Not borrowing trouble ahead of time, just enjoying each day with Beatrice.

[cupofteaplease]

Thanks to Thumbwitch for inspiring the title of this new thread.

I will do my very best to minimise my worrying about the future as none of us know what it holds. For now, it's all about celebrating Beatrice's life today, every day.

As always, please feel free to follow us on our journey, and thank you in advance for the wonderful advice I am bound to receive from fellow parents, of SN children or otherwise.

Here's to a positive, uneventful thread!

I feel like everything will be fine tomorrow, Bea is such a little fighter and an inspiration. I wish I could come to Tea for Bea although I fear I'd just want to eat Bea, she's so deliciously adorable and cute! Although she's getting so chunky now, she's probably past the dunkable stage

Will be thinking of you in the morning x

Hope today goes well x

Hope all goes well today.

Hope all goes well today xxx

Crossing everything ....

Hope everythings gone well for you and Bea today! xxx

Thinking of you and your darling Bea today.

Thank you for the best wishes- Home Sweet Home.

Dh got to the ward at 7.30am and we were on our way by 7.45am. We arrived at Oxford at 9.45 due to traffic and Beatrice went down to radiology at 11.30. They did a fantastic job and Beatrice was much less distressed than before. Her tube is now back in place and she is enjoying her milk. Oxford told us that we now have open access to their 24/7 radiology department via the ward, so if the tube comes out again, Beatrice can go straight in. They mentioned that had the situation been explained to them properly by Bea's doctors, she could have had the procedure on Saturday...

Secondly, when I looked at the referral paperwork, it stated that as well as the extensive cortical dysplasia, lissencephaly and central arthrogryposis that we know about, they also describe her as having cerebral palsy. I had no idea at all that she had this too. In the grand scheme of things, it doesn't even matter, but I was just surprised it had never been mentioned before.

Respite- I received an email today to say that Beatrice's case had gone to panel, and it was agreed that she meets criteria for home care. However, they stated that she already receives 4 hours a week- um, no she doesn't! It was promised back in February but nothing came of it. So I ended up on the phone to various people, and finally received an email that goes some way to explaining themselves. However, we are still no further along with the respite plan- the lead professional has told us a nurse will be coming round at Xpm on X day. Well, at such short notice (the first session was this afternoon?!?!), I already have plans. The whole thing is utterly ridiculous. Oh, and they kept referring to her as Beatrix which isn't even her name.

Do you know what? Tomorrow, I probably won't give a damn, but today I am so emotionally tired, it's all seemed too much. I just want to cuddle my children and go to bed. Unfortunately, I had to come home to a house that has been left to its own devices since Saturday. Oh well, I guess the mess will keep until tomorrow and I can tackle it then. Tonight, I can't take any more. I'm just so thankful that Bea's tube is in place and we can start getting back on our feet, she was doing so well with her weight gain. Now I am home, I can focus on preparing for her tea party fundraiser too.

Argh at Hospital doctors again but am loving the new ones at Oxford. I know this has been talked about before and understand that its an added pressue but i really do feel you should contact PALS and get them to take on your frustration with the hospital, if only that if something happens again you will be able to send them a quick email and let them deal with it

Grr at Respite people, hope that get their act together ASAP

Personally, I would do exactly what you have planned and snuggle up with your girls. Leave the house until tomorrow or even the day after and just chill out together xx

PS have held off posting card until you were home so will stick it in the post tomorrow x

Great news about the tube and the easier access at Oxford if you need it again.

I just feel like banging my head against the wall on your behalf at all the mal-administration and lack of joined up thinking that's gone on concerning Bea's care. Unfortunately it seems all too common across the NHS, though there are many wonderful individual staff and good care is available. I just don't understand why things can't be more efficiently and thoughtfully done. No wonder you are tired. Do what you need to do to look after yourself, and don't worry about the mess - it will get done eventually. Can you ask someone to help you?

at some MNers being able to cuddle the gorgeous Bea at the Tea. Hope you have a wonderful time together.

So glad the tube is back in and that you are all back home.
about the fact that it could have been sorted last Saturday but wasn't due to incompetence poor communication. Also that you find out snippets of info about the diagnosis in referral letters and not told face to face. It is always possible that the letter may be wrong - it has been know when written by junior doctors. Just one to check with the consultant next time, I think.
I could write you a book on the trials and tribulations of home nursing care, I'm afraid. Don't go thinking it is a service to make your life easier and to fit in with what would suit you and yours!!! If it's anything like the service we get, it is run to suit the staff who work there and we are expected to be grateful for any crumb that they offer (regardless of what the assessment says).
Oh and yes, the housework will definitely wait until tomorrow - or even the day after if necessary!!! Get some rest and spend some time with your DH and DD's.

Glad they got Bea's tube in place and very much hope you get a good night's sleep Cup, and that the respite comes in asap x

I think that's the thing- individually, we've met some wonderful professionals. But together, as a team, it's not been the most well-oiled machine... Communication is really lacking, I feel like each child needs a single professional who coordinates everything. I guess the NHS can't afford PAs for babies

bigbluebus I'm already getting that idea about home care, I'm not sure it's for my benefit at all!! I best work on my grovelling, pitiful face so they know just how grateful I am!

Glad Bea is home and tubed, Grr to apathy you have had to deal with.

So happy about Bea's tube; have been anxious about her all day so thank you for updating. Hopefully you have closed the kitchen/ bathroom/ any other messy room door firmly now, have enjoyed cuddles with the Teaset (maybe even DH if he's about to do some tidying...?) and are now enjoying your eponymous hot liquid refreshment x

So glad the tube is in. What a huge logistical job you have as well as emotional. It is so unfair that you have to deal with flawed systems and poor communication.
Why not re-badge Tea for Bea as Clean for Bea? Those lucky Mners who are going to see Bea could each tackle a corner or cupboard. I would!

Great to here you are home. I was wondering how your other 2 DDs are getting along.

Mess will keep. Just hold those girls tight.

You won't believe this- her tube has moved she's just vomited milk everywhere. Waiting for Oxford to call back. Bad times

Cup. So sorry. I used to change my DD NG tube up to 8 times a day. I begged them for a g-tube. Have they discussed the likelihood of a jejunostomy with you both yet? But then i have a distant memory that you said that they were unhappy about performing a GA on Beatrice? Anyway, some reading for you.
useful info

Oh Cup - am posting as it's late, I've just seen your post and I don't want you to think you are alone... hopefully Oxford will help sort it out asap and perhaps the movement of the tube is a case of "teething" (as it were)??

At least Beatrice has had a day of successful feeding so will be feeling nice and full and hopefully it will be sorted out better tomorrow....

Virtual hugs to you all...

Oh Cup. You and Bea and the rest of the Teaset really deserve an easy run soon. xxx

Oh Cup . So sorry . Hope you get sorted very soon. Thinking of you x

Thinking of you and hoping you get this resolved asap. At least Bea has had a recent run of weight gain. Hugs to all. xx

Oh cup and baby Bea

I was reading your first update with 's and ness. Then I got to your PA comment and ed.

I think if someone who only 'knows' you and Bea through MN can feel such an array of emotions it's no wonder you are emotionally exhausted. I'm so sorry Bea's tube has moved again.

I know someone who's had a similar situation. Pupil in my school. Please PM me if you want the information - I don't want to overload you until your ready.

Big hugs, love and prayers for the Teaset.