Six months ago...to the day, I made a post that I had finally finished everything I needed to take care of for the day, including my research paper on PTSD in families and siblings of children with complex medical needs and had finally taken myself to the ER to be seen.
The week before, I had surgery to fix the area of my c-section site that had opened...six years after my last baby was born. I was discharged without proper pain control, I hadn't slept much since the surgery, the amount of pain was finally to the point I couldn't take one step without wincing. I had called Monday to be seen by the surgeon, they couldn't see my until Friday...I said okay...Wednesday rolled around...and I was done, but I had to get everything taken care of first before we went.
That's was the story of my life until that day...once everything else was done, then I could take care of me and my needs. We bought huge bottles of generic OTC pain medicine in hopes to get through until my paper was done...used an ice pack for the swelling that we nicknamed Leroy, and I did everything else that needed to be done so I didn't think about the pain or discomfort and then finally, I gave in and we went to be seen.
The week before, I had surgery to fix the area of my c-section site that had opened...six years after my last baby was born. I was discharged without proper pain control, I hadn't slept much since the surgery, the amount of pain was finally to the point I couldn't take one step without wincing. I had called Monday to be seen by the surgeon, they couldn't see my until Friday...I said okay...Wednesday rolled around...and I was done, but I had to get everything taken care of first before we went.
That's was the story of my life until that day...once everything else was done, then I could take care of me and my needs. We bought huge bottles of generic OTC pain medicine in hopes to get through until my paper was done...used an ice pack for the swelling that we nicknamed Leroy, and I did everything else that needed to be done so I didn't think about the pain or discomfort and then finally, I gave in and we went to be seen.
My next mostly coherent moment was two days later...on Friday morning, being wheeled down for surgery number three, and a wound vac change performed in the OR. We sat Wednesday afternoon, evening, and night in the ER...was told that I only had a small abscess like thing going on, it would be drained and then I could go home after observation and antibiotics.
Cool...I could handle that. I was transferred for admission, put in my room, got settled...and then was told the surgeon who did my surgery the week before was on his way from home to come see me. Honestly, I didn't think much of it...and then he walked in, looked at me, looked at my stomach and said he came straight here from his house after demanding the scans be sent to him there and said if I didn't go into the OR immediately tonight, I'd be dead by morning. What we were told was an abscess was really necrosis, puss, infection and it not only was it in the surgical site, but in my bloodstream. He was confident it was impacted organs just yet, but it was in my muscle tissue as well from the looks on the CT from the ER, he was having the OR prepped and it could be 2 minute or 2 hours before I go down, but it had to happen tonight. I lost it...the blown of his words, the lack of mental preparedness, the fact I had just told the kids I'd be home tomorrow before school let out and kissed them goodnight without any concern something worse could be going on...and here he was talking to anesthesia about leaving an ICU room open because there was a high probability I was going there on a vent, with a completely open abdomen until they could safely put on the wound vac.
Cool...I could handle that. I was transferred for admission, put in my room, got settled...and then was told the surgeon who did my surgery the week before was on his way from home to come see me. Honestly, I didn't think much of it...and then he walked in, looked at me, looked at my stomach and said he came straight here from his house after demanding the scans be sent to him there and said if I didn't go into the OR immediately tonight, I'd be dead by morning. What we were told was an abscess was really necrosis, puss, infection and it not only was it in the surgical site, but in my bloodstream. He was confident it was impacted organs just yet, but it was in my muscle tissue as well from the looks on the CT from the ER, he was having the OR prepped and it could be 2 minute or 2 hours before I go down, but it had to happen tonight. I lost it...the blown of his words, the lack of mental preparedness, the fact I had just told the kids I'd be home tomorrow before school let out and kissed them goodnight without any concern something worse could be going on...and here he was talking to anesthesia about leaving an ICU room open because there was a high probability I was going there on a vent, with a completely open abdomen until they could safely put on the wound vac.
Fortunately, I didn't go into the ICU ever...I was stable enough, and the infection wasn't any deeper than just the top layers of fascia, so all I needed was the wound vac, and lots of heavy antibiotics that resulted in a PICC line being placed Thursday evening before the change in the OR on Friday morning.
Friday evening rolled around and I was restless, I hadn't slept in over a week...my emotions were high, my labwork was off, there was concerns I developed an anxiety disorder/PTSD that needed to be treated, and my kids were terrified to see me in such bad shape no matter how I tried to pull myself together and make things a little more home-like in the room. I lost a significant amount of weight quickly as well...it was insane. The nurse Friday night said I had to take care of myself otherwise I wasn't going to get home anytime soon, therefore I needed to sleep, but I just couldn't get there comfortably or long enough to be beneficial. We learned IV Valium was going to be my best friend for a few nights and during the day in order to help me reset, gather strength, and emotionally get in a better place as well.
Friday evening rolled around and I was restless, I hadn't slept in over a week...my emotions were high, my labwork was off, there was concerns I developed an anxiety disorder/PTSD that needed to be treated, and my kids were terrified to see me in such bad shape no matter how I tried to pull myself together and make things a little more home-like in the room. I lost a significant amount of weight quickly as well...it was insane. The nurse Friday night said I had to take care of myself otherwise I wasn't going to get home anytime soon, therefore I needed to sleep, but I just couldn't get there comfortably or long enough to be beneficial. We learned IV Valium was going to be my best friend for a few nights and during the day in order to help me reset, gather strength, and emotionally get in a better place as well.
I finally went home the following week with my wound vac...there was a lot of adjusting, new sleeping arrangements, the addition of home health nurses to our weekly schedule, trying to manage the pain in general, and particularly the pain from the changes. Trying to rebuild strength, eat an actual meal, wean off pain medicine...drive, function, you name it.
Of course, it happened during the summer...which honestly it wasn't terribly hot, but I could only handle being outside for maybe 15 minutes at most, and on top of that I had to be in the shade. Cogsworth (my wound vac's name), hindered me from being able to do much of anything "fun" with the kids as well, confining me to as close to the action as I could be without making me sick. I was exhausted...and there were days I tried to do more than I should have, because I wanted to be normal again. And in the moments, I realized I tried to take on so much before that I never had a moment for myself, and it almost killed me.
Of course, it happened during the summer...which honestly it wasn't terribly hot, but I could only handle being outside for maybe 15 minutes at most, and on top of that I had to be in the shade. Cogsworth (my wound vac's name), hindered me from being able to do much of anything "fun" with the kids as well, confining me to as close to the action as I could be without making me sick. I was exhausted...and there were days I tried to do more than I should have, because I wanted to be normal again. And in the moments, I realized I tried to take on so much before that I never had a moment for myself, and it almost killed me.
I limited myself to one work related task a day that didn't involve lengthy period of standing, bending, or putting strain on my healing surgery site.
It made things interesting to say the least, it was tough...and it was literally retraining my brain to understand I can physically only do so much. The more I tried to do, the more I hurt...and yes, I knew I was making gowns take longer to be done, and disappointing families and children, but I had to take care of me first this time, otherwise...there wouldn't be anyone to make gowns at all. Over a month after having the wound vac placed, it was finally removed. There was still healing to be done, but my device was disconnected permanently and my body was to do the rest on it's own. Two months after the removal of the wound vac, my surgical site was 100% healed on the outside...and by the end of August things were physically back to a more healthy version of normal.
It made things interesting to say the least, it was tough...and it was literally retraining my brain to understand I can physically only do so much. The more I tried to do, the more I hurt...and yes, I knew I was making gowns take longer to be done, and disappointing families and children, but I had to take care of me first this time, otherwise...there wouldn't be anyone to make gowns at all. Over a month after having the wound vac placed, it was finally removed. There was still healing to be done, but my device was disconnected permanently and my body was to do the rest on it's own. Two months after the removal of the wound vac, my surgical site was 100% healed on the outside...and by the end of August things were physically back to a more healthy version of normal.
The point of my little account is to remind moms, dads, grandparents, and caregivers of children with complex medical needs...you have to take care of yourself too. If you don't bad things can and will happen. Maybe not right away, maybe not even for a year or so later, but eventually it will catch up to you. Something will happen and trying to recover from it will take longer than you ever believed imaginable. Yes, this sweet child needs you love, care, attention, and strength...but you cannot put out a fire from inside the house. You may not have family members near by to help, you may not have friends near by to help, but the hospital is full of resources, volunteers, and many other families that can provide support, insight, and even love on your baby while you take a nap, or get a meal that isn't from the cafeteria. Lean on them, they're in your corner...they are apart of the village taking care of your little one. It truly takes a village...even when you feel like the only column standing, there has to be at least one or two more, otherwise the building would collapse.
You cannot do this alone, or at least not effectively for very long, but it isn't because you're weak, inferior, or incapable...it is because you don't have to...and in trying to do so you're going to create a serious health risk for yourself and your family. If you need help connecting to resources, contact the Child Life Specialist, chaplains, or even social workers at the hospital...that's why they have the career they do. Reach out to other families during clinic visits or hospital stays, look for them on social media outlets...that's been the most amazing resource ever. Hell, families helped me with making my wound vac changes easier and smoother after we were home...it is a blessing in disguise.
Remember to breathe...think...and then take action, and in that care plan created for your child you need to create one for you too.
You cannot do this alone, or at least not effectively for very long, but it isn't because you're weak, inferior, or incapable...it is because you don't have to...and in trying to do so you're going to create a serious health risk for yourself and your family. If you need help connecting to resources, contact the Child Life Specialist, chaplains, or even social workers at the hospital...that's why they have the career they do. Reach out to other families during clinic visits or hospital stays, look for them on social media outlets...that's been the most amazing resource ever. Hell, families helped me with making my wound vac changes easier and smoother after we were home...it is a blessing in disguise.
Remember to breathe...think...and then take action, and in that care plan created for your child you need to create one for you too.
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