It's been a very full 2 years. Full of much sadness, many tears, much laughter and much joy. Sam is such a delight, even though his every day is filled with some pain and discomfort and challenges that most kids thankfully will never face.
This week hasn't been a great one for Sam. He continues to be vomitting more and more each day, and vomitting the most vile fish smelling stuff. He is happy in the day, but very unsettled and fitful sleeps. On Tuesday Sam had the barium contrast study on his jejunum and his stomach. First they put the contrast into the J port on his stomach button....and watched its progress on live xray. It seemed to have movement and progress. Then they put some into his G port - into his stomach, and he instantly started refluxing. We waited about 20 minutes and then they took new xrays to see what had happened with time and all the contrast from the J port had left his bowel and was in his ilieostomy bag. This was surprising and great news and shows he has more peristalsis (muscle activity) in that part atleast than expected for a kid with his condition. The contrast left in his stomach was still sat there having not moved at all. So this shows there is some blockage or piece of upper bowel that may have no muscle... or a bunch of other scenarios. Sam screamed and cried for the duration - probably 30 mins. He now is old enough to recognise where he is and he is scared of the big machines in Xray that hang from the ceiling and are moved with clicks and whirrs and positioned right over him..... so this was unpleasant and he was worn out after this.
Yesterday we returned to Starship for his iron infusion, so that was dull and tiring entertaining Sam from 8 am - 4pm. He's not into tv yet, so can't really plonk on a DVD, so have to sing, read, play with and leap up and grab his line before he pulls it out when I dare to ignore him! As his vomitting was noticably bad radiology quickly saw us and Sam had a contrast study on his GJ tube, as it was thought possibly the water balloon inside his stomach to hold the device in place may have moved and be causing a blockage/and or pain. Well Sam was a total star and unlike on Tuesday he was all smiles and lay secured with hands above his head happy and content! Was very bizarre, but welcomed!
Today he's been really unsettled, sometimes quiet (not like him!), had a slight temp and been really unhappy, but we're hoping that with paracetemol and fans we can avoid going in today!
The gastro consultant called me to update me on various things. The MRI came back showing that whatever is showing on the scan (they don't know) has not grown since the last MRI, so they're happy to just leave. Gall stones have been detected in his gall bladder and this is common amongst TPN users. They are going to put him back onto Urso acid to help with clearing them. They want to scope Sam's stomach to see if they can see anything that is causing this decline in his health - it's been deteriorating over the past 3 - 4 weeks, so we are hoping they can get us on the acute list early next week. Whilst inpatients they are also hoping to try taking out the GJ tube and leaving it out for a few hours to help the hole close up. We've had constant battles with secretions and hypergranulation around this site and it's hard to keep clean and Sam scratches it. The thinking is a bit like an ear-ring.... if you take the ear ring out the body naturally tries to heal and the hole can shrink quickly. Once it's shrunk enough they will put the GJ back in and hopefully it will be easier to manage and will aid healing. This of course needs doing whilst an inpatient so he can be monitored, plus GJ's have to be put in with Xray to help positioning.... So it's frustrating seeing Sam not quite so happy. In between the pain he continues to charm one and all, but it's sad watching him gagging so much, it must be awful for him.
So although I never look forward to being a fragmented family, we hope an admission next week will hopefully come up with some answers and some relief for Sam.
I've been reading from Ecclesiastes in the Bible - written by one of the great and wise kings of old. This rings true for me: 'What do people really get for all their hard work? I have thought about this in connection with the various kinds of work God has given people to do. God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God's work from beginning to end.'
We can't see the end game play at all, but it's so reassuring to know that God works his beauty in it and he sees the end. I also love how he writes, 'There is a time for everything, a season for every activity under heaven....A time to cry and a time to laugh, a time to grieve and a time to dance'. Well we've grieved and cried through out these years and each day though I don't openly weep, my heart grieves as I hold Sam as he wretches yet again...and then I laugh with him as he smiles and claps.... there is a time for everything. And tomorrow night is a time to laugh and dance with friends and family as we have fun together in the form of my 40th. I'm looking forward to laughing and dancing and being with loved ones. Time can be one of the most expensive gifts that we give each other and I have been given some lavishly expensive gifts as I look forward to celebrating with friends that have put this party together....oh to have such rich friends, I'm so thankful, as they have helped pull me along these 2 years. Thank you so very much.