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.
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.
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.
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.