mandag, februar 27, 2006

News on Samuel

This was taken recently, after the ventilator tube was reinserted.
Here he is resting on daddy´s chest, he loves being taken out of
the incubator for some contact. It makes him completely calm, and
often both he and daddy sleep peacefully.... : )

3/3-05 Mail fra Mie

Hi everyone

Today Sam is 7 weeks old, weighs 1800 g, and we have finally found
out that he doesn´t have Cystic Fibrosis!!!

Samuel is growing and seem to be fine in every way, except his
airways are causing a lot of mayhem still...he has too much
secretion in his lungs, and the last time they had to put the
ventilator tube back in (they successfully removed the ventilator
after our last e-mail, but after 5 days he kept stopping breathing
and they had to put him on a ventilator for the 4th time ), the
doctor found that there seemed to be something that physically
obstructed the airways.

So now he has to stay on the ventilator, as
they are afraid that if they take out the tube his airways will
collapse all together, until they are able to get a specialist from
another hospital pluss a lot of other "very important people" into
an operating theatre to put a tiny camera down his throat....When
they do this they have to take out the tube, and so the airways
might collapse. So they have to be ready to give him an emergency
tracheostomy (a hole through the base of his neck to breathe
through, like the pope has!) if needed.

The thing is that the doctors are debating whether to do this
procedure before they even try to investigate the airways, which
might mean they don´t find anything - if the "fault" needs air
going back and forwards over the tight area to show up. (The
tracheostomy will prevent air from going past the area). In this
case they won´t find out what´s wrong, and then we´re back where
we started; only then with a hole in his throat on top of it
all...and they might not dare remove the tube they´ll insert
through it, in case everything collapses...blah blah blah. (I´m
sorry it might sound a little confusing, we´ve had several sessions
with the doctors to understand all this, difficult to convey it all
in a short e-mail)

Anyway, the top specialists in the country don´t know what to
expect, so we don´t know what to expect either.....except we´re
quite worried we´ll end up getting Sam home with a tube sticking
out of his throat for about a year until he´s old enough to have
the necessary surgery, or until he grows out of whatever it is.

This will require an awful lot of work on our part when he finally
gets to go home, as we´ll need to suction the tube (secretions),
change the tube, keep him away from sources of infection (such as
sick kids - not very easy with a one year old living in the same
house...who goes to nursery), make sure the tube doesn´t block up
or fall out, and the added problem of him not being able to
communicate as he won´t have a voice while he has this.....we might
have to get nurses to stay with us in the nights. He might not be
able to breast feed, all though he might take a bottle.
Also, all though we might get over the shocking sight of it and get used to
him with a tube sticking out, other people might not...which will
be very painful for us.

The doctors seem to think that they will find something, and almost
everything they can think of as possible things to find, will
almost certainly require a tracheostomy...but we´re still hoping
that they´ll find something that they can correct straight away,
which is why we´re hoping they´ll decide to wait with the
tracheostomy until they´ve looked at the problem area.

The investigation will take place Monday 7th at 8:15.

All things considered though, if a misshaped trachea is the problem
here, it can most probably be corrected with time, and it won´t be
life threatening. It would also be a relief to finally find out what´s wrong.

They have also found a new bacteria in his lungs which may cause an
increase in lung secretion, so he´s getting antibiotics for this
now. Hopefully this will reduce the secretion, but might not.

Thank you again for your continual support, your prayers mean a lot
to us. We´re very sorry that we sometimes forget or have no energy
to reply to the e-mails and other messages we get from you, we are
quite exhausted and it feels like our lives are completely turned
upside down. But we very much appreciate your mails and messages,
it feels very special to know that you care. We fully appreciate
the fact that it´s difficult to know what to say sometimes, which
makes it even more special to us.

Again, sorry to the Norwegians/Swedes....takes forever to translate!


Mie, Chris, Elissa and Samuel

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