All the best,
Wayne, Katie, Sadbh and Cillian
Monday, August 31, 2015
Sunday, August 30, 2015
Sadbh’s update – August 30 2015
Sadbh is doing really well and has only had a few
incidences of respiratory distress. Each time she bounces back fairly quickly
and without any serious issues. I’ve been sleeping in her room each night to
keep a close eye on her and it seems that she is getting a much better night
sleep than she did when she had nurses in the room with her.
Over the last week or so she has been discovering
boogers. While she had a trach she rarely ever had boogers but now that she is
trach free it is a new experience for her. There are mornings where she wakes
up and feels like she cannot breath but it is only a blocked nose and it does
not take much to clear it out.
All the best,
Wayne, Katie, Sadbh and Cillian
Friday, August 28, 2015
Thursday, August 27, 2015
Wednesday, August 26, 2015
Tuesday, August 25, 2015
Monday, August 24, 2015
Sunday, August 23, 2015
Saturday, August 22, 2015
Friday, August 21, 2015
Thursday, August 20, 2015
Wednesday, August 19, 2015
Tuesday, August 18, 2015
Sadbh’s update – August 18 2015
Sadbh has been doing very well without her trach and
has only de-satted a few times since last week. Each time she does, her blood
oxygen level will dip to 88% for a few seconds before bouncing back up to 99 or
100%.
After almost four and a half years of home care
nursing, tonight will be Sadbh’s last night having a night nurse looking after
her. We are all so happy that this chapter in our lives is now over and we are
looking forward to not having to share our home with strangers.
We have lost count of the number of nurses that have
looked after Sadbh and while many were useless and could hardly be called
nurses there have been quiet a few that were absolutely amazing, excellent at
their jobs and instrumental in helping Sadbh to get to where she is now.
Thank you to Jaripa, Helen, Harjinder, Nadia, Larissa,
Molly, Su-Jin, Julie, Kara, Jenna, Audrey, Danielle, Destiny and Caity.
All the best,
Wayne, Katie, Sadbh and Cillian
Monday, August 17, 2015
Sunday, August 16, 2015
Friday, August 14, 2015
Thursday, August 13, 2015
Sadbh’s update – August 13 2015
Sadbh had a restless sleep and at times she was
working harder to breathe. Despite this she never de-sated and her blood oxygen
did not dip below 97%.
We all had a wonderful day and the highlight was a
hike around Hurricane Ridge.
Sadbh and Cillian were exhausted when it came time
for bed and she was out cold shortly after the sun set. It was the perfect
ending to a wonderful day.
All the best,
Wayne, Katie, Sadbh and Cillian
Wednesday, August 12, 2015
Sadbh’s update – August 12 2015
Another great night for Sadbh and it seems that her
night nurse was completely bored since there was not much to do other than
chart Sadbh’s heart rate and blood oxygen levels.
She woke up shortly after seven and was quick to show
off her neck to Jirapa.
With the incredible developments on Monday we decided
to take the rest of the week off and head off for a quick trip out of town.
It was the first time we have been able to plan an
impromptu trip away and for the first time ever we did not have to bring a ton
of equipment.
Sadbh had so much fun on the ferry and was delighted
to watch the sun set on the peninsula.
The tide has changed in our lives and we are hoping
to get back to a normal life of adventure and travel.
All the best,
Wayne, Katie, Sadbh and Cillian
Tuesday, August 11, 2015
Sadbh’s update – August 11 2015
Sadbh slept like a log and her blood oxygen was
between 99 and 100% all night. I checked on her throughout the night and there
was no sign of strider as she breathed. This was a great sign and Dr. Inglis
concurred when he checked in at six. He was very pleased and immediately gave
the nurse orders for Sadbh to be discharged.
When Sadbh woke up she was very proud of her naked
neck.
She had a wonderful day and did not have any issues
whatsoever. When she exhales or speaks she has air leaking through her stoma,
but this will go away as her stoma heals.
Thank you all for the well wishes and support. It has
been a whirlwind of a couple of days and Katie and I are still in shock of it
all.
All the best,
Wayne, Katie, Sadbh and Cillian
Monday, August 10, 2015
Sadbh’s update – August 10 2015 - Trach removal day!!!
Sophia left for Germany very early this morning so Sadbh
did not get to see her off, as she was still fast asleep.
Sadbh woke up shortly after I arrived home from the
airport and she was sad that Sophia was no longer here.
Despite this we had a great morning hanging out with
Sadbh and we talked about her trach removal procedure.
When the time came we packed a couple of bags loaded
up all her medical equipment and headed off for the hospital. We dropped
Cillian off with Suzie for a few hours and then checked in at Children’s on
schedule.
It took a while for the nurses to get us set up with
a room and another couple of hours before Dr. Inglis was available to see us. Interestingly,
despite the new expansion of Children’s hospital, the room we were checked into
was next door to the room where Sadbh spent her last month when she was a month
old.
It had been a very busy day for Dr. Inglis but he was
very happy to see Sadbh.
We discussed Sadbh’s sleep study and he was very
pleased with the results. After going over the ongoing care plan, post trach,
he asked Sadbh to come over and asked if she was ready. Sadbh was more than
ready so he started to undo her trach ties. With the ties open he asked if she
wanted to pull her trach out herself. She did without hesitation and after
inspecting her stoma (hole in her neck) he covered it up with a band-aid.
Sadbh was in great shape and was so excited to have a
naked neck for the first time since she was four weeks old.
It was a very surreal experience and we did not know
if we should sing or cry, or both.
The plan for Sadbh is to keep her stoma open for as
long as possible incase the trach has to be placed back in. He wants to check
on her progress for the next three months and if everything goes well she
should be able to live a trach free life.
Later we received an unexpected visit from Su-Jin,
she was Sadbh’s nurse on her very last night over four years ago and she also
worked with us at home a number of times after.
She was so excited to hear the news that she speed to
the hospital as quickly as she could to see her friend Sadbh. It was emotional
and she was overjoyed to see Sadbh at this next stage of her life’s journey.
Suzie, Clodagh and Cormac stopped by later with
Cillian. Sadbh almost jumped clear across the bed to give Clodagh a big hug.
She was so proud of her neck without the trach and wanted to show it off.
By bedtime she was exhausted. Katie had headed home
with Cillian so it was just Sadbh and I under the watchful eyes of her nurse
and respiratory therapist.
It took a while for Sadbh to fall asleep and once she
dozed off her stats were perfect. Her blood oxygen started off at 100% and only
dipped to 99% once she was in a deep sleep. There was no sign of strider in her
breathing within the first hour or so and the respiratory therapist was very
pleased with the progress. Fingers crossed that she will remain like this from
here on in.
Katie and I still do not know what to make of today’s
events and it does not seem like the reality of it all has hit us yet.
The past four years have been a roller coaster of a
ride, some great moments and more than enough stress and anxiety to last a
lifetime.
We realized a very long time ago that our situation
as bad as it seemed to us could have been a lot worse and we are grateful to have
such an amazing, brave and compassionate daughter to love and cherish.
We also appreciate the love and support that we have
received from so many people over the past four and a half years. Parents,
brothers, sisters, friends and family near and far.
Thank you all.
All the best,
Wayne, Katie, naked neck Sadbh and Cillian
Sunday, August 9, 2015
Saturday, August 8, 2015
Friday, August 7, 2015
Thursday, August 6, 2015
Wednesday, August 5, 2015
Tuesday, August 4, 2015
Sadbh’s update – August 4 2015 – Photos and quote of the day
Sadbh is very excited about having her trach removed
and we have been explaining to her what the procedure is going to be like next
Monday.
Tonight while Katie was explaining to her about being
decannulated (having her trach removed) Sadbh said, “Princess Sadbh is going to
get ancannulated”. Thankfully Katie was able to capture it on video.
All the best,
Wayne, Katie, Sadbh and Cillian
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