Every now and again the Universe forces me to slow way down. This is one of those times. My oldest has had a painful cyst all week that has slowly gotten more debilitating. It’s not a common thing, so we didn’t get proper care to begin with. It started about 11 days ago. I took him in to the pediatrician about 5 days ago, and they put him on a strong antibiotic and told us he would feel significantly better in 24 hours.
In 24 hours he was in more pain. I called after hours and talked to the nurse practitioner on call. She said that the day before, when we were in the office, they asked her to look at this cyst because she has a history of working with abscesses. She told me it was a pilonidal cyst, extremely painful and that she would lance it the next day. I promised my boy that he would have relief soon.
We went in, hopeful. The ride there was awful. Every bump and stop hurt. We assured him that it would be better soon. The procedure was awful and provided him with little relief. The ride home was worse than the ride there. Finally about an hour after we got home, and he took tylenol with codeine he slept for hours.
They filled the wound with gauze (so it could heal from the inside out) and left the incision open so it can drain. He has to go back on Monday to get it worked on again.
He’s still in a significant amount of pain and can barely move. He is on a cot in the living room and we have to be attentive. He needs help with nearly everything.
The worst part is the pain and emotional toll it’s taking on him. It wasn’t this bad until this week, but has slowly gotten worse and his normally lighthearted and fun spirit has disappeared. My heart breaks every time he wakes up and I see tears in his eyes.
At 3:30 am last night, it reappeared for a second. He had to go to the bathroom, but had to use a urinal I bought (thank goodness) because he couldn’t get up without chancing great pain. Afterwards, I was trying to help him get readjusted- which is a long process with every inch right now. He looks at me and says in a sly voice, That doctor really tore me a new one.
Now, that’s my boy! Even for a second, it was nice to see his humor.
I am trying to focus on his healing, and not the feeling of betrayal. In talking to this woman who knows abscesses, a few things really are bothering me. He should not have been put on antibiotics, they do zero good for this condition. Now that he’s on them though, he has to finish the course, or else we could have huge problems. Also, I learned that this could have been done 5 days ago when I took him on Tuesday, if he was properly diagnosed. They wanted her to look at him, but didn’t because she was in the middle of a procedure. If she had diagnosed it, he could have had it done on Tuesday instead of waiting until Friday. I am not sharing this with him, nor am I dwelling on it. Probably shouldn’t have even written about it, but at least now maybe it’s out of my head.
I wish medical care in the United States was better. This kiddo also has diabetes, and I can’t tell you how many medical people (different professionals from both his pediatrician and endocrinologist) I talked to this week that were no help with this, and some gave me false information completely.
I can’t tell you how hopeless I felt Thursday night when he was in so much pain and I was talking to the NP. She had no power at home (we were hit with storms earlier in the week), otherwise she could have called in that tylenol with codeine (gosh I wished I had pushed more that night, it’s the only thing that has helped a little with the pain). I was worried about his pain and mobility but she said if we took him to the ER, they would likely just give him a referral because this is a rare thing. So we waited.. but didn’t find the relief we kept hearing he’d feel. In another era, she may have been able to prescribe something more helpful for pain. Sadly, too many doctors and patients abused pain medication so now people who actually need it have to jump through hoops to get anything stronger than Tylenol 3.
When this kid was 18 months he got idiopathic (no reason) autoimmune hemolytic anemia. He was hospitalized for a few days and given a blood transfusion and then was on steroids for a few months after.
When he was 13 years old, he was diagnosed with diabetes at a well visit. We had to take him right to the hospital where we stayed for three days, mostly getting educated about juvenile diabetes.
Now he’s 18 and he has this gosh awful weird thing. I kind of wish we were a the hospital like the times before. It was much easier, and my mind was at ease.
Yesterday, hubby was out grilling and oldest was on his cot, shaking uncontrollably (nerves, not moving his legs enough, they were seizing up). I went outside and word vomited.
I don’t think we’re equipped to deal with this.
I think we need an ambulance to come and take him to the hospital.
He can barely move and sponge baths, we can’t do this.
Then I realized how silly I sounded. Not to mention, understaffed hospitals aren’t much better equipped. Then I realized that this is the first big thing we’ve done without someone who knows what they’re doing right there- which maybe was partially why I was so apprehensive and still am.
This is so hard.
I’ve never had to see one of my kids in so much pain.
After arriving home from the procedure, I ran out quickly to get his prescription. On the way back, I turned up the radio, opened the windows and ugly loud cried all the way home.
I don’t know what these lessons are, but this sure seems like this situation is on repeat. As he grows into adulthood will he start to think his mom has Munchausen’s Snydrome?
So.. I really didn’t want to write this, I don’t really want to recall this event. Ever. But it does somehow help to write. Sometimes when I reread early posts, I am astonished at how much we can change our perspectives in a relatively short time.
And I have the time on this beautiful Saturday morning. I’ve had to cancel just about everything, and am more than okay with it. I don’t want to do much of anything at the moment. I was hoping to get on the Peloton today, it’s been awhile, but I’m not sure I have it in me, 1000% okay with that.
While he is like this the only time I feel okay is when I’m near him. That doesn’t sound healthy, and maybe it has something to do with losing my mom suddenly, I don’t know but also don’t care.
I need to wrap this up, but want to say that he has woken up and even though he was unable to walk to the bathroom (thank goodness I picked up that urinal), he was able to stand for a minute and is now chatting my ear off about this new law in the UK that acknowledges that crustaceans are sentient beings (he knew this would make me happy) and have to be killed more humanely. I am sooooooo happy to listen to his chattiness, that’s the sparkle I’ve been missing.
If you took a second to read this, I sure appreciate any well wishes, prayers or good vibes. I sure hope that he is finally going to start healing and get some relief <3