Perplexity

Leroy relaxing - when we change his nasal gastric tube
we give Leroy as much tube free time as we can

Since Leroy's first re-admission to hospital in late August with symptoms of fast breathing, high temperature, very high saliva production and other obvious signs of stress, these symptoms have been more frequent.  After Leroy was discharged from that stay he began his recovery, but a few weeks later developed the same symptoms again.  It was in the early stages, so to be cautious we readmitted him to hospital. It was not nearly as severe as the first time and in fact the doctors were not really too sure if it was viral, bacterial or otherwise.  But he was clearly not well.

These symptoms have become a regular visitor since then and we are really looking hard at what the patterns are to try and piece together what the sequence of events is and if there's a noticeable trigger for it all.  So far it seems that first of all Leroy's breathing speeds, this sends his temperature up and somehow this stimulates his saliva production.  It is also manifested in his posture, which goes into a pronounced arch of the back with the head thrown right back.  From the noises he makes, he is clearly unhappy and for us it means nights of very limited sleep and days of constant close vigilance, suctioning, stress and perplexity.  The last few days have been like this.

My own current theory is that these things come after extended car trips. Although Leroy seems very comfortable and relaxed during most car trips I think there's a correlation between too much travel and Leroy's discomfort.  We've done a lot of travel in the last few days and Leroy has needed a lot of care, even compared to usual.  I'm going to look over our daily logs to see if I can back up my theory.  If it seems to match up then we can better manage our car trips and make life a lot easier, particularly for Leroy.

It is hard not to go into some pretty dark places when Leroy's health takes a dive, especially when Dylan is also feeling irritable and the pressure is really put on our parenting reserves. But the support and generosity from friends, family and even complete strangers keeps on coming and it makes all the difference to us. We are really very fortunate. It's a bit like our house build, the list of people who have helped is long, as well as inspiring and moving for us to look at.  Along with our profound love for Leroy, it's one of the things that keeps us going.