Living With Cystinosis: Oscar’s Patient Story, Part Three

This story was originally published in The Cystinosis Advocate, the newsletter for the Cystinosis Research Network, a Patient Worthy partner organization. 

Continued From Part Two

We were told about what medications Oscar would require on an ongoing basis, which was extremely overwhelming. Being told that you must administer Cystagon every six hours along with electrolytes (phosphate, magnesium, potassium, and sodium bicarbonate) every eight hours whilst working out which ones can go together and which ones can’t was a really harrowing experience. Any mistake will make him vomit, and we also had to manage his nutritional needs by administering feeds via his nasal gastric tube with a machine pump four times a day.

It really hit home just how quickly our life had been turned upside down. You question how you are going to get through it, knowing that you are now going to have to manage your son’s endocrine system by balancing his electrolytes. This is not only essential for basic life functioning but also extremely critical, because an imbalance can have serious consequences. It’s a lot to wrap your head around and we spent a lot of time in the ward learning as much as possible so we would be prepared and ready for when we went home.

We got home from the ward three days later and it really hit home just what this diagnosis meant moving forward. We had to buy an IV pole for the lounge room where Oscar’s feeds are administered, plus vomit bags and pee pads for his cot as he has polyuria. Hydrolyte was bought in bulk for vomiting. We moved a mattress into Oscar’s room so one of us can do the night shift, which involves changing nappies and doing his medications at 1am. Our kitchen now has a medication trolley where we make up all his medications for the day. We have hospital bags ready to go at any time as a simple gastric upset can send him straight into hospital.

A cupboard in the kitchen is now full of all of his enteral fed meals (tube fed). He has four pump feeds a day to support his nutrition and growth and the only way to have him sit still is watching TV. We have watched a lot of TV this year. Weekends are spent going to allied health appointments to make sure we are supporting Oscar as much as possible. We have a whole team of professionals providing much needed support, from orthotic shoes for the rickets to an endocrinologist to support his growth, and a speech therapist, as his speech is quite delayed. There will be more added to the team as he gets older. It’s been a huge year full of grieving, acceptance and growing.

Now looking back, we can say we have gotten through the worst of it for now and are in a place of wanting to give our beautiful boy the most wonderful life possible with the support from both of our families, who have been incredible during this time.

We also wouldn’t have been able to get through the first year without the amazing support from the families who have also gone through a diagnosis of cystinosis, the parents who have walked this road many times before. They have been a wealth of knowledge and it has been so comforting just knowing that we can reach out to a parent late at night after Oscar has vomited up his Cystagon for ideas on how to limit this happening in future. We are so grateful to have the parents group and we lean on it for so much. We are looking forward to seeing the end of the year in a much more positive light and hold out hope for the stem cell therapy becoming available for all of those suffering from cystinosis.

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