Saturday, May 31, 2014

A Crazy Week Ahead

On June 3 Candace will wake excited and ready for her 11th birthday!

On June 3 Samuel will attend kindergarten for the day then head into Starship for admission to the surgical ward at 4pm.

On June 4 Sam will have surgery to reinstate his ilieostomy bag, aka his poop bag.

On June 5 we will have a family birthday party for Sam in hospital after school because on ...

June 6 Sam will have his 5th birthday.... In Starship 🎂

On June 6 Candace will have her birthday party at home with 5 little friends.

Sam is telling people he is getting his poop bag back and he understands he is to have another surgery. The timing is unfortunate but if not this coming week it would have to be delayed until August, so this is best for Sam and his overall well being.

Candace has mostly had chaotic birthdays since Sams arrival, and this year they were to have a combined party - her idea as she adores Sam. As he will be in hospital the party will happen without Sam, and means Candace can be celebrated on her own.

Although this week has a surgery in store and the sadness and tension that brings, we are truly amazed to have a five year old Sam in our family.  He is one amazing little guy that we love to bits, he brings so much joy and pleasure to us and we hope and pray for great progress for him in his new year.

I have a zillion things on my 'to do' list so must head off to start them.

We would love your prayers for Sams surgery on Wednesday.  Often bugs are stirred up by the surgery and he can have a rough time post op with bacterial infections and pneumonia type symptoms after an aesthetic, so we would love for this surgery to be straight forward so that his 5th birthday on Friday can be almost fun for the wee guy.

X

Monday, May 19, 2014

I don't know why.....

... last week felt like a tough week. Nothing bad happened, we didn't have a Starship sudden visit and Sam was happy. I think it was because Sam is about to be 5 - June 6, he will turn 5.... and everyone is so excited about that.... 5 is such a defining age in NZ - it's when you normally start school and life seems to begin with a vengeance. Normally you're excited about making the birthday cake and getting things ready for the big day.... but last week I spent it writing reports with my case worker about all the things he can't do, so we can get funding for an assistant at school. Last week we found out that the last operation hasn't worked and it needs to be reversed... he's going to have a poop bag again - another surgery - another physical assault on my darlings already scar ridden body..... as I lay beside his bed listening to the pumps whirring in the night I just felt so sad that my wee boy has to be hooked up every night and the abnormality of it all just flooded in. Normally I find it cute and endearing when my little boy asks me if I am going to do the blue or the black kidney drain first.... last week it made me cry and I was deeply sad that I have to stick tubes into him every 3 hours to drain his kidneys - it didn't seem cute anymore.... As parents we try not to compare our kids, but who are we kidding - we all do it....'look how tall little Johnny is now!', 'Didn't so and so do well in the talent show', 'gosh she's an amazing pianist for her age' etc etc.... With school on the horizon (Albeit a rather late horizon as we wont be sending him to school for a term or two), all the things he can't do are becoming amplified. He won't be able to join in with any swimming as he can't get submerged due to his central line. He will need assistance to get from A - B and to take part in any physical activity... he will need a safe and dignified place so we can take his clothes off to do his drains etc... he doesn't eat lunch or play lunch.... blah blah... At this point I must say that the sadness is mine - so not Sams. I'm not depressed or feeling negative,I'm just being real - I'm not always chirpy and sometimes I feel overwhelmed. Last week was one of those weeks. I think too some comments that wouldn't normally affect me, did. One woman asked me eagerly, 'how is Sam, did he start eating this week?'. Normally I would just think, 'oh you really have no clue do you... would you ask a diabetic if they have given up insulin this week?'....but last week it was hard to hear.... And I'm ok with having a bad week too - I think it's part of processing all this 'stuff' and coming out the other side. I read Ecclesiastes 11 v 9 'As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things'. I've had the privilege of talking at various meetings about our journey and the lessons we've learnt and how God has sustained us. Two weeks ago I spoke to the NZ Elim Senior Pastors get-together - it was a huge privilege to be asked. As I finished I flashed up on the screen a photo of one of Sams medical letters... it starts with his name and then has a subtitle PROBLEMS... then it has 1 - 23 listed.... it literally takes up the first full page of his medical notes...all the things wrong with him medically. Then I showed them a photo of Sam just enjoying life. I'm so glad Sam can't read - he isn't aware of the list... he doesn't wake each morning and go, 'bummer I've got gastro intestinal failure and kidney issues and chronic lung disease...and, and, and. Instead he wakes up and shouts, 'Are we going to kindy today?' This morning his opening words literally were, 'Can we limbo today Mum?' - he is not defined by the list as he's not aware of it. Somewhere sadly we learn to read and take notice of the various lists floating around with different peoples perspectives and we let the list define how much we risk and what we do. I know I have a lot to learn from my darling boy that is so full of life and joy. He's not limited by the 'list'. I don't want to be either. This coming weekend I am going down to Invercargill to celebrate with my big Bro a 'special' birthday.... 50's the new 40 right? So Pete's going to be '40' and I am so looking forward to celebrating with him and his family and all my siblings - all 9 of us in one place for the first time in 5 years. My brother is amazing - he too has a medical list floating around that has a few numbers on it, but he is courageous and determined and I am encouraged as I watch and admire him from afar - getting on with each new day, defying his list and making the most of the potential of the day ahead. On Wednesday I am heading into Starship to meet with the surgeon and gastro specialist to talk through timings and details for Sams next operation. I am not looking forward to it, but after last week I am feeling strong again and we can do this. I leave you with a picture of my boy defying his list.... this makes me smile a lot!...and then I need to find the broom handle as I have promised Sam that we will limbo when he gets home from kindy! If you're really lucky I may take a photo for the next blog!

Monday, May 5, 2014

Home again!

This will be a very quick update! The new school term started today, so the girls are happy to be back in routine, even if a bit disappointed that the fun of the last two weeks of holidays is over. Sam got the all clear to stop his IV antibiotics and that we could be discharged! Oh how fab was that.... so after waiting for IV omeprazole to get sourced etc, 5 hours later we were leaving Planet Starship where I hope to quickly adjust to being back home as a family of 5 - it has been nearly 8 weeks, as we were last in the house together on March 10. Sam is actually quite hard work as he is so happy to be in Starship (non stop TV, can be naughty and people laugh with/at him etc..), but coming home to zero tolerance and realising that he is not the centre of the universe and we are a family of five and we won't tolerate you calling people 'stupid' etc.... so parenting is a challenge - more so with a chronically ill child as you are always second guessing if some of the behaviour is linked to pain or anxiety etc. Anyway tomorrow I will head to kindergarten with him and he is very much looking forward to seeing his friends. I escaped to Rotorua for the weekend with the girls and Francis, to be his support crew as he undertook his first every marathon - he did fabulous and it was such a nice getaway. NZ really is beautiful and after 6 weeks in hospital (looking at Auckland CBD and getting cabin fever) the drive was so stunning as the autumn trees with all their hues punctuated the landscape - it was so nice to see farmland and animals and grass and breath fresh air! He is home on total TPN - 7 nights a week. He is not having any nutrition via his GJ, but is continuing to poop liquid nappies through the night. I am giving him daily IV omeprazole, which will hopefully mean that the 'return home then 2 days later vomit blood' sagas will not happen again. We await a call from the hospital once the gastro team have spoken with the surgical team to see what the plan and timings are for Sam. At this stage we are just going to hang at home as long as we can! X Shirl