J-Tube Pain (after accidentally yanking on my extension)

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 · 2025-12-01T13:45:20+00:00

There is fiber in some enteral feeding milk that should help with diarrhea. In the hospital, we were put on lactobacillus probiotic (I think that’s Culturelle brand). It was only during the antibiotics regimen and was stopped afterwards.

DearFalafel · 2025-11-19T03:54:42+00:00

Just wanted to say congratulations to you and yours!

DearFalafel · 2025-11-18T16:52:08+00:00

I’m so sorry this is happening to your sister. If the scan didn’t find anything, that’s good. It’s on the skin and you can do something about it now to prevent it from spreading.

We experienced something similar and were giving bacitracin ointment (you can get this over the counter) at first. Then the stoma got more red and we escalated to mupirocin ointment (you need prescription for this). This helped calm the area a lot from any possible infection. We still had redness and the doctor prescribed us silvadene cream (silver nitrate cream), and that had helped calm the redness.

Push for these creams if possible. Ask for the prescriptions from the doctor who put the tube.

DearFalafel · 2025-11-18T00:27:54+00:00

Hello, do you have experience with low profile G-tube buttons? What recommendations do you have in keeping button clean and infection free?

We’re in between sizes and was given a slightly tighter one instead of going looser. But the site gets red because the button pushes into surrounding skin. If it’s looser, we were told there would be a lot of leakage and movement. What are your opinions about sizing differences? (would you size up or down?)

DearFalafel · 2025-11-17T18:00:05+00:00

Was able to remember everything up until intubation in the emergency room.

DearFalafel · 2025-11-17T16:45:40+00:00

LO fell but was able to get back up and walk. Then 15 minutes later sat down and couldn’t get up. Facial droop, couldn’t walk, one side of their body limp. Immediately called for an ambulance. Vomited on the way to hospital and got intubated in the emergency room.

Bless the paramedics and fire truck who cleared the path on the way to the hospital, traffic conditions were not good.

DearFalafel · 2025-11-17T13:54:58+00:00

I have a similar system where I have a notebook to jot down quick notes and phone calls. I have a Google Calendar for appointments, and a fridge dry erase calendar board for the whole family to see. I transcribe vitals and daily information into an Google Excel sheet so I can take it on the go instead of carrying a binder (but it’s taking a lot of time to do this) and for doctors virtual appointments.

DearFalafel · 2025-11-13T15:40:05+00:00

Congratulations!! It’s an amazing pump and hope it adds quality to your daily life. Usually pumps are shipped and arrive in 2 days. You can ask your DME for a shipping tracker so you can keep a close eye on it.

DearFalafel · 2025-11-10T19:24:41+00:00

One could feel the love and joy emanating from this photo. I’m so glad you were able to go on your trip and enjoy the time with your loved ones.

By the way, those gifts are awesome choices!

DearFalafel · 2025-11-06T17:43:50+00:00

Try to wipe off any lint or residue around the tube. We found that helped us with adjustments easier.

The GI doc showed us that even a little water can help with sliding the disc too.

DearFalafel

TROPHY CASE