I am sorry that I don’t have a decorating post for today. After a hectic week I decided maybe this post was more appropriate and also fits our lifestyle theme for this blog. Last week my son came down with appendicitis and needed surgery. He had been complaining all day and the night before about his stomach hurting. Although he is older, he has Down syndrome and does not communicate as most older children. He also doesn’t complain about every ache and pain he has which makes it difficult to know just when he first began with his present pain.
July 4th we sat in our car watching the fireworks nearby, his side kicks are seen here enjoying the festivities. A short time later…less than 24 hours later we were sitting in the ER waiting to find out what was happening. A few hours earlier, he decided he couldn’t take the pain anymore and began not just crying but sobbing out of control. He never cries, but when he does it is uncontrollable.
You can see the pain on his face here. At this point he began gagging and coughing like he might be sick to his stomach. But nothing more. They did blood tests and a CT scan before diagnosing it as appendicitis. Surgery would not be for a full 12 hours later. By this time his pain was no longer controlled by medications.
I am writing this post to help parents know how to be your child’s advocate. It is difficult to push the envelope with medical personnel sometimes especially when they have their own agenda. So here are some pointers that I hope will help:
- Know your child’s pain threshold. Know what is normal and what is not, for behavior AND for pain. This will allow you to decide when your child is in danger. My son never cries. When he started crying I knew we needed help. So off to the ER we went (the urgent care and his own family physician’s office were both closed).
- Before taking your child to the ER, do everything first. If there are easier ways to check for simpler solutions do this first. In other words you will save a lot of time and money if you give Tylenol or Advil, allow 30 minutes to see if this will take care of the pain. Take the child to his family doctor or urgent care if possible before taking him to ER unless there is a hemorrhaging issue or other dire emergency.
- Take along to the ER any current meds in their original bottles your child may be on, in a plastic bag. This will be an easy way for the ER staff to see what might be a severe side effect or could interfere with a treatment plan.
- Once your child is in ER, be his advocate. Brody does not talk clearly so I communicated to ER staff that he never cries, so his pain threshold is high and he is in extreme pain. They will not know your child to know this about them unless you share.
- ALWAYS be his advocate. If the staff is wanting your child to walk and he cannot, let them know he needs a wheelchair. If the child is clearly in pain and the hospital has not gotten the pain controlled; do not allow them to discharge. Any other indications that might be evident, make sure they address them before discharging. After Brody’s appendectomy, he was still complaining of trouble breathing, the staff ignored this and I allowed discharge to occur without looking into it. He was admitted through ER less than 24 hrs later, a second time that week with what was diagnosed as pericarditis (inflammation of the sac around the heart) a very painful condition. This could have been caught sooner if I’d been a better advocate.
- Don’t allow yourself to be labeled a difficult parent. Communicate no matter how you may be viewed. When Brody was in the hospital the second time, they were getting him ready for discharge. I called his Cardiologist with my objections. The amount of pain he was in was not being controlled by the narcotic and they wanted to take it away to use only a stronger anti-inflammation drug for the remainder of his pain. He was not yet on this drug and I could foresee similar problems at home if it didn’t work. The nurse on duty didn’t like me much, it was Friday and they don’t like to keep patients on the weekend. I stuck to my guns and his Cardiologist agreed.
- The hospital is the best place for really ill kids. Within a few hours, my son was running a temperature of 103 and was vomiting–no longer just gagging and coughing. By 6AM his tongue was so large he could not hold it in his mouth. It was a dark purple and had white spots on it. I requested an IV for hydration, he was no longer drinking anything and looked very dehydrated. The nurse was not sure he needed it. The Hospitalist came in and found out he was now having pain in his throat (I thought he was still pointing to his chest, but the Dr. asked him if it hurt to swallow and he nodded). They ran another CT scan of the throat this time. His diagnosis was tonsilitis, adnoiditis and laryngitis; an advanced case. They began treating him with IV therapy and antibiotics.Although he didn’t really want to leave all the attention he was given, we left before anything else surfaced! We celebrated with pizza that evening. I caught him ‘having church’ in the basement later that evening, praising as only Brody can with his singing and dancing (no doubt!).
Hope this blesses you in some way and helps you in your own child’s illness. Don’t ever doubt your heart when your kids are hanging in the balance. Blessings.