Is it normal to be this upset about the feeding tube? I feel so deeply sad. I can't shake it. It feels like I found out she has cancer all over again. I just don't know why it is hitting me so hard. The placement was very rough. It is the feeling of gagging that is really getting her. I am so bummed that she has to endure this. They said I could start the formula tomorrow morning. For all I know, it will get worse, or better. I can't remember much from that two hour class except that if I told Hannah to be calm and focus on breathing out she would stop gagging. Oh god, I just feel so damn bad for her.
I think one of the emotional hurdles you face with the feeding tube is the same one you face when your child starts to lose his/her hair -- it's an outward manifestation of the fact that your child is very sick and has cancer. There's no ignoring it. I recall when Elke's hair started falling out in handfuls during Induction -- stoic, strong me really felt like I was going to lose it. And realized, at the same time, that it was silly to get so upset about losing hair when the cancer should be the focus. But it's just an outward reminder, every single time you look at your child, of how sick s/he is.
Perhaps there's something like that going on with you -- it would be totally natural. When Elke got her feeding tube I was relieved, because she was literally starving (but that relief dissipated quickly when she couldn't tolerate the feeds...). But yes, seeing that tube sometimes felt like yet another slap in the face. But these tubes save lives. Elke would not be alive without one. Look at the tube as reassurance that you will be able to provide your child with adequate nutrition while she is battling cancer, which is so vitally important. And the tubes are not permanent. It is completely reversible. Just necessary right now to help your daughter through a difficult patch in her treatment.
I wouldn't consider you "abnormally sad." We all have those moments during treatment when the enormity of what we are facing engulfs us. You have to allow yourself these moments here and there. It's totally valid for you to feel this way right now.
The gagging will get better. But it takes time for them to adjust. I'm impressed that they had a two-hour class for you. I recall the nurse walking me through it, and then telling me to give it a go. But then again, I'm a visual, not auditory, learner, so that was probably for the best!
Hang in there!
Thanks for all the nice words. I think the hardest part is that she had been eating so much more this week. That thought of, we could beat it, is still there. If I take a step back though, she has been at or just right below cut off weight for a month now. So, I guess she does need it. As I kid, I was way too into "experiments". I put a battery in a light socket, you know, to see what happened, and that sort of thing. Well, I also ate something poisonous and had to have my stomach pumped. I know it is not the same as the feeding tube, but the experience is similar to her's yesterday. It was really awful. However, she slept great last night, infact, it is almost 8am this morning and she is still sleeping. I suppose I will survive.
Ann, how did you know she couldn't tolerate feeds? What did they mean in class when they said her first feeding will feel weird in her stomach? Does that mean she will throw up alot?
Our DD got a NG tube in during Interim Maintance (which turned out not to be a break for her at all). She had a very difficult time swallowing food, her meds, and one of the actions to place the tube is to swallow, so that was actually one of the top three or four most intensely traumatic times during her treatment.
However, three days after getting in the tube, she was feeling so much better that she was out to a movie with a friend (we were in the restaurant around the corner hovering). I couldn't believe what a dramatic change it was. We'd spent all the weeks of IM trying to get her to eat something, anything, and watching her get weaker and weaker, and then like a light switch went on, we had a month of calm and building strength. (then came the last half of DI, but that's another story.).
Our DD was 14 at the time. She went to stores and to school with her NG tube. She was self conscious, but she really wanted to get out. After a while, she said, "you know, most people just aren't paying that much attention to anyone else," so she didn't feel too many stares. Sad and comforting at the same time I guess.
Our nurse said they use tubes more than they did in the past because it allows kids to withstand the treatment better. It sure was essential in our case.
Just jumping in to tell you I get exactly how you feel. My son had NG tube about a month into treatment and that was one of the hardest things to see. As far as not tolerating feedings--it can take some time to find the correct formula and duration. I think we went through 3 different types before we found the one that worked best for Jakob. Jakob said his stomach felt like it was getting filled up with heavy milk. Remember going from not eating to being basically force fed is a real change. Jakob did throw up, usually in the morning, the worst is that sometimes that causes the tube to come up also. We got to the point that we could put the tube back ourselves. I know some older teens that took the tube out in the morning and replaced it themselves at night for feeding so they could go out without being self-conscious. Like everything else you adapt, yes it sucks but......
Remember you are not in a battle against the NG tube--it is the cancer we fight!!! One more tool to help our kids win the fight of/for their lives!
I resisted the g-tube that replaced my daughter's NG tube for a long time because I felt like some sort of "failure" that I couldn't get my daughter to be able to eat properly. I kept on asking for more time, hoping beyond hope that the next week would be the week when everything would turn around and the need for the tube would disappear (also, the g-tube placement entailed surgery, which flipped me out even more). So I understand the feeling of, wait, hey, just give us a little longer to get this going. And looking around at all the other kids on treatment that don't need feeding tubes, and feeling, even though it made no sense, like I had somehow failed my daughter.
But the truth is, as I think you are realizing, that by going through with the feeding tube placement and educating yourself to administer her feedings, you have done anything BUT fail your daughter. You have probably helped save her.
As for my comment about Elke not tolerating her feedings, pls don't worry about that. I should never have even mentioned that within this context, but I was extraordinarily sleep-deprived and it was a miracle I was even making sense! Elke had to have a feeding tube (and still has a g-tube) for two reasons: first, she wasn't eating, but even more pressingly, her GI tract was pretty-much non-functioning (which probably itself induced the non-eating). Even when she was able to eat something by mouth, her GI tract just couldn't handle it. She had severe, life-threatening diarrhea and severe vomiting too. So she had to be placed on a prescription formula of elemental nutrition, and be on a feeding pump 24/7, sometimes at as slow a speed as 5 cc/hr. She went on and off tpn throughout front-line treatment. So she was a bad candidate for tolerating the formula to begin with. Please don't get scared for Hannah based on Elke's experience.
What formula is Hannah on? At what speed do they have you adminstering the feedings? I'm assuming you're not doing bolus feedings, but perhaps I'm assuming wrong.
If you have ANY questions about NG tubes, feeding pumps, etc, pls feel free to bounce them off me (and the others here who have gone this route too). And the pumps take getting used to. I don't know if Hannah will be using a pump at night, but if so, be prepared for some messes at times when the connection pulls out. Nothing too serious, just messy, and it's good to be prepared.
Also, one tip: since the insertion of the tube can be so uncomfortable for them, and they have to be changed every two weeks if I recall correctly, look ahead to see if there is an LP coming up or anything requiring sedation, and ask if they can do a tube change then. We managed to do that at least once, and it was so nice for Elke not to have to deal with the tube change, the tape, etc. Just something to keep in mind. But I am hoping that Hannah will not need it for so long that this is even a concern!
I have been thinking of you and Hannah today and hoping that things are going okay with her first day with the tube. Always feel free to ask questions/vent/whatever here!
Carrie -- you just have to keep remembering that you have to do what is best for your child. We didn't want to do it, but when Sam got into DI, and had lost 30 pounds (he was 15 and 178 when he started), he really needed the nutrition. It really helped him.
Keep in mind it will be temporary. They will get used to it. (it's amazing what our kids can get acclimated to.) And it may save their life.
I can feel your sadness, but Doug and Ann are right -- you are saving your daughter's life. You do what you have to do and remember that this is temporary. Hannah needs this right now, not forever. It's ok to feel sad though -- I think it would be kinda weird if you didn't! But, hopefully, you also feel some relief knowing that she now has the ability to get the nutrition she needs.
I remember when Pete got his first NG tube, I was so against it and battled against it the whole way. I was so freaked out about the whole idea of it. But once I accepted that it was going in (they wouldn't let me veto the idea at all), it was a relief as he really needed it, and a lot of the stress disappeared of trying to get him to eat. I couldn't believe how fast the weight went on. Must have been a kilogram (2.4 pounds) a week. So it really was a life saver. And when he needed his second one further down the track, I didn't fight it nearly at all.
Pete did gag the first day, but that stopped by the second day.
Anyway, I hope that you both get used to the tube and that it makes a great positive difference.
Hugs from Bridget
Sorry you are in this bad spot. I think Elke's Mom is right, that outward manifestation is so hard. We managed to avoid the feeding tube. I will tell you that I have heard so many parents say that it was truly a relief once they got past the first few days. It is OK to be sad- and I understand about being surprised at the level of grief. One more hard thing to endure that most children don't even know about. Our hearts break on this journey a hundred times. Sometimes I felt sad about the stupidest things without warning. If that happens (b/c this is a big one) just go with it. There isn't anything our children face that isnt ready made for tears- we just suck it up most of the time!
Carrie, it is sad so it's ok to feel sad. Yes, it's necessary and thank God the doctors have the tubes to use, you know all that intellectually, but emotionally it just all sucks. I think that we are so good at adjusting to our new normal that we don't really give ourselves full credit for the crap we have to do that we do day after day that was all new and made us sad at first and now is just what we do. Think about it, before our kids were sick could we have pictured ourselves flushing broviac lines? Giving infusions? Holding our kids down so that 3 nurses at once could give them shots? Telling them they couldn't go to school, go to parties, eat McDonalds? Now we do all those things. and more, all the time and don't even think about it. It's not that I think we grow callous we just evolve. As we've all said, it's not like we have a choice. So, now, there's another new thing in Hannah's life that she doesn't like and that you have to deal with and that sucks. But you will deal, and the day will come that you'll be posting to someone else, "Here's how you handle it..."
Lotsa Love coming your way,
Carrie, I'm so sorry Hannah has to endure so much, we never had a feeding tube, but came so close to it. Somehow Casey responded to Megace well, and he avoided it, but, I remember when out Onc. was talking to me about it, I felt a lump in my gut. Unfortunately it's another hurdle you will have to overcome, and you will. I think I've said it so many times in my posts, I'm a huge believer in a good nourishment, they can go through hard chemo much easier then with malnourished body. Please think of it as a temporary help for Hannah to pull her through the rest of the hard treatment.
I'm sending you a lot of love, from Colorado.
I read your post with tears running down my face. We work so hard to keep our kids on the path of chemo, trying to avoid so many side effects, and when we have to face yet one more procedure, or something, we feel failure and our kids seem to suffer. We don't fail. We tried everything and then some. We say no to everyday childhood opportunities. We learn all kinds of acrobatics to help our children swallow pills, morsels of food, endure chemo, etc. you name it. The parenting 'tricks' in my bag are amazingly extreme, and we all know this.
I am sorry the tube was so difficult for her. I am sorry for the pain you felt watching, wanting to help and wishing somehow to change this all for her.
I am happy, though, like the others have said, that damn it, we have tubes to put nutrition in the little bodies when they need it.
I hope someone hugged you really tight today, or maybe you took a minute and let the tears run. Then take a minute, please, and know you are being the best Mom for your daughter. Really, it's an 'abnormal' deal we have. For that, I just ache in general.
I am so sorry to hear you are struggling right now. Leann had the feeding tube placed on Wednesday, so I definitely understand the feelings you are grappling with. Leann had a really hard time with the placement since she's not used to swallowing (it's been nearly month since she's really had anything to eat or drink and isn't even really tolerating her meds P.O), so she actually vomitted as they were trying to place the tube and they ended up sedating her for it to have it placed. Leann is so GI compromised that she's been placed on a special formula for G.I. compromised patients and right now is only tolerating the formula running at 15 cc's/hour (she is being gradually transitioned off the 24/7 continuous TPN infusions as well). Leann is having a really hard time right now because as she told me "Now people really will know I'm sick." The GI doctor hopes to eventually transition her to only using the tube for feeds at night, but right now she's so severely GI compromised that she needs a slow, continous rate of formula. I hope Hannah handled the tube/feedings okay the first day.
Hannah has done really well with the feeding. She has not thrown up once since they started. I'm still waiting to hear from the lady that gave the class. She didn't show me how to use the pack and when I did it myself the alarm went off. Feel like a genius!
I think the hardest part for Hannah is being tethered to the IV pole. She is still eating a normal amount and she is on 24/7 feeds at 55ml. Seems like a lot of food, but maybe they are trying to add weight quickly to her. I do appreciate all the kind words and advice.
She looks much better and I am getting a little more used to this. The physical limitations of the IV pole, the added elements of NG feedings, and the visual image of Hannah with a tube make it harder to feel like I am home with my normal girl. It is such a glaring reminder of how sick she actually is. It took me a few days to wrap my head around the sadness. Of course, it seems you all knew this right away. :-) Thank you for being there for me.
I think you'll find the pump makes a big difference. It was night and day for us. We were battling the weight loss dragon for a long time before we gave in. But things turned around very quickly and it was like a cloud lifted. I wish we had done it earlier.
You shouldn't need to be tethered to the pole. The pump has a battery and can operate unplugged. You can get backpacks for them but they're kind of expensive. It should be possible to adapt a school backpack for that if insurance won't cover it. The bag needs to hang from the top, I can't remember if the pump was sensitive to orientation... if it absolutely had to be square to the ground. I suspect it didn't.
For us it wasn't long before we were only running the pump at night. And I didn't feel like it was a reminder of a sick child. It made her stronger and enabled her to live a more normal life. It reminded me that she was getting better.
I'm so glad to hear that Hannah is doing well with the tube feeding.
Pete didn't get his ng tube till Maintenance and it was continuous at first, but then moved to continous at night and 3 bolus feedings at day. We just gravity fed those ones, which didn't need a pump. I even got his teacher to give him his lunch time ones at school.
I remember at first, I found the whole thing so confusing. But it didn't take long at all to get used to it. And then it was just so amazing seeing the weight piling on.
Anyway, so glad to hear that you are both coping well.
Your sadness is very understandable. We were also very upset when Mahima got the NG Tube. But then we figured it was best for her, as she was losing weight fast. I know insertion is tough, but they get used to it. Then she started picking up weight, which was great. After two weeks, she got the G-Tube, which again we struggled against initially, but had to relent in her best interest. Now over 14 months later (Mahima's in Maintenance) she still has it, we still use to supplement her nutrition (at least 1 can/day of Peptamen Jr.) and the 6MP and MTX (PO) or an other PO meds. She was on 3 can a day, initially. She always had big problem with taking meds orally after Induction. Since the G-tube it's been a breeze, so to say. She also has a PICC line (PORT got taken out within 2 weeks).
So don't worry, be happy. It's in Hannah's best interest and another hurdle she'll overcome with aplomb.