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#196067 - 04/04/18 03:23 AM Kangaroo Joey feeding rate  
Joined: Feb 2018
Posts: 8
JonAngel Offline
Member
JonAngel  Offline
Member

Joined: Feb 2018
Posts: 8
Rockville
Good evening--

When I came home they set us up with Jevity 1.2, Prosource, and syringes. The folks in the ICU had shown us how to use the Kangaroo Joey, and my wife had to insist that the company supply one. She stuck to the hospital rate of 240 ml / hour, which means about two hours hooked up for each meal.

Within a month or so, I started increasing the feed rate to the maximum, 400 ml / hour, which reduced the time to 70 minutes or so. My wife argued that there had to be a reason for a slower rate, but most folks at the hospital, including the dietician, suggested that if I was comfortable at 400, that's fine.

Then comes my annual physical, and it shows somewhat elevated liver values.(ALT (SOPT) at 56, just below top of range, and ALK PHOS high out of range at 131). The doctor suggests that if I am getting Jevity too fast, it could put a strain on the liver.

Any thoughts on enteral pump feeding rates?

many thanks, Jon


SCC, HPV-related P16 Stage III T1N1M0
(prim. site rt base of tongue, 1.5 cm, 1 lymph node, nearly 3 cm)
Rad neck dissection 5/19/17 no probs
TORS 5/26/17 remove rt tonsil and divot at rt base of tongue
Arterial bleed at surgical site 5/31/17, 5 days intubated and sedated
Asp. pneumonia, hosp acquired pneumonia, DVTs
Tot 13 days in ICU
31 days targeted rad, until 9/21/17
CAT/CT 2/1/18 No evidence of disease
Swollen tongue and throat, diff to swallow
Still G-tube dep
Very grateful to be alive
#196073 - 04/04/18 05:20 PM Re: Kangaroo Joey feeding rate [Re: JonAngel]  
Joined: Jun 2007
Posts: 9,934
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,934
PA
Since you are able to tolerate a faster feeding then Im not sure why you would bother using the pump. The pump works best for people who are not able to tolerate the other faster methods of doing feedings, the gravity and bolus methods. When doing feedings it should NOT be set so fast! When fast rates are done the body isnt able to absorb all the nutrients as well. Im really surprised the hospital would start out at 240! To me, that high of a speed says the staff is not that familiar with using the feeding pump on patients at all which doesnt surprise me. They could be setting it so high for their own convenience. Patients usually should start out with the pump on a very slow rate (60ml and hour) then gradually increase the rate every couple days. When upping the feed rate, only add 20-40ml an hour at a time. This helps to ensure the patient can tolerate the formula at a rate before trying to increase it. When a rate is increased and causes the patient issues like having a bloated feeling or nausea the rate must go back to the start again at the 60ml an hour rate. After about a week, its ok to then try slow rate increases again. Patients should do best with their final rate speeds set to a maximum of 120-160 ml per hour. If you have a different type of feeding tube known as the J-G kind, the rate may be able to go higher depending on which port is used to do the feeding. Most patients have a regular PEG tube, not the J-G tube and only a very few have the button tube.

The bolus method is attaching only the tip part of the 2oz (60ml) syringe without having the plunger attached. Slowly pour the formula into the syringe. Raise and lower the feeding tube with the attached syringe to adjust the flow. This is the slower method of doing feedings after using a pump. A can of formula can easily be poured within a few minutes.

The bolus method also known as the push method is when formula is put into the syringe and pushed thru the feeding tube. It shouldnt be just pushed thru but rather slowly with steady pressure and taking a few seconds between pushing more thru. It can also be done by filling the formula bags with a couple cans and attaching it to the patient then allowing it to drip thru into the feeding tube. You can also do this by giving the bag a little help by squeezing the bag to push it thru faster. Constant pressure isnt necessary, a steady flow helps the patient to better tolerate the formula going in at a faster rate.

The patient always should be sitting up or propped up on several pillows. After doing the feeding, the patient should sit still for at least a half hour to let the formula "settle". Patients can quickly become nauseous when doing fast rates of feedings. Usually that is cured by simply slowing down the rate and adding some water to thin out the formula. It should take a patient at least 10 minutes to do each can of formula. Patients do best when breaking up their feedings and doing it several times a day. Theres a huge variety of prescription formulas on the market, probably several hundred different kinds made by many different manufacturers. They have varying calories, some have fiber, some are for people who have other issues like they're diabetic so if one isnt tolerated patients can change to another. Its best to use the prescription formulas which are specifically made to go with the feeding tubes. Trying a do it yourself blenderized diet can cause all kinds of issues for patients especially giving them big problems with their tubes. Regular foods can break down the tube and cause clogs. It is NOT fun getting a tube replaced!!! Ive done it more times than I can count. Id guess its been well over 20 times always done while Im awake, without anesthesia only a little lidocaine jelly to slightly dull the pain. To me, its definitely not worth the risk try using a homemade blended diet. I'll happily stick with the prescription formulas and save myself from creating any more medical problems.

Using the kangaroo pump works best for when patients run it overnight or while watching tv. Of course the patient still needs to have the head elevated by either propping pillows up or laying on the couch or recliner at a angle. Same thing goes with the other methods of feedings with keeping the head elevated and to stay still at least 30 minutes after the feedings. Patients also need to thoroughly flush the tube immediately after finishing their feeding. The formula can cause clogs which arent easy to always get out.

Hope all this helps to clarify things about the pump and feedings. Good luck!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#196080 - 04/05/18 12:15 AM Re: Kangaroo Joey feeding rate [Re: JonAngel]  
Joined: Feb 2018
Posts: 8
JonAngel Offline
Member
JonAngel  Offline
Member

Joined: Feb 2018
Posts: 8
Rockville
Thank you, Christine!

Both my ENT surgeon and the SLP think that since I can swallow small amounts I should have gotten rid of the PEG tube and Jevity 3 or 4 months ago. In fact my SLP basically says she doesn't want to work with me until I am making significant progress on eating. However my tongue is so swollen that each small amount of food requires 4 to 6 swallows, my throat is so swollen that my epiglottis won't move (zero retroflexion), I often cough from getting liquids at the top of my airway, and many foods cause a sense of revulsion. Most food that I swallow goes into the space under my tongue (valicula?) and I have to suck it up and swallow again.

I remember the word "bolus" from the hospital and not really understanding it. I also remember that when I first got the PEG tube in the ICU that they set up what seemed like a continuous feed, and that after several hours I told them I thought I was getting too much food, and too quickly. That is the only time I ever felt bloated. I have never felt nauseous. I've read about gravity feed through an open syringe or bag, but not tried it. The bags I get now won't gravity feed, they seem to require the pump.

When I have to get somewhere quickly, like an early appointment, I do what I call a syringe feeding: 2 and 1/3rd cans, by syringe with plunger, sometimes in less than 20 minutes. So that's somewhere less than two minutes for a 60 ml syringe. And having to use the bathroom soon after suggests that the rate is too fast to digest fully.

The nurse practitioner in radiology read notes that basically said that eating was so laborious for me that they thought I'd need the tube for another 4 to 6 months. When we go out to dinner, everybody has finished about the time I've gotten 10 or 15 bites.

Although I rarely finish normal food, I can be counted on to finish a Pepperidge Farm Milano cookie in less than 5 minutes!

best wishes, Jon


SCC, HPV-related P16 Stage III T1N1M0
(prim. site rt base of tongue, 1.5 cm, 1 lymph node, nearly 3 cm)
Rad neck dissection 5/19/17 no probs
TORS 5/26/17 remove rt tonsil and divot at rt base of tongue
Arterial bleed at surgical site 5/31/17, 5 days intubated and sedated
Asp. pneumonia, hosp acquired pneumonia, DVTs
Tot 13 days in ICU
31 days targeted rad, until 9/21/17
CAT/CT 2/1/18 No evidence of disease
Swollen tongue and throat, diff to swallow
Still G-tube dep
Very grateful to be alive
#196084 - 04/05/18 02:12 AM Re: Kangaroo Joey feeding rate [Re: JonAngel]  
Joined: Jun 2007
Posts: 9,934
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,934
PA
You are only 6 months post rads! Thats still well within the recovery phase where you have lots of improving yet to do before you are considered well again. It sounds to me like you have made significant progress with your eating. After everything you have been thru, being expected to return to eating again at only 6 months post rads is ridiculous. To me, it sounds like you are able to eat many different things but you eat very slowly. Every single one of us who went thru rads is a slow eater. I finished rads in 2007, but had a couple recurrences which ended in 2009 so Im 9 years out from any treatments and I still eat slowly. It takes me about 10 minutes to eat a 6oz cup of peach yogurt. I have to pay attention to what Im doing or I can choke. Its absolutely no fun when I mess up and end up choking with yogurt coming out from my nose.... painful and disgusting!!!!

Maybe this would help, can you try to eat by substituting a meal like breakfast instead of 2 cans of formula? That may help get you back into the eating routine. Also doing 2 and 1/3 cans in less than 20 minutes is too much for your stomach to hold and definitely is too fast for your body to absorb the nutrients. Even though you still have a long way to go with your recovery, you can still work on trying different foods and eventually start figuring out what regular food equals one can of formula. Then the next step would be to start eating whatever food instead of doing a can. Several years ago I started a list of foods that are easier for patients that have recently finished rads. It has things that are mild without alot of spices and are smoother in texture. Ive included the link at the end of this post. Practice makes perfect smile I know you can do it, it just takes time and cant be rushed.

Have you done a barium swallow test to ensure you are safely able to swallow? If you are working with a SLP, they should be able to help you get this test taken. Its very important to make certain you are swallowing safely or aspiration pneumonia can happen.

Keep up the good work and eat one of those delicious milano cookies for me smile I used to LOVE them and now they're something I just cant eat.

List of Easy to Eat Foods


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#196089 - 04/06/18 02:34 AM Re: Kangaroo Joey feeding rate [Re: JonAngel]  
Joined: Feb 2018
Posts: 8
JonAngel Offline
Member
JonAngel  Offline
Member

Joined: Feb 2018
Posts: 8
Rockville
My next Milano is for you!

Thank you for the help and kind thoughts. I believe I've had 3 different modified barium swallow tests: one just before the bleed while in step-down post-TORS, one in late summer, and the last one on December 15. After this last MBS, the SLP told my wife and I that I have to think of this as training for the olympics: disciplined, routine, effortful. She said that I should be eating something every minute of the day.

It's simply not in my nature to be that disciplined and routine-ized. I do need to do more with my swallowing and tongue exercises. Most of my exercise time has been manual lymphatic drainage exercises.

I think the idea of eating a breakfast in place of cans is a good one. Before all this happened, I probably wasn't getting much calories at breakfast (chobani yoghurt, banana, coffee). I could start by finishing a yoghurt and a smoothie.

best wishes, Jon


SCC, HPV-related P16 Stage III T1N1M0
(prim. site rt base of tongue, 1.5 cm, 1 lymph node, nearly 3 cm)
Rad neck dissection 5/19/17 no probs
TORS 5/26/17 remove rt tonsil and divot at rt base of tongue
Arterial bleed at surgical site 5/31/17, 5 days intubated and sedated
Asp. pneumonia, hosp acquired pneumonia, DVTs
Tot 13 days in ICU
31 days targeted rad, until 9/21/17
CAT/CT 2/1/18 No evidence of disease
Swollen tongue and throat, diff to swallow
Still G-tube dep
Very grateful to be alive

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