Now try say it to the rhythm of supercalafragilisticexpialidocious 😮💨
This is the rear disease Hiriwa has.
Overview to date in as basic as I can.
Hiriwa was operating very normally, daily he was working full time, jamming and practices from Tuesday-Friday every other week before he started to feel crook with vomiting, sweats and not being able to scratch his nose on July 7th; the day he went into hospital.
That day the ER team attempted a lumber puncture twice to verify the meningitis that they thought he had- the meningococcal version was what they began to treat and my heart started racing as I sat there googling this disease and the possible outcomes.
Friday Mōrena doctor arrives we hear: Crisis averted and now we need to focus on Hiriwas newly identified diagnosis: diabetes type 2.
He gets moved to recovery ward and treated as a diabetic patient.
By Tuesday Hiriwas body was not reacting well to the antibiotics and I was seeing a decline on his health to way worse off from when we initially came in.
With lots of pushing and unanswered questions we decide to place trust in the medical lead on Hiriwas health case.
Thursday he is beginning to look critical and still my questions shunned and Friday I’m pushing for them to move him off the antibiotics to seek further advice on what we can do to explore what’s happening to his body, cause the treatment they’re currently giving him is not working.
Friday night he’s admitted to ICU, Sunday 4:30pm he goes to sleep, Monday he’s intubated and sedated into an induced coma.
Monday arvo they’re treating him for stills.
Completed a biopsy of his bone marrow and checking his heart for endocarditis.
Wednesday results are very much HLH and we’re hopping in the helicopter to head to Auckland City Hospital because it’s the only place in NZ with the haemotology team he needs around him. (Grateful for the rescue helicopter)
In DCCU from Wednesday to the following Friday.
Now its 29th July.
We take a breath and look up for the first time in a while.
2 weeks and 2 days of physio and really positive signs that we are getting ontop of this and Hiriwas body randomly again goes begins to relapse where his haemoglobin drops below 20 and his temp spikes and all sorts of other symptoms.
They take him for a gastroscopy and his bloods drop severely that they have to put a line straight onto his foot to get blood intk him quickly, they intubate him and sedate him to get it all under control.
DCCU (department of critical care unit) in room 17 is his space for 7 days while they run another dialysis, keep him in a coma and manage his body and his levels to keep him going, keep him living for him and for us!
24th August we’re back in Motutapu ward, his voice is not quite back after being intubated for a second time. His muscle deteriorated faster this time than last and we move to focusing on his breathing.
He’s had a few transfusions each day. (Grateful for donors)
28th August
Today he is stable and breathing so well and talking!! He’s holding food down and they’re tracking well with his treatment for HLH.
We’re sure that the etopiside and Dex are doing what they’re supposed to for his cells but they are affecting his guts and skin and muscle.
The plan is still to get a donor my preference is faster than they currently are so we can get it into Hiriwas body.
As we sit up here together daily reflecting and laughing and joking and listening to each other and sometimes just listening to silence we are so grateful for our love and each other.
We are also planning lots of things for when we are out of this temporary stage of life and look forward to sharing more of our lives with each other and those we love.
Always grateful and always pushing!!
Arohanui xox
Pic is view from his room at night
In Motutapu.
https://www.hematologyandoncology.net/archives/november-2012/secondary-hemophagocytic-lymphohistiocytosis-in-adults-an-update-on-diagnosis-and-therapy/
