Today's surgery

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Lety

Guest
Well, finally the day came. Today my daughter is going to have a feeding tube placement (Mickey button), she is at a 0% BMI, we will leave for the hospital in a few minutes, I read as much as I could about feeding tubes but I know I will have many questions after the surgery. Just being in the hospital is stressful, I already made a sign (Please wash your hands every time you enter the room) to put on the door. I know how nurses and staff "forget" how to wash their hands. Am I overreacting?

Lety mom to 7 year old girl DDF508
 
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JENNYC

New member
I don't know anything about what you are fixing to go through just wanted to say good luck!!! I will say a prayer for you both!!
 
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Emer76

New member
Thinking of you. No,you are not overreacting by putting a sign on the door. You are taking care of your daughter.
 
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Lety

Guest
Thanks for all your prayers and answers. She is finally back in the room but it was very stressful and she is in a lot of pain, she is on morphine every 2 hours . I am already stress, doctor said she couldn't have anything trough her mouth until tomorrow not even water but then the resident prescribed lortab which had to go trough her mouth and I had an argument with the nurse because I said we were told no to give ANYTHING trough her mouth. She is having 0.5 Morphine in the IV but she is still in pain. Her doctor didn't mention anything about antibiotics but now the resident wants to give her ANCCEF (never heard of this antibiotic before) Is almost 10 pm and I can't call her surgeon or CF center to confirm if this is ok. Resident is the one who prescribed lortab by mouth, didn't he know she is not supposed to take anything by mouth??? Does she really need antibiotics? I know they are to prevent infections but I read of other patients that have g tube and no antibiotics unless they got an infection . I don't know what to do...Oh Lord give me strength I am 47 I don't know how long can I take so much stress seeing my child suffering.
 
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jshet

New member
Hang in there. If you are not happy have the resident page the fellow doctor doctor on call. That is there job. Ask for one of those heat packs for her site. My son loved these and they did help. If the pain continues, ask if they can up her dose. They had o up my sns2 times before they got the right dose. Don't let them let her suffer. I would recommend letting them give her thecantibiotivpcs. They did not prescribe them at first and he developed cellulitis and it took 5 rounds of antibiotics to clear his infection. He was in more pain with the infection than the tube placement. Try to prevent infevpction. I will pray for you both tonight. If you are not feeling ok with things, tell them. The goal is for her to not be in pan and to be comfortable,
 
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Lety

Guest
update on daughter. she wasn't able to urinate they placed a catheter for 12 hours, they took it out this morning and she went by herself, no bowel movements yet and they are going to do an enema in a few minutes. She is still sore but Lortab is taking care of pain. She is supposed to start using her brand new feeding tube tonight. Not seeing her in much pain makes me feel better. Now I need to learn how to do the overnight feedings which is what the doctor wants us to do. Thanks for all your prayers and advice.
 
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ToriMom

Guest
Hello!
Let me know if you have any questions I can answer. We have had two g-tube surgeries. My daughter is twelve now, but she has had a feeding tube since she was less than two years old. Did your daughter have a fundoplication or Nissen to prevent reflux or aspiration? That can lengthen recovery time. I'm sorry she has to go through this....I know it is so hard to watch them be in pain, especially as young children.


Sending healing and supportive thoughts,
Michelle
 
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Lety

Guest
daughter had her first overnight feeding last night, we are still at the hospital and probably we will be discharged today, she was able to have a bowel movement yesterday and urinate by herself. She has still has the stitches and probably will be taken out today. The feeding tube site looks good and even that she still has pain is not really bad. I feel a lot better now. I have a question if someone could help me, daughter is pancreatic insufficient and they gave her 650 ml total (65 ml an hour )for ten hours. They wanted to give her 3 enzymes at the beginning and for when she wake up 3 more. My question is since she was diagnosed I've known that enzymes work for just 30 or 40 minutes, how is the food in the middle of the night going to be digested if the enzymes won't be working by then? Should I wake her up and give her more enzymes ? She is pancreatic insufficient. Thanks a lot
 
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ToriMom

Guest
I sent you a private message so let me know if you don't receive it because I have had messages "disappear" on here before...very happy your daughter is recovering well.
Michelle, mom to Victoria, 12 years old, gtube club for over ten years. :)
 
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emacsurak

New member
We are going through the same thing. After MONTHS of trying with ng feeds- our twin girls had g tubes placed two weeks ago. (they will be one in two weeks) It was a really hard decision and one that I am still second guessing- but they are happy and smiling- you wouldn't even know they had surgery. They were a little uncomfortable while the stitches were in but now they are great. Their reflux is almost obselete, they are more willing to eat during the day, and there overnight feeds have increased. I am hoping to see the progress in the weight check in two weeks.
The over night feeds are great- hook it up... run it down the leg of her jammies and out the foot- through the bars and tape it down. This way they can't get a hold of it.
If you want to talk- I am about 3 weeks ahead of you in the healing process.
 
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Lety

Guest
UPDATE ON DAUGHTER, daughter had surgery last Wednesday, we left hospital on Sunday and did our first feeding at home Sunday night, last night we did second feeding, went better than Sunday, we did 50 ml. and hour for 10 hours. She seems to tolerate well, had a couple of belly aches during the day and they went away minutes later they started, since she started the feeding her appetite during the day is almost non existent. That worries me. She barely ate yesterday. Should I use the feeding tube during the day too? doctors didn't mention any about this and I remember mentioning this to dietitian on our last appointment at CF center and she said they don't recommend feeding blended meals using the tube. What about Boost VHC? Could I give her this during the day using tube? Is it too tick to use tube?. Yesterday she didn't want to drink it because she wasn't hungry.. she drank 1 ounce of Boost VHC at 9 am, then around 12, she had 1 chicken nugget and half glass of whole milk, for dinner half a cup of pinto beans with 2 ts. of oil and half glass of milk. Please give me your advice. Emacsurak, I was wondering about how the tube would reach the belly after going through her legs :) no biggie, I should apologize for my silly grammar and spelling. Thanks to all for all the advice and for caring for someone you don't even know. I totally love this site and all the websites that help us to live with CF.
 
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emacsurak

New member
So-
We got 24 inch extension kits. This give you a little more length (only 12 inch comes with the button from the hospital). They have Mini One but are using the Mickey Extension kits. So we get about 3 feet from belly to when the tube needs to start making its way up the bag.
Also, we were worried because at first the girls wouldn't take bottles at all and they were barely eating. The dietician explained that it would take time for them to get used to the new feeling and just like a person who eats and eats and eventually stretches out their stomach to be able to eat a whole large pizza- so would our girls stomachs reach a point where they would stretch. They explained that is why you up to feeds by 1 mL every week. It gives the body a chance to change and adapt slowly. Sure enough- the girls are starting to eat like champs again. But only in the last week and a half or so.
Hope this helps, and good luck with the granulation!
 
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