Help!! Feeling Overwhelmed and Cheated out of my Son's first 2 months

[MummyEmz10082012]

Hey All,

Just looking for some advice really I'm feeling incredibly overwhelmed with all sorts of emotions at the moment.

My little one has been in and out of hospital since he was born and I'm finding harder and harder to cope.
Firstly he went in with Jaundice that was 1 weeks stay confined to a side room with only my other half for support.
Then two weeks later he was admitted again with a chest infection where things were very touch and go and at one point we thought we were going to lose him. That was another two week stay between Bedford Hospital and Addenbrookes.
We then only had 10 days at home until we were admitted again a week and half ago with a leg infection.

The hospital costs are spiraling out of control and we have really been struggling to keep up. It's putting a massive strain on our relationship and all that we both want is a normal family life.

We feel that the hospital does not care what it is costing us to be able to get the care that our little one needs. All we want is for him to get better but we both feel like everything takes twice as long as it should for anything to happen ie test results to come back (some times we are never informed of some!) and communication between departments.

We have already been informed that little one will be on IV antibiotics for the next 6 - 8 weeks one of which must be given every 6 hours. As we can not afford to stay at the hospital we have opted to travel back and forth 4 times a day to the hospital so little one can receive the medication he needs to recover. It costs us a fortune in petrol and is exhausting us both as these trips are made during the night also.

We feel that we have no time to spend with little one or ourselves as by the time we get home and little one has had his feed and some sleep we are back down the hospital again.

We are feeling so trapped and we are at the mercy of the hospital as little one needs to get better.

Little one is starting to take notice of things now, lift his head and smile but we wish that these firsts were taking place at home and what makes it worse is he now has an IV line in his scalp as from previous IV lines he has not vanes left in his hands or his feet. It looks horrifying and we are now reluctant to take photos of him because of it!

It just seems so unfair that he has spent the first 2 months of his life in and out of hospital and now for the next 6 - 8 weeks as well. We feel that we have done something wrong to deserve this.

It pains us both to watch little one go through all this and we fear that is will effect him in some way as he gets older.

I went through the baby blues after the first two weeks of having little one as I was finding it hard to adjust to my new life with a baby and i can not thank my partner enough for being there for me during this time. But now I feel I getting depressed as I haven't really left the hospital and my relationship with my partner is under strain. We love each other very much but have done nothing but argue whilst little one has been in hospital.

Is there anywhere we can go to seek help financially and talk about our concerns as a new family? We are feeling so lost and don't know where to turn.

Hi, sorry you have been having such a rotten time. Have you got a health visitor? They might be able to help benefits and emotional support. Us it just travel costs out are you paying for a private hospital? I'd also ask MNHQ to move your post to general health where uu might get more replies.

HI Emz,

So sorry you have had such a rotten time!

Re you paying for care privately? just asking because you said about costs out of control),

I would second Nappy's advice about accessing help through your health visitor, or your GP, perhaps you have a bit of PND compounded by all of these things happening?

Do you have a support structure (family/friends) to support you close by? That can make such a difference! I think you might be reasonably close to me, if you want to, pm me your location.

You say you feel at the mercy of the hospital, do you have a good relationship with the doctors/nurses looking after your son? Your hospital should have a patient liaison service that you can raise concerns about your treatment with, especially if you are paying private rates!!

Hope your little one feels better soon!

There must be a charity that can help you with some of the costs. It all sounds miserable. Talk to your GP and find out if there is some place closer than 2hrs away that can give the antibiotic doses? Or could you arrange for a private nurse to visit at home every six hours? that might work out cheaper than all that petrol!

Your DS is however getting the best medical care and when he is healthy again you will all bounce back and have the family life you were looking forward to.The first couple of months can be awful even with healthy children for all sorts of reasons and you will have seen desperate mums appealing for MN help and advice over feeding, sleeping, colic etc on a regular basis. I'm sure those problems must seem infinitely preferable to yours at the moment, but the point I'm making is that the first 12 weeks hellishness is barely even memorable by the time your DS is 3 or 4 yo, so don't feel you are being robbed - you will all pull through in the end.

If you are still at addenbrookes ask about a room at acorn house on site, its run by a charity called the sick children's trust and they provide free accommodation for families with children at the hospital (and others round the country).

I'm surprised no-one has mentioned it :( we were automatically given a room when DD was in PICU there earlier this year. If you're getting no help from the hospital staff you could try emailing the house manager, Joy, directly. Let me know if you'd like her details, am on my phone at the moment but should be able to get them off the website for you.