Sunday, July 20, 2014

Term 3 tomorrow!

So kindergarten and school starts again tomorrow - the holidays are over!  The highlight of our holidays was definitely being at home together for Francis' birthday - no huge event, just special family times together around the dining table..... aahhh, so simple, so lovely!

But Sam didn't have an easy week - another UTI has flared its ugly head, so Friday saw me dashing into Starship with specimens and picking up antibiotics.  It seems to be clearing so he is perking up and been running around fine!

Tomorrow we will embark on another busy school term, with Sam heading back to kindergarten, after an 8 week absence... over half the term he missed, and he has been talking about his buddies a lot... so I know he will be full of hugs and energy tomorrow - here is hoping he does what he is told!   6 weeks in hospital, with sole command of the tv remote etc means we have a lot of re-programming when he gets home.  One night in hospital he was so angry with me that I wouldn't put the tv on (it was about 10 pm), he said, 'right, I'm going to call my nurse!' - so he rang the bell (I didn't know he had that sussed!) and in came the nurse. When he told her of his ailment ('Mum won't let me watch tv!), through smiling eyes she reprimanded him and supported me all the way!  It is 'cute' when you have these isolated incidents or its someone elses child, but when it is 6 weeks of accumulative 'the world revolves around me' mentality, our home can resemble a battle zone for a few days after discharge as we teach him he is now part of Team Davy and there is no I in team!

So kindergarten may be a challenge for him this week, as he has to follow set rules and tasks at allocated times.... but they are simply the most amazing team of capable and caring teachers that I worry not one bit that they can't handle the raving emotions of Mr 5!

Our girls have done great over the break - just hanging out with us, changing plans constantly.... we are so very proud of them and it's lovely to see them growing up (& my clothes that are uncool on me, suddenly are ok on them?!).

Sams super cute quote of the night was when I was tubing him up for the night and we were chatting about kindergarten tomorrow.  Sam hasn't seen Ange in 2 weeks and he said, 'Will MY carer Ange come tomorrow?'. To which I said 'yes'.  To which Sam sighed and said, 'Ahh, I do love MY Ange'.  Was simply gorgeous!

We are hoping and praying that this term will see Sam having a settled period of good health.... that would just be nice.  We love to hear what you are all up to - our world can become very narrow purely due to coping and time constraints in catching up... but if you have our email, we would love to hear about you and yours!


Sunday, July 13, 2014

Guess where we are.

And it isn't home.  I have tried to write this blog twice but the hospital wifi keeps dropping out... Third time lucky?

So a quick review:
Monday - Sam had GJ put back in under GA
Tuesday - We got home about 2
Tuesday - had to drive back to hospital to get home pump (incompatible systems such a pain!) and home about 7.
Wednesday - Candace had surgery on her ankle to take pins out from her break a year ago. Just a minor day surgery, but a few quiet days of hobbling and pain relief.
Thursday - watching Sam with a hunch that something is brewing.
Thursday night - Sam wakes every hour or more to vomit and had diarrhea 
Friday - welcome back to Starship! He has lost nearly a kg in 2 days... Hooked up to IV fluids and IV abx. Happy as a happy thing!
Saturday - Aunty Tors pops in to hang with Sam for the afternoon, followed by Uncle E and R.... So I had a lovely afternoon at home with Francis and the girls. We lit the fire and had a game of Settlers of Catan, followed by meatballs and spag (also made by Aunty T) - was precious family time which has been rare these past 6 weeks.... Made all the sweeter cos I won the game!!!!

It's another birthday in our family this week - Tuesday is Francis birthday and we are hoping that we might get one out of 5 birthdays at home together..... But it could be Sams secret goal to be in hospital for all the family birthdays this year.... Either way it will happen, we will celebrate and we will make a way to all be together even if just to blow out some candles.

NZ has been lashed by storms this past week, but today the sun has broken through, well in my spot in Starship it is streaming in the window.  Yet up north thousands of homes are dealing with a big clean up, broken homes and no electricity.  Often people comment on how they see our life as hard - I don't agree - I think everyone's life is hard. Everyone has the unexpected, the disappointments, the highs and lows to walk through......many live with war, famine, in refugee camps, orphaned due to aids and conflict. Others live with private challenges but we look at them and judge they are fine because of their appearance or wealth.  We read as a family, as we slurped our spaghetti last night, Jeremiah 32 v 27 'I am The Lord, the God of all mankind. Is anything too hard for me?' We know the answer is No - He has proved it too many times - not by zapping our situation and making it lovely, but by giving us what we need - and often so much more, to keep going.

This is the day that The Lord has made, we will rejoice and be glad in it.  Not happy for the situation, but glad that nothing is too hard for God.

Enjoy your Sunday x x

Sunday, July 6, 2014

So Close... yet So Far!

So yesterday Sam was discharged for home at around 1.30 pm. His nurse called me at that time to say that Francis and Sam had just left the ward, and she then proceeded to talk through his change in medicines, his fluid regime etc... The call took about 10 minutes, then I hung off. About 2 mins later I get a call on my mobile from Francis saying, 'oh no, it's a disaster!'. The long and the short of it was that as Francis was lifting Sam out of his buggy to put him in the car seat, his GJ tube got caught on the buggy strap and pulled out. This was indeed a disaster, and he quickly returned to the ward and was readmitted! The gastric hole of course meant that gastric fluids were flooding down Sams tummy and on to his legs and he urgently needed to have another tube inserted. BUT it was Saturday and there are no radiologists available to put the GJ tube back in (it has to be done under live xray), so we have sat festering in Starship waiting til Monday morning, when we hope Sam can have his GJ re sited. Currently he just has a standard G tube in, which can only be used to drain his tummy - we need the J put in (which feeds down into the small colon) so we can give him nutrition and medicine. His GJ tube gives him around 30% of his nutrition (a milk type formula), so he has had to have this extra fluid given to him intravenously. As Sam was due to come home, his TPN had been ordered to be made up for the home system (remember our home pump and TPN is incompatible with the hospital pumps/system!), so I had to race in yesterday afternoon with the home pump or else Sam wasn't going to have his normal IV nutrition. So it's been a frustrating and disappointing weekend. Normally when Sam has his GJ tube changed, the radiologist threads a wire into the current tube, pulls off the old tube and feeds the new tube in over the wire. This way can mean it's simple and straight forward and around a 30 minute procedure. Historically due to Sams unusual anatomy, it has been really hard to feed the tube in and had to book in surgical time so he can have it put it while unconscious. We really hope and pray that it can be put back simply and easily tomorrow..... cos we'd really like to get in the car and leave! Tomorrow is day one of the school holidays and it would be lovely to be home with our girls and boy under one roof! Day 35 tomorrow.... we'd really like to wake up Day 40 at home. X

Sunday, June 29, 2014

Day 27.....

... And we are still in. His temp spike was the start of a UYI, so IV abx were started. He seemed to respond well and I did all the training so I could take him home and administer the drugs myself...... We we're all packed up last Monday evening ready for an early departure on Tues. On Tuesday morning at about 4 am I was up helping Sam out with a vomit when I saw his bulging poop bag .... Full of suspiciously awful looking goop.... So it was emptied and filled up in another hour... And at that point I knew we weren't going anywhere! Samples were sent but it hasn't come back with any culprit (C diff or Rotovirus etc) .... And it isn't clear why he is having such high losses. So we are still in, although we did escape for a few hours today to Aunty Tors house for a fun family Mexican themed meal and afternoon. He really enjoyed getting out and the girls loved seeing their bro. The week ahead sees us turning into parents of a teenager! Jasmine is excited about Wed but also anxious about what her birthday week will look like and which parent will be around for it. We always try to make a big deal about their birthdays as they put up with so much chaos and we are so proud of them.... So we will be trying extra hard this week to juggle hospital and making sure that Jas is made to feel extra special and loved on her special day. Hopefully tomorrow there will be a chance to put a plan in place to head home - school holidays start in a week and it would be so nice to be home together for that. But for now it is Sams gradual and consistent weight loss and delicate fluid balance that is keeping us in. He enjoys daily excursions to the ward playroom and we can get him painting if the 'paintbrush' is a car! He wheels the car through the paint and onto the paper and lo and behold it's called art. I might list it on trade me and see if we can make some money ..... Now u can tell we have been in here too long.

Thursday, June 19, 2014

To the pentouse

So it is 15 days post op and Sam is still in. The surgeons are happy that all is well and nothing more needs their input for now, so we moved from surgical ward up to the gastro ward -26b. We happen to have scored an ensuite (I can't find the complimentary bar tho!). Although the surgery has fixed Sams large tum, his small bowel needs to recover from the stress it's had over the past two months. It has been cooperation nicely and is now tolerating 23 ml/hr of milk feeds. Feeds are being increased 3 mls every 12 hrs. In the last 48 hrs we have been pleased to see his ilieostomy outputs are now looking and smelling like faecal matter and not just liquid. His gastro outputs are still too high and variable to consider heading home, but the H word has been murmured for possibly early next week - well that was mentioned at 5 pm today, but it is now 9.45 pm and we await the on-all Dr as Sam has just spiked a 39+ temp ���������� - That is 5 distressed icons representing 5 Davy's who are really wanting to all be together again. Hopefully whatever is brewing can be found and treated quickly.

Off to hold my boys hand and rub his tum - I will remind him of this when I am old and frail and roles are reversed - he doesn't owe me a thing, but I am sure it will bring me as much pleasure then as now. X S

Sunday, June 8, 2014

i AM 5!

Yes Sam is 5!  He had a quiet subdued day, due to being less than 48  hours post op... but he was loved and spoilt by the care team and had lots of visitors!  He had a play dough racing car cake and his room was filled with balloons and streamers.

The surgeons are really pleased they have given him back his ilieostomy as the large bowel was full of festering gluggy bile that was not going anywhere - hence his large round tum and very little excrement making its way out. He now looks so skinny without his bulbous girth!  The small bowel was not looking damaged as they thought it may have been - which is a real plus.  As I write he is now about 24 hours into GJ feeds - I think he is up to 15 mls/hr and every 12 hours they are increasing this by 2 mls.  So this is really good news, as it means we can hopefully start decreasing his TPN shortly, which means his liver can take a bit of a break!

His pain has been well managed, but the part of his lung that always seems to become compromised post anaesthetic has collapsed again and he is still on oxygen, having chest physio input and on IV antibiotics as he was spiking some temps.  It seems the team got onto this early with xrays on Friday that confirmed this.

He is tired - having big naps each afternoon, but now he is back to his warm loving funny self, albeit with lots of wires and tubes!  Francis has been with Sam all week so I could be with the girls sorting their birthday/school needs etc.  It's worked well, but with the new week ahead in hospital some more creative logistics required to keep us all afloat.  Jas is off to a week long sports camp tomorrow, so she is very excited about that!  I leave you with some photos of our big birthday and surgery week ... oh and he got a few more cars for his birthday, so he is most pleased!  A girl can never have enough shoes, A Sam can never have enough cars!

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.