Home & Family

Adapting to Change – Now Rainbow is Home

15th February 2016

This time last week we were preparing for Rainbow’s homecoming… We had no idea when it would happen but we knew it would be soon after the discharge meeting.  Never in a million years did we expect it to be the following day.

Almost a week on from the surprise of the doctors saying that Rainbow could come home and it feels like nothing ever happened. Rainbow has just fitted straight back in like a piece of a jigsaw puzzle.  The older 3 are enjoying her being home.  They are completely in love with her.

I seem to be the only one struggling with the change.

While I am incredibly happy and excited to have her back home; adjusting is taking some time. 

During her time in hospital (3 months remember!) I always had back up from a qualified nurse.  If I was concerned about anything, all I had to do was nip outside the room and ask them to have a look at her.  Now I have to rely on my own instincts (which didn’t send me far wrong before but still…)

During her time in hospital she had a NG Tube.  Even last going off she had the tube for feeding.  Now I don’t have that back up if she fails to take a feed.

During her time in hospital I had a myriad of advice avenues on tap 24/7… while we have brought them home with us, they aren’t as readily available now.

I will be honest… I’m finding it hard to adjust.  We have effectively been institutionalised.  For someone who avoided the hospital like I would have done the plague; I became far more comfortable at the hospital than at home.

I am doubting my abilities to care for Rainbow… I know I can do just as good a job of caring for her as the nurses did, if not better, but it’s scary. 

Luckily, to keep me occupied, we have a plan in place because of the 22q diagnosis.

Our health visitor will come out this week to do the all important weigh in…
We should expect an immunology appointment for a full immunology work up prior to her first birthday, so we will know if she is able to have the MMR vaccine.
We are waiting on phone calls from physio and dietetics to arrange appointments.
Her cardiology review is already booked for the 23rd March.
We also need an appointment with the community paediatrician to check various bits and pieces.

My favourite plan though, is inclusion in a special 22q clinic.  They hold one several times a year and apparently EVERYONE is there… from the cleft specialists to psychologists.  It will also give us the valuable opportunity to meet other local(ish) 22q families. 

Now, I just want the appointments to start rolling in so I can fill my calendar and keep myself occupied.

And if you missed the homecoming announcement here it is:


  • Reply
    Gemma - Heart Mammi
    11th March 2016 at 9:44 am

    Going home after a long admission is daunting isn’t it. When you’ve been so used to Nurses, Doctors and the monitors for so long.

    For the whole time I was in GOSH with Martha, I didn’t have any housework and I only had myself to dress and feed…then to come home to a house, laundry, weekly shops a husband and three children to take of – that was a shock to the system. But eventually, we get back into our routine. But you don’t need to doubt yourself, you’ve taken care of her every day of her life – only now you have the added luxury of taking care of her in your own home.

    I hope you’re all settled in and loving being at home.

    xx #heart2heart

  • Reply
    Louise (Little Hearts, Big Love)
    22nd February 2016 at 10:43 am

    So glad that you have lots of support in place and the special 22q clinic sounds like a great way of making sure that all the support Rainbow needs is in one place and is an opportunity to meet other 22q families too. I can imagine it must be hard to adjust to being home with Rainbow having been in hospital so long – you do become institutionalised to some extent and it is scary to be the one solely responsible for making sure Rainbow is ok. As you say though, your instincts have served you well so far and you are still the person who knows Rainbow better than any one else – you might not have the specialist training of the hospital team but you are the expert in Rainbow herself. So glad that your other children are enjoying having their baby sister back home again and that in many ways it is like she never left. Hope you start feeling more settled and confident at home soon and thank you for linking up to #hearttoheartlinky x

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