Admission # 25

So we have just come home from Admission # 25. An experience I never wish to happen again

Below is an email I have sent to the hospital administration

I have had a few days to reflect on an incident involving the medical care of my daughter.

She has a long and complex medical history at the hospital coming to the Neonatal Unit when she was 36 hours old. She has a precarious condition and was diagnosed with Pancreatic Agenesis (She was born without a Pancreas)

Last Thursday (19/08/2010) I bought her to the emergency department with a suspected Bowel Obstruction. Her care in emergency was not the concern, however late in the day it was decided that in order to wash her bowel out she would require an IV. 6 attempts were made at accessing her with no success. Her Gastro Consultant then made the decision that she would need to go to theatre for a washout and for a Central Line to be put in.

As she has Pancreatic Agenesis she is Obviously flagged as a Type 1 Diabetic and this would be the 5th time she would be going to theatre. We were admitted to the 5th Floor Medical unit. Shortly after arriving, the theatre nurse came to collect her.

Her BSL was checked prior to leaving the ward and her BSL meter handed to staff. I walked down to pre-op hold where I again checked her BSL and it was 9.6. Her Insulin Pump had been reduced to 50% of its normal rate as she was ion a fasting state and has a history of her BSL’s dropping under a GA.

She was returned to the ward 2 hours later. The recovery nurse said that she had woken up and had been kicking her legs around and all obs stable. She then left the ward

I touched Sarah’s hand for no reaction. I asked the nurse what her BSL was. There was nothing recordered on her theatre Observation chart.

I immediately took her BSL to find it was 1.4. Her nurse was checking her conscience state and she was unresponsive to Touch, Voice and painful stimulus.

There were no fluids running so the nursing staff administered 35mls of Dextrose into her central line and Sarah started coming out of the hypo

It was confirmed that no Monitoring of her Blood Glucose Levels had occurred in the time that Sarah was in the care of the Theatre Team.

As a parent of a child with a very complex and precarious medical condition, we place 100% faith in the medical staff. I can be in control of a lot, but in theatre I place my full trust in the medical staff

To witness what I witnessed was horrific, there is no other way to explain it. To watch your child completely lifeless with the only good thing being is she is still breathing is something that should never have occurred.

Sarah has had this condition since birth. Low bloods sugars are apart of daily life for us. In the 18 months since she first came home she has never fallen into an unresponsive state.

I guess I cannot understand why her blood sugar was not checked at any point while she was in there care. She is on an insulin pump which makes it fairly obvious that she is a Diabetic and I had a conversation with at least 3 theatre staff about the importance of monitoring her.

Being that Sarah has no Peripheral IV access left, we are left with the prospect of having to go to theatre for a central line should she become ill again. We have been very lucky this year and have been able to isolate her and she has avoided the nasty winter bugs, but it appears that she has picked up a bug on the ward this admission, so its likely that we may be facing the prospect within the week of having to bring her back in, if the infection gets into her chest as it has in the past, the only thing that has healed her has been IV Anti’s which puts us in the position of again placing her in the care of theatre staff and praying that they don’t repeat this mistake.

The consequences for Sarah could be devastating and its myself and my husband that are left to repair the damage. I do not like to or want to come across as a difficult parent, but Sarah cannot yet advocate for herself so it’s my job to do it, but I feel very strongly about this incident

Sarah sees multiple teams at the RCH (Neonatology, General Medicine, Endocrine,Gastro,Cardiac) and I have been so frightened by this that I am literally petrified of her needing admission to RCH again. I believe an incident report has been submitted and I am writing to inform you of my feelings as I would hate for this to be swept under the carpet and for it to occur again to either Sarah or another patient with devastating consequences.