Sunday, May 23, 2010

Sunday... a day of rest

Sam & I returned on Friday afternoon and then I had the delight of taking the two girls to Disney on Ice in the evening, courtesy of Grandma! It was a great treat for them and they loved it (although there was a totally unnecessary horrible haunted house 10 minute segment that had Candace and many other kids in tears - I was so furious and have written to Disney to complain... they used to be trusted family entertainment! Hmmm) and they were clapping and singing along with the characters and mesmerized by the lights, smoke, special effects and amazing skating. Thanks Grandma - it was a welcome escape for all.

Saturday was a bit stressful as have to get back into the zone and be thinking every minute. I counted up a total of 12 phone calls made in less than an hour to sort out a pump problem with his TPN, re-order repeat prescriptions, carer admin issues and ordering oxygen. All this amidst the girls wanting me to help them with whatever.... they so often get the worst of me, as Sam's cares just can't wait.... but they made it to their swimming lesson and then Francis was busy picking up a book shelf and a lazy boy from 2 places in Akld - both off Trade-Me (e-bay equivalent) and second hand. So we spent last night emptying out some more boxes and setting up home.... nearly 4 months after moving. The lazy boy is in Sam's room which means the girls can hang out when we're in with him and keep us company.

Francis left today for Rarotonga and I realised after a melt-down this morning that I am a bit stressed and tired after the unexpected week in hospital - there just doesn't seem to be time to recover. But we talked it through and I realised I'm anxious about this week as at point of discharge last week I was told that the CT scan taken 4 weeks ago had shown up some concerning swollen lymph nodes in his stomach/above diaphragm that need to be checked out quickly. So Sam is heading back in this week for an MRI, under general anaesthetic which means we will be in for another night, due to his history of slow recovery after G.A's with his respiratory issues. We're trying to not think too much about this - it means there is either some source of infection or something more sinister...and I don't want to go there. So for the sake of the girls we continue to put on brave faces so they can just be kids and not worrying about us.

Mum flies up on Wed for a few weeks which we're all looking forward too. I must admit to being slightly overwhelmed with the coming 6 weeks - we have 4 birthdays in our house and 2 are significant (Sam's first and Francis' 40th), plus 2 very excited and expectant girls. But we will celebrate as life can be so hard at times, it's nice to have an excuse to forget it all and marvel at how God has helped us through and that we are surrounded by loved ones.... so there will be a bit of bubbly and much food being consumed in these 4 walls over the coming weeks, even though I'm not sure where I will muster the time to plan and make it happen.

The new package of help we will receive is going to be so welcome, but it will take a lot of work from the Starship team, with our input, before we see it in reality - not being negative, just realistic that the light at the end of the tunnel is still a faint glow and not a dazzling blinding light just yet!

For info, I'm putting in a photo of Sam's old PICC line to help you see what we talk about. The bit by the pen is what we see as this is hanging out of his arm. We attach the TPN line on to the end each evening. The piece from the end of the paper clip is in Sams vein, stopping just shy of his heart. Through this tiny piping he has 685 mls of liquid pumped through over 16 hours - isn't that amazing! He now doesn't have a PICC, but is a Central Line, but is on a similar principle and similar design.

Off to check on the girls who have been keeping them and me sane by watching DVD's all afternoon. It's given me a chance to just sit quietly - no planning, thinking, phoning, answering... bliss! I read Psalm 62, 5 -8 says: 'I wait quietly before God, for my hope is in him. He alone is my rock and my salvation, my fortress where I will not be shaken. My salvation and my honor come from God alone. He is my refuge, a rock where no enemy can reach me. O my people, trust in him at all times. Pour out your heart to him, for God is our refuge'. Thank you God that as I pour our my heart - my fears and anxiety of the week ahead I know hope and refreshment that is so tangible and more real than I've found anywhere else. And the hope we find in you means we can face each day knowing that our lives are in your hands.

Hoping you know peace and hope as you face your new week. X Shirl


Yvonne said...

Oh my gosh 14 days & 1/2hr till Sam turns ONE.
That is absolutely amazing, but hard to believe, the time has gone just soooo fast, doesn't seem as tho I've been following you for that long or since the site started.
What a mighty milestone.
Pity he is too young to enjoy a bubbly himslef!!!!! He has sure earned it!!

Goodnes with the care plan still only a dim light, do you have enuf help from now till Wed to cope on your own???

Shame that Francis's work takes him away from home so often.
Blessings to you all.

Nicholls's said...

What lovely pictures of Sam loving being with his sisters - all looks calm and settled despite the logistics you have to work through in the coming days. Thank you for this 'sounding board' - to borrow Anita's phrase - so we can pray specifically for you all. May you know His presence and peace through the coming days. M&S

The Doughertys said...

Love the verses, may it be so for you in the coming days. Sometimes its so hard to know what to say. I love that we can celebrate with you and cry with you over your blogs. You are much loved and we so appreciate your blog. Love, Fi