When a G-Tube Falls Out

posted in: Apollo | 25

{All photos in this post taken with my iPhone}

when a g-tube falls outTo say Friday did not go as planned would be a massive understatement. Friday was Apollo’s pre-op appointment for his upcoming bronchoscopy/sleep endoscopy/tonsillectomy. It should have been a breeze…such a breeze that Chuck and I made plans to meet  up with some new friends who live in Seattle. Plan A was to leave early and head to the zoo to hang out (Molly and Eric have eight kiddos). The first change in plans  occurred when Chuck had a morning meeting at work, so we left later than we planned…then we got caught up in traffic…and it was raining. We finally arrived in Seattle with only 30 minutes to hang out before the appointment. Molly took it all in stride, and offered to stay at the park with the kids while we went to our appointment. Mordecai and Avi chose to come with us and play in the sibling play room, and Tucker came along due to his anxiety. That left Molly with fourteen kids…her eight and six of ours.

when a g-tube falls outThe pre-op went well. The nurse knew Apollo’s history well, including his horrible experience with anesthesia last time when the anesthesiologist made a note that he was an “unhappy” child and needed versed and any other comfort measures available. The purpose of the visit was to make sure Apollo is healthy enough to withstand surgery (which he is) and to go over any special considerations. After that, the nurse sent in someone from Child Life to work with Apollo…who unfortunately was asleep by then. She did get to talk to Tucker a bit, which was really great. Then she brought in a little medical kit to help Apollo get used to some of the items used…he woke up shortly after she left and the boys got to explore with their new tools.

when a g-tube falls out

Chuck and I were exchanging glances, thinking how great this was for them…such good therapy for both…when will I ever learn that just when I think things are going well I really, really need to brace myself for the upcoming storm?

At the end of our appointment Chuck asked the nurse if someone could look at Apollo’s g-tube. She made a few calls and ended up sending us to the GI clinic. Apollo has been having trouble with his g-tube all summer.

{Click here to see a mic-key (g-tube) image, so you understand what I am describing}

July 10th he saw a doctor about the scar tissue around his stoma. He has built up so much that the tube is pushed down at an angle. The doctor on that day took out the old tube and replaced it with a new one. He added 10 mls of water to the ballon rather than the 3-5 mls we usually add. It began hurting Apollo immediately. In fact, I paused in the parking lot and almost took him back in…but then he seemed okay. The super tight g-tube irritated him and became red and raw again. I added KY jelly daily as the doctor instructed. August 9th he developed a full-blown infection and a week later a fungal infection from the antibiotics. He has an appointment with his GI doctor August 22nd, but a few weeks is a long time with a raw irritated body part. It has been bothering him so much that touching it at night to feed him causes him to whimper and sometimes even wake up. We were thrilled when he was going to be seen in the GI clinic.

After a short wait, a nurse, resident and student came in. The resident looked at Apollo’s stoma and scar tissue. Both he and the nurse said they thought it should be surgically removed. We discussed seeing if we could coordinate having the tissue removed while he is under anesthesia for his other procedures. When the resident heard how much water the doctor in Everett had put in the tube, he decided to check and see how much was left in it. This, of course, upset Apollo, because it is very sore. He was screaming and I glanced over to see Tucker with his hands over his ears, eyes squeezed shut tightly, bent over, trying to escape the screaming. I quickly suggested he wait out in the hall, which he did.

The doctor had trouble getting water out of the balloon…in the end he was only able to remove 2.5 mls. He was confused by his inability to remove more. I asked him if the tube was secure (after he removed the water). “It’s not going to come out?” I asked. He assured me it was fine. A few minutes later, as we were getting ready to leave, Chuck asked, “Are you going to replace the water you removed?” and he said no, since he was only able to remove 2.5 mls anyway.

We rushed down to the playroom to pick up Mordecai and Avi. Apollo was very sad that he didn’t get to play in the playroom, since it was closing. We left the hospital at 4 o’clock and arrived back at the park a full 3.5 hours after we left Molly with the kids. She had fed them all lunch and they were still going strong and having a grand old time. We were in the park for about 15 minutes when Chuck took Apollo to the bathroom. He came back with Apollo inthe stroller and said, “Renee, can you come and look at something“. I walked over and saw a bit of blood soaked through the outside of his shirt. Then he lifted it up to reveal a puffy, red stoma with no g-tube in it. Just a hole in Apollo’s stomach. When a g-tube falls out, it needs to be replaced as soon as possible. Stomas close very, very quickly (they can close completely within a few hours). To add to it, his was already inflamed. We told Molly we needed to head back to Seattle Children’s Hospital…this time to the ER. In less than five minutes we had 18 kids loaded up into two full-size vans, heading to Molly’s house. We dropped off the kids, including a sobbing Tucker. We had to leave him this time, because we knew whatever happened at the ER was going to be painful…

{I replace Apollo’s g-tube every three months at home. We didn’t attempt to replace it this time, however, because of the irritation and inflamation and we were so close the the hospital we had just left.}

when a g-tube falls out

 

I won’t go into all the details…we were seen quickly in the ER. After a short discussion about whether to dialate the opening or just try to force the new tube it, the doctor decided to just try to put it in. Apollo was pinned down and the tube shoved back in. It took much more force that Chuck and I (as parents) would have ever used on it.  It was very, very painful. He screamed and cried and was hysterical. Once the tube was in, the doctor and nurse left us so he could calm down. I told the doctor after what happened I needed to be totally confident that it wouldn’t fall out before we were sent home. First we needed to make sure the tube was placed in his stomach (they pulled out stomach juices) and that it was functioning (we put in pedialyte and made sure he could keep it down). Finally two hours laters, we headed back to Molly’s house.

when a g-tube falls out

You know you’re in Seattle when there is a Starbucks in the ER waiting room…

In the meantime, she had fed the kids and they were still playing happily eight hours after meeting in the park. When we arrived back at Molly’s house, her husband Eric, who is a foot surgeon, told us Avi had an ingrown toenail. So before we left Seattle, he took Chuck and Avi to his office and removed the ingrown nail. Oh yes he did.

when a g-tube falls out

And finally, finally, we left Seattle shortly after 10 PM to start our two hour drive home.

I can tell you this, never, ever will a resident  touch Apollo’s g-tube again. I realize doctors need to learn, but they have learned enough on Apollo. To clarify what happened: the resident accidentally removed all of the water from the balloon in his mic-key causing it to fall out at some point. Chuck and I both questioned the resident about whether or not it would be okay, and were assured it would be fine. Only it wasn’t. And his mistake caused Apollo more suffering and gave him another horrible experience at the hospital and more trauma to his tube.

 

Facebook Comments

25 Responses

  1. Oh Renee! I’m so sorry. As a physician in training, I can relate to the mistake the resident made and I sure hope someone told him he screwed up. The agony of knowing that we’ve caused harm to any patient is usually enough to make sure that doesn’t ever happen again. As a mama, I also totally “get” not wanting residents to touch your kiddo anymore. As hypocritical as it sounds, I’m extra cautious around young physicians because I worry about mistakes from inexperience (my own included). That said, medicine is an imperfect art and I’ve seen seasoned old pros make mistakes too. I pray that the rest of your experiences over this next intervention will be better than the previous ones.

    • bakersdozenandapolloxiv

      Aurora I’ve followed you on Instagram for a couple of years now, and seeing you and your husband in training (in some strange way) has been healing to me…I know even seasoned doctors make mistakes. The attending during Apollo’s stay in Texas came and apologized to me and admitted that when I told her (repeatedly) that Apollo was tube fed four times a day, she got mixed up and thought I meant “every four hours”. As a result he was overfed (day after day) and continued to vomit, until I finally put my foot down and refused to let a resident hook him up for yet another feeding…I get that. But he suffered needlessly, AGAIN over a dumb mistake…I certainly hope this means he will never make that mistake again.

  2. Oh how awful. Sounds a very traumatic experience for you all. I hope he is feeling much better and it doesn’t happen again x

  3. The resident thing is also very hard for me too. We recently went to the ER to get Noah stitched up on his face. The resident came in and was going to do it. Brad stood there and watched the whole time. As did another attending who walked in and out. I felt like I was going to ask just for the attending to do it but I thought my husband would’ve spoke up if he thought this dr wasn’t capable. Luckily we had a great outcome but I was so nervous.
    Even at a teaching hospital you have every right to refuse a resident though. I even asked the resident what year he was in. He was already a third-year which is his last year in emergency medicine so that made me feel more comfortable too.

    About the water in the tube. How in the world did all that water get leaked out. Is it just from you and Chuck deflating and inflating it? I’m just curious where all the water went. If they have an answer for that. Or maybe I misunderstood and that water was added a while ago and since been replaced with a smaller volume.
    Okay the silver lining in all this is your new friend Molly. She rocks. I can’t imagine going to meet a new friend and then have them stay with them for eight hours. Plus her husband offering to take care of Avi’s toe. That’s amazing.
    So sorry you have to go through all of this Renée. I’ll keep praying for all of you guys especially Apollo and Tucker.

    • bakersdozenandapolloxiv

      Liz- we have no idea what happened to the water. Chuck and I didn’t do anything to it after the doctor filled it with 10 mls in July. Maybe it had a hole and leaked? We won’t know, because we have no idea when or where it fell out. Chuck says the resident should have called in an attending when he couldn’t draw water out of the balloon. It could have be so much worse, if we had driven home (for two hours) and not noticed it was out 🙁 But the pain he suffered…it’s hard to get past that.

  4. Cecily spencer

    I’m so sorry. Does the site look any better? Are they going to be able to coordinate the procedure?

    • bakersdozenandapolloxiv

      It *does* look better this morning! I hope they can remove it while he is under on the 27th, but we won’t know until next week.

  5. My daughter Hailee is 18 years old and has cerebral palsy. She had a g-tub inserted at the age of two because of reflex problems and not gaining any weight. We have had are ups and downs with it over the years. Two years ago we decided to try using polysporine on it every night and use two make up pads cut in y shape to put around it. This has helped so much over time. The area has only some pink around it. Hailee is much happier know. Before we had a hard time getting her to let us clean the area and feed her. I don’t know if you ever tried this but it really helped with Hailee. Hope things improve soon. I know it’s not easy on you seeing him suffer. Take care.

  6. No words- just prayers. I am so sorry. You are auch troopers!!!

  7. I’m just horrified at this. I know doctors are people and imperfect because we all are, but sometimes it’s super hard to reconcile it.
    I hope they can remove the scar tissue while doing the other surgery rather than having to do a separate thing later.
    I can only imagine how awful it must have been to have to listen and hold down your kiddo for that. And the pain for Apollo. It just breaks my heart.
    I hope someone went and told that resident.
    I agree with Chuck. When he got FAR less than expected from the tube, he should have gotten an attending to double check all was fine. When things aren’t as expected, probably safe to get a second opinion. Especially with a chronically ill child. He probably thought you guys were mistaken about the amount pushed in. Because what do parents know?

  8. I’ve come to love your little Apollo, and all of his family, from getting to know them through your blog. What your little boy has to endure is just so unfair. But yours and Chuck’s advocacy and steadfastness have brought him a very long way, and your faithfulness to serving our Lord.
    This is likely not new information for you, but when dealing with a teaching hospital (which I am very thankful is where Apollo is being treated), remember the date of July 1. That is the big day where everyone up and down the medical chain gets a promotion, and new job descriptions. The intern was last week a medical student. The junior resident was last week an intern. Over the years, many studies have shown the risk to patients when coming to the teaching hospital during the month of July. Come spring, everyone will be functioning at a much higher level, waiting until summer to shift again.
    And don’t forget those wonderful ER nurses bringing years and years of experience to the table. They are a major part of the teaching team, as well.
    I will pray for Apollo and your family through his next procedure. Trust your own advocacy and instincts (which you do very well I think)!

  9. sorry to hear Apollo had to go thru another painful thing. praying he will feel better soon.

  10. Having a tube come out is every tubie parent nightmare. Ugh, residents! Water can come out merely through seepage through the walls of the balloon. If you can’t draw out water, it’s probably because there isn’t any in there. He needed to be sure there was 5ml at least in there. The nurse should have known that. The longer I do this, the more assertive I get, especially when it comes to the daily care stuff. Most doctors are wonderful, buy even the wonderful ones have never done the daily care stuff so it is my area of expertise, not theirs. Given it is usually dealt with in the ER this resident has possibly never encountered dilating a stoma for reinsertion and thought he was saving Apollo trauma by not going near his button again. I imagine you were feeling furious and raw by the end of that day. I know that feeling too well <3 It's a sucky road sometimes for all of us.

  11. My heart goes out to you my friend. I just want to slap that resident. When Josiah broke his leg and they were trying to give him an IV after we asked for oral meds because he is such a hard poke I told the nurse (who was unable to get it) she is only able to try again if she was willing to give me a needle so I can poke her if she takes to long. I wish we (parents of medically needy children) were shown a bit more respect. I’m sure you could have taught the resident a few things about G-tubes because undoubtedly you have way more experience then he does. So sorry he had to go through with that (and you)!

  12. So sorry Apollo (and you and your family of course) had to deal with this. He has *enough* to cope with without the people that are supposed to be helping him making it worse. 🙁

  13. Tanya Redfield

    I’m so sorry you had to go through all this. I’ve had a few bad experiences with residents and completely understand where you’re coming from. I am sympathetic to their need to learn, and also understand that anyone can make mistakes, but after a couple bad experiences, especially with your kids, you’re just DONE. Good for you for advocating for Apollo! I still regret leaving our first son, because we were young and did as we were told, overnight in a hospital alone…they assured us he’d be fine and they would call us if anything changed.
    When we got there at 6 the next morning a nurse took us aside to tell us that the doctor had been called in in the night when his temp spiked to nearly 107, and he’d had an ice bath, and to top it off a night nurse left him lay on a bed without the rails up and our 2 year old son fell out. We wouldn’t have known any of that without that nurse “tattling”. I’ll never leave a vulnerable loved one alone in a hospital again!

  14. Elizabeth

    Praise God for good friends and so sorry for the trauma!

  15. I’m just an echo here–but my doctor friends all tell me, especially when I go home to New York in the summer, “Don’t get sick in July! Never go to a hospital in July!” Because that’s when the newbies arrive. Much safer to get sick in December, when they’re seasoned . . .

    • bakersdozenandapolloxiv

      Yes, our doctor friend told us that…after our little misadventure.

  16. […] face could be the poster child for messed up medical care, medial record errors, missed diagnoses and unneeded […]

  17. […] was somewhat redeemed by a lovely visit with some of my favorite people. You know, the family who: watched our children for 10 hours, fed them two meals and preformed minor surgery on Avi. All in the… Technically, I had met Molly once before, but this was the first time our families met. Molly and […]

  18. […] for the first time last summer (I had met Molly previously). You might remember this family from when Apollo’s g-tube fell out last […]

  19. […] Pre-op went smoothly and on to our friends we traveled. It was fun to catch up with Molly and her kids.  You might remember Molly. I photographed her newborn baby and gorgeous children last year. You might also remember the first time we ever went to her house, we had a medical emergency and she ended up watching our kids for eight hours, making everyone dinner and then her husband did minor surgery on …  […]

  20. […] I finally contacted my dear friend Molly. You might remember her. From the infamous G-tube/Ingrown Toenail Disaster to Fish Puke, she’s always there to help with a smile. I adore Molly and her family…I […]

Please share your thoughts!