There are a few items that I wanted to cover that didn't merit a complete page of
their
own but are some of the most important so I have put all of those here.
See the menu on the left under "At Home Care" for entire pages on positioning,
car seats, mobility and how to find services to help your child.
Shunts
There is a whole page on shunts that you can find on the menu to the left. It describes
what they are and how they work, the different types, signs of failure and all
that. You should really go and read it in detail, especially the bits at the bottom of the
page that tell you what to look for as far as failure and infection go. Before you leave the
hospital you should absolutely know the make and model of your child's shunt and its pressure
setting if it is a programmable. You should definitely take your child's temperature at least
once a day if not twice for about 4 weeks after a shunt placement to watch for infection.
If your child is an infant and the soft spots still have not closed you should learn how
they feel when the child is upright - usually soft and indented a bit, and when they are
laying down - usually firm and bulging a bit. Each child will have their own norm and you need
to know what it is so that you will know if it changes due to a shunt failure or overdrainage.
You should also know that in infants the soft spot will respond rather quickly to
hydration levels. If it seems quite sunken, try giving them more to drink to see if it fills back
out. These are the very basics, go and read the shunt page to get the details.
Monitoring
With a normal child a sound monitor that tells you
whether they are awake or asleep is enough. However some
of our little ones may need more if their big head or low
muscle tone puts them in danger of aspirating vomit or
if they may be prone to seizures. In this case
I highly recommend the Summer Infant Handheld Video Monitor. You can buy it at Walmart or
Target or online.
These things have great range - I can work outside and still see him clearly even when the
room is dark. I can clearly see if he is in distress rather than relying on him
"sounding OK".
Another option is the Angelcare Movement and Sound Monitor.
We actually had one of these
leftover from our daughter. It is a simple pad that sits under the crib mattress to detect
very small motions - small enough to detect their breathing. If it senses no motion for a certain
number of seconds it sounds an alarm. The cone shaped thing is a sound monitor that you carry
around with you so that you can hear the alarm even if you are outside. Since we were using it
with the Video handheld unit, we just carried that instead since it also has sound.
If your child is prone to seizures you might consider the Emfit Movement Monitor:
It senses the rythmic movements that are associated with seizures. We have one of these too, but
it hasn't worked well for us. Not because of a problem with the monitor, but Owen tends to
swing his whole head and body back and forth rythmically because he thinks it's fun and he keeps
setting it off when he's awake in the middle of the night and playing.
Keep Your Medical Records With You
The first thing to keep on you at all times is a copy of your
child's last CT scan or MRI. You can request a copy of these
on a CD, which is is a nice compact thing to stuff in your purse.
The reason for this is that it is very rare that one hospital
can share a scan with another. As a result if the hospital
nearest you during an emergency is not the same one you had your
last scan at, hours and hours and even full days can be lost
in an attempt to determine if a shunt failure is occuring. The
only way to know if the shunt is failing is to compare a previous
scan to a current one so if you don't have it on you, they can't
tell anything.
The second thing is to have a single sheet that has a few
important items of your child's medical history on it that you
can hand to emergency personnel. There are two reasons for this,
the first is that it is incredibly difficult to remember things
like the date of their last scan, current weight and their complete
med list when you are under stress. Having it written down
removes all chance of making a mistake. The second reason is that
it gets really old to have to write all this stuff out on all
the forms and to have to repeat it to the doctor, resident, fellow
and everyone else that walks through the door and it's much nicer to
be able to just hand them a piece of paper. Below is a copy
of the one I carry for Owen to show the kinds of information that
might e helpful:
The doctors, nurses and EMT's love this piece of paper because
it really helps them and it makes life easier on you too.
The Go Bag
Inside this bag:
are a change of clothes for Mommy, Daddy, and Owen:
I have thought in the past, "I can just get by with what I'm wearing for a few days
if I really have to" - but that doesn't work if your child throws up all over your
clothes (or his, or Daddy's) on the way to the hospital and it's kinda
icky anyway.
Then we have basic necessities for Owen.
I am eternally amazed at how long it can take for people to find diapers in a hospital
and I find it's best to bring a few so that the hospital staff have a few hours to
make some appear. There are extra batteries for Owen's cochlear implant,
a nose bulb because he can't blow his nose and hates it when he's stuffy, some of
that cool tape that sticks to itself to keep pulse-ox's on, and some lotion because
the low humidity in hospitals really dries his skin out - and it takes a doctor's
order to get lotion in the hospital.
We also bring along some essential
foods:
He doesn't usually eat baby food - but if he has had to be intubated we keep some on
hand because it's easy on the throat. They are just a few flavors of apple
cinnamon stuff that has more calories than regular applesauce. Owen is also
allergic to milk and eggs and we can sometimes have trouble getting his soy milk
(Silk) at the hospital, or even just food that we can be sure doesn't have milk or
eggs in it. We bring enough to get him through a day or two until we can get the
food supply sorted out.
We also bring a bit of nourishment for Mommy and Daddy:
because it's often 1:00am when things settle down and the cafeteria is closed.
There is almost always a microwave on the floor somewhere that you can use to heat
up a couple of meals and the high protein bars are good for snacking on until you can
get real food.
We also bring some of the basics to clean up with:
because it can really help your outlook on life to be able to brush your teeth and if
the above clothing was *compromised* on the way to the hospital by revisiting Owen's
lunch, you will really want a shower if things got messy. Again, it could be the
middle of the night by the time things calm down enough to be able to attend to such
things and the gift shop will be closed - and you just don't want to pay the $5.00
they want for a toothbrush anyway. There are also a few feminine products because you
can't guarantee that emergencies will occur during convenient times of the month.
Finally I have some entertainment for Owen when he wakes up:
and some for Mommy and Daddy for while he sleeps:
I have to re-pack every season to make sure the clothes are appropriate
(and still fit Owen) and to be sure that the Silk hasn't expired.
The idea is that we want to be able to get through the first few days without
needing to leave the hospital if we don't want to and we want to be able to grab
it all at a moment's notice. And with the laundry detergent we have made this
bag last us for quite a while in the past once you can start getting food at the
hospital. There are a few more items in there that I haven't shown -
spoons and forks for eating and I think there is a deck of cards in there too,
but you get the idea.
Clothing
If your child has a big head then you are going to find putting a normal shirt or onsie over it
to be a bit of a challenge for a while after they are born. If you know before your child is born
that they are going to
have a big head, invest in items that button, snap or zip up the front. Walmart generally
has a nice selection of newborn and preemie sized clothes that snap up. Even when they
are older and have grown into their head and are able to wear normal T-shirts and such
it is always a good idea to have a selection of button or snap up shirts on hand. If they need
to have their shunt replaced you don't want to be trying to get a shirt over the bandages.
Bath Time
I found it a bit awkward to bathe Owen at first. I was trying to hold his head
up from slumping down into the water while I was trying to wash him and I found it somewhat difficult.
I had used something called
the Primo Euro Bath Tub
for my daughter years ago and I had bought a new one for
Owen almost as soon as I found out I was pregnant again. It was one of those items I just couldn't do
without because it lets them lay down while they are real little, and then they can sit up in the other
end of it when they are sitting up but still too small to be in the big tub.
It's also a much larger tub than most of the ones you find at Walmart and Target so it
can last for years instead of months and it only costs between $25 and $30. If your
child has a reasonably sized head you may need nothing at all to keep them from sliding, or
you might just want to lay a little blanket down under them.
The problem for us was that
Owen's huge head kept causing his whole body to slide down. So I used the setup below:
I started with some
non skid shelf liner (shown in the first picture) to keep him from sliding down. The
liner tends to float, so I put a hand towel over it to hold it down and to make it comfy.
The tub has molded sides to hold the baby in position while they are laying in the tub. You
can take a rolled up receiving blanket and set it across the molded part to help support his neck.
As you can see in the last picture, it makes for a happy baby. It may seem a bit elaborate, but
we went from a baby that cried through his bath and a Mommy who was really stressed through the
bath, to a baby that liked to sit in his bath for a half an hour, happily splashing away.
Medical Equipment Rental
This is another one of those things that you don't realize
is available until you need it. Owen needed to have a pulse-ox (pulse-oxygen) monitor on him
most of the time when he was very small because his large head would sink down and
collapse his airway. I knew we would need one when we got home and I was shocked when
I Googled them and saw how expensive they were and knew that we couldn't cover that
cost. When I told the nurse about this
she explained the wonders of medical equipment rental and how it is covered by insurance.
There are many, many companies out there that rent medical equipment of all types.
The hospital called one of these companies and had a really nice pulse-ox delivered to
my hospital room before we even left. It had a battery pack so that it could be used in the car on
our ride home. They also sent us home with a feeding pump
(which we never used), oxygen tanks and a suction machine. It felt like we were bringing half the
hospital home with us, but we also felt that we were ready to deal with anything that might come up.
Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.
