G-Tube Revision and Tonsillectomy Recovery

posted in: Apollo, Special Needs | 27

Apollo is on day six of recovery from his g-tube revision and tonsillectomy (along with sleep endoscopy/bronchoscopy). It has been rough, my friends. g-tube after revision to remove scar tissueThe g-tube site is healing beautifully. On the left you can see just how big and ugly the scar tissue was around Apollo’s g-tube. The mic-key (the name of his specific type of tube) was constantly pushed downward from the scar tissue causing it to rub and bleed and build up even more scar tissue. The doctors kept telling me this scar tissue didn’t hurt Apollo…but we knew it did. Every time we would touch it or hook him up to feed him (after he was asleep) he would moan in pain. Interestingly, frustratingly, back in July the GI nurse and doc from Seattle Children’s insisted the scar tissue was just fine- no need to “fix” it. The surgeon two weeks ago took one look at it and said needed to be removed. In fact, he would have scheduled surgery to remove it even if Apollo’s wasn’t already having a his tonsils out. It is so frustrating when doctors look at the very same thing and give you two completely different answers.

As far as the tonsils, the recovery has been rough. Extremely rough. This weekend was the very worst with Apollo waking and crying inconsolably 30-40 minutes before I could give him more meds. I have been alternating between Tylenol and Ibuprofen every three hours around the clock (even setting my alarm at night) with oxycodone for “breakthrough” pain…and even that hasn’t been enough. Chuck was gone this weekend, so I was flying solo giving him his meds, waking every 2 1/2 hours and not being able to help him.

He took a couple of sips water yesterday. Up until then he has taken no liquids by mouth. If it weren’t for his g-tube we would still be in the hospital to keep him hydrated. Yesterday he took a three-hour nap and woke up happy and chipper (because of the tube I was able to give him his next dose of meds while he slept). I am really, really hoping that was a turning point for him. Last night was much better, but he still woke in pain before I could give him more medicine.

And the icing on the cake is, he smells like rotting flesh. Because he has rotting flesh in the back of his throat…

First day of school

And, of course, today is the first day of school for Mordecai and Avi! Sixth and third grade. Aren’t they adorable?

 

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27 Responses

  1. Praying for you all. When I worked for an ENT they always told patients day 7/8 Is the hardest day(s) and should be a quick uphill thereafter. personally I hope he’s already hit the worst of it and is on his way uphill. Prayers and hugs to you all.

  2. How is Tucker doing? You mentioned his anxiety regarding Apollo’s surgery.

    • bakersdozenandapolloxiv

      He is doing good…He is not totally cured now that the surgery is over, but he did well. I will be blogging about this soon.

  3. Does ice cream appeal to Apollo? Is he allowed any?

  4. Have you used G-tube pads? The pads are circular, made of soft, washable fabric and are placed between the tube and where the scar tissue developed. They help reduce friction and scarring. You can buy them, but you can also easily make them yourself.

    The level of pain he is experiencing could be another issue that needs to be investigated. I’m surprised they suggest Tylenol for such an amount of time due to the dangers it poses to the liver. Also, you may want to speak about long-lasting numbing sprays or liquid drops to coat his throat.

    Pain can cause a vicious cycle of fear, stress, inability to sleep(as you’ve seen).

    I’d talk to the doctor you have the most trust in and mention that Apollo’s pain has not improved, but seems worse. As for liquids, he won’t want to swallow until his pain is controlled. And it’s not, which is causing a set-back as you know.

    So, again:

    Tylenol: not helping, and concerns over possible liver damage.

    Pain med: Perhaps the Oxy is causing some of the stress and insomnia, it can have several side effects. Also, while Apollo is obviously not ‘addicted'(not a good word) his body however may have reached the point where it is no longer responding to the dose he is given. I’d talk about other options of pain med. Apollo needs to heal, a d an important aspects of healing is sleep.

    The problem also is, that any swallowing will be painful, even the swallowing of saliva that people are unaware they do every day.

    • Unless something is wrong with Apollo’s liver… the assumed dose of Tylenol he is on for weeks at a time is very safe. It takes a lot of tylenol and usually a compromised liver and or other meds for that to be a concern. I have a daughter who takes tylenol several times a day for leg pain due to various issues.
      I am thinking the opposite in regards to the oxycodone. I guess it depends on how much you are using it for “breakthrough”. As a nurse we define “breakthrough pain” as anytime the prescribed, around the clock, or first line of pain med has failed. For instance we have patients on Ext Release oxycontin and for “breakthrough” use oxycodone.

      It sounds like you need an alternate plan if he really isn’t being controlled much with tylenol and motrin. Maybe it’s a higher dose..or lower dose more frequently..more oxycodone…oxycodone on a schedule with the motrin and tylenol, a topical…of course he won’t be pain free, but this seems a bit on the high end as far as pain with his surgery.I would def call and try something else. Of course all the above is with consultation with Apollo’s Drs

      • also as you already know once he is in severe pain its almost impossible to get it back under control..hence the scheduled dosing

      • bakersdozenandapolloxiv

        We give him oxycodone any time he is crying in pain and it is too soon to give him tylenol or ibuprofen. Sometimes once day, sometimes 3. Today he is better. Not perfect, but definitely better than yesterday. Really hoping the worst is behind us.

    • bakersdozenandapolloxiv

      Yes, we used the pads daily until the scar tissue got so big we could no longer use them. Today was better, so I am hopeful we are through the worst of it. Believe me, if things stay the same or get any worse, I will be calling the doctor. I actually think the issue his his metabolism. He has had both a spinal and an epidural during his separate hears surgeries and neither one “took”. Pain is aways a HUGE issue for him after surgery, so we talked to his doctors about that specifically. He has also been drinking water today!

  5. Bless that sweet boy. He endures so much. Praying that you have turned the corner and things start to look better soon. I can only imagine how sleep deprived you are!
    And yes, they are cuties! ;). Hope they had a great day!!!

  6. I know nothing to help with the g tube, but with the tonsils…days 7-10 are the absolute worse in recovery. I would do more oxy for the pain because it is unbearable and watch for bleeding. After that time, it is going to like he flipped a switch and will be much much better! I had mine out at 35 years old and 3 weeks later my 6 yr old had them out. It was the same story for us both. I was licking the bottle of the liquid lortab by the time my 10 days was up. Chin up! I know you are tired, but you’ve got this and he will be so much better!

    BTW: the nasty smell and the black in this throat will also improve after the 10 day mark! I know that it gross…believe me.

    • bakersdozenandapolloxiv

      Today was better, so hopefully he hit his “worst” a little earlier (today is day 7).

  7. Julie Garrett

    I had my tonsils out as an adult and I felt pretty yucky for a good WEEK. Keeping hydrated had a HUGE impact on my overall well-being. When I thought I was hydrated, I wasn’t. Would adding extra fluids through the g-tube help? My doc actually recommended gatorade (not normally good for you) along with the water I needed to drink – don’t know if that would be helpful or appropriate for Apollo?

    Prayers for continued recovery and a good day at school 😀

    Julie

    • bakersdozenandapolloxiv

      I am giving him gatorade and water through his tube throughout the day.
      They had a great day at school!

      • Renee, I just remembered… as much as I love ice cream, what sounded best to me while I was recovering was warm and salty things – weird. Had a lot of home-made chicken noodle soup, thanks to my mom 😀 Don’t know if that’s something Apollo eats, but thought I’d mention it.

        Hurray for a good first day!

        Julie

  8. i wish i had answers or someway to help…but i do pray for Apollo and your family.
    yes Avi & Mordecai are very adorable! Happy school year to them both.

    • bakersdozenandapolloxiv

      Thank you, Vivian. He has been better today, so I am hoping the worst is behind us.

  9. Hope he feels better soon. I had mine out when I was 11 or 12. I remember one night trying to ride my doll’s cradle down the stairs to find my pain medicine. (Not sure if my mom remembers that or not, or even knew it happened). The only thing that really helped my throat pain was Popsicles. It sounds like it won’t be a very good option for Apollo, it did tend to hurt the first or second swallow then became soothing after that. I’ve heard humidifiers/vaporizers may help moisturize the back of the throat and be soothing.

  10. I hope Apollo is over the worst.

    I’m not sure how much they told you about the possibility of hemorrhaging from a tonsillectomy, but I’m going to tell you my experience, not to scare you but just so you know to watch (which I know you’re doing anyway). I had my T&A at 18 years old. They told me days 6-10 were most likely for hemorrhaging because that is when the scabs start to fall off and sometimes they come off too soon. Sure enough on recovery day 8 I started vomiting up huge clots and my mother could see red on the back of my throat. It became a nightmare when they couldn’t see the blood at the ER (an hour away) and sent us home, where I proceeded to start vomiting more clots and spitting out blood. By the time we made it back to the ER I had no pain meds left in my system. Despite the fact that we told ER staff this multiple times (we’d forgotten my meds in the rush to get back), and despite the fact that they made me wait two hours before they could find someone to cauterize my throat, it was done without any pain relief. The pain was at least as bad as natural childbirth. The doctor who did it was entirely unsympathetic. When it was over I was finally given morphine I was in so much pain, it took hours to get on top of it again. The experience remains the worst of any time I have dealt with the medical system, and this at a children’s hospital who claims to be in the country’s top 5.

    I know you watch Apollo very carefully, but please don’t stop. I hope his recovery remains free of complications.

  11. Oh I do hope he’s rounded the bend! And I wish I could be there to help out – it’s hard to handling it all, much less handling it all short one adult. 🙁

  12. Avi is looking so much older. I remember reading your blog when before she had even hit school age. Has it really been that long? Yikes.

  13. […] here we are, two years later. With the removal of his tonsils, he is eating better and growing more energetic by the day. I hope that two years from now his […]

  14. […] is learning to eat, but it is a painfully slow process. He had his first sandwich ever after his tonsillectomy last summer. Apollo had never been able any type of bread product (cookies, toast, muffins/cupcake) […]

  15. Just jumping in here — I know this post is old — but my tube fed child is getting a tonsillectomy next month, so I was trying to find other parents who could give some advice! All the parents I talk to about this talk about needing to give cool clear liquids, and keep the kids hydrated (in addition to staying on top of the pain and setting my clock to give middle of the night meds)

    ANYWAY– what do you do, how do you help the back of the mouth heal, when your child doesn’t TAKE much by mouth? He can drink through a straw, but straws are off limits after a tonsillectomy, right? And he sucks harder on a sippy cup than a straw and other than sips, he can’t really drink from a cup. So I’m worried that the back of his throat won’t stay moist enough for the healing.

    ALSO — he has other issues. He doesn’t have a nissen, thank goodness, if he did, he’d be wretching all the time — but he has a really easy time throwing up. He cries, gets extra phlem in the back of his throat, has a hard time catching his breath, and then throws up to give his lungs more space. I’m worried that he’ll do this too much while his tonsils are trying to heal and that will hurt the healing process. I have some hope that the removal of the tonsils will help with the drainage and other phlem issues, as well as oral adversion, difficulty swallowing, sleep apnea, failure to thrive, etc… so overall I think this is probably the best choice for him, but the recovery makes me nervous! Would love to hear your advice.

    • bakersdozenandapolloxiv

      I am glad you asked here! Apollo did not drink a single drop for FIVE DAYS after his tonsillectomy. Thankfully we could keep him hydrated and medicated through his tube. If not, he would have had to be in the hospital hooked up to an IV the entire time. The drs weren’t worried since he has the tube. I was afraid he would regress, but day six he started drinking, realized it was okay, and within a week was back to “normal”.

      I hope this helps. The recovery was rough, but within two weeks he was totally back to normal.

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