Home Sweet Home!

Francis & the girls landed back in Aotearoa at lunch time, so it was lovely to see them back in hospital with Sam - and to notice how much he's grown!

Sam is now 5.8 kg and has been on 3mls of neocate (milk formula) per hour, which is administered through his gastro/jejunum tube by pump. He has been on this for 21 hours a day, which is the same amount of time he's been on his TPN each day. The past 2 weeks his weight has been gaining rather rapidly, so as of yesterday they are altering his TPN to compensate for the extra calories he's gaining via the milk. Today the Drs agreed to reduce his TPN by 1 hour per day, so he will now be 'eating' for only 20 hours a day and to increase his 'milk' again to 4ml/hr.

Last night an oximetry test was taken on Samuel, to follow his breathing through the night. The information showed that he is still needing oxygen assistance when sleeping, so although he's been doing well in the day with breathing room air, at night he requires oxygen, so it's looking like we will be heading home with O2 for the nights.

Yesterday he had his 3 monthly immunisations (a month late due to illness etc..) so he's a bit grumpy and subdued today. The milk/jejunum experiment continues. He seems to cope fine with up to 3ml per hour but when it was put up to 4ml he was really unsettled with his stomach acid ph level markedly higher - this is easily tested, as we just asperate his NG tube and put some of the fluid on a ph indicator stick. 7 is about neutral and normally he has been on 6 or 7, but this week he has been down to 3 and 4, so has been having a lot of discomfort with acid reflux (well that's what we think). But we also need to challenge his system and see if he can adapt to having some more milk, as the more milk he can have the longer and stronger his liver will be, as less TPN will be required.

Tonight Francis' sister, Sarah, is bunking in with him for the night and tomorrow night Anne (aka Nana and Mum to Francis) will be sleeping in with Sam so that we can have a family weekend, which we are hoping with help anchor our tired little girls back to NZ soil. It's so lovely to have this time together and to have family pitching in - last week they were dropping in meals, sitting with Samuel to give me a break, helping me with picking up stuff etc etc.... again it's amazing to have a supportive family. It's not something we take for granted as we have met many people on the ward who are very much struggling alone with their sick kids - we can only imagine how difficult this can be.

The girls arrived back having had a wonderful 10 days of constant playdates and sleep-overs. Francis had a hectic time packing up the house, work meetings, selling stuff, juggling jetlagged & emotional girls.... so after he spends this weekend tweaking his FINAL Masters paper and getting it couried to the UK on Monday, he deserves a bit of a break... but that may just have to wait until after he has perfected his TPN training and rearranging the house/putting up a cot etc.... no rest for the wicked eh!!

At last with Francis back I can post some cute photos of our rather pudgey boy! Every inch of his determination and strength that got him through 8 operations and multiple infections oozes from this defiant photo of him ripping his prongs from his face.... it speaks volumes to me!

A random piece of info: Samuel only cries if he is pain.... he doesn't have dirty nappies and he doesn't know hunger (TPN suppresses hunger) so he doesn't cry when normal babies cry.....

Well it is lovely to be home and to have the rest of the family home too.