I worked most of my life in rural healthcare. We didn't have resources, equipment or medical specialists needed for people with life threatening chronic medical conditions. Families often expect more than medical staff are capable of in rural settings when the outcome is not what they would be in the city. The best you often get is triage until a ambulance or helicopter can take the patient elsewhere.
Country living is amazing and i love the area we live in, we have very deep roots here and wouldnt change that as gives a freedom you just dont get with city living. We are very lucky to have 2 local first responders who we know personally, after my call he was at our home within three minuits giving initial care, i think the ambulance took maybe 5 mins (certainly less than 10 mins to arrive) we are very used to having to drive to Cambridge for specilist appointments, and we have a realy good relationship with that hospital as well as open access to a local hospital if needed. the Hydrocephalus is now just part of our life and on the whole the warning signs for somthing going wrong can be picked up, Albies school are all trained to manage this and are very good at spotting the warning signs. This incident was out of the relms of normal for his condition though unfortunatly.
Its somthing we have considered multiple times but for varying reasons this has never been a realistic possibility, Work, School, Dependants cost and lifestyle all add up to it being not a decision to take lightly, We have had Hydrocephalus in our lives since Albie was diagnosed at 4 months old, the complexitys come and go, and we can go years where nothing may change then out of the blue he will need emergency treatment which could be a week in hospital a month or longer, its incredibally unpredictable and likes to catch you off guard at the most inopportune moments in life (christmas/birthdays/holidays you name it lol) we do have protacalls in place for when we believe things have gone wrong though even down to reseaching the nearest neuro teams to any holiday destination, this incident was far beyond the normal for his Hydocephalus unfortunatly and i owe a massive debt to EAAA as well as the first responders and ambulance crew, they are all amazing ❤
I worked most of my life in rural healthcare. We didn't have resources, equipment or medical specialists needed for people with life threatening chronic medical conditions. Families often expect more than medical staff are capable of in rural settings when the outcome is not what they would be in the city. The best you often get is triage until a ambulance or helicopter can take the patient elsewhere.
Country living is amazing and i love the area we live in, we have very deep roots here and wouldnt change that as gives a freedom you just dont get with city living. We are very lucky to have 2 local first responders who we know personally, after my call he was at our home within three minuits giving initial care, i think the ambulance took maybe 5 mins (certainly less than 10 mins to arrive) we are very used to having to drive to Cambridge for specilist appointments, and we have a realy good relationship with that hospital as well as open access to a local hospital if needed. the Hydrocephalus is now just part of our life and on the whole the warning signs for somthing going wrong can be picked up, Albies school are all trained to manage this and are very good at spotting the warning signs. This incident was out of the relms of normal for his condition though unfortunatly.
Is there any way possible for the family to move closer to a children's emergency services hospital? It may be the difference between life and death.
Its somthing we have considered multiple times but for varying reasons this has never been a realistic possibility, Work, School, Dependants cost and lifestyle all add up to it being not a decision to take lightly, We have had Hydrocephalus in our lives since Albie was diagnosed at 4 months old, the complexitys come and go, and we can go years where nothing may change then out of the blue he will need emergency treatment which could be a week in hospital a month or longer, its incredibally unpredictable and likes to catch you off guard at the most inopportune moments in life (christmas/birthdays/holidays you name it lol) we do have protacalls in place for when we believe things have gone wrong though even down to reseaching the nearest neuro teams to any holiday destination, this incident was far beyond the normal for his Hydocephalus unfortunatly and i owe a massive debt to EAAA as well as the first responders and ambulance crew, they are all amazing ❤