Body, Mind and Soul. How I'm Doing So Far!

No, I did not abandon ship these last couple of weeks. I in fact lost my laptop charger (which is a story in and of itself) and call me old school or a spoiled brat, I prefer to only write my blogs on my laptop. So thanks to Amazon, I now have a new charger and I am back in business. 

Today, I write this from my bed. Yes, it is 11ish in the morning and I am in bed, with my dogs, writing a blog. Definitely not my normal Saturday routine, but today, and for the weekend, this is where I plan to stay. This is the closest thing to downtime that I am going to get, and even this is getting me sulky looks from others who reside here, but other than Davids needs this weekend, I am going to concentrate on myself mentally, physically and spiritually. 

This last week, some things occurred to me. One of those things was that I am not really a pleasure to be around right now. My body hurts, my brain cannot stay engaged for longer than a few minutes and emotionally/spiritually I am struggling. I am exhausted physically and this exhaustion is playing havoc with everything else. So yeah, here I am venting a bit. 

Do not ever get me wrong though. I feel grateful everyday for David and all the many wonderful blessings he has brought to my life, but I also won't lie, being the parent of a special needs child can be tough at times. Add to that, being a widowed mother of a special needs child and you have a new layer of stress, frustration and even loneliness that a two parent partnership doesn't experience. 

Also, I think sometimes people think I put my whole life out there for the world to see, but the reality is, there is so much that goes on in my life behind the scenes that doesn't even have to do with David, that I never share. Heck, even my own family and friends don't know my real life. If I am completely honest, at times, David is the least stressful part of my world. I juggle so much in my daily life above and beyond David, and apparently I do it well enough, that even those that live in my home don't always see it, or appreciate it. 

On a good day, I can put on a smile, look for the positive and plow through the day fixing this, taking care of that, and putting out small fires before the entire structure of the family succumb to them. However, when something big happens, like the last few weeks with David, it becomes very evident that I am only one insignificant human being in all of this craziness and I am completely incapable of being all things for everyone in my little world. That is when my focus is squarely on David, and this is also where everything else starts to crumble from the cleanliness of my house, to the needs of the others who live in my house, to even the attention my dogs think they need. With all of this, I start feeling tremendous pressure to up my game and do better, until my body and mind just start giving out. This is where I currently am and have been all week if not longer. 

The truth is, to be a special needs parent, you have to be built differently because you see and feel the world differently. In David's case, while he looks like a hot mess on paper, he typically does not need or even want a lot of attention from me. Yes, he "needs" me to lift him and do his basic care, but once those things are accomplished, he has his own routines he likes and he is very independent with them. It's not that he doesn't like or love me, because he does, but at times, my overt presence becomes an irritation to him and I can't tell you the number of times he kicks me out of his space. For me, it is a constant back-and-forth of am I doing too much or not enough for him? After a time though, we do get into a routine, until something like major seizure activity takes place, or kidney stones, sepsis, or an abscess rears their ugly heads. Then, that resets us to a completely different mode, a survival mode if you will, where he needs me more and yet really gets to hating my presence when it overrides his independence. Add in the pain, frustration and stress these cause him, along with his inability to tell me exactly how he feels, and by day's end, I think we both want to sit down and cry. There are literally days that I go to bed feeling like a failure to both him and everyone else in my home. 

While David has been a lot of my current struggle, he certainly is not all of it. It feels like since early fall, I have been dealing with something. We of course had family situations that pop up from time to time and trying to keep everyone (myself included) calm and focused on the big picture and what is truly important, isn't always easy here. Then there was my brother. While I knew he was very sick, I didn't know that he would be gone before the holidays. That whole situation did things to me emotionally that I still have not had time to process. Then just the normal stress of the holidays and David developing the original abscess. Nov. 26th was the day it all started, taking us to Dec. 30th which firmly planted him in the hospital for almost two full weeks. 

As I stated earlier, as a special needs mom, I am built differently. I have people ask, "Why don't you go home at night?" or "Can I come up and stay with David while you go home for a bit?" or the kindest of all, "Can I come up and sit with you awhile?" What people don't understand is that David is non-verbal so he can't express himself verbally if there is an issue. Also, sadly, in this day and age, his inability to speak makes him vulnerable to others with bad intentions or a poor or lazy work ethic. I WILL NEVER, leave David alone in the hospital. In fact, I don't even go to the cafeteria. The fact is though, because he is non-verbal and the hospital is usually short staffed, they don't want me to leave. They WANT me there. 

While offering to come up and relieve me is incredibly kind, I can't or won't allow anyone else to do this for the same reasons. If something happened and they don't know Davids noises or signs, I don't want to put them, myself, or David in a situation where there is lasting guilt over an attempt at a kind act. 

Finally, when I am at the hospital with David, I am in a very different headspace. I have spent so many nights alone in the hospital with David, that I don't know how to be with others there. It is uncomfortable trying to make small talk and my brain shuts down and it just becomes exhausting. Even my family understand this and other than possibly bringing up some necessities from home, they don't even come up to the hospital. Weird yes, but it is how we roll in the hospital.

As per usual, David's abscess didn't come without extenuating circumstances. Before the abscess was found, David had been scheduled to have his VNS (which is an implant that regulates his seizures) changed out as the battery was about to die. It was to happen on the 29th I believe. Once the abscess was found and he had infection in his body, the surgery could not take place until all infection was gone. It was believed it would be fine though as he was expected to have enough battery to get through until the first of the year. As we know though, he is still struggling with the infection and the VNS will likely not get replaced until March or later. What this means is that he no longer has the VNS to stop or head off any seizure activity he has, so on top of everything else, I have to constantly monitor him for seizure tells that mean his well controlled seizures might start up again and we have no idea how those seizures might manifest. Yes, an added layer of stress. But that's not all. 

Davids teeth have never had decay, but he has not been able to see a dentist in a couple of years because he has to be sedated for any dental proceedure and because of insurance, the anestesia team at his usual dentist (and the only one who sedates) would not accept his insurance. Then, in November, I was informed that they would now see him again. We were all set to go in, and just in time, as his front tooth had suddenly developed decay, but guess what? They can't see him until all of the infection is gone. And another layer of stress as I pray the tooth doesn't develope an abscess before it can be taken care of. 

Finally, as part of his at home care, David has a PICC line in which he has to be given two IV antibiotics every day. Guess who gets to do that? Yep! That's right! The woman with not an ounce of medical training. Did you know that an LPN is not allowed to give IV meds through a PICC line, but me with no training, is not only expected to do so, but also expected not to set up any knew infection while doing so. Ain't that some sh*t! And it is a process. The meds must be given the same time everyday with saline flush given several times in the course of the process, along with timed push for each med and finishing off with heparin. I literally sweat blood each time making sure I clean the port thoroughly with alcohol before each push and making sure there are no air bubbles in the syringes. To say it is the least favorite time of my day would not be an exaggeration. 

So as you see, my stress is still very high, even as David heals. 

I don't dislike my life, nor do I regret the path laid out for me thus far. However, I am tired. While most of my friends are retiring and planning on vacations and new adventures, I am fully aware that their lives will never be mine. My life will always be waiting for the other shoe to drop, doctors, hospitals, worrying about how much longer my van will hold out, making sure I can stretch my fixed income to pay the bills, and lets not forget.....good old family drama. On most days, I don't even realize how different my life is from others, but coming off the last few months and feeling all of it clear to my soul without being able to have the time or space to process most of it, may just be getting to me a bit. Thus, my weekend in bed/semi vacation. 

It is my hope that after some rest and relaxing my back a bit, that come Monday, I will be back to the usual me who sees things with a positive spin and a go get em attitude. 

Thanks for letting me vent and please don't hold my imperfctions in life against me. I am not strong, nor fearless, nor great in any manner. I am just a special needs mom who has no choice but to fly by the seat of her pants and figure it out as she goes along, and truth be told, I wouldn't have it any other way. 

Until next time.......

10 Floors Up

Well, this is David’s 11th day in the hospital and here I sit. I am thinking that this has been his longest stay to date, and hopefully ever. 

This whole ordeal has been a lesson in patience, prayer and the acceptance that life sometimes gives us things we have no control over. You would think though, that over the years I would have that last one committed to memory. 

It is my hope that tomorrow we are out of here. It will be between storm fronts and will get us out before the temps drop to arctic degrees. He will be going home with a wound vac and a PICC line and he will receive IV meds for 4-6 weeks and the wound vac will stay in place until his wounds are closed and healed (possibly 4-6 weeks also). 

The upside is that David will likely be able to get back to his normal routine and bonus…..he will be getting a hospital bed that will just help life in general. It will definitely help my back with lifting and positioning. And speaking of my back, it is going to be getting more of a workout as Mr. David LOVES the hospital food and has therefore put on about 4-5 pounds since he has been here. Of course he has. 

Our stay here has taught me so many things and allowed me to get a close up view of a lot of things. Since arriving here on Dec. 30th, David’s has been in the ER, surgery, the oncology floor (it was the only place they had beds at the time), MRI (radiology) and finally he was transferred to the neuro/trauma floor when the oncology floor beds were needed by actual cancer patients. 

The transfer from the pediatric unit where we spent all of our hospital stays his entire life before he aged out, to the adult units has been eye opening and to be honest, I was nervous. Everyone in peds knew David. We always saw familiar faces and sometimes the nurses even fought over getting to care for him. No matter how severe the situation, I never worried about his care. I have learned though, that moving to the adult world and hospital units has been a much easier than originally anticipated.

In our stay here, there have only been a couple of situations that left me less than happy, but for the most part, David has had amazing care and awesome staff. My only issues were an aide on the oncology floor that I knew was doing as little as she could to get by and what she was doing was half-assed. Luckily we didn’t even have her a full shift. The other issue was MRI. 

Since we have dealt with radiology here for years, I have always known them to be very quick and on top of things, but getting the MRI that was crucial to get before having surgery was a literal nightmare this time. It took nearly a week, all the while David’s leg had a massive infection. As mom and a frustrated bordering on angry mom at that. I was ready to go have words with the head of radiology myself. Luckily it didn’t come to that, but another day and I would likely have been trespassed from the property. 

In all fairness though, not only did we arrive on a holiday weekend when everyone was short staffed, but Davids was also a complicated case. He had metal and various implantations, that had to be worked around, so it wasn’t just a lack of care or effort on their part, although I do think a couple of things were overlooked which held up the process and prolonged the situation.

This time, because of the new issues (abscesses and infection) we got to experience the wound team who are absolutely amazing and we got up close and personal with the IV team who have been life savers and who will be placing the PICC line. 

David has had such excellent care from the docs, residents, nurses, aides, lab techs, food service and cleaning people. I have been extremely impressed with 99% of everything we have experienced. Most of all, they all seem to really like David and even if they aren’t on his team that shift, they always drop in to say hi. 

Even though this has been a fairly traumatic experience, I have tried hard to hold perspective through it all. I have tried to find the positive in even the most stressful moments and I do my best to always thank those who care for David and be respectful of everything they do. I don’t think these caregivers get the appreciation or respect they deserve and I fully believe that people give their best when they are treated your best.

I have had a lot of time to think up here and appreciate things that in my normal busy life I don’t always take the time to give my full attention to. It has become very clear to me that my grandkids are what keep me motivated and smiling. Being away from them has been tough. They do understand though that David has to currently be my priority and I love them all the more for that.

David in most cases has stayed positive and upbeat, enjoying his tablet and some toys we have up here for him. And as I said, the food here makes him ecstatically happy. He also enjoys anyone who walks in to talk to him, unless of course, they are holding what he perceives to be a needle of any kind.

It has snowed twice while we have been here and since we are on the 10th floor, we have had some exquisitely beautiful snow shows out our huge window. I have even gotten to play with the camera on my phone a bit and took some really pretty pictures of the snow during and after. I actually enjoyed that. 

The days pass quickly up here with lots of people in and out, day and night. Most of the time though, when there is a quiet moment, I just pull into myself and think. Even being a mom of a special child for all these years, there is never a completely comfortable emotional place to secure myself in, and if I try to find one, things like abscesses will pop up out of nowhere and bring me back to the reality that mine and David’s life has always and will always be different than most. There will always be the terrifying moments that come with the territory, but there is also so much joy, laughter and love that scary moments fade away….until the next one comes along.

I know many people love and care about us, but I also feel a great loneliness at times. It is no one’s fault, and sadly it can’t be filled by anyone except the one who isn’t here. Tim and I started this journey together and had he lived, we would still be sharing it together. As David’s other parent, the weight of the scary times as well as the joy of the good times would have been evenly distributed and together we would have understood the depth of emotions that come with all of this. We would have supported not only David but each other thru both the best and the worst. With him gone though, I am alone where David is concerned. Every decision, every crisis, every moment is mine and mine alone to care for him, love him and most of all fight for him. There is just no one else that is his parent. There is no one to hold me up and so I have become very independent and closed off in moments of crisis. I don’t want to do it alone, but I also fight having anyone around. It is a weird place to be in and I have thought a lot about it looking out 10 floors up over the snowy city. 

Hopefully, this speed bump is running its course and soon we will be back home, working our way back to whatever our new normal will be for 2024. 

I hope you all know that I am beyond grateful for anyone who has come up, messaged, called and most of all prayed. Those prayers are huge and seem to be working and I hope to take each of those prayers and pray them forward. 

Perhaps this less than stellar start for the new year has set the stage for something new, something joyful and maybe even something wonderful. I choose to stay on the most positive side of hope possible. 

Until next time….

Hotel Hospital for The New Year

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….