Currently dealing with… Part 2

Hey Peoples, me again.

I’m tired, cranky and in need of some kind of magical intervention in my life right now. If it can go wrong, it is doing and with alarming regularity.

I have a question, why after six weeks of my son being in hospital does anyone think it might be, that I still have to explain to the nursing staff on his ward, the reason WHY a pressure sore on my son’s right buttock needs the specialist HEALING CREAM and a DRESSING?? And also, WHY it is dangerous to leave it both uncovered and untended.

So, he has been in hospital 6 weeks now, going into his 7th and every single day has been one problem after another, generally created by either a lack of understanding of his core disability (Spina Bifida) or a lack of understanding of how to dress pressure sores correctly, and how to change a stoma bag.
Now, Okay, I know the stoma bag and pressure sore thing is something that a district nurse would be better placed to deal with, but that’s not on the cards as he is in hospital with hospital nurses looking after him. I am fairly sure that they all went to the same nursing colleges though. Maybe I’m wrong.

I would expect them to have at least a rudimentary understanding of how it all works and WHY it needs to be done on a regular 24 hour basis. I thought that would be nursing 101.

Anyway, that aside, (but only slightly as it still features) he has now gotten over Covid and has the all clear since Tuesday the 13th. So imagine my absolute horror and frustration when I received a phone call from the ward staff nurse on Wednesday the 14th telling me that he has tested positive for MRSA a hospital superbug. I am beside myself, because my understanding of this particular hospital bug is that if the ward is kept properly cleaned at all times, the bug can’t thrive, let alone infect already sick patients.

They tempered their news with this, ‘please don’t be too worried, there is a very effective dual treatment that works to kill this bug and it is no longer considered to be the killer bug that it was originally.’ OH well, that’s alright then!!! Isn’t it??? NO!!! It bloody isn’t!

He is currently sitting on an open wound, the MRSA is around the groin area, it is not a great journey for the MRSA to travel to the open wound on his backside and infect it. We are then dealing with a whole different level of infection. Please also remember, he is currently in hospital because he has a massive septic infection in his hips, liver, right kidney and stomach, apparently caused by his right kidney leaching infection into his system slowly over time. It has flown under the radar of detection via the usual routes of blood tests and urine samples. It only showed up on an MRI scan and everyone was duly shocked. They are still trying to identify the infection so that they can match the antibiotics to it to clear it up properly. we are 6 weeks in.

Now he has another infection, this time picked up in hospital. The thing I don’t understand, is MRSA is apparently a one to one contact bug, it’s passed through human contact. He has not been out of bed in 6 weeks, only nursing staff have touched him and the radiology staff. That tells me one of them has passed this bug onto him. How on earth are we supposed to have any kind of faith in these people to fix him if all they keep doing is give him more infections?

Okay, so back to the open wound, if the nurse did as she was supposed to and dressed that sore on his behind with the specialist healing cream and the correct wound dressing every 24 hours, then I would not be concerned about the MRSA travelling to that area as it would be sealed off. Currently he is sitting on an inco sheet which is rough on his skin and that is actually breaking down the pressure sore further so I am as mad as hell that I am still having to spell out the very crucial need to keep that sore tended and dressed properly.

Now, cast your mind back to that ‘please don’t worry’ statement. The treatment for the MRSA is a dual treatment. He contracted the bug on wednesday 14th September, and up until yesterday, Friday 16th he was only applying a cream to the inside of his nostrils 3 times a day. A full medicated body wash was supposed to be being applied once a day along with the application of the ointment to his nose. When do you suppose they did the first body wash?

Oh , that would be Friday afternoon after I had raised the roof because it had been sat on his cabinet for two days still in the pharmacy bag, unopened and ignored since it had arrived on Wednesday.

I despair. I truly do despair.

He finally has the stomach drain fitted to remove as much of the infection from his stomach as they can, only a week after it was supposed to have been done, and only because on the 13th I came away from a respite break and drove over to the hospital to find out what the hell was going on. He had the drain on the 15th. He should have had it on the 8th Sept.

It’s only a week, not much time to wait is it?

Except that on the 7th of September, the doctor who told me he needed the drain also informed me that it was urgently required because of a complication with the end of his VP Shunt tube in his stomach sitting in the pool of infection. If the infection got inside the tube it would travel up the tube and to his brain. No prizes for guessing the horrendous outcome if that happened.

So an extra week sitting in all that currently unnamed infection, are they sure that’s not a week too long now??

For those of you who don’t know, a VP Shunt is a piece of equipment that is fitted into a ventricle in the brain to drain off excess fluid in the brain when the ventricles either don’t work properly or at all due to hydrocephalus. Hydrocephalus is a condition closely associated with Spina Bifida that causes a buildup of excess fluid in the brain. Most children born with Spina Bifida would normally have hydrocephalus as well, the stats when my son was born was only 1 in every 100 born with SB would not have hydrocephalus.

A tube runs from the shunt in the ventricle down the side of the skull, along the neck and down over the collar bone and into the stomach where the excess fluid drains off into the system safely. The tube is roughly 4 or 5 feet long to allow for growth and is never interfered with unless the shunt develops a problem. My son has had his shunt since he was 9 months old. He’s only ever had one problem with the tube when it kinked because the hydrotherapy pool at physio was too hot for him and it made him ill for 3 weeks. He was 10 years old then. Unsurprisingly, that happened at the same hospital he is currently in. The ineptitude appears to span 20 years and counting.

My apologies for the medical lesson, I just need to dump all this stuff somewhere before I go stark raving mad and end up needed a white jacket with shiney buckles up the back and wrap a round sleeves, or a new heart.

Currently my palpitations are actually visible to the naked eye they are so severe and constant.

The nurse told me not to worry, she would do the medicated wash down every day from now on… she never agreed to dress the pressure sore….

Why do I need to worry?