my son benjamin born on 3/12/10 lon gap oa, repair done at 7 weeks old,after op he did take a little orally and the rest gastrostomy fed, so we was discharged on the 30th jan, 10 days later we ended up back in hospital as an emergency with a stricture, he was admitted back in and had the replogle tube back in his nose being flushed every 15 mins, it was back to square one again, he had dilatation 3 days later and was discharged the next day, but after this he has never taken anything orally, all though i do try.
On the 28th feb, he got readmitted as a emergency once again, tube down his nose and waiting for dilatation…he had this done on the 3rd march, but the surgeon was really unhappy he wasn’t feeding orally and wanted to keep him in for another week so they could concentrate on his feeding and dilatate him again a week later, well he didn’t feed which i knew would happen and now they r saying he can’t go home until he is at a certain level and the nurses can concentrate on him!! well this is rubbish as speech therapy agree with me and think he should be at home where i can give him my full attention and work with him, and they know it is going to be a very, very long process as he has complete food aversion, and surgeons think it will happen over night!!
I am so annoyed with them, benjamin is 14 weeks old and has only spent 2.5 of them at home, i live 2 hrs from the hospital and also have a 5 year old so cannot stay there with him, i am at the point where i am going to tell them i am going to take him home, he is on a childrens ward, and the nurses don’t sit and do these things with him, and it is no good him being stuck in a cot 24 hrs a day, any advice please xx
I only have experience of working on oral aversion when my son was much older. We relied on tube feeds until he was 3 years old. He then had a week’s stay in hospital to starve him and encourage him to eat. It didn’t have the slightest impact until the last day, when he ate a small amount of pureed chicken stew. They sent him home the next day, and we worked on it at home. In 4 months he went from total, complete, long-standing oral aversion to eating me out of house and home, just struggling with some textures. I agree it can be a long process and you will probably have to do more than the medics ever could.
I wouldn’t be able (personally) to be brave enough to stand up to the Docs alone, but I have found that getting someone onside can help. In my case it was one of the nurses - maybe for you its the Speech and Lang Therapist. Could they speak to the Doctors with you, so you have some back up?
Claire x
hi thank u for you reply, but yes the speech therapist are on side, i feel like surgeons have been great but it gets to a point where that is not there field.
I just want my baby home, and i feel like he is missing out on other aspects of his development whilst being in there, i know feeding is a issue but this is not uncommon in tof children especially ones who have had a long gap and waited for the repair! we are on the verge of a breakdown, well thats what it feels like and i am at the point where i really want to say i’m taking him home! i got told today by another mum that stayed on the ward last night that the nurses left him crying, can you imagine how heart breaking that is for us? i don’t want the surgical team to think i’m a fussy mum and i’m not wanting the best for benjamin, but i really feel at the stage he is at now, i am the best person to give him all my time and try things with him xx
Hi Claire
We had something similar with Jack in that he had lots of problems with strictures and dilatations and then wouldn’t drink. He was hospitalised 3 times to challenge him and on each occasion the dr gave up as he would take only tiny amounts for 4 or 5 days and was dehydrated.
When the time was right for him, we managed to wean him, at around 18 months old. It was hard, and a long battle but I totally see where you are coming from. At the moment, you just want your boy home, where he belongs. Then you can start to work his feeding out. As long as he is well and receiving nutrition, then he should be able to go home.
Do you have a paediatrician? If not, please get one you like. They will look at things from a more rounded approach (like you are) instead of a surgical approach. Glad to hear you have the support of your SLT too.
I think I would be taking him home too and I’m sure they can’t stop you. He isn’t in danger but just to save hassle, can you ask for a meeting with the surgeon, your paed and the SLT and say what you wrote in your post about you being able to do more with him at home. Either that or if they expect him to wean from the tube quickly, maybe they will convince your hospital to pay to send you to Graz where the appropriate intense support is provided. (I doubt it but saying it might get you home quicker)
Hope you get home soon and get to enjoy him
Jody
Hi Claire
I really feel for you- our daughter Isobel was long-gap and spent many months in hospital for the first 2 years of her life.We were so fortunate to live close to our hospital and were able to stay with her overnight every night she was in hospital. You are right that his oral aversion could last a long time, so you need to request a meeting with Benjamins surgeon, and get your SALT to be there. He may have concerns that he hasn’t fully explained to you, or might not have considered your long commute and family circumstances. Also have you got a community nurse that could offer support and convince him that they could monitor Benjamin at home? Maybe he’s concerned that he may need weekly/regular dilatations- it would be a nuisance for you , but you could offer to bring him back weekly for a check up on the ward. Just trying to think of ways you could compromise and get him home. You are likely to have a relationship with these surgeons for a long time to come, so you want to try and work with them as much as possible, but also show them that you are the best person to lok after your son.
Hope you get Benjamin home asap.
Joanne
hi everyone,
great news i spoke to surgeon today and benjamin can come home next thurs after another stretch on wed, he understood how much strain this is having on us as a family and agrees i am best to help benjamin with his feeding, so happy times once again xx
Well done, Claire,
My little girl Frances was mostly tube fed when we were discharged at 10 wks, everyone said she would thrive at home, and sure enough, within about 6 weeks her ng tube was removed. Well done for putting your point forward to the surgeon and good luck x
Jayne x
PS Claire,
Fran was only 6lb9oz when she was discharged, the week prev to this after her dilatation (she had them every week in the early days, she has had 9 in total but her last one was at 5 months) her surgeon would not let her come home. I was gutted at the time but he explained to me he wouldn’t let her come home until he thought she was safe to do so, he didn’t want us running into any trouble with aspirating, blue-do’s etc. at home, as she was still so small (the previous week it had took him the whole day to decide that she couldn’t come home, he was in such a dilemma about it). But at least we know that deep down, the surgeons do have our little one’s best interests at heart.
Jayne x
Hi Claire
Glad they are letting him out.make it clear you are totally clued up and understand the condition but for all involved he needs to settle at home and you have him for life so you need to get to know him and how to deal with his condition as you will be his main carer.As mum you have every right to say what you think.Golden rule, hospitals often wont let kids with on-going conditions out til their parents kick off a bit and stand up for them.Only then do they feel the parent feels strong enough after the initial shock to be an advocate for their child and is ready to go home.Neo natal told me this after a spectacular ‘mummy meltdown ’ in x-ray!All the best and lots of love
Anna x
hi everyone, thanks for the support, well benjamin is coming home on thurs, they are giving him a stretch tomorrow too!
We are coming home pump fed though, as this is the only way he isn’t sick, he is going to be fed continuous from 6pm-10pm then 6am-9am, and 1pm-3pm, i don’t know how we will manage with things but i am sure we will, i just feel like we have taken huge steps back and nothing seems to be going right for us, has anyone had any experiences with pump feeding at home??
xx
