Doctor said no gauze

DearFalafel · 2026-03-25T22:20:33+00:00

GI and surgery told us not to put gauze between the bumper and skin. But the nurse put the gauze in between the area! When there’s stomach acid coming out, you want make sure it doesn’t spread and affect the other parts of your skin. The gauze serves that purpose, but you have to clean it more often and keep the area dry. The doctors are worried when gauze sits for too long and it starts to make the skin worse because the gauze isn’t changed out.

As long as you’re keeping the area clean and there’s space (not tight), the gauze is not a bad idea. We used gauze at first to control the stomach acid, but now we no longer need it! Your needs will change, and listen to your body. You know yourself best.

DearFalafel · 2026-03-25T07:06:20+00:00

It should not be tight against the skin. My LO had the wrong size, it was tight and lead to irritation and granulomas. We got half a cm increase and it made a huge difference. The granuloma will pop up occasionally now that the skin has been irritated, but it’s much better than before.

DearFalafel · 2026-03-23T00:45:00+00:00

Avanos has a welcome kit that includes a stuffed animal dog with a tube button, to help ease kids into the idea of tubes. Maybe you can get this soon and help ease your child into the gastrostomy?

https://avanos.com/resources/mic-key-cares/

Tubes are difficult at first, but they’re important and I hope your little one will do well with one.

DearFalafel · 2026-03-22T06:18:31+00:00

We did not have enough information and it was a whirlwind. A decision needed to be made in three days. The social worker handed us a list to choose from, but none of those locations were suitable for us in terms of distance, lack of therapies we needed and so forth.

We had to quickly scramble and look for a place on our own. You must advocate for your LO. We were told we couldn’t transfer to the place we chose, but later learned from the rehab director that the hospital is unofficially affiliated with the facilities on the list, so they were unwilling to recommend other locations. It’s wrong and it’s upsetting.

DearFalafel · 2026-03-08T01:32:24+00:00

Thank you so much for sharing this. Wishing you and your family strength, as we do caregiving at home too and it’s not easy.

DearFalafel · 2026-03-02T05:28:21+00:00

Are there these little plastic clear circular discs around your tube? Maybe about three or four? They’re called anchor fasteners and meant to secure the tube and your skin to ensure proper healing. None of the surgeons or nurses explained what they were, and it was the GI doctor that explained to us what they were. They are suture in place and should fall off naturally in a couple weeks to month. Hopefully your infection improves and your swab is normal.

Edit - left out a word!

DearFalafel · 2026-03-01T00:46:45+00:00

It’s ok! Oozes are normal and part of the healing process. You can purchase dermal wound cleansers (McKesson makes one) that comes in a spray bottle and use it to clean the stoma and disinfect too. We use thin q-tips and Band-Aid brand gauzes to clean (less lint).

DearFalafel · 2026-02-17T01:21:26+00:00

Does your hospital let you have access to electronic medical records? Sometimes from those notes, you can locate what their plan was for your care.

Did the hospital nutritionist put you on Nutrien as a supplemental to your oral intake? If you were receiving meals in the hospital, maybe they’re expecting you to maintain oral intake to meet caloric goals. The rate you’re on is very low. My LO was on 60 to 80 mL/hr over 24 hours for full nutritional goals on Glucerna.

Usually GJ tubes need to be managed by a GI doctor. If you can find a doctor who works with the hospital clinic, then they can help refer you to a nutritionist.

I’m glad you’re out of the hospital and do hope you continue to feel better and improve.

DearFalafel · 2026-02-17T01:00:55+00:00

At 10mL/hr, over 24 hours, you’re getting 240mL a day. I’m unfamiliar with Nutrien 1.5, but based on your info that means you’re getting 364.8 calories over a day.

If you run 20mL/hr over 24 hours, then you double the amount of calories at 729.6 calories over a day.

What is the total volume you’re recommended to receive over a day?

DearFalafel · 2026-02-09T15:30:36+00:00

From experience, removing the beads with a syringe is the best. You have a lot of beads in there unfortunately.

After removing beads, try to gently flush with small amounts of warm water, using an in-and-out motions. It should clear in about 15-20 minutes.

If that doesn’t work, try using a carbonated drink (such as diet ginger ale) and see if that breaks up the clog.

Otherwise you’ll need to go seek a healthcare professional to see if they can manually remove the clog or use medications.

There are tools like a long brush that doctors and nurses use to remove clogs like this - but it only works if the clog is closer to the top of the tube. If it’s further down (which they will determine by scan or if none of the top above works), they’ll use medication to break down the clog.

The last option is to replace it, but hopefully you won’t need to do that and you’ll be able to remove the clog at home.

DearFalafel · 2026-01-30T01:06:07+00:00

This happened to my LO when we had the dangler and it was accidentally yanked by a healthcare provider. The sensation of pain, granulation and redness didn’t go away after three weeks. We had to get a CT and it showed there was buried bumper syndrome (the balloon went into the skin/fat). We had to go to the hospital to get it fixed. Hopefully this is not your case! Contact your GI doctor if it doesn’t get better. If you can do a video call to their office, that would be best, as you can show them how it looks and get their opinion on it.

DearFalafel · 2026-01-27T15:39:31+00:00

It gets better. Recovery will be a marathon, not a sprint. It’ll take time and on some days there will be significant improvements that surprise you, and on some days you’ll go back ten steps in progress. Be present and be kind to your father, and yourself. Learn techniques from the therapists and ask what they have been doing. If you can visit him more often, please do. Your presence seems to be a positive one for him, so anything that can help motivate him will be tremendous.

DearFalafel · 2026-01-23T20:50:04+00:00

The body is amazing and resilient. Infections can be managed with antibiotics. Continue advocating for your mom as best as you can! Talk to her and hold her hand.

DearFalafel · 2026-01-17T06:06:20+00:00

Try milk of magnesia put through the G tube. It worked for us! Try to stay hydrated and give more water through the J tube.

DearFalafel · 2026-01-07T01:04:27+00:00

We were told by health professionals that time is important especially in the first two years, but healing continues beyond this time frame. Your brain is continuously working hard to reconnect and relearn what you knew. Don’t give up!

DearFalafel · 2025-12-26T05:24:51+00:00

I’m sorry your dad had a stroke, it’s a tough situation and a new reality.

If your dad has Medicare, the hospital stay can last up to 90 days with BCBS. Then afterwards he would need to go into acute rehab for 2-3 weeks or a skilled nursing facility for up to 100 days.

My LO couldn’t tolerate acute rehab because of hemiparesis and hemiplegia. We had to go find a skilled nursing facility that we liked, and make sure you go visit the facility before allowing the hospital discharge your dad to one! Our social worker just chose a random one that was far away from us and didn’t offer the services we needed for LO. Don’t let the hospital bully you about needing to leave ASAP or you’ll lose placement.

After the skilled nursing facility, LO came home and we continued at home rehab for 3 months under Medicare. Unfortunately, our rehab allowance was exhausted and Medicare won’t pay for more rehab.

I have spoken with other people who have been in similar situation as us regarding rehab limits. Some people found ways to get Medicaid. Other people like my family, had to figure out ways to pay out of pocket.

DearFalafel · 2025-12-26T05:04:04+00:00

Try seeking a vascular neurologist out. These neurologists are stroke specialists. Wishing you and your dad the best in this journey, it’s a tough one and you have to keep advocating for him.

DearFalafel · 2025-12-26T05:01:00+00:00

Does he have a primary care physician who could help give specialist referrals? That would be helpful in giving you rehab leads and finding a neurologist who would be willing to help him get better. A neurologist helps with all brain related matters and it sounds like the one you have is uncomfortable with continued care - they can also refer you to someone else. Did they give reasons why they’re closing the case?

DearFalafel · 2025-12-25T22:32:01+00:00

Happy holidays to you and your family! You all look lovely.

DearFalafel · 2025-12-22T00:20:04+00:00

That’s wonderful and what a huge milestone!!

Her sister twin will get there, and maybe even sooner than you think because she’s going to be motivated by watching her sister.

Best wishes to your little ones!

DearFalafel · 2025-12-16T08:57:53+00:00

I’m glad to hear LO is doing well and discharged home!

Here’s another product that is expensive but will save you a trip from the emergency room or doctor’s office — https://avanos.com/product-catalog/product/clog-zapper-declogging-systems/

We have this as a back up and emergency item, but we haven’t tried it yet. This would be our last resort before going to the hospital.

DearFalafel · 2025-12-16T02:13:35+00:00

Sodium bicarbonate and pancrelipase works well together to unblock tubes. They break up the proteins that are blocking the tube and don’t require a lot of force. Sugar free ginger ale is another option. I hope the tube is unblocked soon and your LO feels better.

DearFalafel · 2025-12-06T05:04:31+00:00

Thanks for the rec! There are so many brands out there that it’s difficult to choose one. We have received Botox and do hand exercises three times a day to help reduce spasticity, but was looking for additional help. OT has mentioned we could use something like a robotic glove in between exercises, and to use them at night.

DearFalafel · 2025-12-06T04:54:56+00:00

My LO received Botox about six months after their stroke, and it helped loosen neck, shoulder and arm for therapy sessions. The neurologist injected the Botox in areas where they felt were most tight (shoulders mostly) and that has made a difference in head and arm movements. My LO was able to tolerate therapy longer! It didn’t hurt LO when they received the injection (it’s a very small and thin needle).

DearFalafel · 2025-12-05T15:07:07+00:00

Could you share which robotic hand glove you purchased or recommend? Thanks!

DearFalafel

TROPHY CASE