Updated: Sep 6
In order to determine Mason's issue and progress to some type of diagnosis, Mason would require a variety of tests, this would be conducted over 2-3 month period. As he is only a year old, all of the scans (excluding x-ray and echo heart) required for testing/analysis have had to be done under general anaesthetic to ensure he remained still.
As of today [26-June-21] Mason has endured eight encounters with the sleepy drug propofol aka the ‘milk of anaesthesia’ to complete the following:
Bone marrow extraction
Two separate biopsy operations,
Wedge sample operation
Installation of a Hickman central line.
It is a lot to take in and during these past few months we have cycled through all our emotions, frequently exhausted with the not knowing ‘whats next’, but.... it is important to focus on the positive side to the above.
We are hugely grateful that this technology exists and is available for Mason to benefit from. As an adult, having the above scans may not be an issue, remaining still is straight forward enough, but for a baby it seems the best way to keep them still and achieve a clear, high quality scan image is to ‘put them to sleep’ which makes the process a whole lot longer on each occasion.
We would visit the ward a day before and spend the night. Mason would be nil by mouth starting the night before, consequently, no breakfast the following morning, We would also follow the rules of NBM with Mason as a personal policy. He is so young, can't talk or understand any of this but he can pick up on things we do and we thought it was unfair to eat & drink when he can't. It is a small price to pay. Surprisingly, as the little chunk that he is, who usually lives for his morning milk and weetabix he lasted better than we expected during these fasting phases. Due to his age the hospital would endeavour to schedule Mason in as one of the earliest appointments of the day and this was usually the case unless an emergency arose.
Prior to Masons Hickman central line being installed, a cannula was inserted into either his hand or foot depending on how good his vein selection was. On every occasion this was distressing for both him and us and occasionally problematic for staff. There were a few times where a vein could not be located as a result of dehydration and NBM, next choice then was to use 'sleepy gas' to knock him out.
The time would came where we were called up, who ever was staying with him (mum or dad) would carry him over to radiology or theatre before handing over to the specialists.
The wait was the best opportunity for us (mum & dad) to catch up, grab a cuppa or breakfast, shower etc.... but the best sound we would always listen out for would be the drowsy grown of 'Maso' returning with the nurses on a bed being wheeled down the ward corridor, as if he knew he was coming back to see us and he was trying to talk and say something. We'd be waiting with a fresh bottle of milk which to him was probably like having a cold pint after a day on the beach!