Oh gosh where do I even start?! So much has happened in
these past couple of months. I’ve been trying to write this blog post for about
3 weeks now. I keep getting pulled away because something comes up. Our weeks have been filled with various appointments and labs.
Brent is really starting to progress a lot with his development tho. He’s started
clapping, blowing kisses & pushing air out of his trach which is his
version of talking! It’s amazing really because it takes a lot for him to push
the air like that! He’s such a happy boy, he cracks up a lot and he’s always
smiling (except during his bath and/or trach care, but hey can you blame him?!).
So where I left it last time we were about to see his ENT
docs for the first time in a while. It came to a complete surprise to us to
learn that Brent is known worldwide in the ENT world! Brent was discussed with
some World Renowned ENT doctors from the United Kingdom as to what was going to
be best plan for him to get through this major airway reconstructive surgery.
Now at the beginning of all of this we had it in our heads that after his
thymus transplant we would go into his airway surgery and by the age of two the
surgeries would be over and we would just have the conduit replacement heart
surgeries to do as he grows. Well ENT told us that they will not touch Brent’s
airway until after his first conduit replacement heart surgery. This could be
another 2-3 years depending on how fast he grows out of his conduit. They said
it’s also going to depend on all the other systems of Brent’s body and how
they’re working. They need Brent in top shape to be able to make it successfully
through the airway reconstruction. So as of now the airway is put on the back
burner and we turn our focus on the present.
We actually have to see ENT next week because of a growth
that has appeared in Brent’s stoma. Last week it was causing bleeding during
his trach change so ENT needs to look at it and see about removing it from his
stoma. Not sure what caused it or really what it is- possibly and huge
granuloma (which is the body’s natural way of closing an open hole). I just
hope it’s something that they can take care of with no hospital stay. It took
us by complete surprise and honestly freaked us out for a moment when we saw
the blood. It’s situations like these we are grateful for our training and
remembered the cardinal rule- just breathe.
Brent also picked up a trach infection this past week so we are treating it with another antibiotic in hopes it'll settle it. He's now taking 4 different antibiotics a day. I cannot wait to cut back on these after the thymus transplant and give his body a rest.
At the beginning of June, Brent went in to the hospital for
an overnight stay to have a sleep study performed. Ugh it’s the most awful
experience to see how miserable these kids are during the study. They have
wires and leads all over their face, chest & head. He had a entitle up his
nose which he despised the most. At one point he was getting so upset I was
ready to pack up our stuff and leave haha good thing hubby was there to calm me
down- teamwork;) anyways it took 4 weeks for the results to come back. His
pulmonary doctor called giving us the news that Brent passed his sleep study
and gave us the go ahead to take Brent of the C-PAP support! The results did
show that he has mild to moderate sleep apnea but it’s something that should
resolve itself in time. We weaned him little by little every night. **I’m so
excited to tell everyone that Brent’s been sleeping on his trach collar for
about 2 weeks with absolutely no support. This is the first time ever in his
entire life sleeping with no support, doing it all himself! This is such a huge
accomplishment. We couldn’t be more proud of him! This was the very last thing
we were waiting on for the thymus transplant. We did some lab work to check on
how he was doing at the beginning of the week, and I can say with a huge smile
that his results came back good! He’s breathing in & exhaling perfectly.
Keep it up sweet boy!
Brent’s doing such a great job respiratory wise but our
little guy is having a seriously hard time gaining weight. He’s been 14 lbs for
the past few months. He is slowly getting longer which is good. His blood
calcium his been high for months so we’ve been adjusting his meds according to
his labs. The kicker is that we cannot increase his feeds for him to gain
weight with his calcium being high because it’ll increase it even more from the
calcium in the formula. His most recent lab work showed that his calcium has finally
come back down to normal so I’m going to hop on it and see about doing
something for the little guy and get some more food into him.
We also met with his Nephrologist (kidney docs) about a
month ago. I’d been dreading that appointment, not really knowing what to expect
but just somewhere in my heart knew something and my mind just wouldn't acknowledge it. It absolutely crushes my heart & soul for me to share the bad news we
get because I want to be nothing but positive for our sweet boy. The doctor
said that Brent’s kidneys have, in fact, gotten smaller since September 2013.
They measured at 5cm in September and 4.7cm recently. He’s diagnosed with
Chronic Kidney Disease-Stage III. Both kidneys are working at 40%. The positive
news out of this is that they are working well enough for him to be cleared by
the doctor for his thymus transplant. At this time we’re not going to dwell on
the fact that Brent will most likely need a kidney transplant in
the future. As to when, we don’t know. When we got this news it took days to
accept it. I still struggle from time to time and breakdown thinking about it. It’s
our worst nightmare from the very beginning coming back to haunt us. Not that we’ll ever give
up but it’s a process mentally; we feel & experience every emotion you
would expect to from this but we try everything in our power to get into a
positive state in which our sweet boy needs us to be in. We are all watching
his kidneys closely and refuse to give up our faith that they can still
possibly recover. Brent has proved many things wrong in the past and is living
proof that miracles do happen. One thing at a time we've learned works best for
us and for Brent. We’ll take it one day at a time and we’ll do it together.
To show just how small our world really is, we've been connected
with a family who has a beautiful 3 year old girl who 2 years ago received a
thymus transplant at Duke to help with her lack of t-cells from complete
DiGeorge. Their sweet girl has other complications different from Brent, the
two basically just share the lack of t-cells, but it’s given us a new found
hope and to see the success that it’s brought this little girl and her family.
It puts a smile on our faces and gives us something beautiful to look forward
to. She’s able to go into public and play with her cousins and live a somewhat
normal lifeJ
Having a set of parents who can relate to us on a level that no one else can
has been an absolute blessing. We spoke for a long time on the phone sharing
stories. I got off the phone that first time & cried, thanking God for
sending this family into our life because they've been the positive that we so
desperately needed. They assured us that Duke was the right place for Brent and
he will be in the very best care there. We want them to know we think of their
sweet girl every day and they’re not in this journey alone. We look forward to
the next step of our journey down there and thank God every day that our sweet
Brent has hung on this long and that we’ll have many more years together with
him.
When I think about Duke I look at the months coming up in
the near future and September is right around the corner. Our LilaBug will be
going into Kindergarten! AHHH! 5 years have flown by way too fast. She reminds
me every day that she’s almost 6 haha (in like10 months). She of course still
remains her positive little self and is our big helper with her baby brother. I love it when she catches him chewing on one
of his chords or something and is like “No, no Brent. You can’t play with that.
You can get seriously hurt. I’m just watching out for you.” Such a little Mama
herselfJ
We still worry about her every day and try our hardest to make sure we have
special time with her. I cannot wait until our days slow down and we can live
somewhat normal lives. I know she looks forward to those days as well; she has
so many things she wants to show and do with her little brother. We keep those
positive thoughts and dreams close to us and we’ll get there one day. Patience…
We've done everything on our end to get Brent ready for the transplant so now we're just waiting on a few clearances on a research basis on Duke's end. They are getting ready to present Brent to the BMT board at Duke, where all the doctors will discuss what is going to be the best treatment for him. This is a huge step so hopefully we'll hear something soon.
Our community has really shown us just how wonderful people are
and how much we all care about one another. The Chive of VA had an event in
honor of Brent in VA Beach at the beginning of June. We are so touched that
they shared our Brent’s story and celebrated our son. It touches our hearts and
we thank them so much!
Our friends created The Sunshine
Event for Baby Brent that took place last Saturday 7/12/14 at the Fredericksburg
Fairgrounds. All the amazing people who put it together and all the volunteers have
a special place in our family’s heart. All the time & effort they have put
into the event, it means the world to us. Whenever I tell someone about it, I
tear up and get emotional because at the beginning of our journey we never felt
so alone, which is the complete opposite of how we feel now. We’ve never felt
more love and support for our family ever. I want everyone who has helped put
these events together, everyone who donated auction items, money etc., everyone
who came out for the events, and everyone who played a part in promoting the Sunshine
Event to know that you’ve truly made a difference in our family’s life. This
had been more than we could have ever dreamed of. To have our entire community
pulling for our Brent, I mean the feeling is almost indescribable. You’ve all
shown us that we’re never alone in any of this. We’re all here together. Thank
you from the bottom of our hearts. Peace. Love. & lots of Hope.<3