Well mummy is taking back over the blog writing tonight as tiddles is sound asleep. We had another blip yesterday (I swear this girl just likes drama) when Erin's tummy swelled to pre transplant levels and gave us all a fright. She had an emergency scan to check the blood flow in the portal vein and thankfully everything looked great. So it looks like the fluid they give her to replace the drain losses was given over too short a period and her body just couldn't cope with the excess. Thankfully stopping iv Albumin replacement, giving some oral diuretics and reducing her milk for a day did the trick and she is back smiling today. The Tac level in her blood is still far too low (only 5) despite tripling her oral dose!! Our GP is gonna love us, needing oodles of the most expensive drug for life....They are quite happy with her LFT's (liver function tests) though so it looks like the steroids have sorted the rejection. Sorry if this doesn't make sense to you all, its easy to start using medical terms to describe things and all you liver families will know what I mean.
The good news is she had her drain removed today which has made her loads more comfortable. I'm not in anyway squeemish normally (my work collegues will testify to this!) but I have to say I felt a bit cold watching that drain come out, yeuch. Her neck line was removed the other day in theatre when she had the biopsy so she only has her brovivac central line and her (horrid) NG tube left! So she is way more portable now and we went fishin' again down the corridor, I think she mainly likes to see whats happening down the busy end of the ward and uses the fish as a pretense to get there but she enjoys these trips so thats all that matters.
She is finally back enjoying solids today and lapped up some chicken casserole with sweet potato & blueberries then some strawberries & apple at lunchtime followed by a dinner of beef stew & sweet potato with more strawberies & apple for desert! Num num num. It was lovely to see her enjoying some real grub again, well pureed food is still real grub I suppose.
We have moved rooms and are back at the end of the corridor again, its nice and quiet down this end and always a good sign to be moving further away from the nurses station. They needed our room for a little baby who had a Kasai today, it brought it all back to us seeing the parents waiting anxiously for news from theatre. We really wanted to say something to comfort them but we are probably not the best people to speak to as Erin has had to have a transplant so young and been so ill we wouldn't want to terrify them. It might sound odd but I found the whole Kasai period far more stressful than the transplant, I think I was still coming to terms with the BA diagnosis and all the medical interventions. It felt so wrong to hand them over an apparently healthy (albeit yellow!) baby to cut into whereas for the transplant we gave them a sick baby and they have made her so much better already. This time round Jamie & I are also old pro's at the terminology, meds, staff and hospital life in general. We have also been looking forward to the future this transplant will bring us which kind of makes the present less scary I think.
Although we are used to hospital life (I can honestly barely remember living at home!) there are some things that are just soooooo frustrating about being on a ward. The main problem is you have no control over anything but its particularly the timing of things that gets to me. When Erin is not feeling great we can spend 2 hours comforting her to sleep then a nurse will come in to give meds/take obs/weigh her/take bloods etc and wake her up. It is unbelievably frustrating and can happen 3, 4 ,5 or more times in one day, the other night she was woken up 10 times between 9pm and 6am = very grumpy mummy. It's not the nurses fault, they try and fit things around her but when they are busy they just have to do things when they get time, they are very short staffed and its starting to show when they are so busy. It is also really drafty in the rooms, something to do with pumping in cleaned air for the transplant patients but I hate feeling drafts and I never feel warm. I dream of being back home in our humungous bed, all snuggly with a big duvet and my wee smiley bubs. Ho hum maybe by next month.....
On a brighter note we've been getting lots of nice cards, letters and parcels from thoughtful friends that have really brightened up our room and our days, thank you all it's much appreciated. Erin has developed a terrible case of Daddy-itis which means Jamie gets all the smiles for very little work, sooooo unfair but its also very nice to see them together. Anyway I'm rambling on too much tonight 'cos I'm on a laptop so its much easier than typing with my phone.
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