St. Louis Recap
We made it through a very long and very tough week. The impact of everything Jack has been
through this year was clearly evident in how sleepy, weak and “out of
it” Jack was the entire week. I
did have to remind myself that Jack did just spend two and a half weeks in the
PICU just a few weeks ago and he did have significant trauma to his kidney that
he is still recovering from.
That said, I fear the changes we are seeing in Jack are, in fact, his
new normal. His body is tired and
he doesn’t have any reserve so it doesn’t take much to knock him down. Simply sitting in his wheelchair wipes
him out. It’s even hard for
him to muster a smile these days, but he tries. He really, really tries.
In any event, the detail oriented me, will now give you the detailed
update.
The Trip
Jack tolerated the trip well. It was the right decision to get the motorhome because he
was able to travel laying down. We
used the sling from Jack’s lift to get him in and out of the motorhome and into
his chair – with Mark and I being the “lift”. It made the transitions in and out of the motorhome much
smoother and easier on Jack … and us.
Eric was in heaven and claimed that this was “the best road
trip EVER!” However, by day
three, he was asking if he could fly home.
Our wonderful friends, David and Amy, who so graciously allow us to
invade their home for the week, were happy to see Jack.
The weather has been beautiful for most of our stay, turning cold just yesterday. I love St. Louis this time of the year.
The weather has been beautiful for most of our stay, turning cold just yesterday. I love St. Louis this time of the year.
Jack enjoying the beginnings of Fall foliage.
The Appointments
TUESDAY:
Cardiology
Our first appointment of the week was with the
cardiologist. The appointment
started off with a trip to the “Heart Station” where Jack got a routine EKG and
echocardiogram. In the past, after
these tests, we see the cardiologist and he says everything is fine and we go
on our merry way. I don’t really
know Jack’s cardiologist that well because I’ve never had to interact with him
much.
This time things were different. I suspected something was up when they took twice as long as
usual to do the echo. If you
recall, I suspected that Jack’s heart had taken a hit after
everything he has been through this year. I based this on the extreme changes in Jack's heart rate that would regularly occur. Sometimes it would hang out in the 40s and other times it would stay in the 140s+.
After finishing up at the Heart Station, we met with the
cardiologist to go over the tests.
The EKG was fine, but the echo showed a significant changed in the
ejection fraction of Jack’s heart.
Two years ago, Jack’s ejection fraction was 45%. It is now 27%. Two years ago, it was in the high
normal range. Now it is just below
the low normal range. The
concerning part is not so much the number (although the number is far from
great), but the extreme drop in only two years. The cardiologist presented the information to me and said
that we need to start Jack on a medication that is used to treat people in
heart failure. The medication can
cause drops in blood pressure, so I had get the prescription filled and then
come back to the clinic to have them give the medicine and then have his blood
pressure monitored for several hours.
We also had to call in and give them his blood pressure readings the
remainder of the week (from when it was taken at other appointments and during
his time in Same Day Surgery). So
far, there have been no issues with blood pressure.
Needless to say, that while the news of Jack’s decline in
heart function didn’t necessarily surprise me, it certainly has affected me –
as well as a lot of other people who know and love Jack. We’ve all been in a funk this
week. The significance of the
decline has been made very evident in the subtle reactions I’ve observed from
Jack’s other doctors with whom I’ve shared the information. According to Jack’s neurologist, Jack’s ejection fraction is
equivalent to a 25 year old with Duchenne Muscular Dystrophy (a form of MD that
they know for sure affects the heart muscle).
What does this decrease in heart function mean? We know that it can’t be reversed, even
with medication. It’s likely part of the
reason Jack doesn’t have as much energy and why things like just sitting in his
wheelchair exhausts him. I don’t
really know how much the medication will help with this. I think more than anything, the thing
we really need to focus on now when making decisions regarding Jack's care is his quality of life, not the longevity. It doesn’t mean that
Jack is going to die tomorrow. It
could be tomorrow or it could be five years from now. Obviously, no one knows. But certain decisions have to be made based on this new information. It’s not my intention to “dramatize”
this new finding, but the fact that Jack’s heart is now being affected by his
disease is a big deal. It’s why
when I get home I need to find a new pediatrician - someone who can help us navigate this new phase of Jack’s
disease progression.
Anyway, on to the rest of the week.
WEDNESDAY
Neurology
Not surprisingly, the “talk” at our appointment with Jack’s
neurologist centered around the news of Jack’s declining heart function. Jack’s neurologist already knew my
concerns regarding all that has been going on with Jack because of our recent
telephone conversation. We
hung out in clinic and talked for awhile and then we went to lunch together and
continued our discussion. After
lunch, she walked with me to the hospital pharmacy to pick up Jack’s heart
medicine and while there, she wrote a script for some Ativan for Jack
(something my pediatrician wouldn’t do).
She then went with us back to cardiology and helped me get Jack out of
his wheelchair and changed. She
spent close to three hours with us just being there to listen and offer her
support and guidance. I am so blessed and
grateful to have such a special relationship with Jack’s neurologist. She is SO good to us.
Anesthesia Pre-op
I met with an anesthesiologist prior to the procedures on
Friday to go over Jack’s history.
The anesthesiologist was somewhat concerned about the news regarding
Jack’s heart. But, I reminded him that Jack had just undergone several two and
three hour procedures/surgeries in Phoenix and he tolerated them fine, so he
should do fine with the broch and EUA – which didn’t required the same level of
sedation. He agreed that the fact he tolerated the recent surgery
without incident was a good sign.
THURSDAY
Ophthalmology
Nothing surprising from this appointment. There is no new cataract forming. What
we thought was a cataract is the capsule of the lens implant.
Orthopedics
Jack’s orthopedic surgeon compared Jack’s x-ray immediately
after his spinal fusion surgery six years ago to a current x-ray and the degree
of curvature was exactly the same, despite the fact that Jack looks like his curve
is worse. The ortho said it’s just
a factor of Jack getting bigger and getting “more muscle”. He clearly had
Jack confused with someone who doesn’t have a neuromuscular disease.
I have to say I was a bit of an emotional mess on
Thursday. Both the ophthalmologist
and ortho were running an hour and half behind – so there was a lot of down
time. Jack was unusually tired –
he had his eyes closed most of the day, which is so not Jack. I’ve never seen him sleep during the
day except when he’s under the influence of drugs – which he was not on this
day. All the waiting, seeing Jack so
out of it and reflecting on the news about Jack’s heart just had me fighting
tears all day long. I try and
reserve my tears for when I’m alone, but Thursday it was tough to keep the
tears at bay.
FRIDAY
Bronchoscopy and EUA of Eyes
Jack’s ENT stopped by before the procedure to chat. He shared with me that he had read
something I had written about our experience with SLCH on “your blog or maybe
it was on Facebook.” Yikes! In thinking about it, I’m pretty sure
what he read was this article that was on SLCH’s website and Facebook
page. I really doubt he reads my
blog.
The news from the broch is that Jack’s airway looks good
despite thirteen years of suctioning.
He did say that the area where Jack’s trach tube had caused some erosion
and where the pericardial patch was placed back in 2005 definitely looked
abnormal and if he hadn’t known the history behind it, he would have been
concerned.
The EUA didn’t show anything of concern. The pressures in Jack’s eyes are good,
so there was no need to do any lasering.
Everyone in Same Day Surgery knew we had appointments to
make that afternoon, so they were good about moving things along and getting
Jack discharged as quickly as possible.
Urologist
The urologist went over all of Jack’s CT scans with me. He agreed that the CT scan in June
showed that there were indeed some stones still remaining in Jack’s kidney after
the procedures done in April/May and that the most recent CT scan taken after the
most recent procedure (where the urologist didn’t find any stones) does in fact
show no stones. He doesn’t have
any explanation as to what happened to the stones if we didn’t see any pass,
except that maybe they broke up into such small pieces somewhere along the line
and that Jack did pass them, but they were so small they weren’t visible. Regardless, he said he would have
proceeded the same way our Phoenix urologist proceeded and that he wouldn’t do
anything more at this point given the most recent CT scan. I wanted a second opinion, I got a
second opinion and I’m comfortable that our Phoenix urologist is doing a good
job at managing Jack’s kidney stones.
Nephrologist
The nephrologist went over Jack’s history with me and she
was in agreement with the medications our Phoenix urologist has Jack on and she
is also in agreement that Jack doesn’t need every two week blood draws or
UAs. She asked that I fax her the
results of the next 24 hour urine and blood work that Jack will have done in a
few weeks. After meeting with the
St. Louis urologist, I am comfortable with the care and plan of treatment being
provided by our Phoenix nephrologist.
I know some people probably wonder why I even feel the need
to question our Phoenix specialists.
Right or wrong, I just have a level of confidence in the doctors at St.
Louis Children’s that I don’t have with the doctors in Phoenix and I will
always prefer to receive care at SLCH over Phoenix even if I can’t always
secure it.
Cardiologist
After finishing up with our afternoon appointments, I called
the cardiologist office and asked if he was available to answer some questions
I had about the implications of what we learned earlier in the week. He graciously took time out of his
schedule to talk with me. I know,
in general, cardiologists are not known to have hearts of their own (and I’ve
met one or two who would fit that profile), but Jack’s cardiologist has a very
kind and gentle demeanor and he was great to deal with this last week. He told me he would like to see Jack
back in June. I didn’t say
anything to him, but it’s really not likely we will make a trip back there in
June just to see the cardiologist.
I need to find a cardiologist in Phoenix to manage Jack. Finding one I trust will be the
challenge.
Friday ended a very long and draining week of doctors’
appointments. To say I am exhausted is an
understatement.
Good Times
The week was not all doctors’ appointments and serious
stuff. This trip to St. Louis was
exceptional in good ways too.
One of Jack's former Phoenix physical therapists moved back home to Illinois six years ago. She happened to be at Children's with her son on Tuesday, so were able to see her while we were there.
One of Jack's former Phoenix physical therapists moved back home to Illinois six years ago. She happened to be at Children's with her son on Tuesday, so were able to see her while we were there.
After having reconnected on Facebook with Jack’s very first
pediatrician, we met up with her one evening after she finished at the office. It was so nice to see her again. I only wish she could have seen the
happy Jack, not the tired, stressed out Jack. Thus, the reason for no picture.
I had dinner one night with three of Jack’s former
nurses. One who took care of Jack
in the Special Care Nursery when he was born, one who took care of Jack when he
was in the PICU and one who took care of Jack at home (and who is now the
nursing supervisor of Same Day Surgery/PACU at SLCH). What a treat to spend time with these special women – all of
whom have been part of Jack’s journey.
I’m so lucky that after all these years, we’ve kept in touch and remain friends.
We ended the week visiting with our friends Jason and Jenny and their kiddos. I first "met" Jenny years ago on the Tracheostomy message board. We reconnected (amazingly) on the Cure CMD message board after her son was diagnosed with a congenital muscular dystrophy. I didn't know Jenny when we lived in St. Louis, but we've become good friends since I moved to Phoenix.
That's the St. Louis recap. We are on the road again tomorrow for the trip back home. Lots of information to digest and lots to do once we get home.
Thanks for checking in and thanks for caring! xoxo
Thanks for checking in and thanks for caring! xoxo
**************************************
(Inscribed on the Reflection Pool located on the Washington University Medical campus)
Hope
(Emily Dickenson)
Hope
(Emily Dickenson)
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
(Reflection Pool)
5 comments:
Oh Ann! I'm in tears just reading this. Love to you, my friend!
Erin
First, have a safe journey home, indeed the minor crash is nothing to fret about.
Ann what is remarkable and inspiring to me is that you continue to write about Jack's journey. The importance of this is not always clear to us on the path,but cannot be overstated. In reading I am sincerely encouraged along my own path.
I was a bit surprised when you said 'quality of life over longevity' because in a sense they go together with our children: when the spark in the eyes dwindles it is necessarily a sign of problems with health. While this is an adjustment to a new stage, when his eyes are closed the heart sinks, everything certainly appears more dire but rebounds always come when you least expect. Hopefully the medication will add something positive.
I am assuming they found pulmonary hypertension and if so the mail I sent could be even more relevant for you.
It was great to hear that you connected to some of the caregivers from the past, as draining as it was, it was certainly something which will linger in your memory and be a source of strength for the future.
Ann, I've been thinking about you all week. I am very sorry to hear about Jack's heart. I wish it weren't so. I am glad that you were able to get him to St. Louis for the peace of mind that comes from knowing you've done all you can to get him the best care. Truly knowing that you are in good hands in Phoenix is invaluable. I'm sure the trip was a very mixed experience of fun, sadness, exhaustion and love. You are doing a fantastic job. I hope you have a safe journey home and that you can take a little time to rejuvenate your spirit. Much love my friend, XOXO Susan
I have been thinking about you guys and I'm glad you posted!! Praying for you! I am very sorry about the new heart issues!
Ann, I have read your post several times in several days. I just don't know what to say. Yet, I have so much I want to say! There's so much in that post!
First - I am terribly sorry about Jack's heart status. I hate that for you and for Jack. And your familly. We've seen a lot of cardiologists, and honestly, I've liked them all. I have found pediatric cardiologists to be very kind and compassionate. So, I will hope you find someone you like and trust in Phoenix.
I LOVE that your doctor went with you to lunch. Seriously that speaks volumes for you. And explains why I like you so much - even though we've never met!
So, Mark backing into a parked car? That is SO something that would happen to us. Poor guy!
Lastly, it makes me so sad to think of Jack's new normal and how tired he is. I know that must weigh so heavily on you. It's one thing when our kiddos are happy, despite their challenges. It's another when they're tired. I just wish I could give you both a big, giant hug. And I wish I could change some of this for the better.
Please know, no matter what, that your family is so loved and admired. And you and Jack - are making such a positive difference in so many lives.
Love ya!
Christy xo
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