Today is the day James
Douglas is getting his G-Tube along with a host of other services. The goal is
to expose him to as little anesthesia as possible making JD’s plate very full
today.
Before surgery - he knows something is up |
11am
As someone who has been
honored with the award of Most Organized
I am fascinated by the team’s scheduling of today’s events:
Step 1 –
Dr. C will perform the G-tube surgery – this
man makes we want to ask for a hug. When JD was just 1 month old, Dr. C was
the doctor who out of everyone else recommended we hold off on the G-tube
until he got a little bigger. It seemed, from Day One, he had JD’s health
and safety and our comfort in mind. Fast forward to today when he came in about
4 hours prior to our OR time to discuss the G-tube surgery again. Even though he
had already discussed everything with Nate he took the time to give me the detailed
information. Plus, he made sure if for any reason we were uncomfortable with
this surgery we could take a step back. Not many surgeons are willing to let
you back out just a few hours prior to surgery because their time is very
precious. Yet, Dr. C made sure we had no questions before moving forward with
the procedure.
Step 2 –
The team will call ENT to come in accomplish two goals:
1)
Check his ears,
clean his ears, and look for fluid. If there is fluid they will insert tubes to
help with his ABR hearing test.
2)
Place a flexible
scope down his throat to look for any obstruction, called a Flexible Bronchoscopy.
This will be an altered version the ENT Test 2 they originally wanted to
perform but was not cleared by neurosurgery. ENT knows they are not allowed to
move the neck, which is why this test has the word “flexible” in the title.
From what we can tell, this test will not give us all the information the doctors were looking for but it can give us
a better feel for what could be causing the obstruction.
Step 3 –
Audiology will be called in to perform an ABR hearing test seeing as he failed
his two newborn/infant screenings.
Step 4 – Ophthalmology
will join the party to perform an eye test to look at the anatomy and structure
of the eye. This test can give us our first clues as to what JD may be at risk
for in the future.
Step 5 –
Anesthesia will monitor his vitals and breathing the entire time as well as
slowly bring him out of anesthesia. JD will be intubated during the procedure
so he will need to be extubated once he is prepared to breath on his own.
Step 6 –
Bring him back to his room to settle in for the night and recover.
2pm
OR had him scheduled for 3pm
but called him down early. We were able to stay in the pre-op room with James
until they took him for anesthesia. This allowed us to meet all of the doctors
and once again Dr. C gave us the opportunity to ask more questions. When they
built this hospital the designers truly had kids in mind. The hallways are
bright and welcoming with warm colors and beautiful pictures. The MRI rooms and
machines are underwater adventures carefully painted to give the feeling of
beginning a voyage. And the OR floor has what I call “flight boards” – 50” flat
screen TVs throughout the halls listing arrivals, in-flights, and departures
throughout the OR. I tried reading some of the procedures and only understand
one. Guess I still need a bit more medical training.
Anesthesiologists tend to
have big egos (Nate hates when I say stuff like that) but we loved Sam (not
even sure that was his name but he looked like a Sam). Ultimately, you want to
be comfortable with everyone in your child’s operating room. However, if you
are only comfortable with two people in the OR it should be the surgeon and the
anesthesiologist. Check and Check.
Not this again |
You would be pretty mad too if you were in this tiny isolette |
3pm
HUGE storm just rolled
through the city with sheets of rain for about 15 minutes. Every doctor that
walked by our room came in to look out the window to say “Whoa, that is an intense
storm. I guess we need it but I hope I don’t have to walk to my car in the rain.”
Well, since we are all here now let’s stay dry by moving into an OR and getting
this party started.
Still in the OR pre-op room
waiting for “Jeff to verify.” Two things with that:
1
- Who is Jeff?
Dr. Jeff? He does not sound very official.
2
- What does
“verify” mean? They never have to “verify” anything on Grey’s Anatomy.
3:30pm
Jeff verbally verifies via
phone (still have no idea who Jeff is and what he is verifying) making Dr. C (and
team) ready to go. Last few kisses and love to send JD off. With Dr. C and Sam
leading the charge we feel confident in JD’s team.
3:45pm
About 15 minutes after
settling in to JD’s room I received a call from Dr. C letting us know audiology
was unable to do the ABR test today. At the same time Dr. M (the Attending)
came into the room to tell us the same thing. Dr. M had given the okay to
proceed with the G-tube without the ABR test but Dr. C (once again caring about
our concerns) told me he wanted us to give the final OK. He said he would not
proceed unless we are okay knowing JD will need an additional test at a
separate time.
Thank you Dr. C! Yes, please
proceed.
5:35pm
Two hours later Dr. C called
to say they were done with the G-tube which took a bit longer because he needed
a new IV (his IV “went bad” right when they started transporting him down to
the OR). In my excitement to hear Dr. C say the procedure was complete I did
not ask how the surgery went but my guess, if he said nothing then all went
well.
Step 2 – In Progress
Step 3 – Postponed
Step 5 – In Progress
Step 6 – Waiting
6:15pm
JD is back in his room
looking good but sleepy. To keep him warm they have a Giraffe Warmer for him as
a precaution. He will stay in the warmer until we can put clothes back on him.
Our big JD looks enormous in the warmer compared to how he looked when he was
just a few days old.
6 Days Old |
3 Months old |
The stream of doctors came
in to tell us about the procedures:
Step 1 –
G-tube surgery went well with no complications. Currently they are draining any
air or fluid from his G-tube so they can start giving him Pedialyte through the
tube tomorrow. Hopefully by Friday night they can start his milk and by
Saturday he will be up to full feeds.
Step 2 –
ENT cleaned out his ears and did not find any fluid. No fluids means no tubes.
I have said it before and I will say it again JD runs the show around here. The
docs think one thing but JD has his own agenda. Plus, the flexible bronchoscopy
showed he has no anatomy abnormalities and his vocal folds look good. We think
this is good news but we are not quite sure what Dr. M will say.
Step 3 –
No test = no updates. ENT spoke to audiology to let them know they can proceed
with the ABR hearing test. Actually, the ABR can be done bedside with no
anesthesia as long as it is a quite environment.
Step 4 –
Ophthalmology completed their test and in true fashion we have not heard
anything from them yet. Ugh!
Step 5 -- Sam
told us JD was great with no problems being intubated or extubated. Adding to
our love of Sam he placed a truck sticker on JD’s G-tube which made it look
super cute and less scary. Yay Sam.
Step 6 –
Chillin’ in his giraffe. They have a nasal cannula in to help with his oxygen
as he comes out of anesthesia but he should have it off by tomorrow. It is
obvious he is in some pain as he cries out with a pained look on his face but
overall he is comfy. Watching him slightly uncomfortable makes me even more
grateful we avoided Spina Bifida surgery. Counting our blessings today.
Tonight, I will be staying
at the hospital with James. I was denied this opportunity on the day he was
born making this my chance. So tonight I will snuggle with my boy (as much as I
can next to the Giraffe) as we watch the last few episodes of Downton Abbey Season 2. Oh how I wonder
if Matthew will go through with the wedding and what will happen to Mr. Bates?
Thank you for the prayers.
Keep them coming. Good night.
Enjoy your night of snuggles. Thinking of you all.
ReplyDeleteHave you already been told about the AWESOME things called My Button Buddies? They are online and have a facebook. Several moms told us about them and we love love love them. They help with the g-tube and they look super cute!
So glad that all went well. Hugs and love to the big man. He is such a trooper! xoxo
ReplyDeleteFinally had time to read your blog and meet JD. You have had quite a journey with him. I hope you will be able to bring him home soon! Thank you for your supportive email a few weeks ago... Sommer (Owen's mom... Lovingowen.blogspot.com). I will keep reading so keep writing- I look forward to hearing what is in store for JD next!
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