After a high risk complicated pregnancy Argyle and his twin sister, Thorunn were born via C section on 24 Oct at 35 weeks weighing at 6.4Ibs and 5.5Ibs respectively. Apart from a few feeding issues at the very start, Argyle appeared happy and healthy and essentially thrived. However, his breathing always showed signs of distress which were queried multiple times at the GP’s and A and E dept at Queens Medical Centre (QMC) Nottingham. Unfortunately, because he was big and strong and was gaining weight, the symptoms were put down to mild bronchiolitis and his referral to the Respiratory Rapid Access clinic at QMC was rejected. We challenged this decision, but the system moved too slowly to stop the events which then transpired.
Unfortunately at only 7 weeks old on 12 Dec 2018, Argyle was picked up after a nappy change and started to turn blue. Kenny (his father) scooped him up and sprinted out of the door through the village giving him breaths along the way to the village health centre. He was blue and limp and was found to have no output. The surgery was excellent, Oxygen and CPR was given, and he was taken into QMC by ambulance. Daddy had saved his life, but this was only the beginning of the journey.
Argyle was admitted to the Intensive Care Unit at QMC and at this point he was separated from his twin sister with whom he hasn’t shared a cot since. He had a variety of tests, resulting in the rare diagnosis of an extra heart vessel around his trachea. As he grew it tightened crushing his trachea. He has under gone heart surgery to remove the extra vessel at Birmingham Children’s Hospital. The surgery was successful, and we were told that the airway was functioning normally and there was no need for a tracheostomy. We returned to Nottingham in the hope that we would be home soon.
Post-surgery, Argyle looked unwell and swabbed positive for Swine flu and type A flu. Time passed to the point where both flus should have cleared, however he was still struggling to breathe, his respiratory rate was high, and he was very pale. We always felt that he was still unwell, but we were reassured that everything was fine. Our concerns came to fruition when he arrested again after another nappy change. Another bronchoscopy was performed, this time with a flexi scope which went deeper into the lungs. It showed both bronchi to be completely collapsed. How he had survived was a mystery to the medical team
Argyle now needed a permanent artificial airway to ensure he would not arrest again. The only sensible option was to have a long-term tracheostomy to give him the stable airway he desperately needed.
We are now weeks post tracheostomy and living the reality of Long Term Ventilation. It is a challenging time and significant thought needs to be given as to how our situation is managed. As parents we are devastated; little Argyle is now for the foreseeable future attached to a ventilator. Simple things like tummy time are difficult and moving around requires taking a ventilator, suction kit oxygen bottles, monitoring equipment. We cannot hear his voice, we cannot hear him cry and tragically he is still separated from his twin sister.
The next challenge is to bring Argyle home. He is medically stable, and our home is suitable to accommodate a child with Argyle’s needs. Usually lack of appropriate housing is the issue with regards to discharge from hospital. However, to keep our house both my husband and I need to work full time to cover the mortgage. Neither of us have conventional jobs and do not have predictable working hours. It appears the system does not support working parents with normal financial outgoings. The care package available is offering some overnight assistance and only minimal daytime help, which would not allow us to work full-time and therefore keep our home. The system essentially fragments our happy family life. We have serious concerns for the health and well-being of our other two children; without support all our attention will have to be devoted to Argyle and it is difficult to see how we will be able to provide the care and attention that our other two children need. It is a very worrying time trying to balance all elements of family life.
The care package could take months and months to resolve. Argyle could even see his first birthday in hospital when there are no medical reasons for him to be there.
We are also facing the additional costs of adapting our lifestyle to accommodate a sick child. We need to purchase a new vehicle as our current car is not large enough to cope with a family of five, and the oxygen bottles and additional equipment required if we want to travel anywhere with Argyle. We will also need to convert one of our rooms to accommodate the needs of a long-term ventilated child.
Please help us bring Argyle home and unite him with his twin sister and older brother. We are raising awareness of his condition and funds to pay for a supplementary care package to allow us to bring him home safely and responsibly with the care he needs whilst also preserving the well-being of our other two children.