Thought I would do a little update as its been a while and so much has happened.
We are about to enter week 6 in 'the big brother house' called Sheffield Children's Hospital.
We have been to theatre twice, had numerous tests,bloods and drugs ranging from IV steroids to antibiotics.
So, where are we now?
Well,Seraphinas bowel has healed somewhat but is so fragile baggy and dismotile that it cannot tolerate full enteral feed again. the plan is to go home on home TPN ( Being fed via an artery into the heart) but ( if she can tolerate it ) a little weak enteral feed to try and protect her liver from the damaging side effects of TPN.
Seraphinas bowel has only two settings, STOP and GO. last time anything was put into her jejunostomy her bowel was in 'go' mode and subsequently what was put in came out pretty rapidly creating an impressive number of nappies and a lot of leaky mess.
now it seems it's set to 'STOP' .over the last 24 hours she has been fed very weak elemental feed at a mind blowing 5 mls an hour!! And nothing has come out of the other end....including the wireless capsule which was placed a week ago and should have passed through recording the inside of Seraphinas intestines for the consultant to see.Instead....it's looking increasingly likely that it spent 8 hours recording the same little piece of intestine in which it was placed ( so much for that brilliant idea then lol )
We are getting to that point in the stay where the Gastro team seem to drop to their hands and knees and crawl past Seraphinas cubicle window hoping the mad mother with a lot of questions ( namely how are you going to fix my daughter and have you got PCT funding for home PN yet ) doesn't poke her head round the door and spot them.One poor SHO was sent in yesterday ( he'd obviously drawn the short straw) and asked how she was and if she'd 'passed the capsule yet?' in a hopeful voice. When I replied no, I saw his downcast expression and felt so sorry for him I almost offered to make him a cup of tea!
so we begin week 6 hopeful of small steps forward.her discharge planning meeting is set for the 12th April so I'm homing that it won't be too many weeks after then that we are home.
I have been astounded by the love and support my family have received while We are away. my Church family cooking meals for my husband and children twice a week and the wonderful Postpals charity for their lovely postcards, letters and gifts for Seraphina and me which included a lovely furry blanket to snuggle under instead of the static clingy hospital ones :)
The other big news is that we have managed to find Seraphina a kitten for when she comes home.... A beautiful Ragdoll boy :) This is proving to be a source of excitement for all concerned and something I am also hanging on to...something wonderful to look forward to and aim for. Seraphina has been watching the video today that the breeder kindly sent of the litter....SO cute.
All in all we are doing ok. It's a hard road and one where I have had some really dark days but thanks to the prayers and love and support of those around us we are getting through it.I do feel so much for my other children and feel like I am making such a mess of being their mother,not being there when they need me and not being able to 'make it better ' for them. I can't clone myself though and Seraphina needs me...so I pray that they understand and know how much I love them all.I thank God for the support of our Church family.
I thank you ALL for your support....it's really left me speechless at times exactly how many people care about us both in 'real life' and online.
I hope this has updated you as where we are at now.will update again as and when.
Once again...THANK YOU xx