Am amazing week!

Monday saw us waking in Starship but after much logistical wrangling we managed to escape and were home by about noon, which gave us time to get Sams various prescriptions and TPN order made up, in time for us to pack and head to a Ferry for 6pm. It was a stressful, messy and chaotic day, but as the Auckland skyline ebbed further away on the horizon so did all the yuck that builds up during a hospital visit....so 50 minutes later we were on Waiheke Island courtesy of some amazing people aka the 'Holiday Helpers' - check them out on: http://www.holidayhelpers.co.nz/

Holiday Helpers exists in other parts of the world, and we were the first lucky family to experience this charity in NZ - recently set up by a great family who have approached businesses and other parties that could help a family of a chronically sick kid have a break away. So we felt truly privileged and overwhelmed as we arrived at their beautiful bach (complete with food in the fridge) only to find a bunch of other treats lined up for us from other locals - a meal voucher at a beautiful vineyard, cinema tickets, gifts for the kids and a fishing trip.... so we had a very lovely 3 days/4 nights enjoying the beach and the beauty of Waiheke. It really is a tranquil getaway and it felt like we had been there for atleast a week - rest is good for the soul! We also took a nurse with us for 2 days, so we could do things just with the girls and not be distracted or time taken up attending to Sam. This said, we still had family time on the beach, although Sam wasn't too enamoured with the sea or that his cars were constantly covered in sand - 'oh No, oh no' he kept chanting trying to brush the sand off with the other sandy hand! The girls loved having both parents with them and going for beach walks and explores and hours in the surf.

Looking after Sam is mentally draining having to think all the time about his needs and always thinking ahead, so to be able to get away for a few days without thinking about linen to pack and food etc... was truly a great break for us. Words seem so limited as to express our gratitude to these kind people, but we are truly humbled and so thankful, it was precious family times, lots of fun and good for our souls and memory banks..... sadly our camera in the chaos was forgotten, so I will try and upload some rather fuzzy shots from our phone!

Sam left hospital on medicine to treat another urinary tract infection, which sadly seemed to have the severe side effect of lots of vomiting (as it says it may on the packet)... so our sense of euphoria of having sleep back was quickly dashed as long nights of multiple violent vomits started back again.... we are pleased to say that with this course finishing 2 days ago each night has gotten progressively better, with last night only having to get up 4 times - twice for small vomits and twice for his pump alarming... so we are hoping tonight might be better yet, although I am delighted that our night sleeper is back tonight!

I leave you with some blurry shots, one beautiful one from the deck of the bach and one of Dan with Sam - our new Waiheke friend. X S

The difference a day makes!

Sam was doing so well on the new regimen of extra water, with his sodium levels going down and 5 nights in a row of unbroken sleep - seriously this is nothing short of life changing for us.... so I woke on Thursday all excited to be able to pack up to head home BUT Sam was really grizzly and clingy...and very hot, 38.7, so the packing ceased and as he has a central line it was decided to start him on IV antibiotics immediately to stave off a potential infection. So it was a hospital bound day yesterday, with Sam having a few temperatures and being hooked up to various infusions most of the day. He had a terrible night of high temps and vomits and unsettledness. Today was a bit better and he hasn't had a temp since 9am. We await results from various samples that were sent off yesterday. Today on ward round it was guestimated that Sam wasn't showing as severe symptoms that a central line infection normal shows, so it could just be a bug/virus that he's fighting. This would be great, as it means we can get home .... BUT, it is the weekend and we CAN'T now go home until Monday, as the home system of TPN is not compatible with the hospital system and neither is allowed in each others territory (aarrghhh!!) so we're stuck. It is very frustrating to be in hospital because of bureacracy and we are just holding our breath that Sam doesn't pick up another bug whilst having a forced holiday here..... so it's been a muddly day - frustration, hope, tiredness, logistics of sorting the girls/cars etc... but in the midst of this Sam was happy to sit and watch back to back Wiggles on Safari - he nows say, 'hi Mate' just like Steve Irwin.

X

An unexpected discovery

What we thought was a routine admission turned out to be a blessing in disguise. When the doctors set up the fluids to replace TPN until Monday when they could change the order to reduce the sodium content, they inadvertently put Samuel on the normal amount of fluid for a 2.5 year old, without taking into account the 880mls of milk he gets into his intestine directly. The result was that his fluid intake was substantially higher than normal, which didn't cause him any problems as his fluid outputs were equally higher but did seem to stop the frequent vomiting, particularly through the night when it is always worse. Since he was admitted to hospital, he has slept soundly through the nights - we can't remember the last time that happened. So we think that the increase in fluids has been reducing his sodium levels which could have been causing the vomiting - well, that's our hypothesis that is now being tested. So now he's back on TPN, but the doctors have agreed that we should continue giving him more fluid which we'll do via 130ml extra of water per day in 20 ml doses into his intestine via his GJ tube. It's been more 6 - 9 months now that we've been continually sleep deprived due to his constant vomiting, and Samuel has suffered with the discomfort of vomiting acidic stomach fluid. So the possibility of having stumbled on the solution is exciting and makes this hospital visit very worthwhile!
It's likely he'll be in until Thursday/Friday, so they can monitor the increased fluid levels, but if he has another good night tonight, then it's looking hopeful! We'll keep you posted.


As it's school holidays, hospital admissions make life more complicated than usual, so I ended up having to take an extra annual leave day and took the girls to Snow Planet for the day, -4 degrees Centigrade in the middle of a wet humid summer was a shock but the girls loved it and Dad dusted off his ski instructing drills to get them snow ploughing from the top!

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.

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Christmas Eve

Hi Everyone, little Sam is amazing - bum shuffling around the house as I write this. Unfortunately he has had low grade temps this week and is a bit grizzly with interesting contents coming out in his ilieostomy bag and more vomitting than usual. We are keeping an eye on him, but would appreciate prayers for him to remain strong and fight whatever he is fighting.

Merry Christmas with love
Shirley

Home Again in record time!

Yesterday one of Sam's regular carers went to Starship to be with Sam for the morning whilst Francis drove north to pick us up stranded at Snells Beach - we had a really nice 36 hours just the girls - swam, walked, fed donkeys, got locked in an automated public toilet for 10 mins (!), spa pooled, shopped, libraried, hot chips and breakfast by the pool. Francis asked me if I had missed Sam and without hesitation I said ,'No'....and then I realised that I didn't feel bad about that fact and that I didn't feel bad that I didn't feel bad! I spotted his abandoned 'Bee' and thought of him when his shoes poked out from under the couch, but it was so lovely to not have to constantly be thinking about drugs and schedules and making up milk and emptying drains and sorting dinner for the girls at some strange hour so that I could be able to do TPN at normal dinner time etc. The reality of living with any chronic condition is that it is there 24/7 - it's holiday season on the calendar but there is no holiday season in a chronic persons life. In some ways the holiday period makes life more stressful as there is all the added excitement and expectations that don't fit that well into an already tired and full programme. But it was lovely to see Sam again as Francis dropped me there on his way home with the girls, but I'm so glad I had 2 nights of unbroken sleep in a row..... aahhhh the precious gift of sleep!.

At 2.30 pm yesterday we were called down to theatre and at about 3.15 I gowned up and walked Sam in for his surgery. He was happy and bright, but totally knew where he was when he looked up and saw the huge surgical light and started clinging to me and calling ,'Mum, Mum, door, out....'. Thankfully the team are so amazing that I really am stuck with the same old metaphors of 'awesome, genius' etc and we lay Sam down and he was quickly 'asleep' and I left. About 1.5 hours later I found him in recovery groggy, with a new line in his foot (just for the surgery) and a dressing on his neck (surgical incision for his chest) and a new bright shiny central line in his chest. I'm not sure what life has become when we are grateful he has a central line and not a PICC - this one is more permanent and meant for long term use so we should not have issues of it blocking etc like the temporary PICC presented. If I use my brain too much it is sad to see Sam with cuts to his body and realising that he needs this so he can live....but I can't dwell on that - he is growing and getting bigger and developing and doing so well inspite of the above reality.

Yesterday was the first surgery he had where he didn't require oxygen afterwards. He only had one hit of pamol and then he slept from 4 til 7pm, then he was awake and it was a tough couple of hours as he wanted to be mobile and walking but he was hooked up to 3 pumps.....but we got through it even without 'elmo' as our tv wasn't working.....there is life without tv, but I have to say that it's so much easier having it on the ward when you are trying to keep your kid immobile.

So we got home today at about lunch time. He isn't quite 100%, bit tired at times when he normally wouldn't be and seems to be vomitting more than usual, but we'll keep an eye on him and hope it's just post op yuckiness.

Tomorrow a cot with movable base is being delivered for our use, after an assessment from the OT. We've been getting sore backs leaning over attending to Sam and he also is nearly out of his cot, but we don't want him to be as he doesn't understand the necessity of his lines yet..... so we hope the use of this cot will help us care for him better and keep him safer.

If we don't get to write before Christmas, please know that we are so grateful for your interest, care and prayers for Sam and us. We hope you get time to stop and think about your year, the highs and lows and to ponder the reality that God can be involved in your coming year - that fills us with hope and amazement and gratitude.

Enjoy the food and family and friends and we will see you in 2012.

It's the Dad Life.....

Well all things considered the boys have had a good day back at our 2nd home Starship hospital. As Shirley's explained, it was gutting to have to leave the family last night around 8pm and drive an hour through the pouring rain back to Auckland, then hang out in Children's Emergency Department until after midnight before we got admitted to the ward. But Sam has been a star since we got here. He fell asleep while they tried to get the line open again, and then when the time came to put a new line into his vein to get some liquids into him, he was blissfully unaware until the needle was in and the blood was being drawn out for tests- thanks in part to a good dose of laughing gas to keep him out to it! He screamed for a minute, then closed his eyes and dropped back to sleep and was out for the rest of the night.It's been the usual busyness of hospital life with moving wards, making up milk, draining his kidney with a catheter, emptying his colostomy bag, pushing his meds into his GJ tube, in-between doctors rounds, nutritionist questions, and surgeon's visits.

Thanks to great friends from St Columba who called first thing this morning to see how they could help, I don't have to wear the same pair of socks for 3 days and have groceries to save me from hospital food.As you can see, Samuel is far from sick and is desperate to get out of his cot. We got him unhooked off his pumps for an hour today to get him out and about, but most of the day has been stuck in his cot playing with his 2 cars that we remembered to bring or watching whatever kids programme I can find on TV. The plan for tomorrow is Sam will be going into theatre sometime in the afternoon to have a new Central Line put in, and his old blocked PICC Line removed. Samuel's surgeon has got him lined up on the acute list so we'll be ready to go as soon as there's a free slot. While it's been a pain losing another family holiday (although the girls have still enjoyed the break), having a central line in will be more reliable and less prone to the blocking that we've struggled with this PICC line. So hopefully our next family holiday won't end up with another dash back to hospital like the last two......

Check out this classic Dad rap video, maybe someone needs to make one about 'the hospital life'...

http://www.youtube.com/watch?v=wIt0NLJQvTY&feature=email

Thanks for your support and prayers.

The Davy boys