Monday was a farce!!!
After having a calm few days once Martha had her shock from the Cardioversion (20j if you wanted to know) with her Blood Gasses and Urine output being good - Monday was a shambles.
It all started when darling Martha Grace decided late Sunday night that she was fed up of her central line sticking out of her neck all the time - so she ripped it out.
The problem with babies like Martha is that they need a central line because of all the infusions they need. But in children like Martha who have had surgery previously - their arteries clot once a line is removed,making it nigh on impossible to insert a replacement. To tide them over until a Consultant came in they put a peripheral line in each hand and foot so she could still have all her IV drugs and fluids.
We arrived on the ward on Monday morning during ward rounds. Martha had been fasting since 6am in anticipation of her being extubated. But before she could be taken off the ventilator she needed a long line inserted and she needed the EP team to come and test her pacemaker.
The hours rolled on; we waited patiently; Martha was still fasting but nothing was happening.
Eventually they decided they had time to get started - it was 1 o clock in the afternoon and Martha had now been fasting for 7hours.
We waited in the parents room for almost 3 hours, only to be told they hadn't been successful and rather than damage more veins they would leave her alone until the next day.
Next the EP team arrived and began their tests. I was as sick as a dog as they talked amongst themselves. Thankfully it was working fine and it was being optimised.
It was now 4:30pm and she had been fasting for 10.5hrs - Martha's Blood gasses were everywhere. She hadn't been having her fursomemide, her lactate was high, mixed Venus was low and her HB was low. She needed Gelofusine, Millrinone, Morphine, Blood, Antibiotics and we didn't have enough access ports to get them all in. The registrar was about ready to insert a line in her scalp.
I hit the roof!
I asked to speak to the nurse in charge and was summoned to a private room, you know - just incase another family should hear how unhappy I was.
I get the feeling sometimes that unless Martha is an emergency - she is overlooked. I have to make a huge fuss before anyone takes me seriously. She is my baby - I will argue my case with any one of the Consultants if I believe the way they are running the show is detrimental to my daughter's health.
I told the NIC that I was unhappy with the way things had gone on today and I wanted an explanation as to why it had been allowed to happen.
Why, if we knew since Sunday that the Pacemaker needed checking - why was it nearly 2pm before they started calling them for an appointment? Why, if we knew since the middle of the night that we needed a new line inserted - did they wait until 1pm before any attempt was made in doing so.
Their response - It's a busy unit, they have to prioritise patients and today Martha wasn't sick enough.
Well maybe she wasn't sick enough in the morning but they did a good job of making her sick during the course of the day.
I questioned their staffing, why were they so stretched considering they are a Cardiac Critical Care Unit. They threw back at me that according to their guidelines they are adequately staffed. Maybe so, I retorted - but they were obviously understaffed and were incapable of delivering the standard of care that each child on that ward is entitled to. Being busy is not an acceptable excuse to any of the parents here. Their understaffing is not our fault or our problem. We're not customers in a restaurant complaining that our meals are taking too long...we are parents being made to watch our children deteriorate while they loiter in the nurses station looking at pictures of their dogs on eachothers phones.
The NIC was quite literally saved by the bell. The emergency bell rang and they all sprinted out of the room and down the corridor, the consultant turned around mid-run and yelled "Gemma - is not Marta, is NOT Marta"
We made our way back to Martha's bed space, the NIC came back and asked if we wanted to continue with our meeting? "Only if you've had time to make up a better excuse than being a busy unit" I spat back at him. The consultant returned, I asked her what do we do if they can't get a line in - where does that leave us with all the infusions that Martha still needs.
Apparently there is a Cath Lab at the Hospital for a team called Interventional Radiology. They specialize in inserting lines in difficult patients. He had already left for the day but they were going to call him to see if he could come back to see Martha late that night.
But why wasn't this done in the daytime while the poor guy was still on site. They let him go home and asked him to come all the way back in just for Martha.
I'm very grateful to say that he agreed to come in and a line was successfully inserted in to her Femaral Artery. But they should have called him up during the day and asked him to call up to Martha before he went home for the day.
I can't help but wonder...if I hadn't have kicked up a fuss - would they have bothered asking the guy from IR to come in at all? Or would they have left her until the next day?