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I will try both Pete - but not together. LOL I just about get things rolling problem free and then there is a little hick up - keeps me on my toes.

I have so many meds to go down the tube now and I have that all straight where they do not seem to be clogging it - the Jevity is just too thick. I think Christine was thinning hers and I am looking for that info now to try.

I'm still checking on the bird Jim - how many inches tall is it? That will help.

Got to take a short nap again - boy I should have all my beauty sleep by the end of this week.!!!!

Love
Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #94674 04-30-2009 08:05 AM
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Posts: 5,260
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THe bird is about the size of a sparrow. I hope we learn whatthe heck it is besde pretty. Hey lady, how are you feeing? and has the Dr came up with anything yet? You worry me but you seem to have more energy going the last couple of days. How are you and mama getting along??Have a great day Patty and take this rain back to Illinois will ya.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #94676 04-30-2009 10:02 AM
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Good1 Offline OP
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Well Jim - huge surprise - mom is just too busy to come out for the next week or so. Blessing for me to not have to put up with it I guess. I just don't know how I would get by without all that help that she and Co Co Puffs keep giving me. LOL

I'm taking it easy today and getting ready for a short nap. I have a friend coming for a few days this weekend and we will just hang out here and relax.

We will have to Google the bird - they even have sites with their songs on them - can you get a photo of him? It does sound like a blue bird, but there are a couple of different kinds.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #94686 04-30-2009 12:56 PM
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Patty, I struggled so much with my feedings that I have several hints for you. If you have trouble tolerating the formula, or in your case its just too thick, dilute it. You can add a can for water for every 2 cans of formula. There isnt anything to worry about if you add too much water, just make sure you get your required cans per day. If that works then add a can of water for every 3 cans of formula. Its all trial and error. You know straight formula doesnt work. The extra water helps also 'regulate' you. How many cans of formula are you doing per day total? What about nighttime feedings?

Its too bad about your mom. I wish you the best of luck when she does finally arrive. Hope everything goes smoothly for you and she is helpful. You are very fortunate to have good friends. Sometimes friends can be so much better than family.

Hope you are doing ok today.



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
Joined: Sep 2008
Posts: 489
Good1 Offline OP
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thanks Christine

I remember seeing a thread from Pete about diluting the formula so that the pump could run all night. I started adding 4 oz of water per can today and will adjust up or down from here. My goal is 5 cans per day, plus the Shaklee shake that I have each morning and I have not been getting the formula in the past two days. Of course, it does not help when I am gone for Ebitux for over 4 hours when it should not take that long or that I have to stop at the drug store to buy supplies that the visiting nurse keeps running out of. I had a discussion with the nurse today. She is also suppose to see if someone from Hospice will talk with me because I need some more support and need to know what to expect. Right now I feel like there is plenty that they are not telling me and don't like that part.

So glad that we idtenified the mystery bird!Stay dry over there Jim - 3 or 4 days of this weekness.

Love you Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #94745 05-01-2009 08:36 AM
Joined: Dec 2008
Posts: 1,004
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The healing garden sounds so neat....can't wait to hear how it goes. Maybe you can post some pics on FB!!

Have fun with your friend this weekend....that sounds like fun!!


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
Joined: Jun 2007
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Did you get my message about the bird. I pulled it up on search and it is a blue jay, This one happens to have the orange breast. Pretty little thing. He has plenty of company out there. cardnals ,sparrows, squirrels crfows, LOL You name it, it's in those woods. Dang deer walked thru my garden durig the nite too. GRRRR


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #94767 05-01-2009 03:08 PM
Joined: Jun 2007
Posts: 10,507
Likes: 7
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Patty, hope you get the help you need from the hospice people. It would greatly bother me too if I felt left out of the loop with my own health matters. Your road is very very difficult. Please lean on us if you feel the need, we are here you know that.

When do you do your feedings? I did mine overnight and that way my treatments didnt make it so I ended up starving myself. Thats the awful thing about not being able to eat properly, you cant just stop someplace and get something. If you do several cans at night then daytime could be a can in the morning and a can later in the afternoon. Are you able to tolerate the gravity or feedings with the syringe? Those are very fast but made me very sick even if I sat still for an hour afterwards. The second I stood up there went all my hard work. Also, do you have enough formula bags for the pump? I still have almost a full case if you want them I can ship them to you, just PM me your address.

Please be very careful to make sure you are doing your 5 cans per day. You will feel awful if you dont get the nutrition. I ended up in the hospital a few times for malnutrion and dehydration. I know its not easy doing the feedings, but at least you dont have to taste that stuff.

Hope you are having a good day today.



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
Joined: Sep 2008
Posts: 489
Good1 Offline OP
Platinum Member (300+ posts)
OP Offline
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Joined: Sep 2008
Posts: 489
Christine

Thanks for the tips I know that you are very knowledgeable on the feeding issues and I need all the help I can get - I have been using the feeding overnight one the past week or so. Monday we are replacing part of the tube on the outside that keeps plugging up. I wake up in the middle of the night soaked in food because it popped out or I got full and it popped open. I stated adding 4 oz of water per can yesterday and it is going better.

I have always done mine gravity and sometimes using the syringe and it only started making me sick about 4 weeks ago when I started fighting this infection. I am trying very hard to get the 5 per day. I messed up bad the past couple of days and only got 4, then 3 they yesterday less than 2 in me. I weight 89 lbs this morning!! I have been in the chair and hooked to the tube almost all day - when my stomach will accept food.

I also drink water, juice and a shake that I make that is 630 calories each. I did have a shake everyday this week so far.

The god news is that the abscess is MUCH smaller today and barely has anything coming out of it and it is almost all fluid. It does have a smell which is not good, but I am hoping to be on the downhill side of this infection which would help I bet. I have a low grade fever, but it has been coming and going for the past 3-4 weeks.

For now I will go back to the recliner and hook back up to my go juice. Hopefully I will be up and about better when the weather gets nicer too. I am fortunate that I have had friends here to help me for the past week or so. I just want the doctors etc to explain everything to me and my sister - sometimes I feel like they act like I am not here and that is stressing me out some. It is not what I had in mind, even though I know that they are trying to be helpful.

Love you guys -

Keep praying for sunshine smile

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #94773 05-01-2009 04:09 PM
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Posts: 5,260
Been praying for sunshine for you since the get go Patty. Have some thunder hee tonite and I guess in the Columbus aea they have a tornado watch. luv Ya Lady


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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