Sleepless Nights

Well, it seems that very little has changed in the sleeping department with Sasha. I had been sleeping in the house alone for so long that I had forgotten what poor sleeping habits Sasha (and dad) have. Sasha demands that we are by her side when she is sleeping and she does not tolerate us being far from her bedside. Before her surgery in December, I was determined to change her habits post-op so that our household could sleep more sleepily at night. BUT, Sasha has other plans for us. She is relentless and to be honest, sleep training at this point seems impossible. At this point I am more worried about the sleep habits of Sasha's soon to be born sibling. Will Jonathan and I not be able to teach this baby good sleeping habits? We never wanted Sasha to be upset and we always ran to her whenever she made a sound. Now more than ever we want her to feel safe and loved but at what cost? In my opinion, we can't continue having Sasha's sleep habits disrupt our whole household.
Anyway, maybe I will try and get some sleep in the spare room or maybe on the couch with Sammy while Sasha takes up 3/4 of our bed while Jonathan is curled up in a corner of the bed.
Good night. I hope everyone sleeps for all of us.


Emesis is our nemesis. Sasha has been on Metoclopramide for a few days to help with vomiting. After her fistula started venting again, she hadnt vomited at all yesterday and I thought it was gone. Last night, she guzzled about 2 ounces of her Resource mixed with 2 oz water and seemed thirsty, moving onto water from her bottle. She vomited early this morning, two totalling about 40 CC. Compared to the clear odourless vomit of before this was slightly brown and mushroom smelling including some of her food from yesterday. Wouldnt it be nice to close one door and only open one other? Thanks to Uncle Ofer for all the blue pads he helped us source, blue pads are our good friends.

Hold me closer tiny dancer

Hi Sasha !
Hey cutie, it is Kim, your dancing nurse friend from 4D. I just returned home from my family vacation away in Grand Cayman and I checked in to see how you were doing. I missed your happy departure from the hospital. I am so glad that you are at home with mommy and daddy and showing them your gorgeous big smiles ! I hope mommy is doing really well with the baby in her belly and getting some rest too. Please give Raggedy Ann, Raggedy Andy and baby Raggedy a big hug and kiss for me and here are some for you XOXOXOXOXO.
Bye sweetie !

Kim (R.N from 4D)

Fizzer fizzing again

Sasha's fistula is draining again after about 4 days of empty ostomy bags. It is probably the water she sucked back at around 11pm last night, she has mostly refused food or water in several days. The fluid is clear, no blood. We had hoped it had closed but wondered how that was possible with all the water Sasha was drinking before. That would have been the second major and completely unlikely surprise of our return, after the GI bleeding stopped spontaneously on the second day.

Reconnecting with Ellsworth

We started Saturday with a visit from Sasha's pediatrician, Dr Michael Peer, who thinks the clear vomit may be produced by all the coughing, and the cough may be from a bug she picked up. Sasha loves Dr Peer, she always has big eyes for him, and we love him because he is so positive.

When science doesnt provide a clear answer, such as why the bleeding stopped, we appreciate simple thoughts like: Sasha really wanted to go home, good for her! The good doctor splits his time between private practise at Bathurst and St. Clair, U of T's Department of Pediatrics and his paediatric clinical education work at Sick Kids so we bumped into each other while away from home and he joined us in the lobby on the day of our departure. Dr Peer's partner Karen is a nurse in CCU and 4 so we would also see her 'around'.

It was a lovely day and I walked barefoot over to neighbours who were adding plants while little James played, and we were joined by Liam from across the street, both are within a month or two of Sasha's age. She just looked around intensely, too early for smiles. Later we went for a walk, dropped in on an open house, bought a poppy and, after I wished Dvora and her kids Gut Shabes, were invited back to the Chabad Midtown garden, where Sasha spewed all over me while sitting on the climbing fort. Dvora didnt blink an eye. Walking home, we talked about Sasha's Hebrew name Shifra, which we remembered to mean Strength (um, actually it means Beauty). Both are true of our little girl.

That night mom, dad and Sean stayed for a barbeque and Kenny, Cindy and Lynn visited and hung out until Sasha went to bed. It took awhile for her to fall asleep and she woke up often during the night.

Navigating the stairs

Sasha was about to walk when we enterred hospital and with all the setbacks and the size of her belly we are back to carrying her everywhere.

Coming home with IVs we have to also carry all her bags and tubes and pumps, unless we have put heparin in the IVs and she is then footloose and fancy free, as much as you can be in our arms or on your butt.

Here is a funny picture of me bringing Sasha down the stairs with all the paraphenalia.


The last two nights Sasha has vomited a brown mushroomy smelling vomit. She did this before we left as well. And her fistula is not emitting. We are not sure what to make of it, nor is Dr Goldman. Her waist ballooned from the mid 50 cms to over 60 cm and seems to have subsided back to 59.5cm.

We always worry when the fistula output drops that we covered it when we put on her plastic ostomy bag and the eakin seal putty.

On a happier note, here is a picture of Sasha's first real bath in 5 months. Yeah Sasha!

The Return of Riley

One of the strangest and most welcome experiences on our return has been to give Sasha complete peace and quiet and normality. We change her IVs in the morning and at night, other than that we get to hear the birds chirping outside and during the last week we have enjoyed sleep ins with our little peach that are blissful.

After CCU, 4D was like a dream. As the nurses do for all longer term patients get to choose a core list of nurses. We took our direction from peach, if Sasha liked a nurse, we liked her.

Our core team was amazing and 4D did their best to ensure Jannele, Grace, Tessie, Julie, Riley, Rebekah, Jozaphine, Sarah, Lauren (to name a few) were available to us. We also had the privelage of meeting many other excellent nurses and nurse practitioners and nurse support, some of whose best wishes are on our website.

The nurses on 4D, women and men, are gentle, confident, positive people and I guess when they are pumping drugs into your daughter's artery you tend to be quite fascinated by their competence.

Riley is a Nova Scotian with a face like an angel who moves with quick bursts of energy. She is intense, quiet, absorbs a lot, always trying to help. Fancy our surprise when she kept in touch by email and then dropped in over the weekend. It was a full house that day and she kept a bit to the sidelines, quietly talking to Sasha on her bed, staying far away from medical talk. It was a neat change of roles and, what can we say, we love Riley! We hope she finds some lucky partner soon because this woman has so much to share.

So The Return of Riley really marked a turning of the wheel, an end to a cycle, a very welcome marker to how far Sasha had travelled. Can never say enough, to the nurses of 4D and 6A and CCU, Thank You Thank You Thank You. And of course the same for the doctors, they have to make the hard decisions, I will write about them another time ;)

So one of the markers of Sasha's journey has been the increasing quiet of her surroundings. In our move up from Critical Care to 4D to 6A and back to 4D we did our best to shield Sasha from unnecessary interventions by doctors and nurses and for most staff at Sick Kids this involvement of parents and respect for patients is part of their patient centred care approach.

However CCU is quiet akin to a war zone, forest fire experience - lots of noise, emergency operations on the bed beside you, constant monitoring and pushing of compensatory drugs, blood tests etc.

The wards are much calmer. Sasha was a bit unusual in that she was still bleeding so there were still daily blood tests and transfusions.

So although we did our best to buffer Sasha, there were always lots of interventions.

For a long while we would get the Gen Surg team at 6am checking in - I would roll over sleepily and mumble something about "output is down" or up or something generic like that. I loved the Gen Surg team. At the bleakest time when Sasha's liver was failing and she was bleeding, a tall Icelandic doctor named Gudrin appeared by our bedside in CCU chart in hand. The feeling was like (and I can only imagine) what a beseiged unit feels when they hear the cavalry or, a little more ominously, what a hostage starts to feel toward your captor: out of utter dependency comes a sense of complete relief. Another star on the Gen Surg team was Karen. The team arrived quickly and left quickly, checking in on all patients being followed by Gen Surg before their 6.30 meetings. It was a healthy start to the day being contacted by such an on the ball department, unfortunately not all Depts are the same in that regard.

So one of the reliefs of coming up from CCU to 4 and 6 was that we could sleep on a bunk beside Sasha. Or as Sasha preferred, in her bed with her. She would wake, turn her little head and if she didnt see one of us, she would shout out until the situation was rectified.

Some of the nurses were so quiet, they could screw in the TPN caps or take blood without waking Sasha up. Sometimes they didnt even wake me up. The quietest nurse was Janelle and so behind her back she was The Mouse. Sleep is like gold. It hurt us in a way to see Sasha sleeping through IVs beeping, the foghorn of the patience call button for the nurses, emergency calls on the general intercom etc.

So as we treasured our snatches of sleep, we treasured the nurses and doctors that respected the sign that said Sasha is sleeping, please come back. We treasured those with softer voices who were light on their feet as I could awake at even the rustle of a paper.

And seeing Riley at our house just reminded us how far our brave little girl has come and how long and hard she has fought. Still we take it Day by day.

Living unexpectedly

Its the sixth day, almost a full cycle on the first post of the blog and we are experiencing an amazing tranquility. Sasha slept in until about noon, she continues her occasional big coughs. We saw a swirl of blood entering her bag when she awoke but then it was gone. Still was enough for us to decide to keep the octreotide going. We all went for a very slow walk and Sasha saw our neighbour Janis for the first time, she looked at her warily ;) Pam got one of her occasional sharp contractions at the end. Then I went for another walk with my mom Marcia. We enjoyed the lovely shade along Ellsworth to St Clair and then jagged down to Alcina to enjoy the big and unusual houses. Sash was just closing her eyes on our return so I carried her to bed and she slept slept from 3.45 to just after 6pm.

Lazy holidays

Sasha stopped bleeding Thursday. We dont know what to make of it after weeks of constant bleeds and transfusions at the hospital but we know it gives us a bit more time together.

Marg came over midday and Pam went over resetting the CADD Plus pump that we use for octreotide. Pamela can now do everything from hep locking her PICC line to injecting vitamins and priming the TPA bag to setting up the octreotide and setting and resetting all the pumps.

The one thing we cannot do, and it was never planned we do, is the sterile proceedures for cap change. I guess that means I have some catching up to do.

Sash went for a walk around Wychwood park with Sam, Pam, Kenny and I and then we slept all afternoon.

Saturday and Sunday were lovely family days with Louis, Irene, Margot and Lynn in from San Diego, San Fran and Montreal. Lots of barbecue and visits and video and, when the family departed, quiet beautiful times in our house.

Last night Sasha didnt want to sleep. As always with her, we dont know if its a little girl playing with us to fight sleep or if something is brewing. She has a bit of a cold. The puffiness on her face from the first few days is now gone.

Heather also sent us the video she made on Thursday. No dry eyes in the house!

my peach at home

sasha has been home since wednesday and we all could not be happier. she has taken over our bedroom even though she has the prettiest bedroom in the house. we are slowly getting into a new routine everything seems very manageable.
i will write more when i am not so sleepy. i feel amazing having our whole family under one roof again and i hope we continue to help sasha be happy, comfortable and safe.

friday on my mind

She awoke uncomfortable and we put her back to sleep. There was no blood in the ostomy bag. I had a mixture of delicious fresh pasta. The food kept arriving and it was good. Sasha slept until about noon.

Jane dropped by baby boy Eli and Reina and Lisa were over and we brought Sasha down to say hi. Meredith dropped by with beautiful Sarah. It was just like old times.

Jeff dropped by to clear up the back. Kenny and Cindy visited. It began to rain again, I walked the plastic troughs I had laid to carry the water away from the house, enjoying the spout of water on the pavement and grass.

She just doesnt feel like sleeping tonight, she is bubbling with new words, moving the milk bottle back and forth between her hands, clasping with one and slapping with the other. Squeeks, exclamations, laughs in her throat as she drank the milk. Put the bottle down, rolled over. Another laugh, pulled at the bottle, repeat. Lorna and Reina are now hanging out while I write.

A whole new way

With the day, she slept soundly, I padded around the house, sat on the porch with a light rain and just breathed and relaxed.

Jeff came by at my Dad's request to clean up the front, edge the bed, mow the lawn, and we chatted over a coffee.

I called Stephen Jenkinson and we arranged a 4pm family meeting with Dr. Russell Goldman, the primary doctor on our home care team. I wanted the family to meet Stephen as he had helped us face our decision squarely.

We'd contacted Heather Rivlin who offers her services to Now I Lay Me Down To Sleep, a group of professional photographers creating tender sessions for paliative care children and families. The session was wonderful, slow, fun - here is a short video clip of Heather snapping pictures with us on the bed, I will post some pictures from the session soon.

Kim came over with Andy Shay cheese and we had a little feast.

Lorna, Marcia and Henry, Lynn and Raina were over when Stephen and Russell arrived. They met Sasha in the kitchen as we run through our concerns and then we all talked. What would help (just loving Sasha), what we wished to avoid (an endless vigil, innumerable phone calls to check the status).

Pam and Reina went to get nails down and Mark visited with Ethan, Theo and 8 containers of delicious pasta. Sean, Marcia and henry visited and I went with Sean for Sasha's first walk around the neighbourhood. She was wide eyed.

When we put her to bed, she went to sleep immediately!

I went out to meet Dom for a few beers on College Street to talk Sasha, life and tech.

Goodbye to Sick Kids 4D

I took a last walk to get coffee, camcorder running, thinking I would forget the animal painted hallways.

The day flew by. Trips to the car with the stroller, carrying out the animals and books and drawing boards and talking toys.

Choking up as we eventually walked past the nurses station where doctors and nurses milled to send us off.

Starting to feel the moment in the underground parking as we reached the car and looked at Sasha and ourselves and Sasha smiled.

Walking up the steps, watching her little face focusing intently. Still processing. And then a slow walk through the house, first the den where she had played, Sam twisting and turning and barking happily, then the kitchen where we pushed the buttons of a banjo playing fridge toy and watched her evolving intensity. Did she remember?

Then up to her room, to see the crib she had refused to sleep in, the books, the lovely flower light on the wall, the row of teddies and stuffed animals piled 3 foot high and 4 foot wide.

And then on the bed we had slept in before Sick kids we laid her to rest and she started to speak, a little bubble that grew, new sounds of happiness. And she slept soundly.

The nurses came at 3 and again at dinner time to orient us and themselves. The pump was new so the night nurses took a couple hours to deconstruct and reconstruct the TPN proceedures, patiently, with humour. Everything with CCAC was about what we happened, what would make us happier, more mobile. Such a relief.

Home sweet home.

Today is the day

After five long months at SickKids Hospital in Toronto we are taking Sasha home. Not as we expected and hoped, to continue our lives happily together, but to let Sasha go to sleep in her home, in our bed, surrounded by our love, at the time of her tired body's choosing, in as much comfort as we can provide.

This blog will give us a chance to celebrate her life and record her days at home.

Sasha has a severe form of Alagille Syndrome, born without a pulmonary artery and a very compromised liver that resulted in an early and severe case of portal hyptension.

Despite Sick Kids telling us there was great risk in surgery, her first shunt was a great success and we returned home within two weeks. She developed the severe itchiness that is a mark of Alagille along with an infectious laugh, a love of people and that wonderful baby curiosity. Just as she was starting to walk, we prepared for a second cardiac surgery.

We were bumped a number of times. And the foreboding and fear grew.

Her second surgery on December 14 began like the first, with internal bleeding. However this time the bleeding did not stop after the cardiac surgeon went back in. With the loss of blood to her lower organs, her liver went into failure. After her liver numbers stabilized she started to poo and vomit blood. When surgeons cut her open to see the site of the bleeding, she bled so much they quickly stiched her up. A fistula resulting from opening up her belly and she has been venting tummy fluid and blood for more than 3 months.

After 5 months of hope that some proceedure would right the balance in her little body after her second cardiac surgery, we decided not to go ahead with a TIPPS proceedure that might have stopped her GI bleeds by alleviating the portal hypertension that has developed in hospital (or possibly was lurking before).

When we looked at where she is now, and how far she has come back since the weeks following the surgery, we felt: enough.

We didnt want to put her through another 2-3 proceedures to give her maybe 1 or two more year of life, or not, with a high chance of death on the table, or coma, or confusion where she didnt recognise us for weeks.

Now she knows she is loved, she is not in pain and heartbreakingly she still has smiles and laughter for those around her.

When you enter the world of paliative care, you are experiencing life and death at the same time. We are all living and dying. With Sasha we are trying to live life to the fullest possible even as we know that she likely has only 3-4 days before she will prefer to sleep over waking.