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I could use a shoulder to cry on...

(19 Posts)
BeeMom Thu 22-Nov-12 18:50:07

A bit of background - Bee is TPN dependent, and has been for 5 years now (all of her nutrition comes from an IV catheter in her chest as she is unable to digest anything). The TPN brings with it the risk of liver failure (hers is failing) and severe, potentially fatal infections - we have a love/hate relationship with it, it keeps her alive, but has nearly taken her from us half a dozen times in the last year alone.

In the last several months, we have been trying to decrease the TPN she receives and increase her gastrostomy feeds to see if she has recovered any function at all. It seemed to be going reasonably well, so last week, the GP had me make a big change, and have Bee run her TPN for 12 hours overnight, and then tube feeds through the day. We went in for her weekly hospital visit today, and she has lost over 1/2 kilo and her bloodwork looks terrible across the board.

I shouldn't have, but was really feeling encouraged about this - to the point that if she was able to manage it and we could continue with the decrease as the GP had been suggesting it, she might have been TPN-free by Christmas for the first time in years.

Now, I am really doubting myself - is this for her or for me? I am the one who is responsible for all of her cares, and I burned out ages ago. Intellectually I know that it is reasonable for us to try - and if it works, so much the better, but emotionally, all I can think is "why should I even try if it is going to backfire?".

Her disease is degenerative and terminal - foolish me to hope for improvement sad

whatthewhatthebleep Thu 22-Nov-12 19:16:14

I don't know much about this at all but sending you a supportive hug and hoping you won't feel so defeated by this set back....you're always going to want and need to feel you are trying everything...trial and error...but always worth trying isn't it?...always

((((HUGS)))) and strength to you x

Bluebirdonmyshoulder Thu 22-Nov-12 19:16:15

Oh Beemom I'm just so sorry. Here's a metaphorical shoulder, let rip sweetheart.

I have no doubt that you're doing your absolute best and no-one can second guess your decisions.

You sound like you need a break. Is there anyone who can look after Bee for a day or a weekend? Or longer?

frizzcat Thu 22-Nov-12 19:19:08

Don't know anything that can help - but honking like a crazy goose for you

EllenJaneisstillnotmyname Thu 22-Nov-12 19:23:32

Hard decisions, BeeMom. Only you and your DH can make them, I suppose. (((hugs))) and honks.

pinkorkid Thu 22-Nov-12 19:27:11

Not at all foolish to hope for improvement, very human. I'm just very sorry that it hasn't turned out well as it might have done/ought to have done if there were any justice to these things.

TaggieCampbellBlackFriday Thu 22-Nov-12 19:51:04

My shoulders are broad. I have tissues [tea] wine and [hug]s

TheLightPassenger Thu 22-Nov-12 20:00:37

((BeeMom)) doesn't sound remotely selfish at all, you want Bee to avoid the risks of TPN and wanted to wean her off it, but unfortunately it's not run smoothly so far. I hope that things improve for her, and next week's visit is better.

mymatemax Thu 22-Nov-12 20:12:12

feel free to soggy my shoulder.
All your instincts as a parent makes you want to sieze any opportunity to see an improvement.
There was a chance it could have worked so you had to give it a try. Dont give yourself a hard time.
is the GP usually the clinincal lead? Does he usually take the decisions re your dd's care, if not maybe its worth getting a second more considered opinion if any changes are to be made in the future.
We only had short term TPN use (a few months) but i can remember those 'risk' conversations with the consultant when ds2 was still unable to digest after a month.
You know that you will pick yourself up & decide a plan going forward with her consultant, just allow yourself a few tears in the meantime.

zzzzz Thu 22-Nov-12 20:18:58

Set backs a fears here this week too. Crying with you sweetheart. So tired of keepin on "keepin on".....and ours not nearly as crushing as yours.

Honk and howl.

coff33pot Thu 22-Nov-12 20:39:11

oh bless your heart ((hugs)) and a soggy (its been raining) shoulder xx

There is nothing selfish about it. When there is a light, however small at the end of the tunnel as a parent we would all take that chance and try for it. You love her dearly and positive thoughts and hope is what gets us all through.

I am sorry it did not work for your DD and I will hope with you that there is an improvement next week x

cantbelieve Thu 22-Nov-12 20:45:53

Im so so sorry, Im not much use at the moment to anyone and I sooo understand the burnt out bit, but Im here and sending virtual hugs over to you and bee, you are human like the rest of us and you cant help but hope for the best amongst all this unfair crap. You are a truely amazing lady x

NoHaudinMaWheest Thu 22-Nov-12 21:28:34

I don't know anything at all about this problem, but it is so difficult to make decisions when no one can predict the outcome. Of course you want and hope for things to be better and it sounds as if this was worth a try. It is natural to be disappointed and in your circumstances fairly devastated too.

I'm beginning to think I might have made a wrong decision recently with regard to Ds's care (nothing like as serious as your situation) but I cling to the words of his specialist psychologist: There are no right and wrong decisions because none of us have a crystal ball.

Bluebirdonmyshoulder Thu 22-Nov-12 21:36:33

Beemom just been reading your amazing blog. No-one can doubt your all-round amazing-ness. You're incredible, give yourself a break.

And have my first ever HONK.

PolterGoose Thu 22-Nov-12 21:42:00

Honk and (((((hugs))))) from me too

We have to try things, sometimes it pays off, sometimes not, but we will always strive for progress for our children.

bialystockandbloom Thu 22-Nov-12 21:50:54

Oh you poor lamb. What a dreadfully hard responsibility you have to bear, and it must be so, so hard to have to try and make such decisions. Ultimately you will continue to do what you know to be best, I am sure she could not have a better mother than you. I have no advice I'm afraid, but am just adding to the hugs here, and offering another shoulder to cry on and a hand to hold ((((Beemom))))

BeeMom Fri 23-Nov-12 13:25:24

Thank you all so much for your support - I was in a dark place yesterday and feeling awfully alone. I woke this morning and so did Bee... it is another day smile

Bee will be going into the hospital today (hopefully only for the day) to get blood products to bolster her to get through this rough spot. We all want this to be a bump in the road - and until it is proven differently, we will assume it is.

mymatemax It is actually not Bee's GP - all of her care is overseen by her paed, who is the chief of paediatrics at our community hospital. The pead also runs the satellite oncology clinic, so she knows her stuff. Bee's consultants are a couple of hours away, so the paed consults with them as necessary. To be honest, I think that the paed is as anxious to see Bee reduce or stop her TPN as much as we are - there was one child similar to Bee who passed away in May... no one wants a repeat any time soon.

Firsttimer7259 Fri 23-Nov-12 13:31:53

Quiet honking here too

zzzzz Fri 23-Nov-12 14:48:21

If you could look left and right you would see geese flapping, and honking.

Hang in there.

HONK

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