bone marrow transplant unit.

Our families had been fairly healthy prior to Zoe getting sick. We had never encountered any major health problems and probably took our own and our childrens’ health for granted. Having Zoe come close to death, and talking with numerous other families who have lost children, really puts in perspective how every day is a gift to be lived to its fullest, as all we really have is today.

In an effort to put our journey into perspective I took Zoe out and around the hospital yesterday evening while she was unhooked from her lines and given a pass to go off of the unit. We walked down to the main entryway of the hospital and Zoe watched with great interest all of the passersby, the fountain and the brightly lit, open, ceilings.

We stopped for a few minutes and tossed some change into the fountain while we made some wishes for the future. Then, we moved on to the courtyard where Zoe spent time outside, something we all take for granted, but something that she has not been able to do much of at all so far in life. She seemed to appreciate the breeze on her face and the chirping birds scampering about.

From the courtyard we wandered to the Children’s Outpatient Clinic wing where we stopped to check on Lucky the Fish. I think he recognized Zoe as he swished his tail and scuttled away to hide behind some seaweed, and when we went to find him he came out from behind the bushes, hovered in front of us and then scuttled off again as if to engage us in his game of hide and seek. We played a few rounds with him, how could we resist? We just love Lucky and his fish freckles. Seeing him reminded me of Campath Week and all the uncertainties we faced at the onset of Zoe’s conditioning. Now here we are almost at discharge with a new immune system intact.

Zoe’s nurse today commented that Zoe seemed to be back to her spunky self. Spunky. A nice description of our daughter. Today she herself has been playing hide and seek with her blanket, wiggling her head back and forth, smiling, and sticking her tongue out. She’s feeling pretty good it seems. She is having some issues with high blood pressure and taking meds for it. Her WBC is holding steady at 3.4 without growth factor and her ANC is 2312. The addition of Prilosec seems to be helping her spit-ups, and she is taking more of her meds orally, something that has to happen before we can be discharged.

So, she is on track and doing well. We are scheduled to leave the hospital on Thursday. It seems almost hard to believe but we are ready for the big day. Very ready!