The G-Tube Life

posted in: Apollo, Special Needs | 32

I’ve had several people ask, so here’s a little update on Apollo and his g-tube. It has been extremely painful for him, and he was pretty much miserable until he began antibiotics over the weekend. His g-tube site is just being a bit more stubborn than most when it comes to healing. Personally, I think that  Apollo’s poor sleep and constant hunger lowers his stamina and is making it harder for his body to heal.

I’ll be honest and tell you life is very rough over here right now. I have added four hours of tube feeding to my list of things to do each day. Apollo is tube fed at: 7:00, 11:00, 3:00 and 7:00. I clean the site after each feeding which brings on screams of pain from Apollo. He yells, “Stop please!” and “Owwwiee” the whole time. He’s an exhausted, sobbing mess when I’m done.

And, of course, life for my other children hasn’t stopped. Tuesday I had to drop Adalia off where she milks cows at 8:15…when she was done, I picked her up and drove her 20 miles in the opposite direction to fill out paper work for her community college classes in September. I came home and had an hour to get Apollo packed and ready for his appointment in Bellevue (2 hours away). I needed to pack lunches for all of us going (Me, Tilly, Hezekiah, Tucker and Apollo), normal toddler stuff,  plus  Apollo’s pump, formula, antibiotic, etc.

We left at 11:30 for a 2:00 appointment. Then we went to the LEGO store then arrived home about 6:30. This was the day after I packed up all 11 and headed to the zoo after Apollo’s 1:00 appointment in Seattle. Yeah, it’s busy and crazy.

His feedings are no problem when I’m at home. But between his doctor’s appointments and ten other children in the home we can’t always stay home. So far I’ve tube fed him: at the zoo, driving down the freeway, in the mall and at Costco. It makes life interesting, to say the least.

When I weighed Apollo he had gained four ounces in the ten days since having his tube placed. Not exactly a number to jump for joy over. He’s gained a total of one pound seven ounces since his double aortic arch division two months ago.

The new accoutrements of our life. A pump, IV pole, syringes, bags and a month’s worth of high calorie formula.

The worst part for me has seen the pain this is all causing Apollo. Saturday before we took him to the ER he was bent over in pain. I couldn’t hold or move him without it hurting. He would wake in the night crying out in pain. That part is taking its toll on me. It is so painful to have the site cleaned. Sometimes I wonder how much pain I can watch him suffer through. It’s been non-stop surgeries and procedures since December.

I’m pretty sure once his site heals, I’m going to love the tube. There is certainly a comfort in knowing he is being fed. Now that he is on antibiotics for the infection, he seems to have more energy. He seems happier. He sits and eats at meals better than he ever has in his life- probably because he is no longer starving and frantic for food. We are also able to give him all of his medicines through his tube…sometimes even when he’s sleeping, which is awesome!

I keep reminding myself that the tube is to make life better, not easier. Apollo is now able to get the calories he needs…without burning them to eat and breathe at the same time. Sometimes, between meals, it is easy for me to forget that his anatomy isn’t fixed…His eating issues aren’t fixed, he just now has other options. Then I sit down to feed him food and it all comes rushing back. He still has trouble swallowing. He still refuses most food. It’s still a struggle. Every single day.

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32 Responses

  1. oh my gosh…i feel so bad for him. i hope all of this is over for him soon…but i know it won’t be. but praying for it to get easier…faster!

  2. Danielle

    I started reading your blog more than a year ago and it breaks my heart that Apollo has to suffer through some of the same things my son did. (My son was severe FTT due to a heart defect, open heart surgery at 16 months, and years of quarantine due to a weak immune system.) Every tube-feeding parent reading this knows exactly what you are going through. The supplies, pump feeding on the go, watching your child in pain and having to do things to them that hurt . . . My son had an NG tube for nearly a year, that I had to drop on him . . . I pray that Apollo’s g-tube site heals quickly.

    Eventually adding some probiotics to his formula may help his digestion and discomfort, it can also boost the immune system.

    My son is five now and has come so far in his health, I pray that Gd will send the same healing to Apollo.

    To this day the one (and ONLY!) thing I miss about the tube is the easy administering of meds.

    Sending love.

  3. any thoughts of continuous overnight feeds, at least until things settle? Its less physiologic, but it does let them wirk up volume until they require fewer bolus feeds during the day. We’ve had foster children with new tubes and we ran 10-12 hours overnight. Their underlying reasons for tube feeding were different, but I wonder if it’s been considered?

    • I was wondering that too..I know he already isn’t sleeping well..and you don’t want too much thrashing around with that new site etc…AND Apollo may just not be down with sleeping with that hooked up.

      In the long term however I would def look into it….If he ever gets to sleeping better you could say run maybe 2 of his feedings at a alow rate through the night. That would cut out alot of disruption during the day. It depends how much he is eating orally too. I know personally I was on bowell rest for a full month and was on TPN(through a PICC line in a vein) I tried night feedings but then would feel really shaky when it wasn’t hooked up. I however was taking nothing by mouth.

      This is all so complicated and individual. It is good though to ask. The Drs wob’t always think of your home life when they are prescribing things. they just go by what they usually do. That isn’t a bad thing..they have to start somewhere…however since you are administering it and not say a home nurse as long as you get the Drs ok then you should be able to make some adjustments…Like say maybe in another hr you would be home…maybe you don’t need to bust out the supplies at Costco….or if you give a feeding 45 min early becasue it would mean not pulling over in a parking lot to get him hooked up.

      This is all new for you so i think it is good to follow the rules for now. but you will see you have alot more wiggle room(or not) than you do right now:)

      Hang in there my friend. prayers. We are going through stuff here with oldest..about to go to Dr to get scripts for meds I swore we would never try…..it is time now though:(

      • bakersdozenandapolloxiv

        Liz- yes he thrashes around far too much and is awake every hour or so. We’d love to move to that when he is sleeping more. The doctors suggested us feeding him six times a day…every two hours. Well, at that rate he would have no time play or be a kid. Not to mention eat by mouth! Our compromise is 4 times a day every 4 hours. The times I have fed him out of the house I’ve been gone all day and appointments two hours away, so I had no choice. The zoo is only about 10 minutes from the Children’s Hospital!

    • bakersdozenandapolloxiv

      This was discussed, and I would prefer to feed him overnight, but he thrashes around so much and is still waking every 1-2 hours, so it just doesn’t seem reasonable. Once he begins sleeping longer at night, we will probably switch to night feeds.

    • bakersdozenandapolloxiv

      We don’t do overnight feeds because of his constant waking and thrashing, but hope to do them in the future.

  4. I’m praying several times a day for you and Chuck and Apollo. My heart aches for you when I see all that you are going through. Hopefully, some of this will ease up when Apollo heals at the tube site. I will continue to lift all of you in my prayers.

  5. I’m sorry to hear about all the difficulties with the PEG site–but it sounds like Apollo is tolerating the feeding itself alright? I’m a long time reader and a dietitian who works with PEGs in long term care (mostly from post-stroke or post-traumatic-brain-injury dysphagia). I’m curious about how the process has been for a much younger (and therefore smaller) person. I completely understand if you don’t feel like answering, but I’m wondering if you’d mind sharing what his infusion rate is?

    In my experience, starting new boluses can be uncomfortable, particularly if you’re administering a high volume feed relatively quickly. As Kim mentioned, that’s where overnight feeds (at least to start off with) can be handy. With the overnight feedings, you can keep the total volume in the stomach at any given time pretty low (and therefore avoid abdominal distention) while slowly increasing the volume of boluses during the day to the point that all the formula can be provided at relatively few feedings throughout the day. If Apollo is having quite a bit of discomfort with the feedings themselves (as opposed to with cleaning the insertion site), then the overnight feeding route may be nice to decrease his discomfort as well as the hassle of four feedings a day (one or possibly even two feedings could be eliminated during the day).

    Overnight feedings are not necessarily a good idea if Apollo moves around a lot in his sleep (greater chance of pulling out the tube and ending up with a mess on your hands–and discomfort related to having to replace the tube). Generally, an overnight feeding will mean that you’ll have to elevate the head of the bed about 30 degrees to make sure the formula goes down (into his small intestine) instead of up (into his esophagus and possibly his lungs). If Apollo’s GERD is severe or if he has slow gastric emptying, overnight feedings may increases chances of regurgitation and potentially aspiration.

    I’m sure Apollo’s dietitian could give you more information about continuous overnight feedings and help you evaluate risks and benefits (there may be other considerations specific to pediatric PEGs that trump the general thoughts I listed above.)

    • bakersdozenandapolloxiv

      Bekacubed- yes, thankfully, he tolerates the feeds just fine. He just doesn’t like me messing with the site (naturally). We have chosen not to feed him at night right now because he is up every hour or so and thrashes around like crazy. We would love to move to that in the future.

    • bakersdozenandapolloxiv

      beckahcubed- we have been slowly upping the rate. This morning he was getting 110 ml at a rate of 145 ml per hour.

  6. Christine

    (delurking to say) Beautiful pictures, beautiful boy! Praying this gets better for you soon!

  7. Long time reader, first time poster. I just wanted to say I hope your son heals up quickly, and that he will become healthier over time. It makes me so sad to read about all he has to go through, but to see that he still smiles in pictures makes me realize what a wonderful job you, your husband and family are doing with this boy. For him to be able to be happy, despite being in pain, really shows a lot about how you are as a person. I wish you guys nothing but the best, you have a beautiful family.

  8. ssmazzon

    Praying! I think of you often and will continue to send positive thoughts! Hang in there…..Apollo is so precious in these pictures….just precious! Take Care!

  9. Renee, my heart goes out to you and your little one. It must be SO HARD to watch your child in pain, to tend to that pain every day, to find it in yourself to remain upbeat and optimistic, at the very least for your child’s sake, to provide him with at least the feeling of security that though it may hurt now, it is in his best interest.

    You are an amazing woman, I have “watched” you from afar since Apollo was born, and you’re clearly one of the strongest women I’ve ever known. You are strong and capable, and you are obviously doing what needs to be doing. I wish I was there to give you a hug though!

    Hang in there. It WILL get better.

  10. Loving you from Va and lifting you and Your sweet boy in prayer! May the Lord give you some peace and rest for today. You’re an awesome mom!

  11. Shannon

    Peace to you and your family from Oregon.

    I’ve been reading your blog since around the time Appollo was born. I must say he looks so much healthier in these recent photos than he did before his aortic surgery.

    • bakersdozenandapolloxiv

      Thank you, Shannon! I agree, he looks so much healthier than he did back in December.

  12. Your hospital might have a “wound” nurse who can help; we used one when our son had trouble with his initial PEG placement. Ultimately it took a couple of silver nitrate treatments, and once it was changed to a mic-key, daily use of “magic butt cream” (maalox and aquaphor) kept the site in better shape. Our son also had a small/lightweight backpack that eventually he carried his “equipment” around in to make feeds on the go a bit easier. Not all pumps can do this, but maybe it is an option.

    • I was going to suggest the back pack too..way more portable..

      • bakersdozenandapolloxiv

        Liz, we have a backpack, but the pump is too heavy for him to realistically carry around. It will be an option when he’s bigger though.

    • bakersdozenandapolloxiv

      ENJC, he saw the nurse at the hospital last week. Thanks for the suggestion! He has a backpack for the pump, but he’s only 21 pounds and its a bit heavy for him.

  13. Awww, I feel so sorry for him. I don’t get why tube feeds will be less resp effort because he is still crying from the feeding. Looks like he could have drank it and it soothed his esophagus. What if growing doesn’t fix his throat issues? I hate that he got the tube, doesn’t seem right to do to him :(. Do you wish you had not gotten it or are you glad you did? I hope they told you all the issues with tubes and how long will he have it? Poor baby needs some mommy Apollo time only. 🙂

    • He wasn’t really able to take in much orally..hence the tube…the crying I am sure he does is from the cleaning of the tube etc…not the actual feed from my understanding….the tube feeds wouldn’t “sooth his esophagus..” that isn’t really the issue at hand anyhow…….it’s the indentation left from his previous anatomy..He is at such risk for choking etc…you wouldn’t want to feed him something as vile as tube feed only to have him aspirate it into his lungs and develop pneumonia….Apollo wasn’t getting nearly enough calories before to even grow…barely maintaining his weight in a very low percentile……have you tasted tube feed? Not good..lol…G tubes are a pain for sure…They are a foreign body. Your body will try everything to reject it…infection etc….but sometimes very necessary….that is just my opinion from what I know about Apollo’s situation

    • bakersdozenandapolloxiv

      Jill, Liz answered most of your questions correctly (she’s a nurse married to a doctor and long-time reader) but I’ll go ahead and clarify too. Apollo doesn’t cry during his feedings, only when I clean the site. He can’t drink the formula…even liquids have to be forced past the compression in his esophagus. It doesn’t need to be soothed (we have pics of it from his endoscopy- it is pink and healthy). Think of it as a straw being pinched. A lot of food can’t physically be forced past it…it builds up and stays there until it dissolves or is forced down by water or breastfeeding. He cannot take in enough food by mouth (solid or formula) to grow. Even when he was strictly breastfeeding it was an issue (his compression is that bad). I am SO glad we have it. He is clearly more energetic (he had been slowly growing less and less active over time…) and feels better. He even looks healthier now that he is getting more nutrients. It is just so hard to see him in pain and be causing him that pain (as I clean his site). There ARE no other options at this time…it was either continue as we were (him not growing) or put in the tube. Also, as Liz pointed out, he is at a huge risk for choking. He has had several major incidents, the worst leading to a 911 call and ambulance ride. Yes, we were aware of the cons of placing a tube…we were also living with a toddler who felt like he was starving, yet literally couldn’t eat the food in front of him. No one knows how long he will have the tube…if I had to guess, I would say a couple of years. The current tube will be replaced in the fall with a much smaller mic-key tube.

  14. Oh Renee, this sounds awful! I’m so sorry you and him are having to walk through this!! My heart and stress level just hurts for you all! I pray this will lead to more health and peace in the very near future for all of you. (((((((hug))))))))

  15. My thoughts are still with you and Apollo. I wonder whether he was malnourished enough that it’s slowed his healing… but he recovered so fast from the thoracotomy, so maybe not. I second ENJC’s idea about the wound/ostomy nurse, and am glad you saw one recently. They have great experience with these things and could provide some good ideas.

    How’s the weaning going? (Is that still an ongoing project?)

    • bakersdozenandapolloxiv

      Robyn, I’ve wondered the same thing about his slow healing. We are now feeding him 130 ml of high calorie formula and he’s eating almost nothing by mouth. The weaning isn’t going…I had really, really hoped he would nurse less after surgery, but he’s uncomfortable so much of the time and he really uses it for comfort.

  16. Hi not only am I a new mom but I am also nurse to a beautiful 5month old little boy who has renal issues since birth… After looking at his face and instantly falling in love his father and I were heart broken to find out our brand new baby was sick. He now has a g-tube because he had about a month of “failure to thrive” I hate the term!!! We now think his body is rejecting the tube! Do you know in your experience if that’s possible.

    • bakersdozenandapolloxiv

      Alexis, I’m sorry to here your son is having trouble with his g-tube. Apollo’s body doesn’t seem to like his either- he’s had 3 infections in less than three months. Feel free to email me (bergerondozen at yahoo dot com) if you have some specific questions I can answer.

  17. Hi. I have a 5 year old on a feeding tube. It is nice to here other peoples stories and I thank you for sharing yours. I live in california and we are able to have a home health nurse for 8 hours a day. Are you able to have that? My son was on continual drip at the very beginning and we have weaned him off of that to 4 bolus feeds of a vegan diet a day. Thankfully right now my mom prepares the blends. He is progressing very well to eating by mouth as well. He gets about 1200-1500 calories a day. Depending on if he is in school now half of his calories are usually P.O. Which is amazing for him. If you put your son on continuall drip the progress of him eating by mouth might not increase because he will be hungry. anyhow if you want more help and tips i may be able to encourage you some with the progress of eating by mouth now thankfully. Again thank you for your storie. Would love to here updates.

    • bakersdozenandapolloxiv

      Thanks for your input! That post is a full months old and we no longer use the pump. He is on four bolus feeds a day. He had a second heart surgery October 30th and developed chylothorax so he is on a strictly non-fat diet. He isn’t tolerating the special formula (it’s milk based and he’s allergic) so we are blending food for him now. Do you happen to have a photo of your son you’d like to share on my “Have g-tube Will Travel” blog?

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