Breaking Point

So, the boy's home. But who knows for how long. And the pressure's starting to tell on his parents.

The local hospital let him home yesterday lunchtime. He's still on IV antibiotics but its a once a day push. This should be given by the Community nurses. He seems a bit more tired than usual but otherwise ok. However, his secretions are copious, which is a worry.

The wife is tired. She had a bit of a rant last night about the local hospital. They rather leave us to our own devices during the day and use our night nurses at night. An element of a trade-off for the use of the night nurses we have always felt and usually accepted. This reduces the pressure on the ward staff during the day, as he is high maintenance, but increases it on us (especially her). But it also means they don't know much about how to care for him. They don't always check where the trachy box is or what's in it (a basic piece of trachy 101). They don't always know what the situation is with the cuff on the trachy - deflated or inflated. They don't always know suction length. And don't get much practice at how to suction him. Of course, if a nurse stays with him while the wife grabs lunch that is different. It will be a nurse with more trachy experience and we then go through all the whys and wherefores on his trachy and gastro care.

Trachys are so rare on the ward that most of the nurses have little or no experience or dealing with them. This means that their techniques, especially sterile techniques may need brushing up. The wife was ranting that a nurse tried to suction after having held the part of the catheter to go into the trachy - a big no no, especially on an immunity compromised child.

Had the same rant at lower intensity before bed. Left me trembling from too much adrenaline. Made it difficult to sleep. What I did have was anxious sleep, half listening for a call that he needed to go to hospital. He needed a lot of suctioning during the night - never a good sign.

With depressed fatalism, we feel it is only a matter of time (perhaps only days) before we are back in again. This is one of those times when you fail to see how you can continue to cope and want it all to be over.