'Every day he wakes up we wonder if it is his last day' - Cork family cocoon with dying son, 8
A family who two months ago were told that that their eight-year-old son had in the region of a week to live are cocooning with him as they cherish their remaining family time amidst the backdrop of the global pandemic.
Jamie Murray from Fermoy, Co Cork, is profoundly disabled. Born blind and deaf he was diagnosed with alobar holoprosencephaly (HPE), a developmental condition categorised by a failure of the brain’s frontal lobe to separate into two distinct hemispheres. He also suffers from scoliosis. He was not expected to live beyond birth.
His mother Helena says that in late February they were given the news by the palliative care team that Jamie's expected survival time was around a week.
Helena and her husband have been giving him 24-hour care with the assistance of their nurse Jane O'Reilly who comes in three nights a week.
Helena says that it is a surreal time for the couple and their two other children, Jack, aged 15, and 11-year-old Lucas. The family are at home 24/7 because of the Covid-19 restrictions.
"The only good thing about the lockdown is the amount of time we are spending together as a family. When Jamie is good we can bring him for a walk following the recommendations of our paediatric consultant.
"But we have to bring monitors with us. Oxygen and suction too. Other days he needs pain relief and we can't go anywhere.
"The boys are very good. They don't even ask to go out. It is very hard on them.
Eight weeks ago we were told he was dying and we needed to get ready for that. Every day he wakes up we wonder if it is his last day. I cry nearly every day.
"But then you still have to get up to do your jobs and be nice to people.
"Before the lockdown we had the Marymount Hospice team out and we going to start subcuts for morphine. He is on morphine orally and that seems to be working. But if his pain gets worse because his scoliosis is so bad they will come out in an emergency to do the subcuts."
Jamie and his brothers have been enjoying time spent together with the new Disney Channel being very popular. Star Wars : The Mandalorian is a firm favourite and the boys flew through the first season of the space western show.
Helena says the expected life span of her youngest son is a case of "how long is a piece of string?”
She urges people to mind their mental health on lockdown and to help each other as much as possible. She is appreciative for the assistance of "fantastic" neighbours who are willing to do any errand she needs.
Private nursing for Jamie costs €200 a night. As it stands they are spending €600 a week on private nursing. They also receive assistance from the HSE.
The aim of the private nursing is to give Helena and Mark some sleep so they can spend quality time with Jamie without carrying out physio, intubating or toileting.
The family are fundraising for additional private nursing. However, one of the obstacles to having extra care is a shortage of PPE equipment. Their nurse Jane is in need of some protective masks as is anyone else who would come in to their employment.
Such are Jamie's needs that neither Helena nor Mark are able to work. The family still have to cover all their household bills at this time of extreme distress and despair.
Jamie has experienced pneumonia and collapsed lungs in recent years.
Helena says that he is a "little warrior" who battles on in a room that resembles an ICU ward. When Jamie's time comes they are going to let him go peacefully. He will not be resuscitated.
Helena says she and Mark are scared of contracting Covid-19.
"Who is going to mind him then? The lockdown is hard because I am an outdoor person. I would normally be out doing jobs and keeping my mind busy.
"My boys are so good. Lucas watches the Simpsons with Jamie. I am lucky in that all the boys have always got on.
I am looking at bringing more nursing in to the house but there is a shortage of PPE gear. If I had that we could bring more people in. Even Jane has no PPE gear. Just gloves.
We don't know how long Jamie has. We thought it was a couple of days. We don't know what will happen.
"When your time is up it is up. Nobody can tell you when someone is going to die. But it is nice to have this family time together. We are grateful for that."
Donations can be made to the Jamie Murray nursing appeal fund.
