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Bad Tonsillectomy Experience Anyone???

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  • Bad Tonsillectomy Experience Anyone???

    Wasn't sure where to post this....but any of you out there have experience with Tonsillectomies from H... (a very bad place)?

    Our 7 year old son had a tonsillectomy on May 7th (he had already had his adenoids removed a year ago), did pretty good through it, but then ended up admitted back into the hospital due to dehydration 4 days later (on Mothers Day) for a couple days. We simply could not keep him hydrated enough due to the pain of swallowing. (And yes, we tried everything liquid and melty out there -- popsicles, jello, jello jigglers, juice, gatorade, fruity drinks, flavored milks, ice cream, ice cream bars, shakes, etc.). They tell us that because his tonsils were "whoppers" it may be the reason he experienced such pain / the "adult version" of a tonsillectomy. While in the hospital, in the middle of the second night, he developed what initially felt like severe "itching" sensations in his ears. Within a day or two it turned into severe "stinging" sensations in his ears. Any time he would swallow, he would have sudden, severe, but thankfully brief (1 to 10 minutes) episodes of stinging in his ears. (Almost as if there is a leak between his throat and his Eustachian tubes.) When the stinging pain comes on, he grabs our hands and pushes them onto his ears as hard as he can. It's awful to see him suffer like this. He is not one to complain of pain; in fact, he will normally fib about pain because he fears medical intervention.

    The Tylenol with Codeine was the worst! Even the regular liquid children's Tylenol and Colace were bad, but not as severe as the Tylenol with Codeine. Now that the THROAT pain is subsiding some, and he is able to eat some mushy foods, we're realizing that he doesn't get this stinging in his ears as MUCH when swallowing FOOD. It's now USUALLY only with liquid. So it continues to be a challenge to keep him hydrated. The ENTs felt like the Tylenol with Codeine should help the "referred ear pain," and felt we should continue giving it. We weren't effective in convincing them that it causes the initial stinging. We finally stopped giving it to him, as we couldn't stand the shrieking in pain every four hours when he took it, in addition to the agony each time he has to swallow liquid.

    I know he still has swelling, as his speech is still really messed up as if something is not closing properly back there (airy, hyper-nasal, and difficult to understand). And before discharging him, they tried to give him a one-time dose of a steroid as an anti-inflammatory to help the swelling go down for a few days. However, after the nurse set it up in the IV and left the room, a couple minutes later we realized his IV had blown, and the medicine was leaking down his arm, gown, mattress, and onto the floor. I didn't think fast enough to kink the tubing to make it stop, so by the time the nurse returned to shut off the pump, he likely got less than half -- IF that. Without knowing exactly how much, she obviously couldn't give him any more / risk OD-ing him.

    Sorry to be so long. But this is taking its toll, and I'm desperate for any advice or suggestions on what I can do to help him. Hopefully his ears will be ok to fly in 10 more days so that we can see you all at the conference!

    I'm putting another call into the ENT in the morning, but I thought I would seek input from anyone with experience or advice. We'd appreciate any thoughts.

    Thanks much!
    Theresa
    Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

  • #2
    Re: Bad Tonsillectomy Experience Anyone???

    One comment, Theresa -- the eustachian tubes [I]do[/] open onto the throat, so it's no surprise that swallowing can be associated with ear pain. I don't know why he was having the particular symptoms you describe, but if the eustachian tubes get clogged (most often from colds or flu, but lots of other things can cause this) there can be a lot of ear pain, which may be affected by swallowing.

    Gordon
    Myectomy on Feb. 5, 2007.

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    • #3
      Re: Bad Tonsillectomy Experience Anyone???

      With our son, he refused the medicine, so we ended up with tylenol suppositories. But he did not have any of the other complications you mentioned. We were able to keep him hydrated. He was 5 at the time.

      Sounds like your hospital experience was not that good. Sorry to hear that.

      I know when Felix has his out, it took him a good 10 days. he also had issues with liquids coming thru his nose at times.

      hope things get better soon.

      sandy

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      • #4
        Re: Bad Tonsillectomy Experience Anyone???

        I wonder if his tonsils were so big, if they may have at least partially blocked the eustacian tubes for so long and now that everything is clear in there he hates the sensation of a "normal" swallowing action. The tylenol suppositories are great when you can't get them to take liquid meds. Please let us know what your ENT says.
        Reenie

        ****************
        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.

        Comment


        • #5
          Re: Bad Tonsillectomy Experience Anyone???

          Thanks much guys, for your responses. I wonder the same thing about the size of the tonsils and it's effect on the eustachian tubes. Reenie, didn't your daughter just have a tonsillectomy last year? Was hers also at St. Louis Children's? And yes, Sandy, he also has the liquid coming through the nose -- about every other drink.

          And I wouldn't say our hospital experience was horrible; it was definitely "no Cleveland Clinic," but it wasn't horrible. There were some very frustrating things. (i.e. the on-call ENT telling me over the phone to just keep pushing fluids -- that he wasn't dehydrated if he still had tears when he cried! No, I'd rather not wait and then him be put into ICU, thanks; and things like them coming in at 4am and telling me they wanted to 'straight cath him because they didn't feel his output was enough based on his IV intake.' WHAT?!?!?!? I refused that unless they first did a bladder scan to see if there was anything in there to release. It wasn't necessary -- duh! -- his body was using the fluids for maintenance and replenishment --hello! -- did I mention he's dehydrated!?!) Ok, sorry, I could go on, but I'll stop; just a little venting there. I'm grateful that he's doing better and that part is behind us. Now to get this stinging ear pain figured out....

          I'm still waiting to hear back from the ENT's office this morning. Will let you know.

          Thanks again!
          Theresa
          Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

          Comment


          • #6
            Re: Bad Tonsillectomy Experience Anyone???

            Hi Theresa. Wow, you have a good memory. My daughter did have her tonsils out last April, at age 15. She had it done in Quincy, IL, not at St. Louis Children's. She was in considerable pain for quite a while too, but that was expected since she was an adult for all intents and purposes. She didn't have the same ear pain you're describing, although she did have some ear pain. I think it took about a week and a half for her to start eating soft foods again. Hers were taken out because of recurrent problems with strep. She would get strep throat about twice a year for the past 10 years. Luckily she hasn't had any strep since.

            I really hope you get some answers soon. I hate when the little guys are sick. He'll be in my thoughts and prayers. *hugs*
            Reenie

            ****************
            Husband has HCM.
            3 kids - ages 23, 21, & 19. All presently clear of HCM.

            Comment


            • #7
              Re: Bad Tonsillectomy Experience Anyone???

              I just remember saying a prayer for her, Reenie, as we had been corresponding about something else at that time.

              The ENT office called back. I can't seem to convince them that maybe this isn't "referred" ear pain; maybe it really is something to do with the ears or at least the eustachian tubes. The nurse is going to check with our ENT to see if my son can have Ibuprofen (usually not given with tonsillectomies due to the increased risk of bleeding). I told her I doubt that would be helpful since even the Tylenol with Codeine didn't do anything for the stinging pain in his ears each time he swallowed and actually was the worst when he had to swallow the actual (alcohol based) med. He is already over the other pain in his throat and swallows mushy food fine. I guess I am willing to try it; I'll try almost anything at this point. I asked if Ibuprofen was really that strong of an anti-inflammatory that they would use it to help the swelling go down. She responded that it would be for pain, as the swelling shouldn't be a problem anymore since he is 12 days out.....Then why is his speech still so messed up and why is liquid still coming through his nose.....???? Anybody besides me think that they should be wanting to take a look at him, or is it the overprotective mom in me?

              I'll keep you updated.

              Thanks for any ideas or advice.
              Theresa
              Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

              Comment


              • #8
                Re: Bad Tonsillectomy Experience Anyone???

                I think you are right to want him rechecked, insist or even demand if that's what it takes. As his mother, you know when things aren't right. Good luck, we'll watch for updates - Linda

                Comment


                • #9
                  Re: Bad Tonsillectomy Experience Anyone???

                  I agree with Linda. Make an appointment with the ENT for this week and see what they have to say once they've seen him.
                  Reenie

                  ****************
                  Husband has HCM.
                  3 kids - ages 23, 21, & 19. All presently clear of HCM.

                  Comment


                  • #10
                    Re: Bad Tonsillectomy Experience Anyone???

                    Well, by the time I heard back this afternoon, Ian seemed to be doing alot better with drinking, MIRACULOUSLY! So I didn't insist on him being seen today. They told me to give him the Ibuprofen, as it is not alcohol-based so shouldn't irritate his throat/ears like the other meds. I waited it out and didn't give it to him at all, and he seems fine. If I had known all it would take was a phone call I would have done it again last week. He had been getting gradually better with everything, but this seems to have stopped as suddenly as it began. However, if he has anymore episodes, I do plan to bring him in. Thanks for your responses and advice!
                    Theresa
                    Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                    Comment


                    • #11
                      Re: Bad Tonsillectomy Experience Anyone???

                      I'm really happy he's doing better. I'll continue the good healing thoughts.
                      Reenie

                      ****************
                      Husband has HCM.
                      3 kids - ages 23, 21, & 19. All presently clear of HCM.

                      Comment


                      • #12
                        Re: Bad Tonsillectomy Experience Anyone???

                        Thanks so much! Ian continues to do great today. I'm amazed and grateful!
                        Theresa
                        P.S. How many posts do I need to get to the next level? -- I don't like this "Barely Heart" title. Well, it's the "Barely" that I don't really care for
                        Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

                        Comment


                        • #13
                          Re: Bad Tonsillectomy Experience Anyone???

                          Hm, I'm sorry but I forgot how the breakdown of the titles go. Maybe at 400?

                          I'm so relieved (as I'm sure you are!) that Ian's doing so much better. Those little guys are so resilient but when something gets them down sometimes it takes a little time for the rebound to happen. I'm glad to hear he's mending just fine now.
                          Reenie

                          ****************
                          Husband has HCM.
                          3 kids - ages 23, 21, & 19. All presently clear of HCM.

                          Comment

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