We also wanted to let her know she gets to see her cousins and swim in the hotel pool tonight and tomorrow. We explained that Monday we would start having sleepovers at the hospital and it will be a while before we are home again together. She did not cry or anything, but did mention the word hospital a couple of times before going to bed. She did not like hearing the word hospital. And that was about it. She walked away from Jeff and I at the couch and went to go play downstairs. I think it was harder for Jeff and I to verbalize everything at this point. Saying goodbye to "Good Boy" this afternoon will probably be pretty hard.
The good news is that we are getting a better plan together at the hospital as not to poke Bernie every single day leading up to her procedures. She will be admitted and get a PICC line right away that will allow for her heparin drip and blood draws to happen without poking her. This will allow her have her arms free before surgery as a PICC line is placed below her left clavicle. Anti-anxiety medication for Bernie will also probably help. This is good news and we hope the placement of this line is smooth.
A letter will go home with the kids in Bernie's class today explaining in more detail what will happen to Bernie at the hospital.
The teacher in me feels it is important to acknowledge appropriate levels of reality and use experiences as teaching tools.
In case you would like to explain this to your kiddos in a way they can understand, feel free to read it to them, too. We know Bernie has lots of kid friends who aren't all in her class!
Friday, May 8, 2015
Dear K-1 Classmates and Families,
I want you all to know how much Bernie has enjoyed being part
of your world at school this year. She
is a girl of fewer words, so on her behalf, I want to thank you for your
friendship and for all the giggles, smiles, kind words and deeds, and maybe
even some help here and there. She looks
at each and every one of your pictures at home A LOT and is so proud of each of
you as she tells me your names and smiles. She loves coming to school to
see you all!
Maybe as you have seen Bernie at school, you noticed she has
a scar on her chest that may show above her shirt some days. When Bernie was a baby, she was born with a
special heart. It needed to be fixed by
a very skilled doctor 3 times before she turned 1 year old. About one-half of
all babies who are born with Down syndrome, what Bernie and Hattie Jo were both
born with, have to have their hearts fixed as babies so they can live and grow
up with their families. Hattie Jo was
born with a healthy heart. Bernie was not, but we were very lucky to have her
surgeries go well and to have a great place to take her to have her heart fixed
so she can be with us today!
Next week on Monday, Bernie is going to the hospital again
for a while. One Wednesday, the doctors
are going to take some very special pictures of Bernie’s heart by putting a very
tiny camera up through one of her veins in her thigh. She is going to have her
4th heart surgery on Thursday, May 14.
The doctors will have to open her scar up again and fix a problem going
on in her heart. We have to go early on Monday because she takes medicine every
day to keep her special heart working right and it will take a couple days for
the medicine to come out of her body so she can have the surgery and the
special pictures taken. She will have to
get a lot of pokes and is probably going to be very sad. We are really glad the
doctors also have great medicine that will keep Bernie from feeling any pain
during her surgery. She will get some
medicine to help her sleep and have a machine that will help her breathe called
a ventilator. She will not know what
happened to her when she wakes up, but she will probably not feel very
good. It may take a while for her to
breathe without a machine and walk around again.
We don’t know how long we will be gone in Ann Arbor. Bernie does not like going to the hospital
and gets scared when we are there. If everything goes really well, we could be
home by the end of the month of May, but we could be there all summer. We just
don’t know. We will be there as long as it takes for her to get better. Bernie
will probably not be back at school until next fall when we come back to school
in September.
In case you want to send Bernie a letter, draw her a picture,
or send her something (she LOVES photos!) to cheer her up, I want you to have
our hospital address. Here it is:
Bernice Carson Smith (patient)
University of Michigan's Mott Children's Hospital
Michigan Congenital Heart Center
1540 E Hospital Drive
Ann
Arbor, MI 48109
If you want to hear about how
Bernie is doing after her surgery, we have a couple of places you can check on
the Internet: Our care page and blog. You
can leave messages there, too. Here are those addresses if you and your mom or
dad can use the computer together:
Thank you all for being good
friends and we will really be looking forward to seeing you all when we get
home.
Your friend,
Mrs. Smith/Missy Smith (Bernie’s
Mom)
P.S. Bernie wanted you to have this
special collection of pictures of her fun memories at school this year with all
of you. We will be keeping our copy of
it at the hospital and think of you often! If you have any questions, make a
list with Ms. Melissa and I will do my best to answer them for you to help you
better understand what’s going on and how you can keep being a good friend to
Bernie.
No comments:
Post a Comment