Tuesday, April 17, 2012
Seems a bit Stagnant right now..
Sam looks great - happy, talking and developing more, but we just can't seem to get on top of his constant night vomits. Every night it is the same even though we've been trying various changes to his feeds in both quantity and strength. Every night he sleeps so peacefully, for about 30 - 60 mins and then wakes suddenly coughing, gagging then vomiting. He is unable to get up from lying to sitting in a hurry, so someone has to sleep in with him to quickly sit him up and catch the projectile bile.....and then he falls back to sleep 30 secs later.... So we are in a rut of going from monthly blood test to iron infusion (this coming Monday), to trying a change with his feeds (seems to still vomit), switching meds for 2 weeks (still vomits).
We have been encouraged by becoming a part of the Oley Foundation, which is an organisation set up for people on TPN and tube feeding - of which Sam is both. There are literally thousands of people around the world on this forum and it feels like our world has opened up as we have been in contact with a 17 year old girl in the USA with MMIHS! Also a family in Italy, Japan and a few in the USA...... it is so amazing to email with medical lingo and acronyms knowing they get our world and their feedback and suggestions is able to give us hope and encouragement, as well as ideas of what other things we can do to enhance Sams life. The most amazing dynamic has been added - that of the voices of MMIHS patients - because they are old enough to tell us which drugs make them feel more nauseaus etc... we don't have that dynamic with Sam yet, so it's been great to hear their stories and to know that we are not alone. NZ really is such a little country with a small population, so these bigger countries naturally have greater odds of having more people with Sam's condition ....sad but true...
So although it feels things are stagnant with Sam - actually they've gone backwards, having contact with these families has encouraged us where we were losing heart. His feeds in his GJ have gone down (it lessens the amount, but the frequency of vomits is still the same)and his TPN has gone up... so our dreams of weaning Sam off TPN anytime soon are not realistic. His walking has taken a big step back (no pun intended, but in the midst of a dull post, I'll take what I can!), due to 2 big falls recently which really knocked his confidence. When he falls he falls straight back from standing....he doesn't bend, put out his hands... just falls like a tree onto his back and head. It is heart breaking to watch and both times I dived and was a few centimetres too short... oh the guilt.....so we are working on helping him get his confidence back and to help him with his responses. So his daily physio is me torturing him, forcing him to bend down on to his front to pick things up - he can do it he just doesn't like doing it. I don't know if it hurts him or is uncomfortable due to his tubes/bag/dodgey kidneys... but he needs to know to do that to keep him safe. He is getting frustrated when we get to a play ground and he wants to be running around and on things but he can't... so he is often shouting at me, 'hand, hand!' because he needs my hand to hold on to to walk him around. So my back and neck is a bit worse for wear as he is a heavy 15kg to lug around, but I can't blame him totally as it could just be a natural progression of my aging!
We returned tonight weary from a 5 day holiday in Red Beach - an hour away. We could have stayed for a week, but we can't cope with a whole 7 nights of no sleep, so we came back early so we can make use of the overnight sleeper that arrives 4 nights a week at 10pm. Honestly I don't know what we would do if we didn't have her.... life would be so much harder. So we went on holiday for the girls - they had fun, went swimming in the sea (kids don't notice the cold!), played lots of board games whilst Sam was hooked up and caught up with Nana & Grandad and cousins... so it was lovely, but we are so looking forward to sleeping in my own bed tonight...
We have been discouraged at the set backs yet peaceful. We know God is in control, but we feel Sad for Sam that he has to endure these night vomits, we don't understand why he isn't responding to medicines as he used to, but we continue to pray with Sam each day for his healing and wholeness. We don't understand all that God allows, but then if we did know all that God sees and does then he wouldn't be God, as we can't contain him in our understanding....so we are hopeful and peaceful knowing that God hears our prayers and watches over us. I will leave you with 2 photos of the special wee man on holiday this past week.
Much love, Shirl