Well Sam had his 'little op' on Friday and as you can tell from the photo taken of him in his standing frame on Sunday, all seems to be going well. He wasn't himself for 24 hours after his visit to surgery, but back to normal now. He is getting used to getting into the frame (it is tilted horizontal to secure him in), but once up he loves it!
On Thursday Sam had a visit from an Immunology Dr.
You may remember months ago he had a sudden and dramatic allergic reaction after eating some ice-cream. Well it was time to find out what he was reacting to - eggs, milk, nuts etc?? So she got out her pen and wrote what looked like a medical sudoku on Sam's back and then pin-pricked by each one with a specific allergen. Depending on how great the reaction was shows Sam's ability to cope with each item. Bizarrely all Sam has ever 'eaten' with his mouth are, carrot, pumpkin, pear, banana, peach and apple, plus a dab of ice cream. But it seems that Sam is allergic to lactose, soy, egg, cashew and peanuts. They aren't too concerned with the first 3 items, as kids tend to grow out of these, but the last 2 are concerning as he had a very large reaction to each of these. I'm not about to give him a satay curry, but we are asking for more info as he has two sisters who eat all sorts and as he's getting mobile could it be a serious issue should he stumble upon half an old peanut butter sandwich under the couch? The consultant immunologist is due to pop in and see me tomorrow as they need to do further tests (yawn) to ascertain how severe his allergy could be in case we need to carry an epi pen. We have been told that kids with gut issues don't have the same filters in their intestines, so if they are allergic, they tend to get a really big hit as it all goes through. But there is always good news amidst the bad... we are relieved to find he isn't allergic to Cod fish oils, kiwifruit and wheat! It's a relief to know Sam can join us for dinner next time we have cod fish pizza served with a kiwifruit coulee.
Tomorrow is Day 27 of this hospital stay and we are hoping our last. This morning at 2am Sam had his last big antibiotic infusion. Today they increased his GJ feeds to 34 ml/hr, so now he is taking about 43% of his nutrition this way... this is good news as they will try and drop his TPN hours a bit. I think the docs reviewed the 'night off TPN experiment' and felt it would be good try again but maybe once he was atleast 50% on his 'milk' - lactose and soy free.... goodness I wonder what he is getting!
We hopefully leave tomorrow with dates scheduled already for outpatients checks, iron infusion and an MRI next Thursday..... so this is his / our life, but I'm looking forward to atleast having this life in the familiar surroundings of home. It's been a long month for the girls, they are unsettled and tired from constant coming and goings, so we are hoping to be all under the same room tomorrow night. I've been struggling with loneliness - although the days are so busy with constant people and busy, it's amazing how lonely you can feel in the midst of noisy chaos....I miss Francis and the girls, and I miss privacy. Ironically the one thing I long for in the midst of crazy is solitude, but solitude and lonely are very different things..... one is peaceful and the other not. Tag parenting is not much fun. Sam is such a joy and fun to have around that he literally attracts a crowd - people constantly walk in to interact with him as they are guaranteed a fantastic smile and giggle.....I resorted to putting a sign on the door saying, 'do not knock or enter if the curtain and door are closed, you can leave gifts, chocs and messages at reception' and that was after shutting the door and curtain and people still came in......
So to be back in our home tomorrow will be a treasure - just us 5 ....and a codfish pizza.... aahhh I can almost smell it!