My Tube Fed Toddler

posted in: Apollo, Special Needs | 42

Prepare yourself for a cuteness overload. Since I have posted in a few days I’m going to just assume that you are dying to see photos of Apollo.

I am going to blog about the actual surgery later, for now, enjoy a little update.

These photos were taken two days post-surgery. He is being tube-fed as he eats his lunch. Talk about multi-tasking! We had friends (with a formerly tube-fed toddler) over to give us some tips. Kara commented that she didn’t think she’d ever seen Apollo eat without crying or be relaxed during a meal.

Apollo is still in a fair amount of pain. He cries every time I change a diaper, touch the tube, carry him, etc. ย He is also very scared to have it touched. He is just taking Tylenol for the pain and once the three and a half hour mark rolls around he’s hurting. But in between is happy and playing.

Warning: Looking at the following pictures may make you want to have a cute toddler of your own, and/or change your mental picture of congenital heart defects and tube fed children.ย 

Here Apollo is playing while he’s being fed. Right now each feed takes 45 minutes (and he’s only getting 30 ml…a little over an ounce!) When we were giving him 40 ml he was bloated and in pain afterward. We will increase the amount he is given every 2-3 days as he tolerates it.

Apollo’s pump can be placed in a little backpack and transported around the house.

He has eight inches of tubing sticking out of his stomach, with a huge port attached to the end. Seriously, the thing is ridiculously big. We ordered a belly band (to keep it up against his body) and a friend brought a few over, but right now his stomach is too tender to use them. No running around shirtless this summer…

In three months, this tube will be replaced with a smaller version that does not have the eight inches of tubing connected or the giant port.

Doesn’t he look healthy and beautiful in this photo? You’d never guess his anatomy is all mixed up…

Questions?

 

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42 Responses

  1. My step-dad has had a g-tube for about 12 years due to throat cancer. They do have one that’s called a button. It’s just a small thing and is pretty much flush with the skin (or pretty close). Yeah, it’s another procedure later down the road but it’s something to consider. I’m still praying for you guys!

    • bakersdozenandapolloxiv

      He’ll be getting a mic-key in three months.

  2. Yes, questions. Is it like a heparin lock, so sort of like a full time IV? You just hook up so you dont have to poke/restart each time? So there is a port in his belly? Will you take a picture of it? Or is that too personal… When I was a kid I helped my mom with hospice, I mean I just went along but I was able to hand things to her and “take” vitals. I saw a lot of people with feeding tubes, but cant remember exactly what it looks like. Why cant he start out with the smaller one? How many times a day does he eat? How long will he have hurt? Is he sleeping better, possibly from being more full? He looks so good, more healthy than he has looked in many many months. I am sorry he has to have this intervention, but so glad that technology has a way to help Apollo fill up.

    • I can tell you it;s kinda like a heplock..but not really. it’s in his stomach or bowell not a vein…so no they can’t restart it. Yes they sometimes get pulled out. Hopefully not. It will be sore for awhile. Usually patients are on a continuous feeding at night or just bolus feedings like Apollo where they are not continuously connected.

      Yes there is a sort of port. Like the heplock you are envisioning only longer and much bigger in diameter. It also needs to be flushed as not to get clogged either with water or normal saline.

      sorry to jump in and answer…:) Just an RN trying to get you some in the meantime answers.

      • Thank you for your answers! I am excited that Apollo may finally feel better, but am also very curious about medical stuff.

    • bakersdozenandapolloxiv

      Jo, I don’t know what a heparin lock is, so I’ll defer to Liz there ๐Ÿ™‚ The tube is always in his stomach and there is a little plastic lock on it. And when I forget to lock it (like I did yesterday) I spill stomach juices on the couch. Ew. I will definitely take pictures but he is so scared of having it messed with right now, I’m respecting his space. And yes, when I do get pictures, I’ll post them. I have no idea why they start with this and switch out, but it’s standard procedure, so I’m sure there’s a reason. Most people are telling me to expect him to be in pain for a week or so. He slept 4 hours last night! If he starts sleeping through the night we can just feed him then and do away with the day time feeds!

      • Once Apollo’s gastrostomy site is well-healed and the tract is developed it is possible to switch to a skin level feeding device. These devices are commonly called “buttons.” There are several types of buttons. The most common are the Button made by Bard and the MIC-Key made by Medical Innovations Corporation. The change to a button can be done once the tube has been in place for a minimum of 8 weeks.

        Have they talked to you about “burping the tube” to let air out so maybe he is not as bloated?

        A “hep lock” is when you have had an IV (intravenous infusion) going and then they d/c it and leave that little piece in and tape it up …”just in case” or maybe for intermittent infusions like antibiotics. I’m sure Apollo had one in hospital.

        However…We don’t call them “hep locks” anymore as we do not flush with heparin now only saline…now they are supposed to be referred to as IID (intermittent infusion devices)…so boring..lol..many old school medical peeps still call them “hep locks”

  3. “Kara commented that she didnโ€™t think sheโ€™d ever seen Apollo eat without crying or be relaxed during a meal.” – This made me cry. Do you think it’s because he’s not starving now? And writing “starving” in relation to a child kills me. I can only imagine the relief you and your family feel knowing your little one is not hungry anymore.

  4. Emily from NZ

    Cuteness overload! I especially love the monkey t shirt and suspenders!
    Does Apollo understand much of whats happening?
    Will Apollo be allowed to go swimming with the tube? How does bath time work? (I’m assuming that the tube can be closed off, but is there a potential for bacteria to get in?)

    • bakersdozenandapolloxiv

      He knew he was having a tube put in his stomach, but I don’t think he understands why. Yes, he will be allowed to swim. He hasn’t had a full bath since surgery (he’s in pain and I don’t want to exasperate things) but we were given no special instructions, so I guess I can just bath him. The tube is plugged and locked, so I don’t think that’s a concern.

      • Usually it takes awhile before they can be bathed..submerged in water that is….is there a stitch in it? Usually you would have to wait for it to be switched over. I would clarify that. Oh and those stomach juices….not good for carpet….awful for skin…it’s like acid. I had a colostomy bag for 4 months once and my skin NEVER healed…it was awful…praying Apollo’s site heals. i know Brad my (husband who is an ER Dr) sees patients all the time who come in thinking their tube is infected….it usually is just raw and irritated…it’s just so hard to keep clean/dry and all unless it heals up real good. The position itself lends to many challenges…

  5. So glad to see that he is doing well! I can only imagine how hard it must be. Hopefully he will be able to gain weight now ๐Ÿ™‚
    Like some of the other commenters my questions mainly regard hygiene, bathing/swimming, cleaning the tube etc. Also what about him fiddling with it? Is there a risk of it being pulled out.
    thanks

    • bakersdozenandapolloxiv

      I have to clean around the incision 4 times a day right now, which is killing me. It hurts him so bad. If he fiddles with it, it hurts, so that is a natural reminder not to touch. He has opened the plug, but since the tubing is “locked” with a piece of plastic when he’s not feeding, it doesn’t do much. If it gets pulled out, we have to rush to the hospital to have it replaced immediately…once he has the smaller tube (in 3 months) we’ll be replacing that ourselves every three months anyway.

      • Hi there, I just stumbled upon your blog recently.
        My son has had a mickey button for 2 years now (hopefully coming out this summer).
        your son is beautiful,and I know he will do well with the tube, it’s just hard to see little ones suffering!!
        Please, please guard that tube with your life the first few months. My son pulled his out 3 days after surgery and he had to have a second surgery to replace it, it grew shut that quickly!! It was truly awful because my son has horrible anesthesia reactions and we had to go through that twice in one week. ugggh!

        • bakersdozenandapolloxiv

          Ugh, Amy, so sorry to hear that! Yes, I am guarding it as much as humanly possible…I feel like I am counting the days (and yet dreading the day) until it gets replaced.

  6. he looks so good and happy

  7. Danielle

    When my little guy was on an NG tube, we mixed probiotics with his formula and other tube feeds. It really helped his digestion and boosted his immune system. We bought a powdered kind at our whole foods that was made for children but your homeopathic doctor might be able to recommend the best thing for Apollo.

    Eventually the pump was annoying for my son and we would do a slow manual push of the feed (60 mL or something) at a time with a giant plastic syringe. I also tube fed him a lot while he was resting in the stroller and I pushed him around.

    • bakersdozenandapolloxiv

      I plan to add in probiotics! Right now I’m just trying to get used to the tube feedings.

  8. Marianne

    Thank you Jesus !……he looks precious.

  9. You’re right. He’s absolutely adorable.

  10. So cute! Can’t wait to see him pack some chub on and start growing!

  11. Does he really eat food while getting the tube feeding? That may be why he is bloated. Unless they told you to do it that way maybe you could try it inbetween meals? I have had so many TPN(PICC line) fed patients and tube fed patients. It can be bloating. Esp with all the sugars etc…..He could prob still go shirtless….just have a band around it…or like a sticky ace wrap….our kids never go shirtless just because of modesty or skin cancer risks….we just use a rash guard. If he is getting wet alot maybe just use one of those…

    It is a very sore thing…I hope it gets better…So many I have seen in the hospital look so red and sore….It’s not like a PICC or IID that you have taped down…even though it’s probably sutured it still wiggles a bit….hopefully his makes a nice scab or heals around it..

    He could give our Noah a run for his money in looks…..Those curls….LOVE em…Noah’s are black and so shiny. It’s humid here so they are super curly with that and his first haircut a 2 months ago..

    Praying for you all.

    • bakersdozenandapolloxiv

      Liz, when his stomach was bloated, he wasn’t eating, just sitting on my lap. In hindsight, I think it was just his stomach not used to being tube fed (that was only day one of using the tube). We have now moved up to 35 ml and he is doing great. We will increase by 5 ml every two days until he is at the recommended amount.

      And yes, shirtless, but with a band. I was hoping take some photos out back like the ones of Hezekiah on the log, but I guess it will have to wait a year or until fall when he has his mic-key put in.

  12. I am so happy for y’all right now. Really, I feel you’re at peace and that makes me at peace. This is the beginning of him getting healthier for the rest of his life. I just can feel it! Being that cute should be illegal. What a precious gift. I am happy to see that he can eat thorugh his mouth as well.
    The only question I would have is about bathing and swimming. Oh yeah, how often is he fed and how much time will this take in your day?
    We are still praying for you here. The Lord is good and His mercies will help you.

    Susan

    • bakersdozenandapolloxiv

      Right now I am feeding him 4 times a day for 45 minutes. With set up and clean up, I am logging four hours a day just tube feeding him. If he will start sleeping at night, we can feed him then instead. I think I already answered about swimming and baths in the prior comments.

  13. Can I keep him? You did say to ask questions. And the pictures DO make me want a toddler. Unfortunately that’s unlikely as I have a) not found a husband to have one with and b) not so keen on having a teenager! (OK, obviously if they were sensible and lovely like yours, yes. But if they were like many teens I’ve known….they aren’t quite as cute as toddlers.)

    • bakersdozenandapolloxiv

      Sorry, just looking , no keeping ๐Ÿ™‚

  14. Alexandra

    Oh my, you can see such a difference in the look on his face here from the picture you posted of him a year ago. He’s certainly been through the ringer from medical trauma in the past few months, but his smile this year shows how the underlying problem has been repaired, as much as possible. It must feel good to have finally figured it out.

    • bakersdozenandapolloxiv

      Yes, in last year’s picture it’s like he’s begging someone to help him.

  15. is he still nursing? has the sleeping improved or the breathing?

    • bakersdozenandapolloxiv

      Yes, he is nursing, but I really want to wean him. He slept 4 hours straight last night…I’m hoping that will continue. He does have mild sleep apnea though. His breathing is complicated. The noise is MUCH better but he still gets very out of breath when playing or crying.

  16. cecily spencer

    he looks great!! how are you doing?

    • bakersdozenandapolloxiv

      I’m really tired, but hopeful.

      • You are an amazing mother. Apollo is very blessed to have a woman like you caring for him. Praying for you all to get the rest you need to keep plugin along.

  17. I’m so glad it’s working for you. Have you considered giving him blended real food through the tube? If so I would recommend these blogs as resources http://prayingforparker.com/ http://adaptions4kidz.blogspot.co.uk/

    Good Luck!

    • I suggested a blended food diet as well. I don’t want to put words into her mouth but I think she said they were going to look into it once they got the tube itself under control.

  18. He looks good. ๐Ÿ™‚

  19. Heather

    Is there a projected weight gain they have in mind for him?

    • bakersdozenandapolloxiv

      Not so far…they are mainly looking at getting a certain number of calories in him. A whopping 720 calories from formula. Right now he is getting 140 calories over 4 feedings.

  20. No questions at the moment, but I just want to say:
    1. We have the same Kindle and case–love it!
    2. I love Apollo’s gorgeous curls! And the suspenders–too cute!
    3. I have a 22 month old toddler of my own, and I’d want to keep Apollo too, except I think I’d no longer have time to spend the day removing my toddler from counter tops, table tops, bookshelves, and whatever else he decides to climb at any given moment!

  21. How are your other kiddos hanging in there? Even with only 3, when one is sick with something simple as a cold, it’s so hard to balance time with them! Praying that they are all coping well.

    • bakersdozenandapolloxiv

      They are doing as well as can be expected. The difficult ones are being even more difficult and the responsible ones even more responsible…we are surviving.

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