First , let me get you up to date: Mason’s genetic tests for
surfactant deficiency all came back negative! This is great news because it
gives us hope that his condition may not be life long and/or life threatening.
However it also means we still don’t have an exact diagnosis.
Now onto the next BIG, HUGE, EXCITING, SCARY step…….
As I mentioned in my last post, we
have been in contact with Dr. Deterding from Children’s Hospital Colorado. I think I can pretty confidently say she is
in the top three, if not the leading, doctor involved with chILD. Jonathan has been working very diligently with
our doctors here in Tulsa and the team in Colorado to get all of Mason’s
medical files transferred. After reviewing all the information, our doctor told
us the stack was about a foot tall, Dr. Deterding has agreed she needs/wants to
see Mason. In fact, she wants to see him next week. So on Sunday afternoon
Jonathan and I will be heading out with Mason to Colorado! This is not going to
be an easy trip for several reasons yet we are excited to go and we are
determined this will be the end of our road to diagnosis of Mason. Mason has always been borderline on needing
oxygen but since the altitude of Colorado will likely bring his saturation down
3-4 percentage points he will need it at night and possibly 24/7 depending on
how he does. We have an oxygen saturation monitor we will be using to make sure
he is doing all right. Mason has never worn oxygen so this may be an
interesting challenge. Here is our schedule for the week:
·
Monday morning we will meet with Dr. Deterding
for the first time. She conducts chILD clinic days that day. I’m very anxious
to hear what she has to say about Mason after reviewing his files. We also meet
with the surgeon that day to discuss Mason’s procedures.
·
Tuesday afternoon Mason will have a iPFT (infant
pulmonary function test) done. Here are two links explaining the iPFT:
·
Wednesday we actually have free. Hopefully we’ll find some fun, germ
free, activity to do with Mason!
·
Thursday is the big, scary, exciting, nerve wrecking day. Mason will
have a bronchoscopy (this will be his 3rd so I’m good with that) and
a lung biopsy. I wish so very much that he didn’t have to have this biopsy or
that I could somehow have it for him. However I know that this is our last
resort. We have exhausted all other
options and this is our best shot at getting a diagnosis. I know that Jonathan
and I made this decision with a heavy heart but a very sound mind; that doesn’t
make it any easier. I dread this day but I also look forward to the knowledge
it will hopefully bring us.
·
The next few days will be all about recovery for Mason. I’m
confident in the doctor’s abilities and I know how strong Mason Man is. We got
this!
This week in Colorado is something Jonathan and
I have been hoping for yet dreading for some time now. Being able to meet with
such an amazing team that has expertise in chILD is absolutely invaluable. To
think that at the end of all this we may have a diagnosis of which chILD
disease Mason has is so very exciting. With that information we can better
understand what his future looks like and we can create and implement the
absolute best treatment for him. I want nothing more than to know I’m doing the
right thing and everything that I can when it comes to Mason’s health and well-being. Mason will be wearing oxygen & saturation
monitors, he will have test & blood work done, he will be seen by many
doctors and after all that have a lung biopsy. I hate that Mason is sick. I
hate that we don’t know exactly what disease Mason has. I hate that to find out
we must go thru all this. I hate that I can’t take his place. However I know
that Mason is a strong, loving, sweet, precious boy that will get thru this. I
also know that so many of our dear sweet friends and family reading this blog
will be sending up prayers to surround Mason throughout the week and especially
on Thursday. I hope you all know how much you are appreciated!
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