Too late for feeding tube insertion?

[juliefitz]

Hi-
I'm new to posting on this site but have been reading it since my mom was dx in May 2009 at Wake Forest. She is 60 years old and we think it started showing symptoms in her left leg a year and a half ago. At the most recent clinic, the team said a feeding tube was in order ASAP (her breathing went from 55% in July to 46 % in August-only 5 weeks later) and now saying that in order not to miss the window, it needs to be done right away. She can still eat, but needs it before they can no longer put her under because of her breathing. Has anyone experienced this? any suggestions? Can you wear a bipap during the procedure? Also, even though she initially presented with leg weakness, they are now saying it is bulbar, because it seems to have moved there and is going fast. She is on the BiPap almost 20 hours a day and getting harder and harder to understand and she seems to be going down so quickly. She is a fighter, though, and is hell bent on not going down easy!:) Can you have strong bulbar ALS even though that is not where it began? We all love mom to pieces and want to learn as much as we can to help her.
Sorry for the info overload- its good to talk about this though! Thanks in advance for your help!!
~Julie

[joelc]

Sorry for what is happening to your mom!

To answer your question, do it very soon as the window of opportunity is closing. And No, she cannot wear her bipap as the tube is inserted through the mouth. I had mine done when my breathing was about the same as your mom. It was a piece of cake and only took 5 minutes.

[BethU]

Julie ... so sorry about your mom's progression, but glad she's a fighter! That spirit helps!

I don't know about wearing BiPap during surgery; the doctor would have to answer that, but they can keep her breathing under control the whole time. It usually takes only about 15 minutes to insert the tube. It is DEFINITELY a good idea to have the PEG put in while she's stronger. The struggle to eat and swallow when bulbar symptoms get advanced is exhausting. Without the tube, you can spend hours a day just trying to get nutrition to your stomach. The tube is literally a life-saver.

Every case of ALS is different ... you'll hear that over and over .... and as far as I'm concerned, ALS is going progress however it wants. If her bulbar symptoms are more advanced than in other parts, that's all the more reason to move fast.

Good luck to your mom, and blessings to you for being her advocate!

[asantiago]

Julie,
Sorry to hear about your mom's diagnosis and progression. Is she willing and ready for the tube? I'd get on the phone today and get it scheduled if I were you. Sometimes it can take a while to get in. If they give you an appointment weeks out, tell them that won't work and be persistent if you have to. They may have an opening soon hopfully they can get it in asap.

To answer your question about bulbar progession, there really is no norm and anything is possible.

[juliefitz]

Well, mom was supposed to get her tube in this morning, but a bad fall yesterday in her foyer while my dad was helping her get out the front door :( She thought she could "walk" 6 ft with her walker, her ankle gave out tripped and fell backwards onto tile. After 8 hrs in the ER, she is home now resting, but with no PEG tube(we had to cancel the procedure). One thing we learned the hard way from all of this is to get all of the equipment early. We've waited too long (Power chair, hospital bed) and could have made her life(and ours) much easier. I just hope her tube can still be inserted by the time we reschedule and her breathing is not too far gone. :( I hate this disease and I want my mom back.

[BethU]

Julie ... so sorry about your mother's fall. I've had my share, and we PALS always seem to land on tile or concrete.

Hope they get her procedure done quickly. It will make daily life so much easier for her and your family.

Blessings to you all.

[wacked]

We used all the resources we had available (energy, prayer and finances) to give my mother-in-law the care we felt she needed. I think, as humans, we always expect something more from ourselves. She was not struggling with ALS, but struggle is struggle. Within a year of her death, my husband was diagnosed with ALS. My lesson from past experience is that you do the best you can with the hand that you're dealt. Be vigilant, and don't waste precious time beating yourself up.
Our love and prayers are with you,

[lisaann1170]

Julie,

I'm so sorry to read of your mom's fall. I hope she recovers quickly from her fall and is able to get the feeding tube to make her life easier.

My thoughts are with you!