Saturday, January 7, 2012
A Great week, but ending in Starship!
Last blog had Sam with dodgey looking urine, but the next day it was crystal clear, so we headed off to Tauranga for a wet summer holiday. It was such a great week inspite of the rain, as it gave us a chance to re-connect with many amazing friends, to laugh and hang out with them in their homes. Lots of indoor bbq's and 2 days in the sun later, we made our way back to Auckland on Wednesday afternoon, arriving in time to take Sams monthly blood tests it to the local lab by 5.45pm. Yesterday I got a call from the hospital saying his sodium was very high, but to do another test to rule out a compromised sample... so I did, and today we got the dreaded call at 11am saying that it was even higher and we had to bring him in..... so with much rearranging of various plans, phone calls, packing etc, Francis took him up to the Emergency Dept to start his 6 hour ordeal of being checked in - even though we've been asked to bring him in we still can't take him to the ward, but have to answer the same repeat questions to a selection of medical people.... it's really very irritating and doesn't seem to hold any clinical point in our head but as many times as we ask we still just get told that this is the best. We're not sure how when kids with other conditions go straight to their wards.... we shall keep asking!!
So Sam is in hospital until at least Monday as we can't put him on his usual TPN as he doesn't seem to be able to get rid of the sodium currently allocated and new scripts won't be written up until Monday.
Tomorrow I will head up to hospital with the girls before switching with Francis, so I will be in hospital and he can go to work.
This is the third time we've hit the 'sodium pothole' and it's always out of the blue when Sam is doing really well. He is now starting to walk and is so delighted it's hilarious to see his face and hear his peels of laughter at his accomplishment. He still continues to be waking and vomiting between 4 & 10 times a night, but that's been his 'normal' for the last 8 months.... so we hope the team can figure out what is going on in his little body to help keep it balanced.
I leave you with some photos from our week away - he loved hotpooling and we found a great little inflatable that meant he could enjoy it and keep his central line out of the water. The series of 3 photos was so funny - with it being wet a multitude of DVDs were watched. On this occasion he was playing with his car and 'garage' when the tv went on.... we tried to get the toy off his hi-chair tray but he just stayed glued looking through the door.....so he sat like this for a good hour! We also returned to Akld to have a few days with my sister and family from Havelock - again, so much fun and so great to see Sam interacting with, 'uncle J' and 'Mac' - Uncle Justin and Mackenzie. In Sam translation we currently have, 'Nora', staying with us - that is Eleanor his eldest cousin (20) and he says 'Nora' in just the cutest voice.
Thanks to all the fabulous people that were so kind to us down in the Bay - Col & Fi and kids thank you for hosting New Years party and a chance to catch up with so many 'blasts from the pasts' all at once -you are legend, M & S along with E, J & J - thank you for your amazing hospitality and fun - loved hanging out with you...and to the many other friends we got to see and share meals and laughter and catch up with, it was good for the soul and a joy to introduce Sam to you as you have all faithfully heard and read and prayed for this boy!
Now the holiday is over and we look to tomorrow and hope and pray that his sodium levels go down.