We're home

August 12, 2006

First off, thank you so much for all your thoughtful and supportive emails/phone
calls so many of you sent. It really means so much to us to know we have such a
supportive community of friends and family around us. It's like a big,
cross-country group hug and it truly helped to give us strength these last few
days.

So, we got home yesterday evening around 6:00. Our day yesterday was a mix of
fairly calm waiting around at the hospital and some pretty awful experiences.
The difficult times were centered around poor Cassidy getting all the IV tape
and electrode stickers off her little body. EVen though the nurses and I used
adhesive remover, it was still very scary and painful for Cassidy. At one point
when the nurse was SLOWLY trying to get the IV tape off of CQ's hand Cassidy was
crying/screaming so hard she got a nose bleed. At that point I just called a
time-out and asked the nurse to leave so I could calm Cassidy down. It was such
a horrible feeling to watch her go through that and I know that's NOTHING
compared to what she'll be going through post-Fontan. Patrick and I keep
referring to these last few days as a dress rehearsal for the surgery.

Anyway, the doctors felt like she was well enough to go home but she needs to
be seen by her cardiologist next week. Unfortunately, her cardiologist is out
of town until the 22nd so she'll see someone else in the same office next
MOnday. Amazingly, the results from the halter/heart monitor won't be available
until later next week and we really won't know the plan until we see her real
cardiologist on August 24th. I'm sure, though if it's an emergency situation
(to get the pacemaker put in) we'll find out sooner. Bottom line is that it
sounds like she will have a pacemaker put in. We just don't know when.

So, I think that's all the information I have now. She was so happy to get
home, of course. She really is a home-body. She had a big meltdown when we
walked in the doors but she's always had trouble with transitions. She
recovered from that fairly quickly and she was off playing with her toys. The
house feels full and energetic again with her here. Thanks so much again for
all your support and I'll keep you posted.

love,

Gwynne

Update on Cath

August 11, 2006

Good morning everyone,

I just wanted to fire off a quick email to let you all know what happened with
Cassie's MRI and catheterization yesterday. She did a great job handling all
the pre-op preparations. She was a little nervous but overall did well (thank
goodness for child-life specialists and verced!!). She was in having her
procedures for about 5 hours (they placed a breathing tube in her b/c she was
under for so long). Around 12:30 Dr. Feinstein found us to let us know how
things went.

Good news: things went smoothly and her body thus far has not formed any major
collateral vessels that they felt needed to be coiled (blocked). He also said
she is a "pretty good" candidate for the Fontan surgery. I'll get more
clarification on this last statement today I hope, but his hesitancy to say she
is a GREAT candidate for the Fontan seemed to come from her weight. She's
hovered around 26 pounds for the last year and they would really like to see her
closer to 30 pounds. Regardless, she has to have the Fontan of course but it's
just a matter of when.

Bad news: They kept her overnight in the hospital b/c she showed some irregular
heart rhythms (two specific abnormalities) during the cath. They put her on a
24 hour heart monitor to see if the irregularities were a result of the cath or
they are occuring in her on her own. So, they just want to watch her and make
sure she's OK. As some of you know, she has always had a very slow heart rate
(sometimes dipping down into the 40's). The Drs. feel strongly that she will
need a pacemaker in order for her to have a successful Fontan b/c of the way her
physiology will work post-surgery. She'll have the pacemaker for the rest of
her life. Again, it's a matter of timing. I think they're trying to decide
when to put the pacemaker in: either before the Fontan or during the Fontan.
We, of course, hope they can put it in during the Fontan to avoid an additional
surgery but we'll see.

Patrick stayed with Cassie at the hospital last night while I came home with
Finn. Cassidy is really being such a trooper through this whole thing although
she had a big meltdown yesterday when she dissolved into tears screaming "I want
to go home! I want to go home!!". She had a good cry and then seemed to be
much better (a lot like Mom! :) So, we're hoping to get her home by tonight
(they didn't put the halter monitor on her until 5:30 last evening!) and then
wait to see what her surgeons and cardiologists feel is the best course to take.
I'll write again once I have more information. Also, if any of you don't want
these updates, please email me and I'll take you off the list. Again, I should
have a website soon........I just need to have the time to sit down and do it!!
:)

I hope this made sense......between late night feedings with Finn and yesterday
at the hospital I'm pretty foggy!! I hope you all are doing well and I'll be in
touch soon.

love,

Gwynne

Reschedule of cath

August 6, 2006

Hello to all,

I hope you are all doing well. Just wanted to let you know that Cassidy's cath
has been rescheduled now for Thursday, August 10th. She will also be having an
MRI done prior to the cath so it will, most likely, be a very long day at the
hospital. Thank you all for your kind email/phone calls and support. I'm still
working on getting the website up and running and will let you know when that
happens. Thanks again for your positive thoughts!

love,

Gwynne

Here we go again

July 23, 2006
Hello to all,

I hope you are all having a wonderful summer and are able to stay (somewhat)
cool. You have all, at one point in time, expressed an interest in staying
informed about Cassidy's health and upcoming surgery. Well, it looks like we
may be gearing up for her 3rd surgery here pretty soon. So I thought now would
be a good time to contact you. She is scheduled for her cardiac catheterization
on August 8th at 10:30 a.m. and the date of her surgery will be scheduled after
the doctors at Lucile Packard Children's Hospital have a better idea of how her
heart is doing. While we're not at all looking forward to another
hospitalization, we do actually want to get it over with before cold and flu
season and before she starts her preschool in the fall. So, we're actually
hoping the surgery will be sometime in August or early September.

I will be in contact with you all after the catheterization to let you know how
things went. Actually, I'll be setting up a website where people can check in
at their leisure to see how she's doing in the hospital. I'll let you know that
address once it's set up. In the meantime, please keep Cassidy in your thoughts
on August 8th. This cath/surgery seems particularly difficult b/c she's so
aware of what's going on and I think she's going to really have a hard time
being in the hospital for so long. She's a very emotional and passionate little
person. I just want to remain strong for her and not let her sense how scared I
am......that will be my challenge, I guess. At any rate, please stay healthy
and know I am thinking of you all.

take care,

Gwynne