argg bl**dy hospitals grrrr

[Nowhere]

Ok So im a little ticked of right now, As some of you know miki is a somewhat complex kid and has many appts at the hospital

Anyway She is ment to be having a GO reveiw today I wsant sure if it was at 3 or 3.30 so i called out patients direct to confirm to be told oh sory mam its been rescedualed I was like excuse me why wasnt i told, She transfered me to the clinic, to which she tells me that the appt is for 3.40 i said oh ok cool thankks for that then she says OH no hang on its been reschedualed I ask her to when she has no idea, I ask if i wsa going to be contacted about this and she gets cranky and tells me she doesnt run that clinic and is filling in and has no idea GRRRRRRRR

So i call HITH (our hospital in the home coordinators) and she says yerp its been rescedualed but not sure when, She is now contacting the department to find out what is going on.

Its not like its not an importat apointment this wil be her FIRST GI review after coming of TPN ( if food) and she is NOT growing and not doing well, I know that the GI wil be anoyed about her weight and likely have a go at me, Even though every single week when we go in for HITH clinic and she is weighed the nurses and I page the dietician and I wait for like an hour to see her then she tells me all these plans she has and doesnt do anything, I am working my @ss of to get miki to gain wieght this kid feeds 24 7 and i am NOT kidding or exagerating she is on her milk pump all day everyday and night i dont even un hook her to bath her as i know she needs all the calories she can get, she is on neocate and is not growing and the dietician is ment to be changing her over to a even more broken down forumla that they make up at the hospital but has been figuring it out for 4 weeks

I was ment to get a call from the dietician today at 10.30 for a phone reveiw and stil havent had one, I called the dietician dept and they said she wil call but is running late, ok cool i can deal wioth that but I really hope she has a plan

So unless the HITH clinic call back with a RS appt sometime in todays clinc, then we wont see him until next year, Keeping in mind this guy has a 10 month waiting list. We dont see him regulary as there isnt much he can do for her but he can organise the new feeds with the dietician ( as she clearly is having trouble) and he is ment to be going over the tests DD had in hospital to do with her metoboilc disorder

We are at the hospital tomorow with the pead clinic and she too has been waiting in mikis GI appt for some time as we need to reveiw RE the Mito issues

I understand that they are busy and un planed things hapen in hospital god knows DD has taken up lots of there time in the past, but it doesnt make it any less frustrating

I have a child that can NOT grow dispite everything we do, that last time we seen the GI team they put her on IV feeds and said that if she doesnt start growing of them she wil be on it permenantly NOT what we want im trying my hardest to get her to grow with NO help

why is life DO hard


Still waiting on dietician to call grrrrrrrrr

[Benji]

have a go at you?! How dare they!

If only they knew how hard you work for Miki, they would eat there words and certainly wouldn't stuff you around like they are!

[KatiesMum]

[Nowhere]

have a go at you?! How dare they!

If only they knew how hard you work for Miki, they would eat there words and certainly wouldn't stuff you around like they are!

thats the thing all her drs know how hard we try except the GI team, I THINK they realised when we had her last LONG admition when she lost weight in front of there eyes and had to be put on TPN but for some reason I always feel that they blame me, All becuase one of the Gi ages ago got it wrong and didnt realise that miki was as bad as she was until she perforned the corect tests then she reaslised the severity and DD was going for surgery a few days later but that feeling is always there KWIM, even though the issue is ironed out if that makes sense

[naiwen]

Grrr that is ridiculous , we have dramas with dieticians as well, they say they will do a phone review but never call .

I can only imagine how frustrated you must be feeling right now.

Can Miki's main paed give them a kick up the bum?

[Baldie's Mum]

ohhhhhhhhh let me at them..................

Amy Gimme their number!!!!

ohhhhhh how dare they make my girl so cranky and upset and to question your ability.....your a fantastic mummy!!! Dont ever think otherwise!!!

LET ME FIGHT EM AMY!!!

[Benji]

thats the thing all her drs know how hard we try except the GI team, I THINK they realised when we had her last LONG admition when she lost weight in front of there eyes and had to be put on TPN but for some reason I always feel that they blame me, All becuase one of the Gi ages ago got it wrong and didnt realise that miki was as bad as she was until she perforned the corect tests then she reaslised the severity and DD was going for surgery a few days later but that feeling is always there KWIM, even though the issue is ironed out if that makes sense

Ikwym.. I always get this 'feeling' at hospitals too, especially from nurses for some reason.


I hope you get this sorted out soon, our healthcare system is shocking atm and it's really, REALLY unfair on little ones such as Miki

[Nowhere]

thanks guys

Julie yes her pead has kicked them up the but so many times as wel as her surgen but it basicly comes down to too many GI kids and not enough GIs, Pluss the fact that miki is a little monkey and makes a habit of confusing Drs

I dont think that they question my parenting as such i think maybe they asume that she isnt on her feed as much as she is ment to be KWIM I know many kids on 24 hour feeds that are not actualy fed 24 7 KWIM, Miki always has been and its actualy obvious cause when ever she has to fast for surgery she goes hypoclycemic after an hour or 2 and need IV dex so its kinda obviuos that she is fed all the time at home KWIM

She is in the too hard basket


Oh and its not 11.43 and stil not call from the dietician GRRRRRRRRRRRRRRRRR

I have a feeling i am going to loose it tomorow at the pead appt thankfuly out pead is lovely, the frustrating thing is though I have lots of resp, apnea, seizure issues to go though with ehr tomorow also and did not want to spend the appt going over GI stuff that was MENT to be sorted today

I just so sick of this cr@p lately, I hate this roller coaster and I want to get off, i want to have a hospital free christmas

[reAllytee]

GGGGGGggggggrrrrrrrr

Do not let them put you down !!!!

Do not !!!!!

Even our GI says that no doctor has any right to do so !

Some GI's seem to think they know all so when you tell them A is happening their response is " no that cant be possible " same with some Paed's

I swear if I have to say one more time to some doctor who questions whether I feed my son that I do & try, I think something bad will happen lol.

And as for dieticians

I cant believe they re-scheduled without contacting you thats really really poor !

Is there another GI that you could try out ? It sucks changing but sometimes a 'second' opinion of sorts can help cause they may try a differing approach or look at different ideas ! I know its hard though when she is so complex ....

Bah.

[Nowhere]

stil no call from the dietician 3 hours late GRRRRR

The Gi we have honestly ally is really nice its more my self I get woried of what they think KWIM, they know the severity of mikis issues, The one we had origanly didnt (until tests confimmed she was way worse then she or I had thought KWIM) They are good drs, Im just peeved of that we are now in limbo as to when the appt is and we have NO plan as to what to do KWIM