Sadbh refused to wear her
trach cap during the night but other than that she slept great and did not wake
until 7:20.
Granddad took over from
Helen at 6 and Sadbh was in a great mood when she woke up.
The weather was not great
today so Sadbh spent the morning playing with Larissa and Amy. She looked quite
tired much earlier than usual so we started her trach care ritual at 11 however
she had no desire to go to sleep. Amy worked hard to get her to sleep and after
45 minutes we decided to manage trach care while she was awake.
Thankfully she was happy
with that idea and was glued to her iPad and Kipper.
Everything went well and
afterwards we hoped that she would drop off to sleep but Sadbh had no desire to
sleep. She fought it for almost two hours and eventually she headed out for a
walk with Amy and Larissa. This unfortunately did not work either, as they had
to make a quick retreat when it started to rain.
It was a very long evening
for Sadbh and she showed no sign of slowing down.
Clodagh, Cormac and their
parents came by for dinner and Sadbh was beside herself with excitement. She
could not believe her luck and had a fantastic evening playing with her
friends.
I have no idea where she got
all the energy but she was still going strong well after her bedtime. It was
9:30 by the time she finally got to bed and thankfully she dropped off to sleep
quite easily.
Helen is working again
tonight so hopefully she will have more success capping Sadbh’s trach tonight
than she did last night.
Katie received a call from
the nursing agency first thing this morning and they informed her that our
insurance company was scaling back our nursing coverage from 16 hours to 8
hours per day, retroactive from April 1st. Our current 8 hours of
daily coverage would then end on May 31st.
Thankfully Sadbh’s
pediatrician called me back today and will support our appeal to retain our
current nursing coverage and we are waiting for Dr. Inglis to get back to us
with any support that he can offer.
It’s sad that the insurance
company can make such a drastic change to our coverage without any notice or
even time for us to react accordingly.
We are hoping that Dr.
Inglis gets back to us quickly so we can strategize on our appeal effort.
All the best,
Wayne, Katie and Sadbh.
No comments:
Post a Comment