Well isn’t this some funky monkey business?! David and I ended 2023 in the ER and started 2024 in the hospital….and we are still here. Once again I’d like to say that I have no words, but I actually have plenty and none of them are pleasant.
Since it’s been awhile since I have had a dedicated “David” blog piece, I believe that today should be the day to remedy that. So here we go.
For anyone who knows us or is on Facebook and reads my posts, you all probably know that the last 6-8 weeks hasn’t been a joyride for David. For those of you who don’t know the story, let me fill you in.
If you have never been introduced to David before, he is my youngest son who is 23 years old and has a laundry list of health issues that started when he was born at 27 weeks. He has cerebral palsy, hydrocephalus, he is developmentally delayed, non-verbal, hearing impaired, visually impaired and has a seizure disorder. On paper he sounds a mess, but his reality is he is a basically healthy young man, with a wicked sense of humor, who has to do somethings differently but loves life, love his family, SpongeBob, COPS, and the Foo Fighters. He is funny, active and the heart of our family. All in all, we live a fairly normal life.
So if things are basically good, then how did we end up at Hotel Hospital? Well, every few years David likes to go off script and do some wild thing with his health that catches me off guard, is scary as hell and forces me to learn “nursing skills” that I didn’t currently have and quite frankly, never wanted. Some of his past oldies but goodies include asperative pneumonia which resulted in sepsis, shunt malfunctions, post surgical sepsis, a year of chronic seizure activity, kidney stones and bladder retention that almost resulted in sepsis and now…..he has an abscess which has tried to run amuck in his body.
Our current story begins on November 26th (2023). David suddenly had a hard spot about the size of an egg, on the back of his right leg below his knee. Of course it was a Sunday so no docs were readily available. My first thought was that maybe it had to do with his CP and his muscles, so I called his on call ortho doc who said to get him to the ER. After one CT and a several hours wait, we learned that the hard egg was actually an abscess. They ended up opening the abscess at the bedside, drained it, packed it, bandaged it and sent us home with a 21 day supply of antibiotics and instructions on when to take the packing out. Then we were on our way.
All went smoothly and he was healing nicely until December 1st when the hardness came back. This was on a Friday, and after a call to his primary care doc who said, “back to the ER you go”…. It was back to the ER we went. After another hours long wait, the surgery team showed up, once again at bedside opened the incision, widened it and dug around trying to get out as much infection as possible. Then, as before, he was packed, bandaged and we were sent on our way with instructions to remove the packing in 24 hours and then only bandage if it was still draining. Oh and to continue the antibiotics.
Once again I followed the instructions to a “T”, except for the fact that it wouldn’t stop draining. I am not a nurse and my medical skills don’t go much past handing out medicine and putting on bandaids. I am however acutely aware of all the hardware David has in his body from shunts to metals plates and screws and how we don’t ever want infection getting to any of that, so daily as I changed gross and pusy bandages, my worry increased. I was neurotic when it came to his antibiotics and I regularly checked his incision for swelling or redness and took his temp so often he would lift his armpit for me every time he saw me coming. I also exhausted every nurse friend I had and some people I didn’t even know, showing them pictures and asking them questions. I think somewhere deep down, I knew this abscess was not just going to be a one or two and done deal. I hate it when I know these things and am right!
On December 30th, David had been up and in his chair most of the day. He hadn’t acted like he was hurting or anything, but when I laid him down, he grabbed his leg and refused to stretch it out. On further investigation, further up from the incision, on the outside of his leg where he had a previous surgery and he had a plate, it was red and swollen. I knew without a second thought that we had a problem. Back to the ER we went yet again, where by the Grace of God we hit a non-busy window of time and he was immediately given a CT. This time, the CT not only showed the original abscess still alive and well, but it also showed that it was possibly tracking up his leg. This was not good. It was at this point David went from an outpatient ER patient, to an inpatient awaiting a floor bed and surgery patient.
On December 31st, he was scheduled for surgery and I was given the details of what we were and could be looking at. They had done blood cultures that we had to wait for them to grow over the next three days, so they were watching that, and they were planning to culture the wound which meant we would have another 3 days to see what grew there. His white count was elevated which indicated infection and they also wanted to do an MRI to get a better look at where the infection might be.
The fear was that the infection might have contaminated the metal, which could mean long term IV antibiotics. Long term meaning for the rest of his life as you can’t kill infection on metal. There was also the worry that the infection might be on or in the bone. This brought us to more serious consequences. Osteo Myelitis. This is a chronic infection in the bone. If this were the case then his ortho doc would be brought in and they would have to decide along with his antibiotics, whether they would try to remove some of the metal, or if the bone were involved, to go in and remove it from the bone OR worst case scenario, remove his leg completely. HAPPY NEW YEARS EVE! I was and have been a mess ever since.
They went ahead and did surgery to clean out where the CT showed the pockets of infection. The surgery took only about 45 minutes and the surgeon drained both the original abscess as well as the pocket that was on the upper part of his leg. When done, she came out to tell me that they found very little infection, which surprised us all. Most of it was just fluid, but they stitched up the upper incision and put a wound vac on the original spot.
While it was good news that much of the infection had apparently drained prior to surgery, the fact that his white count was still elevated caused more worry that it was indeed Osteo Myelitis. The kicker is, we can’t know if the infection is in or on the bone without an MRI and as of this moment, we are STILL trying to get that illusive MRI! Yes, I am getting a bit fussy and it has to do (I believe) with someone in radiology’s inability to read information, but I’ll save that rant for another blog!
As of today, David has seen the hospitalist, someone from surgery, infectious med, and the wound care person. She checked the incision which looks amazing and cleaned out the wound vac. THAT David did not enjoy and he nearly pinched a hole in me. Other than that though, both of his cultures are clean and have grown nothing and his white count is normal. Also, in the last 30 minutes, his IV failed, so there are more needles in his future. Poor kid.
Things around here either crawl at a snails pace or they move at the speed of light. I was just this minute informed that all is a go for the MRI at 9 am tomorrow. Thank goodness. Hopefully it will come with answers we need.
The rest of today, David will get his IV changed, a bath (of sorts), dinner and TV. And let me tell you about David and this hospital food!!!
I think this child of mine is sending me a pretty strong message about my cooking at home. This boy LOVES his hospital food. Every morning he chooses pancakes, hash browns and yogurt. He also wants chocolate milk, but as of today, he has run them out of it. For lunch he always chooses a deli sandwich with turkey, cheese avocado and tomato, potato soup, steak cut fries, chocolate chip cookie and chocolate milk. Supper is chicken tenders (he doesn’t typically like chicken tenders…but whatever), steak cut fries, Mac and cheese, chocolate chip cookies and…..chocolate milk. When he knows it’s time for me to order he starts pointing towards the phone and he is not happy until it’s here. Silly boy! I guess mom is going to have to up her food game at home.
So now we wait. Tomorrow should give us the answers we need to move forward. Who knows, we may even be home this time tomorrow (hopefully before the snow). If you pray, please say a prayer that David’s bones are not affected by the infection and if you don’t pray, could you please do it anyway…just this once….for David?!
Until next time….
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