Nowhere
18-12-2008, 12:13
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
:hissy::hissy::hissy: why is life DO hard :hissy::hissy::hissy:
Still waiting on dietician to call grrrrrrrrr
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
:hissy::hissy::hissy: why is life DO hard :hissy::hissy::hissy:
Still waiting on dietician to call grrrrrrrrr