All the best,
Wayne, Katie, Sadbh and Cillian
Friday, July 31, 2015
Thursday, July 30, 2015
Sadbh’s update – July 30 2015
Sadbh’s decannulation appointment is scheduled for
August 10th and she will be kept in overnight for observation. It is
crazy how all of a sudden this is and we are both excited and terrified for the
next phase of this journey.
All the best,
Wayne, Katie, Sadbh and Cillian
Wednesday, July 29, 2015
Sadbh’s update – July 29 2015 -- BIG NEWS!
Sadbh’s update – July 29 2015 – Photos
Katie received a call from Children’s hospital today,
as they wanted to cancel the consultation with the sleep study specialist. In
place of this appointment we scheduled a follow up consultation with Dr.
Inglis, however the soonest he could fit us in was September 14th.
We agreed to the new appointment date and sent Dr. Inglis an e-mail to update
him on her progress for nighttime trach capping and so forth. Katie also asked
if he had any thoughts on this.
The following is the e-mail exchange.
From Katie:
Hi Dr.
Inglis - hope you are doing well.
We just booked a follow-up appt with you on Sept 14 at 9am, but we
wanted to check in via email to see if there is anything to cover in advance
(Sept 14 feels like a VERY long ways away...).
We are very
eager to hear your thoughts on the sleep study results, but our expectation is
that they were probably better than the last one, but likely still not good
enough to consider de-cannulation.
The
interesting thing that we wanted to share is that the night after the sleep
study, she went on to sleep with her cap on through the night for two nights in
a row. Basically, we did not
remove the cap for 2 1/2 days.
This felt like major progress!
Since that
time, though, she does seem to have regressed a little. She is still falling asleep with her
cap on every night and on the nights where we have nurses (4 nights a week
currently), she typically wears her cap through until 5-5:30am and then she
gets a little restless and the nurse takes the cap off. We have asked her nurse to track her
vitals through the night and her O2 saturation and HR are always staying steady
and normal for her sleeping patterns.
She is able
to work through emotional challenges (ie if she gets hurt or upset). Where she used to need to have her cap
removed, she can now manage through her sadness and the cap stays on. We have been noticing some mild stridor
with the cap on during the day if she over exerts herself or also it seems like
especially in the morning, maybe clearing out secretions from the night?
Anyhow, we'd
love to get any preliminary thoughts you are comfortable sharing via
email. Its been an emotional
roller coaster ride for us. We see
huge progress, then some regression, then more progress and again regression. Its hard to know where we really
are, but we are all ready for Sadbh to not have a trach anymore. Even Sadbh recently said "when will
I ever get this trach out"?
Thanks in
advance and looking forward to hearing from you. :)
Katie,
Wayne, Sadbh and Cillian
Response from Dr. Inglis:
Well…
Her recent
sleep study is probably better than mine would be. Turning things around, her sleep apnea was so mild, that,
based on the numbers, we would never consider putting a trach in a child with
that kind of study, would consider offering an intervention like CPAP via a
face mask, but would not get too fussed if it wasn’t tolerated.
I would be
hopeful that some of the secretion issues would improve if we got the plastic
out of the airway.
My main
hesitancy to decannulation is that there is a possibility that with further
maturational healing her airway may get little tighter. This potential is mitigated somewhat by
the usual persistence of the tracheotomy tract following decannulation, meaning
we can usually get a tube back in if we need to.
My bottom
line is that I think we have likely hit the “sweet spot” with her larynx with
regards to airway vs voice preservation, and I would be comfortable with a
trial of decannulation. We could
set this up in August if you are game.
Andrew F
Inglis Jr MD
Attending |
Pediatric Otolaryngology
Seattle
Children's
---------------------------------------------------------------------------------
Katie and I are trying not to get our hopes up as we
have been down that road many times only to have our dreams dashed at the last
minute.
That said, if everything goes to plan Sadbh could be
decannulated (have her trach removed) sometIME in August.
It certainly has been an emotional afternoon and when
we told Sadbh her initial response was “I can go to Germany!” Later she added
Disney to her bucket list of places to go to after her trach is removed.
All the best,
Wayne, Katie, Sadbh and Cillian
Tuesday, July 28, 2015
Monday, July 27, 2015
Sunday, July 26, 2015
Saturday, July 25, 2015
Sadbh’s update – July 25 2015
Sadbh slept upstairs in her room next to ours and did
great until shortly after five when she fell out of her bed. Thankfully she was
not hurt and she did not seem fazed by it all.
Sophia’s father, Otto, and her brother, Silas, headed
home to Germany today and we were sad to see them go. We are all happy, though,
to have Sophia stay for an extra couple of weeks, especially Sadbh.
Our friends were camping up at Deception Pass this
weekend so we loaded up the car and headed up to hang out with them for a few
hours this afternoon. Sadbh was delighted to see Clodagh, Cormac and Ixchel and
soon she was stripped down to her skivvies so she could play in the sand and
water.
She had a great time and stuffed her face with all
sorts of sugary junkfood. It was all fun and games but she was a zombie on the
drive home.
Once home it was time for a bath and then trach care.
She was out like a light in no time.
All
the best,
Wayne, Katie, Sadbh and Cillian
Friday, July 24, 2015
Thursday, July 23, 2015
Sadbh’s update – July 23 2015
Sadbh slept great and managed her trach cap until
five this morning. Her breathing became labored and she grew very restless.
Once the cap came off she dropped back into a deep sleep and did not budge
until shortly after eight.
Sophia and her family returned yesterday from their
trip throughout the West Coast and Sadbh was thrilled to bits.
When she woke up this morning she wanted to head
downstairs to wake Sophia up. Thankfully she did not have to wait for long and
the two girls spent the morning having a great time together.
Sadbh was explaining to Katie today that she has a
few close people in her live that she loves very much. This is what she said.
“There are 5 magical beings that live in my heart”. She proceeded to list off
all the people that she loves and who love her, starting with Sophia and
Clodagh, and then naming all the rest of her friends. When Katie mentioned that
it was a long list and that she mush have a very big heart, Sadbh responded
with, “yep, I do”. And it’s true, she does have a very big heart.
All
the best,
Wayne, Katie, Sadbh and Cillian
Wednesday, July 22, 2015
Tuesday, July 21, 2015
Monday, July 20, 2015
Sunday, July 19, 2015
Sadbh’s update – July 19 2015
Sadbh had a good night and slept for the first few
hours with her trach capped. I think she would have tolerated it for longer but
since we did not have a nurse watching over her it was best to remove it incase
she had any difficulties throughout the night as we slept.
Sadbh was up and full of beans shortly after six. It
is really hard when she wakes up so early as she does not rest through the day
and is at full steam until she goes to bed which is usually close to nine.
It was a scorcher of a day so we met up with our friends
at Greenlake for a splash in the lake to cool off. Sadbh was thrilled to get to
hang out with her friends and she also got to play in the water for a while. It
was nice and refreshing and thankfully it was a lot less stressful than the sea
since there were not any waves etc.
By bedtime the house was like a sauna and Sadbh’s
room was 93 degrees Fahrenheit. It was way too uncomfortable so we moved her
into the basement bedroom since this was at least twenty degrees cooler.
She was still restless and this time she wanted me to
sit with her while she went to sleep. She usually has Katie sit with her but I
think she is afraid of being alone in the basement and feels comfortable if I
am with her.
It took a while to get her to sleep but she
eventually fell into a deep sleep.
All
the best,
Wayne, Katie, Sadbh and Cillian
Saturday, July 18, 2015
Sadbh’s update – July 18 2015
Sadbh slept great for the first few hours with her
trach cap on but became restless around one in the morning. Jirapa was keeping
a close eye on her and when she felt that Sadbh was struggling slightly she
removed the trach cap to relieve the pressure. Sadbh slept like a log for the
rest of the night.
Our friends, Hailey and Martin, were coming by for
dinner today and Sadbh was so excited to get to hang out with their three kids,
Ronan, Aoife and Oisin.
Katie and I managed to get trach care done just
before our guests arrived and as soon as Sadbh was dressed she headed out into
the back yard with her friends to show them her house. The kids had a wonderful
time but unfortunately Katie and I let our guard down and did not remind Sadbh
not to play in the dirt. Before long she was covered from head to toe in dust so
we had to give her a bath but thankfully we did not have to do trach care
again. It was a close call but it all worked out in the end.
The kids had a great time together but when it came
time for them to leave Sadbh was not happy. She was extremely tired and was
very disappointed that her friends were leaving. She must have cried for almost
an hour afterwards. It was a struggle to get her changed and into bed but as
soon as her head hit the pillow she was out like a light.
We don’t have a nurse tonight so I will leave her
trach capped until I go to bed.
All
the best,
Wayne, Katie, Sadbh and Cillian
Friday, July 17, 2015
Sadbh’s update – July 17 2015
Sadbh had another great night and slept again with
her cap on. This time, she also
slept with out the warm mist collar.
She was very proud of herself when she woke up.
She had a busy morning, running a few errands with
Daddy. In the afternoon, her neighbor,
Charlie, came over for a play date.
The two girls had a great time.
In the evening, Sadbh was in for a treat and we all
headed off to Clodagh and Cormac’s for dinner. Sadbh had a wonderful time playing with her friends and by
the time we got home, she was very ready for bed.
She fell asleep easily, again with the trach cap
on. Jirapa is making up a shift
and working tonight, so hopefully Sadbh will tolerate her again through the
night. Tomorrow night, she’ll be
sleeping up with us again.
All
the best,
Wayne, Katie, Sadbh and Cillian
Thursday, July 16, 2015
Sadbh’s update – July 16 2015
Sadbh had a wonderful night sleep and managed to
tolerate her trach cap without any issues or difficulties.
In fact, she wore it all day and it only came off in
the evening when Katie and I managed Sadbh’s monthly trach change.
Bedtime was easy as she was still very tired.
All
the best,
Wayne, Katie, Sadbh and Cillian
Wednesday, July 15, 2015
Sadbh’s update – July 15 2015
Sadbh’s sleep study did not go as hoped. She had a
fairly good night but she ended up wanting her trach cap off a couple of times
throughout the night. She slept well for the most part but the nasal cannula
bothered her and caused her to wake up numerous times.
She was in a good mood when she woke up and after she
adjusted to the light, the first thing she said was “this isn’t so bad”
touching the nasal cannula. She was
delighted to go home and she got a hot chocolate, graham crackers and saltines
for the road. She was covered in sticky glue from all the sensors so Katie gave
her a bath and scrubbed it out of her hair and then we managed trach care.
Later in the morning she took a nap and managed to
sleep for a couple of hours with her trach cap on. She was completely exhausted
and did not move the entire time. This was an indication that she did not sleep
properly through the night. We
think it might have been due to discomfort from sleeping in a strange bed and
connected to all the sensors.
That said, both Katie and I were extremely disappointed
with the sleep study and our dreams of a trach free Sadbh seem a lot more
distant than they did prior to the sleep study. Ultimately, we’ll have to wait and see how the doctor
interprets the results. August 14th
is the follow-up appointment.
All
the best,
Wayne, Katie, Sadbh and Cillian
Sadbh’s update – July 14 2015 – Photos
Tuesday, July 14, 2015
Sadbh’s update – July 14 2015
It was an early start and thankfully Sadbh was quick
to get ready.
Check in for our appointment with Dr. Inglis was at
quarter to eight and since Sadbh was his first patient of the day everything
was on schedule.
He checked out her airway and we discussed how she
has been since the surgery. He was pleased with the results so far and was
delighted to hear that we already had a sleep study already scheduled for this
evening.
The goal now is for Sadbh to spend the night at the
hospital in Bellevue and to wear her trach cap through the night as she sleeps.
The team there will monitor everything, from her REM, blood oxygen level, apnia
and so forth. The results of this sleep study should be available for Dr.
Inglis and his team to review in a few weeks and on the 14th of
August we have a follow up appointment to see how everything went.
If she has a “great” night without any issues
whatsoever we might have a chance to have Sadbh’s trach removed by the end of
the summer. If the results are not satisfactory we will have to keep the trach
in and may have to consider additional surgeries to open up her airway further.
I was explaining this to my sister on the phone today
and when I mentioned that we hoped that she would have a great night sleeping
with her trach cap on Sadbh walked up to me and whispered into my ear “daddy, I
am going to have a great night and I will get my trach out”.
I really hope she does! Either way, I am so impressed
how brave she is, as she originally had no desire to go to tonight’s sleep
study. It was only after she realized how important it is that she changed her
mind and went without any fuss.
All
the best,
Wayne, Katie, Sadbh and Cillian
Monday, July 13, 2015
Sadbh’s update – July 13 2015
Today was a much quieter day for Sadbh and it started
off with a nice long sleep in until half past nine. I think the last couple of
weeks finally caught up with her.
We had a wonderful day and all in all it was very
uneventful. She did manage to stuff a pea up her nose and thankfully I was able
to get her to blow it out while avoiding a trip to the doctor.
A valuable lesson was learned and I nearly puked with
worry.
We managed trach care just before bed and after some
hyper fooling around she finally succumbed to sleep.
Sadbh has an early morning post operation appointment
tomorrow with Dr. Inglis. Her airway seems to have improved slightly since the
laser cordotomy procedure however her voice has not returned to the level it
was prior.
She also has her sleep study tomorrow night so that
should give us some important data to compare with her previous sleep study.
All
the best,
Wayne, Katie, Sadbh and Cillian
Sunday, July 12, 2015
Sadbh’s update – July 12 2015
It was another busy day for Sadbh. Her cousins where
heading back to Hong Kong this evening so they came by for a few hours before
hitting the road.
Sadbh had so much fun with her cousins and was very
sad when it came time for them to leave.
After everyone left we got Sadbh ready for trach care
and some quiet time to decompress and relax. It had been a busy fun filled
morning.
In the evening her friends, Clodagh and Cormac, came
over for dinner. Sadbh was so excited and the evening was spent playing.
By bedtime she was exhausted so she was out cold in
no time at all.
All
the best,
Wayne, Katie, Sadbh and Cillian
Saturday, July 11, 2015
Sadbh’s update – July 11 2015
Sadbh slept great and tolerated her trach cap for
four hours. Katie removed her trach cap when we went to bed since we did not
have a night nurse looking after her.
Sadbh woke up in a very good mood and joined Katie
and Cillian in bed first thing.
It was Uncle Karby’s birthday so Sadbh, Katie and
Cillian headed off to Ali-Baba’s to join the gang as they prepared for Karby’s
birthday. Sadbh was so happy to get to spend more time with her cousins.
Dinner for Karby’s birthday was fun and Sadbh enjoyed
hanging out with all her cousins.
The restaurant we were in had a playroom for kids but
unfortunately this was off limits for Sadbh due to her trach and the need to
keep her clear from germs etc.
We had asked all the kids to help us out by not going
into the room until Sadbh left since she would have gotten upset if she could
not hang out with everyone if they did go in. Unfortunately, kids being kids,
it was not long before they all headed off into the play area leaving Sadbh
behind with all the adults. She was a good sport about it all and was happy to
watch a movie on the iPad instead.
By bedtime Sadbh was exhausted so it did not take
much effort for her to go to sleep.
All
the best,
Wayne, Katie, Sadbh and Cillian
Friday, July 10, 2015
Sadbh’s update – July 10 2015
Sadbh’s cousin, Belle Rose, had a sleep over last
night and slept in Sadbh’s bed upstairs. Sadbh had a great night sleep and woke
up good and early so she could wake Belle up so they could start playing.
The two girls had a great morning and after lunch we
joined the rest of Belle’s family for a trip to the Seattle Center. It was packed
but the girls all had a fantastic time dodging the water spray at the fountain.
They even got henna tattoos together but Sadbh ended
up wiping hers off just before falling asleep on the way home.
Once home it was time for a bath and trach care.
Sadbh was sad not to be with her cousins for the evening. That said she is very
excited to see them along with her Portland cousins tomorrow.
All
the best,
Wayne, Katie, Sadbh and Cillian
Thursday, July 9, 2015
Subscribe to:
Posts (Atom)