Hello lovely people of WordPress land, how the bloody hell are you all?
So, as the title of this blog suggests, I am currently dealing with some stuff that is bigger and scarier than anything I have ever dealt with before in my life, and that is not an exaggeration.
My son, as many of you will know, is severely disabled. He is usually a strong, kinda healthy individual that takes all things disability in his ‘stride’. He’s wheelchair bound so the term stride is used loosely. We haven’t invented a suitable alternative for people who cannot walk. The english language needs an update. I digress…
Currently, my amazingly resilient son is lying in a hospital bed attached to an IV antibiotic drip that is fighting off an infection so big it registered as 367 on the infection scale. Normal non infection levels would register at below 5. He’s very, very poorly. He has been in hospital since the 6th August, exactly one calendar month today. The Doctors have indicated that he will be in hospital on IV antibiotics for another month at least.
On the 4th August, our GP (whom I rate highly and have the deepest respect for) came out to our home to examine my son because he had a lump in his stomach that was causing him untold grief and pain. Briefly, my son does not normally experience pain from his torso down to his toes. He is numb internally and externally, which brings with it a lot of problems. The fact that he was in pain and could feel it was sending alarm bells off in both mine and our GP’s head and he came out to him.
He carried out a very thorough examination and tested all Obs, BP, Temp, checked eyes, mouth, ears, listened to his heart and lungs, did a spot check urine sample, and all of his stats came back well within normal parameters. He puzzled over the results, When he had tested for a UTI in the urine, there was absolutely no indicators to say that an infection was present. Bloods had been taken two days before and the results had come back clear of any infection. A kidney function test had been carried out just two weeks prior to August 4th and the results for that were 90% functionality, the best they have ever been in his entire life.
The GP confirmed that he was as concerned as both myself and my son were, but for lack of any evidence of infection, and lack of physical manifestation of illness, it was decided that perhaps constipation was causing the problem and a course of treatment was agreed upon. The GP had instructed that a short course of treatment for constipation should be carried out, but if it did not resolve the issue immediately, he would order a CT scan to see what else was going on. We never got that far.
Two days later my son was admitted into hospital after a 12 hour wait in A&E. (Accident & Emergency) In the two days from the 4th to the 6th, his infection rate went from Zero to off the charts registering at 367. A CT scan was carried out, it came back showing a ball of infection in his stomach, but more worryingly it also showed abscesses on his liver and his right kidney was enlarged to 48mm, while his left kidney was at 32mm. His right kidney was so full of infection it is non-functioning. Because of the massive level of infection and the areas it was covering, an MRI scan was ordered for better clarity of image. This turned up septic arthritis in both of his hips. My son is literally chock full of infection and it didn’t show up in any blood tests or urine samples. No one is to blame, it just is what it is and has managed to fly beneath the usual radar levels.
Currently after four weeks of constant IV super antibiotics, his infection rates have come down from 367 to 72 a drop of 295. The problem now is that the remaining 72 is proving to be resistant to the antibiotics so other options are being discussed. Currently, the option of choice is to put drains into his liver and kidney and the sack of infection in his stomach and drain them off. They have yet to decide on a course of action for the septic arthritis in his hips.
The problem with this is, he already has a stoma site on his right side, but the radiologist is unsure how to proceed using that as the exit point for the drains. He wants to create a new exit point to have the drain come out of, the problem with this is, it would be around the back edge of the right flank of his side. This would be semi-permanent until a decision is reached about the future of the right kidney. If they put the exit hole there my son is not going to be able to sit in his wheelchair without applying pressure to the drain. It opens up further risk of infection and when the drain would be eventually removed, it would leave a hole. My son does not heal quickly, if at all. He has pressure sores all over his backside because he doesn’t heal. They have been around for two and a half years now. They have barely made any progress because he has to sit on his behind constantly. He’s disabled. He has to put pressure on the area, he has no choice.
He is in a mess, and there is only one small light at the end of the tunnel right now, that is, his surgeon and urologist that performed the urostomy surgery on him 7 years ago and consequently saved his life, is now being contacted to come and give his expert opinion on the best way forward, and hopefully to perform any surgical procedure that may be required.
He is deeply trusted by my son and myself as a man who can do the job, who has the presence to calm my son when no one else can, and he is acutely aware of the complexities of my son’s health.
It took me 4 weeks to get anyone to listen to me about contacting him and a shouting match between me and the radiologist before he threw his hands up and agreed that it was the best way forward. I am mentally, physically and emotionally spent and broken. My son is my life, I cannot bear the thought I could lose him, but that thought has been ever present in my mind for the past 4 weeks. Yesterday I was told he has contracted Covid which has run rife on his ward. The ward has been on lockdown for the past week trying to contain the outbreak. He is coping with it, it doesn’t seem to be affecting him adversely at the moment for which we are most grateful. Neither of us is sure how much more we can cope with and we are trying to hold each other up with sarcastic humour and hysterically funny moments from the past stays in hospitals over the years. So far, we haven’t had one of those moments this time and that scares me a lot. The worst part about all of this is that normally when you are ill and you end up in hospital, you breath a small sigh of relief and think, I’m safe now, they will fix me. With my son, that isn’t the case. I have had to literally train up health care workers on how to change a stoma bag, how to dress pressure sores, what to use and which dressings to apply in which area for maximum skin protection. I have had to order the hospital Urologist consultant out of the room because he couldn’t deal with the complexities of my son’s case 7 years ago and almost killed him with his inaction, he was not getting a second chance to try again now. If he was too complex a case 7 years ago, then it could be taken to the bank that he is most definitely more complex now than he has ever been. Still, no one contacted my Son’s proper Urologist Consultant for his opinion until today.
A health care worker instructed my son to get out of bed and sit in the chair, you’ll feel much better Mr S if you do that. He and I are still wondering if he has learned the art of levitation yet. She has been ‘informed’ of her crass error. She no longer deals with him, neither does the Jnr. Ward Doctor, who after two weeks of IV antibiotics declared him ‘clinically well’ and said he could go home with tablet form antibiotics, and attend outpatients when his course ended. She needed the bed for a sick patient so my son could go home. After asking her if she was authorised to override the consultant Orthopaedic surgeon’s decision to keep my son in hospital for a minimum of 6 weeks on IV AB’s, she said she was just trying to reduce the risk of my son catching a hospital infection through long stay. Not as she had previously stated, she just needed the bed for a sick patient. Move over son.
She no longer works on his ward, for this I am truly grateful. I have spilled many words into the ears of the people who are supposedly looking after my son, they are now looking after him properly and following a tried and tested protocol that works. Mine. It isn’t rocket science, but it does require a degree of common sense, which unfortunately is thin on the ground.
Everyone has been telling me we need a care package putting in place at home to allow me to step back and have a ‘well earned’ rest as they put it. Retire they said, you’ve earned it, they said. The reality? They can’t find enough people to do all the things I normally do with my son on a daily basis. The logistics of it all have flummoxed them. I am not holding my breath for the care package, it is a pipe dream that will probably come to nothing. They have to be seen to be making the right noises, but that’s all it is, white noise in the background.
If you got to the end of this post, thank you. I appreciate you reading it. I just needed somewhere to put it all down safely.