More from the Fox!

Friday +15 and a bit more of Thursday.
Thursday afternoon, William asked for something to eat by trying to clamber into his highchair and pointing frantically at his bib. I gave him some rice milk, as recommended, which he drank 50 mls of. The latter part of the evening proved a bit too exciting with W accidentally catching his NG tube and pulling it out. The second nurse to try got it back in but on the first two attempts W got himself in a right stew and did a rather scary retching/breathe holding trick which has given me a whole new set of grey hairs! He had a milk feed overnight which seemed to give him stomach cramps and he (and as a result, I) slept terribly. He slept this morning until 9.50am…I don’t think that he has EVER slept that late no matter how disrupted the nights (and believe me, we’ve shared a few of them!) Immunoglobulins were infused overnight uneventfully.
This morning we discovered that we are now on Yellow Precautions, our green poster has been replaced by a, yes you’ve guessed it, a yellow one! Unfortunately due to the large WARNING LURGY poster next to it, it is not the freedom pass that we were hoping for. The virus means that we still need to wear aprons and that W is still not allowed out into the corridor or the playroom for the moment. He watches the others through the glass door rather forlornly but it won’t be for too long, we hope. The consultant was pleased with his progress this morning and revealed that he commutes from Bristol and has a Labrador, so we must be in good hands!!
He was a little bit sick again this afternoon but then drank 150ml of ‘Rice Dream’. His nappies are once again frequent and they are putting up milk overnight again but still at only 5 mls/hour. He has been having tummy cramps again this evening but the nurse has just said that she can rustle up a better medicine than the codeine for the spasms. I’m also a bit worried that W has a cold brewing. He is now wide-awake reading his lift the flap Diggers book so it looks like we are in for another long evening…

Saturday +16
W was sick twice this morning so an eventful start but then was much chirpier through the day. He slept all evening for us so Rob dashed out for takeaway pizza and I had an illicit baby bottle of wine in a mug and we watched a few episodes of Spaced on DVD (thanks B). Rob went over the road, literally to his accommodation; it was nice to know that he was nearby. William woke up shortly after he left and was in a bit of discomfort so we got him some medicines and he calmed down shortly afterwards and we had a reasonable sleep with only a couple of interruption until 5am when he got a bit disturbed but settled again by 6.

Sunday +17
As Rob left the nurses accidentally woke William up after only ½ hour sleep and then he wouldn’t settle until after 10.30. He had a few rather dramatic nappies so they put up some extra IV fluid to replace his losses! He spent a long time playing contentedly with his cuddlies and a pen torch that one of the nurses gave him.

Monday +18
It was Grandma day again and a fresh supply of toys and tales of train rides. The Consultant came around this morning. He is still pleased with William’s progress but as his counts have fallen and because of the virus they will give him some more GCSF to give those cell counts a bit of a boost to help protect his gut lining. He is 100% engrafted which means all the cells are the donors and none there are no faulty Wiskott-Aldrich genes remaining…..
The Dietician also came by and we are to continue to offer just rice milk for a few more days until his tummy is a bit more rested. He had one sip today and pulled a face as he did yesterday but the first two days he had it he liked it. So he has only had water again today. His weight has only dropped a kilo since we came in and he is weighed twice daily so they won’t let him get too skinny. The introduction of food will also come gradually and be dairy/wheat free and that kind of thing initially and we will add new foods on alternate days to check that he tolerates them but all that is a little way ahead of us yet.
He is asleep for the moment and I think the nurses will be in soon with his TPN and the start of his evening IV medicines so I will say goodbye.