Raphael's bed setup

Here is a brief description of how we have setup Raphael's bed in our bedroom while he is on his CPAP machine. At this stage we don't know how long we will need to keep him with us in our bedroom but I suspect that it will be in the order of months at least.

The first thing we attach is the oxygen monitor probe. The probe is taped to his foot and feeds back information to the main unit (in the picture). When Raphael is not wriggling it shows the rhythmic pumping of blood on a graph and displays his oxygen saturation level and heart rate. The majority of O2 alarms are due to Raphael wriggling rather than actually having a low blood oxygen level. In fact there hasn't been a low O2 reading since we have had him at home on CPAP. We have set the low blood oxygen alarm level to be 90%.

This picture shows the oxygen cylinder that we use when we are suctioning and fitting the CPAP machine to Raphael. Raphael can become quite distressed when we are suctionin him and fitting the mask, so much so that sometimes he can turn a bit blue from fighting. The oxygen helps him maintain his colour until he has calmed down. At this point we can turn it off. At least in theory this is how it works. I forgot to turn it off last night and so it was drained empty by the morning (oops). We have ordered another one and will have to pick it up some time today.

Above the cylinder bag is a Laerdal mask. This mask is for use in an emergency if Raphael stops breathing. We have received some training in how to use it and we are hoping to get some more practice on Tuesday when a home care nurse will hopefully bring an infant dummy for us to attempt to resuscitate.

We use the suction machine the suck out Raphael's secretions immediately prior to attaching the CPAP mask. The theory behind this is that we don't want the CPAP machine to blow his secretions into his lungs when it starts up. Disappointingly it isn't as powerful as the suction in the hospital, but realistically it is powerful enough to do the job that we need. It probably isn't necessary to have enough suction to suck the contents of his stomach out his nose.

The CPAP machine is set to 8.0 (centimetres of water) pressure. This machine is effectively an air pump that keeps Raphael's lungs and airways open, preventing them from collapsing while he sleeps (obstructive sleep apnoea). This is a noisy machine even when the alarms aren't going off

This picture shows the whole right hand side of his bed. The things to note here are:

• Kangaroo pump on the pole. This is the pump that is used to pump Raphael's feeds into him at night. You can even make out the rate on the photo (35ml/hour)
• The bed is raised at this end by an old bassinet placed upside down underneath the legs of the cot. This is to hopefully reduce the reflux of the overnight pump feed.
• The O2 monitor isn't actually there any more, we moved it closer to our bed so that we can silence the alarms quicker when they go off.
  
• Suction machine.
• Oxygen cylinder.
• Box of tissues to help manage the copious secretions
• rubbish bin on the chest of drawers for the packaging rubbish that is left over from the disposable medical pieces.
• Hearing aid bags (yellow and navy/black) on the end of the chest of drawers.
• Small bucket of disposable equipment on the chest of drawers containing syringes, litmus paper, tape, suction heads, foot probes. Realistically we use some of the disposable equipment many times before it becomes unusable.
• Towel under the pole is to catch any mistakes or drips made while setting up the feeding pump each night.

The left side of Raphael's bed looks like the following:

• CPAP machine, and of course hose, connected to his face.
• O2 monitor. This is actually where we have it stationed.
• Box under the chair is actually full of the feeding bags.
• Towel behind the bed is jammed between the cot and the wall to prevent damage to the wall.
• Under the cot is a big bag full of more disposable equipment.
  

And of course the baby: