Well the last 7 days have been not as great as we'd like! The day after the last post, Sam started getting grouchier and rounder! It was obvious he was uncomfortable and he was hard to settle and his tummy just kept looking bigger each time I saw him! His nappies were still wet, but not soaked like normal. So on Saturday I took him back to Starship emergency department..... it's been so long since we've been, but it was necessary! He had a minor temp/cough/cold, but that didn't bother me - it was his huge belly and obvious discomfort. The Dr on call sent him for an x-ray. As soon as I entered the room Sam started screaming and writhing - he sees the big machine hanging from the ceiling and he screams! The radiographer then announced that Sam needed to lie still on his side for 5 minutes before the x-ray could be taken, as they were needing his stomach gases to be settled.... um, sorry love, not a chance! It was then suggested 5 mins on his back.... yeah... um, that is so not going to happen either! We gave up and it took two of us to hold him down for a 5 second x-ray and then sat him up for another tummy/chest one.
The outcome of our hours in hospital and being seen by various people was that his GJ tube wasn't blocked and possibly his swelling was due to being on day 18 of an antibiotic for his urinary tract infection. I wasn't convinced, but left with the plan of stopping abx immediately and to keep an eye on him - I was given the choice of keeping an eye on him at home or staying in..... took all of .100th of a second to decide that one!
Sunday and Monday he was much the same, then on Monday night he kept asking to lie down in his cot - so not him! He was still very round and Francis & I had already decided I would take him back in the next day. 'Mummy, I doing a wee', Sam called out, so I went in and him and the bed were soaked! I thought his TPN bag or milk had ruptured as I couldn't figure out where all the fluid had come from..... it was him! His nappy weighed 700 gms and I think the rest would easily have taken him near 1 litre of wee! After a bed and Sam change, it was amazing to do up his nappy on a normal sized tummy! Probably his urethra had been blocked but with the pressure had spontaneously released. Poor wee man, he must have been so uncomfortable! So we didn't head in to Starship, but he had a quiet day sleeping a lot and now he is back to his normal chirpy self.
As a result of the above, he now has a kidney ultrasound appointment on Monday at Starship at 2pm, brought forward by 3 weeks. It will be interesting to see how his kidneys coped with the extra strain and uti.
Yesterday I took a call to say that upon closer inspection of the x-ray taken on Saturday, Sam's CVL (IV line in his chest that takes in his TPN) has moved out of the main vein where it should be and is in a smaller vein. The last x-ray in July showed it in situ, but now that they know it's out of place, they have to surgically put it back in the main vein! Bummer..... so we are waiting for a call as he is on the urgent list for this and it may be early next week. Hopefully we'll get a call tomorrow so we can plan the week. The thing is that the line could have been in the wrong place for 2 days or 6 months prior to the x-ray, but we'll never know and they have to correct it.
I was reminded this week (as I read the Bible), about how the Israelites never knew or could plan their next move. As they wandered around the desert, God would guide them by a cloud in the day, or a pillar of fire at night - if the cloud/pillar stayed, they'd stay and just get on with day-to-day life, if it moved, they'd pack up and move camp - it could move every day, stay a month or even a year. The pillar and fire was showing where God's presence was. They would wake up, take a look and move or stay depending on God - they wanted and needed to be where God was. It's actually pretty cool reading - Numbers 8 if you're interested. It gave me total peace that God is aware of our whole situation and when I wake each day, often uncertain of where Sam/we will be, I just need to look to God and trust His guidance and that his presence is with us. Life with Sam is out of our control (it is for all of us, just so much more obvious with 'a' Sam!), but I hope that my eyes will always be looking for the cloud and the fire to lead me, because that is the source of the peace that we know as a family amidst constant uncertainty.
Will keep you posted on when we hear from the surgical team and the results of his ultrasound. We are praying inspite of all this, God can protect and heal Sams kidneys.
Thanks for your love and prayers.