Day 8 in the big brother house

The title of this post is a bit of a joke.David started it and I've a feeling it will continue through the weeks.
it's been a really tough week to say the least but one where I have felt overwhelmed by the unexpected support from my Facebook friends and other special needs mums.from an unexpected package, lots of supportive comments on my facebook wall , wondeful pledges of prayer from followers on twitter to an anonymous Dominos pizza order for me it's all happened this week.

I have tried to keep people informed via Facebook but for those of you who don't go on there this is what happened....
When we got admitted Seraphina was in a poor state, she wasn't tolerating feed or dioralyte, she had diahorrea and every nappy contained blood.she was sweating with pain and no- one really knew what was going on.
She had bloods done and was out onto IV fluids via her port.after a chat with the consultant they went to book an endoscopy and colonoscopy for the 1 st March. Once they realised how much pain she was in they decided to do it on Tuesday afternoon.
She went down to theatre and I got given the familiar pager which would go off when she was in recovery and they were ready for me.
When it went off down I went expecting to be called straight in to see her. I wasn't , instead I was called into a private room to talk to the surgeon who had carried out the colonoscopy. That's when alarm bells went off.

He explained that their findings had been extraordinary .Seraphinas colon was visually like bubble wrap so close together were the ulcers and sores and the surface of the colon which had bubbled with gas and inflammation . E surgeon was so concerned about doing a biopsy that he phoned the gastroenterologist to check he still wanted one given the state of her bowel.He did. Unfortunately when he took the biopsy he described it as 'trying to biopsy cling film' and her bowel perforated. he said that Seraphinas bowel was so bad that it would never recover and she would not be able to be fed via tube again...it would be TPN only ( which is feeding via a vein)

The days that followed Seraphina required more and more morphine and other pain medication had to be added in,she bled out of her gastrostomy, her heart rate dropped very low..so low in fact that unknown to me then they had to call the resuscitation team who were sitting in a side room in case they were needed for a few hours.
Saturday was an exceptionally bad day..her bowel spontaneously perforated again and we were told it could happen again at any time. for safety's sake she was already on multiple antibiotics.
Today has been better, she's still on morphine but not needing as many boluses and has sat up in her chair for a while.
the plan is a long one. in 2-3 weeks she will go back to theatre to see if 3 weeks on TPN has improved her bowel any. She will have an endoscopic evaluation,something called a wireless camera, which is a little capsule which will travel through her G I tract taking photos every 2 seconds ( this is the only way they will be able to see her small bowel as it was too fragile to look at endoscopic ally ) she will have a laperoscopy and CT scan to look at the outside of her bowel. Depending on the results of these tests it is thought she may well be better off without her colon and so she will have a colectomy and a stoma placed.

I can reel all this off quickly now but on Tuesday evening I was in shock...total shock. I was also so angry, having been told that the prognosis/ life expectancy was now poorer than we had thought before. if the cure for Rett was found tomorrow it would still be too late to reverse the damage it had ravaged on my little girls insides.
So we are in another 3 weeks till surgery and then they have said around another 7 weeks afterwards....a loooonnnng time.
when she comes out she is going to be spoilt...she has wanted a cat for a while and so by hook or by crook I want to get her one. bless her even on the worst days when lying lethargic and worn out from pain, the nurse said to her "are you getting a kitten?' Nd her eyes lit up and she smiled that captivating smile that only Rett girls seem to possess.... Somehow we will find the money to buy her one.Its the least we can do after all she's going through.

Thank you for all the precious people who have supported us through this week.thank you for all the prayers...it's so good to know that there is such a cry to heaven going on for my gorgeous girl.

To be continued.....

One Word

This year I decided to join 'One Word three sixty five' as an alternative to new years resolutions.
My one word for this year was - Strength.

Since choosing this word I seem to have had many opportunities which require it. Strength of mind, of character, strength in my faith etc neer mind physical strength.

Seraphina has not being doing so well. We havent had much in the way of stability over the last weeks. one minute shes up and her gut seems to be coping and the next shes down and having diahorrea and bloating in her tummy. Shes also picked up infections really quickly requiring antibiotics which mess up her gut even more. We have had many really close calls with hospital. but we have got through them.

Now however is a different matter, shes had another bowel bleed, not masses, but enough. she had to be put back on dioralyte as she wasnt tolerating feed, shes lost another kilo and a bit in weight over the last two weeks. The childrens Nurse and the dietician phoned the hospital...so did I.

The consultant phoned me yesterday. He wants Seraph admitted indefnitely, to start her on long term TPN which means she will be fed through a vein. she will have surgery whilst in to find out whats going on and how to treat her for the best. He has mentioned in the past that she may be better off if we remove her Colon. ?? whether that is correct or if that will end up happening.

Im scared.

I know there are other mums out there with daughters on TPN, I know it helps enormously, but I also know that long term it kills...by destroying the liver. TPN is a last resort.

I need strength...Strength for Seraphina, to let go and realise I have done all I can to keep her at home and enterally fed, to love her and help her through this next step on our Rett journey. I need strength to keep myself going when all I want to do is curl up and cry and  need strength to walk away from my children on Monday morning (Eve's 9th Birthday) to drive over 100 miles away to hospital when I dont know how long it will be before I see them again.
Every time I leave them I see their hearts and mine break a little more.

God give us strength because we cant do this alone.