Annie’s condition deteriorates

This picture shows Annie’s poor circulation – thank goodness GOSH have intervened and brought her surgery forward.

I decided to post my letter to PALS here so you can understand how I’m thinking and feeling. I hope that others going through a similar journey may find it helpful in some way. I hope and pray it comes across ok….

——

My wife and I spoke to you yesterday, and I just wanted to follow-up on that conversation.   For clarity I repeat my two requests at the start and end of this letter.

Request

Firstly, I would like to hear from of senior member of management who could put my mind at rest that scheduling is either already optimal or will be improved.  Secondly, I would like you to have a second look at whether Annie’s surgery can be brought forward please.   I know this has been done before, and the nurse yesterday managed to get on the list a day earlier after seeing our initial reaction.    

Background

As mentioned, my daughter, Annie Faith Martin (DOB – 13/11/18), was due to have open-heart surgery yesterday, but less than an hour beforehand it was postponed.   The reason for the cancellation was that it was necessary to prioritise a heart transplant – which is totally understandable. 

This is the second time that we have had Annie’s operation postponed.  Each time the operation is delayed 2 weeks+.  Speaking to nurses and other senior members of the team, there have been numerous cancellations this month.   I am upset and angry because I suspect that there are things GOSH could do to plan better to reduce the impact of delays for patients and their families.   As just one example, in your scheduling, I don’t understand why you don’t have ‘fire-breaks’ in your scheduling so patients are not delayed as long as two weeks.  When you’ve travelled and made arrangements, planning to stay in intensive care anyway etc., a few days is not an issue, however, two weeks is.

Implications

I would also like to be clear with the implications of such delays, to help you understand our emotions and ensure you have an incentive to do something about it.  I have separated the issues into two categories:

Clinical concerns

My wife and I have some real concerns about the health of Annie.  You can see in the photo attached how blue her skin is – a very recent development.  She is not putting on weight – the surgeon we spoke to said this was an important indicator that, although she looks ok on the outside, there may be an internal deterioration.   Annie is sick everyday as we try to get as many calories into her as we can, and my wife has to make her daughter sick (through pumping her full of high calorie  formula) every day which is awful to have to do.  Now, to be clear, clinical treatment, isn’t my cause for complaint as I totally trust the collective judgement of the amazing medical professionals.   However, we’re now a month further on (today, so 6 weeks+ at least when it happens) from when the operation was originally booked to take place, and this is very concerning for us.   This is emotionally draining to say the least.  I clearly hope we don’t have to wait until her heart fails before surgery is finally undertaken?!

Logistics

My workplace has been tremendously understanding, but I’ve been away a lot over the last few months, and I require them to be flexible yet again.  I don’t know how long this goodwill can last.  We’re so fortunate that Charlotte (mother) doesn’t need to work, but that only heightens the pressure on my work.   Our two boys (aged four and two) are very unsettled by the changing of plans.  We’ve got a combination of grandparents and friends taking time off work to care for our two boys at home that is now wasted.  We’ve got travel costs.  We’ve got hundreds of people praying for us and looking out for us that are constantly asking us for updates.   It’s tremendously draining and testing to do this for a third time.  

To be clear, the care of attention of staff is superb.  I write to you exasperated as I am not convinced your scheduling is as optimal as it could be.  I know unexpected events happen, and plans need to change, but perhaps they seem to be happening often, and the implications for parents and patients is profound.

Request

Firstly, I would like to hear from of senior member of management who could put my mind at rest that scheduling is either already optimal or will be improved.  Secondly, I would like you to have a second look at whether Annie’s surgery can be brought forward please.   I know this has been done before, and the nurse yesterday managed to get on the list a day earlier after seeing our initial reaction.    

I have noticed a number of “You Said, We did” posters on the wall of your wards.  This is certainly a “You said…” and I look forward to your action.

Kindest regards,

——

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