tag:blogger.com,1999:blog-8461651831831377212024-03-14T11:15:36.781+13:00Samuel James DavyUn-Cool Lukehttp://www.blogger.com/profile/00135924198846458903noreply@blogger.comBlogger468125tag:blogger.com,1999:blog-846165183183137721.post-70949122201841607142018-03-22T12:57:00.001+13:002018-03-22T12:57:10.962+13:00Back by popular demand!Hi everyone. It is time to start writing again! I am so grateful for the emails (literally from around the world) asking for updates and prayer requests. Candace has happily revamped the blog and she is now in charge of all things aestetic! I will be adding the words and Sam will be supplying the contents!<br />
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So 2018 has found us in hospital a couple of times with a blocked bowel - out-of-the-blue Sam will come down with acute back pain and vomitting, his ileostomy outputs will just stop (no poo going through) and his stomach becomes very large, round and hard. We had a 2 week admission in February, and we have been in hospital for a week now. We went to our local hospital and after a few hours they popped us in an ambulance and got us across town to Starship. This was Sams first ever ambulance trip, but it was perfunctory and not an emergency, so there were no flashing lights or high speed motorway dash (I'm glad it wasn't an emergency, but I wasn't opposed to the later!).<br />
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He had a touch 5 days on the surgical ward, in pain and feeling physically miserable. He was listless, sore and struggled with being in. When he is unwell he needs regular blood tests to check for various electrolyte/minerals etc in his blood and the most accurate reading is always a finger prick. Having them so often and also multiple tubes of blood needing collecting, this is a traumatic procedure for him. He would see the phlebotomists trolley and start screaming - at me, at her, at the nurse... Finally it just became too hard to collect it this way, so we have gone to accessing his central venous line for blood tests - and with good nursing protocol in place, the samples have not been tainted and are fine. His fingers are still healing and yesterday was the first day he played with cars in a week, albeit holding them with his thumb and the one finger that was assaulted.<br />
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Today Sam is sitting up (trying to avoid pressure sores on his sacrum) in a chair, hooked up to his TPN/IV Nutrition. Yes, after some frank discussions, and a continuation of discussions had over many months, Sam is back on TPN. He just has not been able to hold his weight since being on 100% enteral feeds. The team are disappointed, as they see this as a failing. I totally do not think that! They tried everything possible, but we have to treat Sam with the needs he presents - he is presenting as an underweight boy with an unco-operative bowel. So I am really pleased we now have TPN back in the mix. It will mean we need a refresher on hooking him up, as they now use different pumps. Sam also had a different type of CVL, so we need to make sure we are proficient before we head home.<br />
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All that being said, he is a long way from discharge. His fluid balance requires a mathematics degree to work out and he needs to start back on some feeds into his gut. It would be good if most of his feeds could be in his gut, but having TPN in the mix means we don't have to be bombarding his gut with as high a rate as before.<br />
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So the juggle of hospital and home continues, with the added dynamic that the girls are home alone when I am in hospital. I am very grateful they are older, are learning to cook and be responsible, as well as having tenants on the ground floor that keep an eye on them. They still need their Mum though and I try to get out to see them most days. When Sam is unwell it is so vital either myself or Francis is with Sam, as the medical teams pop in and out and we are his voice. As of yesterday Sam is well and happy enough to be left in the care of others, so tonight I am very grateful for my trusty weekly night sleeper coming to do her shift in hospital with Sam. This means I can get the girls to and from their things (Jaz to work and Candace to piano), but more importantly just time to be with them and to listen to their lives. As has been the case over the years, I am so grateful for dear friends who step in and are the girls taxi when needed.<br />
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Right I'm off to play with the boy - his fingers are so munted he can't hold a pen or pencil, so writing and doing his school work is out of the question. Connecct 4 however is ok!<br />
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I will try and update weekly, or more often with urgent updates.<br />
Thanks for walking 'The Life of Sam' with me.... it's heart warming, encouraging and frankly just more bearable! I hope you and yours know strength and encouragement today.<br />
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X ShirlFrancis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-77648983987922772542017-06-19T00:08:00.001+12:002017-06-19T00:08:41.860+12:008 years old and many adventures!YES, the last month has been busy... and it included a birthday! It was a very low key birthday, due to me being a tad tired after a whirlwind 3 day trip to see family in Southland. We managed balloons for our standard 'birthday breakfast', but cake waited til the next day - once I had been to the supermarket. Normally I spend hours on creating a cake and fun things... well I was just straight up honest this year, and happy to accept that 'Super Mum' was never real anyway, she is long dead and gone..... so I think it literally took 34 seconds to create Sams cake! I had splurged on 2 x $4.99 cakes from Pak'n'Save, opened them up, stuck a cookie cutter in the middle and popped out the 2 centres (which became part of the girls lunch!), sliced out a chunk of one so it would fit together and voila! Sam seemed ok with it, and it was suitably adorned with a candle gifted by cousin Grace! Less is more right? <br />
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Sam has had many 'firsts' this past month. He has been on the Howick Coastguard Boat (courtesy of a friend), his first flight (2nd, 3rd and 4th!), first time ice skating (he was more 'ice sitting!), first time as a Fire Man (Thanks Uncle Ron!) </div>
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Sam has mostly been really well. I had booked flights to take the 3 kids down to see my family (Invercargill) for a 4 day long weekend. I had talked to the airline, had letters from Drs etc, and done due diligence to make sure that if Sam was to get sick whilst down south, a plan was in place. All was on track until 3am the night before we were due to fly out. Sam wakes up and has a temperature of 39.5! I was gutted. As Sam has surgically implanted lines in him, any significant temperature is a concern and I couldn't ignore it (but I really was tempted to!). I head into Middlemore first thing in the morning and he still has a high temp. Chest xray, bloods, urine samples -everything is reviewed, but no source of infection is found. At this point I am having to decide whether to risk taking Sam down south, also with the unknown factor of flying in a pressurised cabin at 35,000 feet with compromised lungs and gastro issues, or if it is a normal virus which will run its course. I am praying and pleading with God to please let Sam be well enough so we can go on holiday. I had texted all and sundry and they were praying too! Historically when Sam has a big temp at this time of year, he has been brewing a cold/infection which often ends up in his lungs and complications occur. I was very conscious of this, but felt peaceful that this time was different. I negotiated with the Dr, (who was hesitant to let us fly), that if we pushed back our flights by 6 hours and if Sam didn't have another big temp between now and then PLUS having a review in the morning, we could still go. After a long day in hospital we got home about 5 and I change the flights to a later one (note to self, never book the cheap flights as you end up paying a fortune to change them - false economy, book the expensive flexi seats first time and hopefully that will pay off in the long run!). Sam had a good night, a good review and off we set for the airport. Queue hurdle after hurdle after hurdle....then missed flight.... then sobbing mess of a mother with 3 confused kids.... then airline person with heart of stone.... more sobbing and begging..... then lovely airline manager filled with kindness..... queue last 4 seats on last flight of the day! It was the most bizarre of days - understaffed shuttle company meant we waited 30 mins rather than 10, then broken down traffic lights stuck on red etc etc....... when we finally got on the plane I collapsed in the seat so relieved. Now remember this is Sams first time on an aeroplane and he is a little anxious. As we flopped in our seats all I can hear is dogs barking - like quite loudly! I have literally flown all around the world and been on dozens of flights - I worked for 4 years for a UK based travel company and was on planes so frequently and I have never heard dogs barking! Sam is ... um.... quite terrified of dogs! He is looking at me saying, 'Mum are there dogs on the plane?'. I could see him thinking am I going to be shut inside this little flying box with dogs?! Jaz and I are confused by the dogs and then we realise they are right under us in the hold. Thankfully once we took off they stopped barking and Sam enjoyed his flight. At the baggage claim in Queenstown there were several people relocating for ski season, claiming their dogs. This meant nothing to Sam who clung to me as they were wheeled past him barking! Then to find our rental car (Candace and I did our best impersonation of 'The Amazing Race' as we had to jog 10 mins in the dark to the rental car park as it was now 'out-of-hours'). 2 hours later we pulled up to Mums place and we could now sit and laugh at the crazy day we had just had as we ate our swede, mash and meatballs - aahhh so good to be home!</div>
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Travelling with Sam was interesting. Everything he needed for the trip had to be taken on as hand luggage - we each had 7kgs and all 4 of us had Sams stuff! No airline will guarantee 100% that checked luggage will arrive, so his pumps and stands, all feeds, giving sets, syringes, meds, drains etc, all were packed and repacked and weighed and shared amongst our 4 bags. The trip was nearly a day shorter due to Sams episode the day before, but thankfully it seemed to be viral and there were no emergencies whilst down south. It was great to spend time with Mum, Siblings, spouses and their kids, Aunties, Uncles and friends. Sam had never met some of his cousins, but you wouldn't have known that from the interactions. Thankfully the trip back was hassle free and we could enjoy the drive to Queenstown in daylight. </div>
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The day we returned Sam was sniffly and snotty. This then turned into chesty - not a good thing for him as his lungs are quite damaged. Thankfully it seems his chest physio work has paid off, as he has been managing to clear it and keep up his energy. He is now on antibiotics for his chest and he missed 2 days of school last week due to this, but he will be at school tomorrow and is doing really well.</div>
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Last week we had a gastro clinic and a dental clinic - both at Starship. We are playing with his feeds again to try and increase his calories so we can decrease the hours on pumps. We are now on 65% on Nutrini High Energy Multifibre and 35% peptijunior. We are to see how he goes for a 7 day period and may titrate it up by 5% if he copes with this.</div>
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This coming week Sam has another Psychiatric assessment (cognitive development) on Wednesday at Super Clinic, so he will miss a couple of hours of school for this. It will be good to get the findings of these assessments to see what his baseline is with different functions.</div>
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Sam is definitely an 8 year old boy - wants to wrestle, shoot, tackle, jump, attack. It's very delightful to see his enthusiasm for life and also the difference between girls and boys. Candace asked me the other day, 'Mum was I like Sam, did I always want to wrestle?'. I told her she didn't want to and she asked when he would grow out of it - so the girls are learning what boys are like and having to adjust to the noise of a busy loud brother! Today the girls were so sweet as Sam returned home after a weekend with his Dad. They each sat and cuddled Sam and Sam told them all about his fun weekend. It was lovely to see that they miss each other and were excited to ask each other what they had been up to and to share in each others fun ... I enjoyed it whilst it lasted .... </div>
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Blogging is hard at the moment, as it is hard to separate the issues around solo parenting Sam and Sams well being and the new family dynamic. I think that is why it has been easier to just not. The stress and emotions around missing the flight were many and varied - 'Can I even do this solo parenting?', so much planning and prep for Sam and then it maybe being for nothing, 'why does it seem that sometimes everything is against us?', 'So wanted to see family and spend time with them'.... Yesterday I was at a day conference at a local church and we were reading about a lady in the bible called Hagar - she was from a despised people group, unmarried, a slave, pregnant, mistreated by her boss and life was so hard she ran away and the story picks up as she is weeping alone and dejected in the desert. An angel comes to her and talks to her. The first time in the bible when an angel meets with a person is this time - and they have a chat and she names the place where she is 'God Sees'. I love that a dejected unwanted pregnant scared despised young woman is visited by heaven - God sees, God understands and God gives her a promise of hope, gives her instructions and help. In our age of instagram and selfies, we so often want things to instantly be better like that person over there with the FB posts that show their smiling happy holidaying family! I am confident that God sees each and everyone of us, our challenges, our pains and joys, our true heart.... and he cares deeply. I am learning so much and so grateful for that. Learning means we are growing and we are alive. I am learning to enjoy the kids. I am learning to not rush - to enjoy each hook up of Sams feeds, each drain I get to do, as that is time with him. I used to see his cares as tasks to be completed so I could get on to real things.... how wrong I was. His cares are the real things as I interact and care for him. I am learning to not care about some things as they don't actually matter and to care about other things that really do matter,</div>
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I was telling a friend about our tough day getting to the airport and she commented on how amazing my girls were at coping with this. I was so proud of how great they coped and how helpful they were and she commented that this was their character having been forged due to the past 8 years of dealing with the upheaval of Sam. It rang true - hard things are actually a gift, we would just rather hand them back and ask for a nice lovely easy gift, but hard gifts create special opportunities for growth.</div>
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I hope whatever you face this week, you can be aware that you are not alone, there is a God who sees, who knows, who cares. I hope you can accept whatever present you have and not be tempted to throw it back or pretend it isn't really what it is, but find the opportunities that are in it.</div>
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Sleep well!</div>
Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com4tag:blogger.com,1999:blog-846165183183137721.post-30532741384003576912017-05-12T22:47:00.001+12:002017-05-12T22:51:09.126+12:00Hooray for POOP! <span style="font-family: "verdana" , sans-serif;">π©π©π©On Sunday night I changed Sams feeding regime, as per the staggered plan created by the Starship dietician. He has been on the same 60%:40% combo of 2 feeds for 2 weeks so it was time to change it up to 80%:20%. Sadly Sams intestines did what it did last time and slowed down significantly. On Monday he was a bit rounder and outputs had thickened/slowed. On Monday night the night sleeper ended up turning the mix down as he was waking to be sick and complaining of pain. Tuesday he was rounder still. Tuesday and Wednesday nights got progressively worse with pain and 'Michelin Man' was coming to mind. Last night at about 1am, I made the decision to stop all calorie feeds and just pump him full of electrolytes (to keep his fluids up) and that I would take him to hospital first thing in the morning.</span><br />
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<span style="font-family: "verdana" , sans-serif;">At 7 am I emailed both Starship and Middlemore as I wasn't actually sure where I should go. 7.25 am the nurse specialist called and we had a chat and I made the call to go to Middlemore, as Sam had been seen at a clinic there on Tuesday, so the comparison and familiarity would be useful.... plus Starship was full and we would end up sitting in the emergency department for endless hours (think windowless bunker). I sorted the girls off to school and gave them various scenarios as to what to do if Sam was to be admitted.... thankfully we only had to get to Plan B for one child and Plan A worked a treat for the other! After packing up, sorting up we got to Middlemore about 10am. This was precisely around 30 mins after Sams outputs had decided to ramp up! So I emptied his poop bag of thick goopey poop 3 times in an hour - I was SO happy, although I felt like such a fraud and promptly burst in to tears on the poor Reg that came in.... I did explain that 2 nights of very broken sleep was a large part of the tears, but once I sorted myself out we hatched a plan to hook Sam up to feeds in hospital and see if the blockage had truly gone. I think also as a Mum it's just hard watching your kids in pain....and I knew where this ended up last time and so didn't want that - so they were tears of relief! They think that the extra fluids had just helped unblock the blockage, and 48 hours worth of poop thankfully arrived - better late than never right! Suffice to say that various people received the 'pile of poo' emoji in texts! π©π©π©π©π©</span><br />
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<span style="font-family: "verdana" , sans-serif;">It was lovely to see Sam pain free and back to his usual self and it was a win to get home just in time to pick up the girls after school.</span><br />
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<span style="font-family: "verdana" , sans-serif;">On Monday I had a school meeting about Sams progress at school. This meeting had numerous people around the table - OT, Physio, SENCO, RTLB, LA, SNC and Teacher - LOL to all those education acronyms! A bunch of kind, skilled individuals all discussing Sams progress, points of concern and how to help him make the most out of his learning and time at school. I always come away from those meetings with mixed feelings. I feel sad for him as I hear what he needs help with and see the huge gaps between him and his peers in some areas... but it's so moving hearing them all discussing Sam and seeing their genuine care for him and seeing how far he has come! It was agreed at the meeting it would be good to get a cognitive base line to help everyone know his strengths and weaknesses and how to approach that. So he is now booked in for a WHISK test (another acronym I have no clue what it means) which I think is basically an IQ test. This is taking place on Wed 24 May.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Tuesday I had Sam at Middlemore for his Paediatric review. He is weighing in at 22.8 kg and 114 cm - which has him on the first percentile on the growth height chart. In the afternoon I took Sam to Gravity. Upon chatting to my dear friend a few weeks back, it dawned on me that Sams time is taken up with so many clinics that I don't actually do anything that fun with him! Gravity is a trampoline park and they have a $10 Tuesday and I figured jumping around for an hour would be great for his core, his lungs and coordination. I tried not to think of potential broken limbs, such as his sister endured on a trampoline, but that the benefits and fun factor could be very cool. It was a fun time and he loved it!</span><br />
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<span style="font-family: "verdana" , sans-serif;">On the way home Candace was quiet and I asked her what was up. She said, 'Don't you feel sad when you see all that Sam can't do - he couldn't jump and do what all the boys his age are doing'. It was a very sweet comment as her caring heart for her brother came out and I realised I was speaking to myself as I said, 'Yes, I do feel sad for him so often, but when you have been told your child will probably not survive labour, when you're told he probably wont ever walk etc, etc, ... how amazing is it to see him running around on trampolines!'. It was a good lesson for the both of us about how perspective and what we decide to listen to impacts our every day. We talked about how it is so important to acknowledge the emotions of pain/sadness/disappointment etc as they are totally valid, but if we allowed ourselves to dwell on those thoughts of sadness the joy of the past hour of seeing him laughing and enjoying it (albeit in what looked like a limited way) would be stolen. We talked through the bible verse, 'Be transformed by the renewing of your mind' and how it was our choice what we thought about and how our thoughts are so powerful as they turn into actions. She perked up as we talked and laughed with Sam and talked about all the cool things he loves doing - he listed off 'Going down the slide at school, the trampolines, wrestling with Mum (it is a daily activity in our house and I apologise in advance if you happen to pop in when a session is in mid flow, as Sam doesn't see anything is an excuse to stop!),'. Below is a photo of the two of them the next evening (just be grateful there are no wrestling photos):</span></div>
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<span style="font-family: "verdana" , sans-serif;">So I leave you with some great quotes that I heard this week - I hope they help you to see a bigger perspective and to find things to be thankful of in the midst of what ever storm you are weathering. I like these quotes because they don't pretend all is perfect, but they give us courage and hope in the midst of hard:</span></div>
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<span style="font-family: "verdana" , sans-serif;">'Contentment is the greatest form of wealth'</span></div>
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<span style="font-family: "verdana" , sans-serif;">'True wealth is measured not by quantity but by the quality of calm amidst the storm' (I was a millionaire today!)</span></div>
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<span style="font-family: "verdana" , sans-serif;">'To be content is to be ok with what I don't have'</span></div>
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<span style="font-family: "verdana" , sans-serif;">'Comparison is the thief of joy'</span></div>
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<span style="font-family: "verdana" , sans-serif;">Goodnight </span></div>
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Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-5091723424725075332017-05-01T00:19:00.000+12:002017-05-01T00:19:15.336+12:00Not all challenges are medical<span style="font-family: Arial, Helvetica, sans-serif;">I've lost my mojo with the blog. I've always maintained I wanted to portray Sam holistically as a normal little boy with delight in cars, has fun with his siblings, is social and fun.... and he happens to have some medical stuff going on.. I've been struggling because to be truly honest about his well being now is quite sad to write about - he is doing quite well with living with</span><span style="font-family: Arial, Helvetica, sans-serif;"> chronic health conditions, but it is the chronic sadness in his heart, which is affecting his behaviour/speech and outlook that is so very painful to watch. </span><span style="font-family: Arial, Helvetica, sans-serif;">Sam is deeply loved by both his Mum and his Dad, it's just that his Dad doesn't live in the same house anymore. Sam doesn't understand this and his pain is palpable. Sam adores his Dad and they see each other regularly and whenever they can, but it doesn't make sense to Sam and every day he is upset. </span><span style="font-family: Arial, Helvetica, sans-serif;">This impacts my every medical interaction with him as it now takes longer to do his cares as he is challenging me at every turn. </span><span style="font-family: Arial, Helvetica, sans-serif;">Sam has become verbally and physically abusive at times -</span><span style="font-family: Arial, Helvetica, sans-serif; text-align: center;"> It is upsetting, but I know it is just him trying to make sense of it all. I just hug him tight and tell him I love him and nothing he can say or do will make me ever leave - I'm here for ever! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="text-align: center;">Last week he met with a child psychologist and it was really amazing to watch her connect with him and get him talking about his 'big feelings' and that it was okay to be angry and sad. I am so conscious that humans are not separate compartments and that physical health is affected by our mental and emotional state and vice versa. </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">He is a kind sweet boy and today his sisters were very sad about some 'stuff', so he sat down and wrote them a note.... so cute to see him doing this for them. He walked in to Jasmine's room and kissed her sleeping cheek and gave her her note - ahhh, it makes up for all the sibling fights! See if you can read the note - so adorable!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It has been school holidays here, so one day we parked the car at a local train station, went on a train trip in to the city, then jumped on a boat! Sam loved his day out experiencing transport that wasn't cars! On the way back he was sharing earbuds with his sister (listening to the sound track off 'Sing') when a commuter sat next to him - it was very funny to see his face as he squished over nearer to us for safety!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">You may remember about 2 months ago there was a medical incident where Sam was given a very strong drug at the wrong time - several hours too early. Sam had to have extra renal function tests and 3 weeks ago he had an audiology review. Sadly it seems that he has hearing loss in his right ear with higher frequency waves. This is disappointing, yet not surprising. Sam will now have 6 monthly hearing tests and an ACC claim has been put in as it could be he requires a hearing aid in the future due to this injury. It saddens me that he was harmed - it was avoidable at several stages, but it still occurred. I have worked hard over the years to try to improve patient safety and I will continue to. Here he is having his hearing tests. He was so good at concentrating for around 45 mins. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Over the years Sam has had some amazing people in his life. One of these has been Leigh - she started as an overnight watch about 5 years ago when she was a 3rd year nursing student. She would come to our house twice a week so we could sleep and she would be in with him. In recent years she would give us respite and hang out at home in her new role as RN. The girls just loved having her around as did Sam and she has become a very special part of our family. Last week we had a fun filled 'last supper' with her before she flew the coop to Australia.... life is so enriched when we do life together!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Tomorrow is Sams first day back at school after the 2 week break. He is looking forward to seeing all his friends again ... and of course seeing Ange again (his trusty carer). This week Sam has just one visit to hospital on Wednesday. Last week Sam had a chest xray, just to compare with previous images and to see how he is doing.....the images show his lungs are quite mucky so need to make sure we are doing twice daily chest physio.... as well as his leg physio to try to help his gait/hip alignment. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Feeds have been increased now to higher proportion of the multi-fibre higher energy feed, so he is now back down to 12 hours - it is so much easier having him hooked up for less time. And this time the output has not slowed/thickened to point of crises like it did at the end of last year, so we are hopeful to continue changing up the feeds in the next week. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So Sams life is just like yours and mine - a combo of mental, emotional, physical and spiritual challenges. With Easter having just passed, I read an inspiring book about the life of Mary - the mother of Jesus. An angel told her she would have a baby who would be the Saviour of the world... and she would be called blessed'. The book looks deeply at our concept of 'blessed' - so often we think of comfort, wealth, abundance, good health etc.'. I wonder how blessed Mary felt sitting in the dark at the foot of the cross her precious 33 year old son was hanging dead on? Yet in the darkness God was doing his greatest act - across town the veil that separated God from mankind was being ripped from top to bottom so that anyone could now be in Gods presence - not just a privileged religious few. In the greatest darkness the greatest act of love and hope and reconciliation was taking place. </span><span style="font-family: Arial, Helvetica, sans-serif;">I find it fascinating that a 33 year old man that lived so long ago is still at the crux of history and debate..... Every night I read Sam a bible story and pray with him before he goes to sleep. Today we read a compilation of bible verses, 'God cares about every detail of our life, He collects ever tear, he knows every hair on your head (a quick count for some!), He knows all we are going through, He loves you and cares for you' . </span><span style="font-family: Arial, Helvetica, sans-serif;">That knowledge fills me with hope and joy as I look to the week ahead, knowing that God sees every time I hook Sam up, drain a kidney or hug him through his tantrum and heart pain. </span><span style="font-family: Arial, Helvetica, sans-serif;"> </span><span style="font-family: Arial, Helvetica, sans-serif;">I can confidently walk knowing God is present and working, even in the darkness and unknown of life. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Sleep well X</span></div>
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Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-66276984842746634892017-04-02T23:56:00.000+12:002017-04-03T00:11:51.760+12:00Some humourous musings ahead....<span style="font-family: "arial" , "helvetica" , sans-serif;">First up, sorry for the long silence.... and for all those wondering if Sam needs his legs broken and re-set.... thankfully the answer is NO! The CT Scan came back with nothing of concern re his bones, just a muscle issue, which the physio is already drafting up new exercises as we speak! It all sounds so easy, but even fitting in his twice daily chest physio amongst normal family life is a challenge sometimes.</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Sam and the school Year 3 group went on a school trip to a local venue and took part in all manner of team building exercises. I went to help and it was an eyeopener. Having watched Sam at play I would have to say he works best solo! The photo below makes me laugh every time - the whole team is doing the right thing and Sam decides what he wants to do!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Tomorrow I need to call a lady I met at church today to apologise for my nuttiness! There were about 10 kids in Sams group all making crosses out of coloured jellybeans. Imagine lots of noise and hands in the lolly jar etc. At the end a Mum came up to me and said, 'I saw Sam lick a jellybean and put it back in the jar'. I was so surprised that he had that my response must have seemed so weird without knowledge of Sams uniqueness! I said, 'Oh are you serious? Did you see him do that?' She said 'Yes I definitely saw him lick it and put it back'. At this point I replied, 'Wow, that is SO cool... I am so proud of him - that is awesome'. I turned to Sam and said, 'Well done for licking the jellybean buddy - great work'. At this point another group called for my help and I wandered off, but I did note the Mum was staring oddly at me. I was telling Candace about it on the way home and her look of horror and gasps of 'Mum that is so grosse', helped the penny drop that the woman was letting me in on inappropriate behaviour that I may need to address... instead I was commending the boy for trying food (if jellybean is found in a food group?).</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The week ahead is busy for Sam and clinics. </span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Monday: Gastro Clinic at Starship,09.30am</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Wed: Clinical Pysch nurse at Starship 12.30 - 1.15</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;"> School - meet the teacher 2:15</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Thurs: Sam has a half day at school,afternoon he has a special surprise friend coming to see him</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Fri: Audio tests Middlemore Hospital 08.30</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">I forgot that last week Sam brewed another UTII - he came home from school early on Monday and Tuesday I dropped in a sample at the Manukau Super Clinic. I have done this many many times over the years with zero issue. Well it seems that the week before there had been a change in systems and they would no longer accept any samples without thei letterhead. I had been using a generic hospital/starship lab form, but now I needed a CMDHB lab form. I understood their reasoning, but I understand their reasoning.....but I managed to convince to let them accept this one last sample with promises of me going to get the approved lab forms from now on. I pretty much grovelled and begged - it worked! So Sam came back with another uti. I had emailed his Paediatrician about Sams unwellness and an out-of-office emal bounced back as he was in Australia. That evening I was at netball to pick up Candace at 7pm and I get a call from the Paediatrician - seriously how good/kind/amazing is that - he called me from Australia with a plan! It was very very appreciated. As it was out of hours, the plan required going to Middlemore to get the prescription from a Dr that said Aussie roaming Paediatrician had contacted. Then a trip to the out of hours pharmacy. I was so very grateful for the attention to detail from the Paediatrician and his team and to Francis for doing the night run to get the script and drugs. around 9:45pm Francis arrive with the drugs, so Sam could take his first dose promptly. It was truly a team effort and the uti seems to be clearing and Sam is well and happy.</span><br />
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<span style="font-family: arial, helvetica, sans-serif;">Thanks one and all. XX</span><br />
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<br />Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-49757913167938060062017-03-18T23:39:00.000+13:002017-03-18T23:39:00.246+13:00CT ScanYesterday Sam was a superstar! He had a CT Scan appointment at Middlemore Hospital - the orthopaedic Dr had ordered it, as they want to see if his unusual gait/poor hip rotation is due to a bone anomaly or if it is a soft tissue issue. The Dr told me that if it is a soft tissue issue, rigorous and ongoing physio work can help with that. I dared to ask what was the plan if it showed that it wasn't a soft tissue issue? At this point I think it's fair to let you in on a hospital joke that is whispered along the corridors by parents and medics alike. I was never good at jokes and I forget most of it, but the punchline was along the lines of 'Surgeons and Anaethetists relate best to unconscious people'. So with that in mind, I will tell you his response to my question. Without changing his manner, tone of voice etc he said in a very steady calm voice, 'oh it's a relatively easy fix,, we just break both femurs, insert metal rods.......' and I didn't actually hear the rest as I was so aghast at the statement he had casually deposited in my lap! I think I muttered something about let's just hope it's soft tissue then and not make any plans until we see what the CT Scan reveals.<br />
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So yesterday Sam and I went in to the room with the giant donut - Sam was very verbal in the fact that he was scared. It is a big machine and also in a room that is very 'hospital'. I told him 2 things - that Uncle Pete can do this kind of thing and he would be so proud of Sam if he could do it too and we could call him after the scan and they could compare notes! This settled him and he allowed the guy to tape his feet and legs together. Then they lay the blanket over him and with giant velcro straps they tied him to the bed. This was another point he was screaming and scared and I went delivered my second statement/blackmail here - 'if you are really good and lie still we will go to the shop on the way home and you can buy a new car! Well that worked a treat. I stayed in the room with him and he had a few verbal wobbles as the machine started whirring and then again as the bed moved in and out of the donut... but mostly he was absolutely brilliant. Trusty Bee was at his side and I chatted and sang to him the whole time. 7 minutes he lay perfectly still - I was so impressed with him. This was the first time he has done something like this without anaestetic. As soon as it was over he was of course reminding me of my 2 promises and I think he reminded me about 32 times between the end of the scan and actually stopping at the shop to buy the car. My memory is getting bad as I get older, but Sam was taking no chances!<br />
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On Wednesday we were in Starship for an hour with a child psychologist. He will be having 5 sessions over the next 5 weeks for 1 hour at a time. He has one-on-one with his new friend and they play and chat and she assesses how he is doing. This programme is often done with children at this age who have lived with chronic health issues. Sam has been vocalising more and more how he wants to 'rip out my tubes' and 'he hates his mitrofonoff' etc. So it will be good to hear her feedback after the sessions to see what we can do to help him cope with his challenges. As always the physical challenges are significant, but things of the heart are harder to quantify and treat and definitely more significant and impacting on his life at his age/stage.</div>
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Hsi UTI has cleared (yay!), but he is sounding a bit chesty and sneezing a bit, so am making sure we are doing his chest physio twice a day and keeping a tabs on what bugs are at school.</div>
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I leave you with a photo of him with his new AA membership card - he was telling his Aunty Elaine all about it,.... if only she could have seen down the phone! I know there is skype, but we were just using a landline phone - gosh, feels very last century.....</div>
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Thanks for keeping in touch with the little man!</div>
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<br />Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-79285456271336489342017-03-06T23:10:00.001+13:002017-03-06T23:10:11.185+13:00It has been a better week!Sam has been at school and the uti has cleared up - he has been off meds for a week. Today he is complaining a little of pain in the groin area and been requesting more bladder washouts, so I am hoping and praying we can keep bugs at bay. Every 2 weeks I alternate medicines to hopefully trick the bacteria - for 2 weeks Sam takes a drug that makes his urine more alkaline and then the next 2 weeks it's something to make the urine more acidic - the verdict is out if it actually works, but we are up for anything if it means he has less infections. It does mean that I have to find the medicine grinder and grind a med up and I can't find it right now... a rummage in the medicine cabinet is about to ensue!<div>
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This week Sam has two hospital appointments. The first is tomorrow at 2.30 pm with the orthopaedic team. He hasn't been on their radar before, but we have been referred as Sam has quite a wide gait and his hip movement is quite limited. This is exploratory to see if there is something that could be tweaked to improve his movement and to see if there is actually some physiological issue that could be corrected. This clinic is at Super Clinic in Manukau - not Starship. I like going to this clinic as there are masses of free car parks and I don't have to fight with city traffic.</div>
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On Wednesday Ange, Sam and I will venture to Middlemore Hospital to take a tour of the children's wards. This hospital is in our catchment area (around 25 mins drive away) but we have never been admitted here. Should Sam have a simple medical need (hmmm, that would be lovely, but I'm not convinced this plan is going to be in Sams best clinical interest), he is to be admitted here first. So this visit is to familiarise ourselves with the ward, meet the staff and have a chat re his specific needs, meet the play specialist and other medical people so that Sam can be relaxed and familiar should an admission happen. I think it's an appropriate move, and as NZ has a free health system (which I'm so grateful for), it doesn't mean we have much say in treatment, or the luxury of choice. I am thankful for common sense kind practitioners who are open to discussing the finer points of having Sams care across two hospitals and Health Boards.... let's say the discussions are robust and lively between us all and this 'Mumma Bear' is not going to let her cub out into the unknown with out a systems check etc.</div>
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Sam and I share a really massive room - it's quite long and would probably have been the lounge in the original house. He is at one end with his pumps and stacks of medical gear, and I am in the other end with french doors/dividers in between. It works well as I am far enough away from him that I don't hear the whirring of the pumps, but close enough for when he shouts out needing attention in the night. Last night he woke me 3 times (about the norm). Once to say his ilieostomy bag was full and could I empty it, once to say something had leaked and could I sort it (a feeding tube had leaked) and the final time was just to tell me he loved me! It was so cute....'Mum, Mum, ..... wake up....', 'hmmm, yeah, what is it.....', 'Mum...... I really love you'.... and then he went back to sleep! I need to work on appropriate timing for him, but it is lovely to hear it even if at 4 in the morning!</div>
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A very exciting development is happening on Thursday night - my new 'Night Watch' is starting. Sam has been re-assessed and he has been given funding for 1 night a week to have someone be with him overnight. This angelic being (anyone that gives me sleep automatically jumps to Angelic Status!) will rock up Thursday around 10 pm and will be in with Sam til 6am. This angel will deal to Sams pumps/feeds/meds/every whim and I shall sleep on the couch in the lounge and hopefully ignore them both!. I am very grateful to have found a lovely local third year nursing student, whom Sam already knows and is comfortable with. So look out Fridays -like an aging old caterpillar I may stumble out of my cocoon having had some beauty sleep. I doubt I will look any different, but the view of the world is definitely better with uninterrupted sleep mixed in!</div>
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Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-26615728756224794392017-02-23T22:48:00.003+13:002017-02-23T22:55:09.124+13:00What a week!If you asked me last Friday to describe what I wanted my week ahead to look like, it wouldn't have been the week that turned up!<br />
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Tonight I tucked Sam in, and cut off his third Starship wrist band for the week. Monday it was Surgical Ward (24b), yesterday was CED (too bizarre a story, I don't have the desire or energy to revisit it but thanks to Tania for jumping in to rescue us!) and today was 26b!<br />
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Bur firstly, a touch of lovely. A dash of uncalled for kindness. A pinch of humans doing what they could for other humans. You see, living with chronic health means that 24/7 health is an issue. There is not a day, nor moments in the day where Sam isn't limited or aware of his health. Today was no exception, except that he had a lovely distraction, a momentary interlude from it.<br />
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Last month our local paper featured a front page spread about how Mazda Foundation had funded Sam to the value of an ipadPro, to help limit interruptions to Sams schooling due to hospital interruptions. The comment was made how much Sam loved cars and he dreamed of one day being an AA mechanic. A person read that article that works for the AA and he took his thought up the chain to management and organised for an AA visit to school for Sam and his friends. After many calls and Sams nearly exploding excitement, today finally arrived.<br />
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The AA were booked for 11:30am. At 11:10 Sams carer calls me - I can barely hear her above Sams screams in the background. I manage to make out there had been a serious mis-hap and Sams GJ tube was broken. I was at school by 11:15 and could hear Sam from several classrooms away! Fortunately the hysteria was not due to pain, but due to him figuring out he may not get to see the AA..... as he has talked of nothing but that for past 3 weeks!<br />
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A quick call to Starship and it is decided if I can plug the hole/create some temporary measure we would try to keep him at school. Basically the end of the attachment had snapped off, so you couldn't close it, which meant as there was no resistance, his stomach was emptying.... just pouring out and he was soaked. So Ange and I lept into action. We chopped 2 fingers off hospital gloves and stuck them around the hole, taped them on and repeated. Then we got a very large pile of gauze and tape and bandaged him up. Sam had calmed down once he realised he wasn't going to miss out! Thankfully the bodge job held up for the required 30 mins or so! <br />
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I'm not sure if it's cool to stick up photos of his class for privacy reasons, but I will pop up one that shows the fabulous AA team that came. Mike and Chris were so great with the kids and they were assisted by Mehpara (who made it all happen). They did a little talk, presented all the kids with a driving pack (pencils and colouring in travel adventure). Sam was presented with an AA badge, a car speaker, a battery pack (for iPad) as AA do batteries, an AA umbrella, a ferrari mouse mat and a youth membership pack - so I can go on line and he can become (probably one of the countries youngest) bonafide AA member!<br />
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After this the kids were able to explore the AA truck and another older vehicle (which had very cool horn sounds - even included a chicken!). It was a delight to see the kids having fun. <br />
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In this photo Sam is holding his tool kit and wearing his AA gear - the toolkit even has baby sized jump leads and all sorts of tools. He loved showing it to the AA men! Mike is holding up Sams AA Membership pack.</div>
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And then we headed into Starship for 2pm. 2.30 he was under sedation and 3pm we were in radiology. Sadly it took over an hour to change the tube, as it is fiddly. Sam was awake, but medaz makes him a 'happy drunk' - entertaining in itself. Thankfully he wont remember the death threats and abuse he hurled at us all - and I'm not even joking! If both my hands weren't used to restrain him, whilst sweating in hot yellow plastic hospital gowns, I would have recorded it! </div>
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We got home tonight around 8 and he is happily asleep thinking of wheels and yellow and white striped vehicles filled with kind mechanics (or that's what I imagine). Sams final words tonight were, 'I don't think I can sleep - I'm not tired, I need to think about the great AA day!'. </div>
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Sams bedtime comment made me smile..... Today he also had a GJ tube snap, been soaked in bodily fluids and cried as I stripped his soggy clothes off him, been anxious about going into hospital, fought with me and a nurse as we wheeled him into radiology, lay pinned to a hospital bed and been restrained by 3 people for over an hour while a radiologist manipulated a wire in his tummy and sat hooked up to an IV infusion..... BUT the kindness and generosity of the AA, made possible by someone giving up a bit of their time to do what they could to bring joy to a stranger (Sam) is what Sam remembered as he fell asleep. The rest of the tough stuff still happened, but today he was just a little boy having fun and he got some respite from his health- and that is respite for a Mums heart.</div>
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The AA's actions meant so much and it challenges me, because all around me are neighbours, people living with 'chronic'. Maybe it's sadness or depression, financial woes, a bereaved person struggling with loneliness, older people who have lost their independence, people that have fled other countries, an unknown health challenge to climb..... the list is endless because life is just plain hard for everyone at some time or another. But the above challenge requires a choice - a choice to live generously - to sacrifice time and energy to use what I have to make someone elses day a bit better, expecting nothing in return. Equally, maybe there are some (um... not us cos you all know about us) that need to open up and do life stronger because you've allowed others to walk alongside you and share in your struggles. </div>
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I'm seriously hoping that tomorrow is a very dull day - I'm not sure I can cope with another crazy one. Candace is back from school camp tomorrow, and I am so glad she has missed this week of crazy and she could just be a kid, but I have missed her terribly. Jaz has done so well being largely ignored, but she is great company and hilarious and quite able to whip up a basic meal (yoghurt and cereal IS an evening meal in our house!).</div>
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Ah my ramblings help me to sort my head after the adrenaline of a 'day-in-the-life-of-Sam' - tis as much for me as any reader that persevered! Thank you for those that pray - I believe God is with us each and every day giving us the strength, joy and peace to walk. His courage and hope never runs out when mine does.... and He can cope with my rants and disappointments, for there are many of those too!</div>
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And a bad joke to end with that I heard in hospital today:</div>
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Q: What do you call a three humped camel?</div>
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A: Humpfrree</div>
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Goodnight X</div>
Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-70894229762329153282017-02-21T23:29:00.001+13:002017-02-21T23:29:19.766+13:00Frustration..... but Sams ok!Sam was discharged from hospital on Friday evening, after having his IV meds at 4pm. A referral was completed and sent to the Home Care Team so that he could have his Saturday dose at 3pm in the community. The drug he was on (amykacin) is very strong and has to be closely monitored as to how much is in his blood and the daily timing is crucial. The referral also stated Sam would be at his Dads place for the weekend.<br />
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On Saturday morning I was woken by the Home Care Nurse.... um, anyone that knows me knows that I love sleep.... and having not had a decent unbroken sleep in weeks, I was less than impressed that the nurse hadn't read the referral and woke me up! That afternoon Francis and I were texting about some school supplies for Jasmine, when I asked him why was he in a shop at 3pm - he should have been home with Sam having his infusion. It turned out the nurse had shown up and given the drug at 11am! This was basic nursing not being done - checking the timing of a drug to be given. And if you aren't familiar with the drug there are protocols easily available to check.<br />
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Sunday afternoon I attempt a nap, well aware that Sam was coming home and therefore no break for a couple of weeks...... the nap never happened as Starship called to say that Sams blood trough was very high. The drug that he had been given should have been in the range less than 1 - his reading was 8! So after a couple of calls with Starship to try to figure out a way forward, it was decided that Sam was fine at home and someone would call me on Monday. So Sunday nap also gone.<br />
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Sunday night I spent 30 mins writing to Sams Paediatrician asking for his advice and to ensure a complaint/Incident form was to be completed. I could have ignored it, but it irks me that sloppy nursing hurts kids - there needs to be accountability and to see if there are things that can be improved so this doesn't happen again.<br />
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Monday morning I had no idea if I would be able to do anything I had planned that day, but by 9am I had taken 3 calls (1 Starship surgeon, 1 Home Care Team, 1 Middlemore Paediatrician) all trying to figure out what to do. In the end Sam went to school as usual and I collected him at 10:30 and went to Starship. He had bloods taken and they were sent off to check his kidney function and drug levels. We hung around, loitered in various friends rooms and play rooms, awaiting the results. These came in around 2.30 and the level was down to 1.1. The pharmacist decided the Monday dose could be given, but we were to wait until 4 for that, so the level would have dropped below 1. We were about to leave at around 4:45, when we were asked to await some other blood results.... At 6pm we got the all clear to leave with his Creatinine (Kidney function), Potassium and drug levels all in an ok range. <br />
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The knock on effect of human errors in the medical world is huge. I understand that humans make mistakes, but sadly the fall out is far greater than some receptionist making a typo. Thankfully it seems that Sam wasn't physically harmed this time. He did however miss most of a day of school, which he can ill afford to miss. Last week he made school only for 1.5 days - it is disappointing when he misses them needlessly. No hospital board pays my petrol when one of their staff messes up, my girls are at home fending for themselves when we had plans, my plans for Monday didn't happen. Comments that staff make in the hospital intrigue me, as it shows they become blinkered to the human being they are treating. I left hospital after comments like, 'just <b><i>pop back</i></b> later then....', or 'come back tomorrow <b><i>if you want</i></b>....'. I don't <b><i>want </i></b>to <b><i>pop in</i></b> to hospital, I <b>do</b> have a life and enjoy reading and walking and more things than discussing blood results and I <b>do have two other children </b>that are trying to be kids and they need me.<br />
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I'm not sure if this will ever change much..... it's been 7.5 years and many de'ja'vu moments for sure. <br />
People are people wherever you go - some work passionately, some work for a pay cheque, we all go through our day with our own unique set of strengths, weaknesses, joys, lows, distractions and concerns which impact how we function and relate. <br />
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Today he left school 45 mins early so he could be at home to have another blood test/trough and then hooked up to his IV drug by 3pm. Tomorrow I should get a call with the level, to see if he can have his second last dose.<br />
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Tonight I am thankful that Sam is asleep happily after a big giggling fit that nearly made him vomit! . I had to lean over his bed to get the controls (it's a hospital bed) and he thought it was hilarious when he put his legs on me and I feigned that I was pinned under him. After 10 mins of 'again, again... reach for the controls again' he gave up and asked for a vomit pot. It is so lovely just enjoying the moments of that unbridled giggling (not so cool re the vomit) - just normal kid stuff!<br />
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XFrancis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-6775683256154626222017-02-16T09:12:00.002+13:002017-02-16T09:12:29.510+13:00IPhone post - FTS (Fat Thumb Syndrome)IPhone posts are slow due to severe typos due to fat thumbs, but here goes. I leave the laptop at home for the girls for school work. Speaking of the girls - I am so proud of them staying home all independent (& secretly delighted to be trusted). I am very grateful for tenants downstairs who can keep an eye on them!<br />
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I write this from Ward 24b - Surgical Ward at Starship. After various calls and negotiations between teams-hospitals, I was asked to bring Sam to Starship. We arrived st 2.30 yest afternoon. Around 6 pm he had his first dose of an IV antibiotic as well as his daily dose of anti-fungal. By 8 we were on the ward. Thankfully he had a really good sleep - no temps, no waking in pain! His urines are both still very sludgey, but he is well in himself. We await a plan, but due to him not being hooked up to his feeds until 9 (usually is 6 at home), he is bed bound until 11.<br />
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So we await a plan - I'm guessing they may want to keep him one more night just to be sure. That would actually work well for me as I have a 9.30 Starship Clinical Excellence Committee meeting tomorrow, so either way I need to be in SS tomorrow. It would be nice to just get up and roll in from the wsrd ... Im tempted to stay in my PJs ...... hmmmm<br />
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Francis popped in last night to see him, so he was very excited to see him. This morning Sam is sitting in his bed playing with cars amd his caravan - no surprise there!<br />
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Right, I am off to find real coffee!<br />
XFrancis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-40585466592066926662017-02-15T05:33:00.000+13:002017-02-15T05:33:41.540+13:004.30 amYes it is 4.30 am and I have given up on sleep. Sam is watching TV from his bed (Doc McStuffin) and I thought I may as well do something productive.<br />
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Every 30 mins since midnight Sam has been screaming out in pain. The only relief that seems to work is to give him a bladder wash out - push 60 mls of warmed saline into his bladder with a syringe and then drain it out. It gives instant relief, he goes back to sleep until the next round of pain wakes him screaming again. He is so tired, but I am hoping the distraction of tv, will give him some distraction from pain. He has Pamol and Ural on board, but it doesn't seem to be doing anything. <br />
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Mondays clinic went well - It was decided to take urine samples and a blood culture off his port. Both urines are growing bugs. The quote was 'a Zoo of bacteria'. It seems he has a fungal/yeast infection in his bladder, which we are now treating with an oral med (Fluconazole). We await results of which type of bacterias (I think 3 different ones present) are growing so the Infectious Disease team can figure out a treatment plan for that..... (just off to do another bladder washout - that was only 20 minutes).<br />
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OK, it is now 4:49 and I am back. Ironically Doc McStuffin just said to her sick toy, 'you know, you should take a nap'. Great advice!<br />
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This week has been trying. The cumulative affect of living with broken sleep is tough on everyone. School is a good distraction for Sam, but I wonder how this affects his development/brain/emotions. He went to school yesterday in spite of broken sleep the night before, but tonight has been so much worse, so I think I will keep him home today. Ange (his carer) can stay with him and do some school work, so I can go back to bed. I feel like a shift worker, but there is still so much to do in the day to keep him ticking over. Yesterday I took 4 calls from Drs and had to drive to Middlemore Hospital to pick up meds, plus I needed to drop in new prescriptions for his feeds. It is now 4.55 and I need to go to him again.... poor wee guy, the day (or night) in the life of Sam can be very unpleasant for him.<br />
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The plan tomorrow is hopefully to take a call from his Paediatrician at Middlemore to find out a treatment plan for the bacterias. It could involve being admitted to Middlemore (more on that later!), a nurse coming home to start him on IV meds, or another oral med thrown in the mix.<br />
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So Sam has always been treated at Starship - NZs only childrens hospital. Kids from all over NZ come to Starship for specialist care, if it isn't available in their local hospital. Sam is under many different teams (Surgical, Urology, Gastro, Cardiac, Respiratory and Renal). But because we don't live within the catchment zone for Starship (ie, it isn't our local hospital) Sams lead Paediatrician has to be in our catchment (Middlemore). And this is where crazy politics comes in. If any child presented with a UTI, it is usually dealt with by a Paediatrician - no further specialists are involved. So after 7.5 years of being treated in Starship it has now been deemed that Sam should be treated by his local hospital (ie his Paediatrician). Now his Paediatrician is fabulous - kind, clever, lovely manner with Sam etc.... but nothing is ever straight forward with Sam and although Middlemore are now taking him on, his urinary tract is affected by the dozens of surgeries he has had and the bacteria is also linked to gastro issues. It means that we will potentially be admitted to a hospital where the nurses will all need to be trained in bladder wash-outs etc... as these aren't common practises. Of course any nurse could learn it (I do it and I'm not a nurse), but I am feeling very vulnerable with everything being new... and also not having a choice and just being told suddenly this is what will happen. I am concerned that Sam may not get the care he needs and that it will be back like days of old in Starship where I was always required to be at his side to make sure his whole self was cared for. I am also so aware that historically Sam doesn't remain straight forward, but once admitted there is need for surgical input or his lungs become compromised and he needs respiratory input/care.... I am unclear what happens at that stage and am assuming we would then get ambulanced to Starship where all those specialities are? Interestingly even the girls are feeling vulnerable, as this is all new to them - Starship is familiar to them and they know where to go for places of quiet, to find free food etc when they need a break from Sams room. So this is going to be an adjustment for all, but underlying it is an anxiety that Sam needs to continue to get the care he requires. I know I don't understand the full story and am not privy to the many discussions that go on behind the scenes to care for Sam, but being in a place of forced transition isn't very nice.<br />
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Anyway, these are questions for Sams Paediatrician tomorrow/today. It is now 5.22 and I have just done the 4th bladder washout since I started this less than an hour ago..... hmmmm, will also be chatting to the Dr about pain management, because this is not a good quality of life for Sam.<br />
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I was going to head away with the girls for the weekend, but I think I will cancel as I need to catch up on sleep from the past 2 weeks, ready for the next 2. The girls are a bit disappointed, but then they also live in this house and see what goes on, so they are kind enough to understand. We have some free tickets to Rainbows End (theme park) so they may get to use these instead if the weather is good. I have got some extra funding for 1 night a week of an overnight sleeper - the paperwork to employ her is also on my list to do tomorrow - that will be amazing to have in place and will be a huge help.<br />
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Right, it is now 5.30 and I will try to get Sam back to sleep. It would be nice to get an hour in before the girls get up ready for their day.Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-33320300659212412092017-02-10T00:03:00.002+13:002017-07-26T20:24:12.740+12:00Many thoughts....This past week one of Sams Starship buddies lost his battle with his challenging body. Another beautiful Starship Warrior has left us.<br />
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The bonds you make on this journey as the parent of a child like Sam are hard to explain in words. As you mingle in the ward corridors, waiting for time to pass as your children are being operated on or for results from various tests, there is an unspoken understanding of the common pain and heartache we share. The understanding of physical and mental exhaustion doesn't need explaining. We enjoy the highs with them and weep with each others failed procedures. We understand how hard this journey is, yet we know how much harder our journey will be with out them. Sadly this became the reality of another dear family this past week.<br />
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I have learnt so much from this couple as they adopted their boy, knowing he had huge medical challenges. Their generosity was evident to all as they sacrificed their time and lavished their love on him. And the results were so beautiful to behold. A boy that knew he was loved. Although non-verbal he communicated so very clearly his joy and security in their family. I can not fathom how hard it will be for them to now do life without him..... but they will, just as others have done before. For life is each day, with pain, with challenges, but always with hope. As they shared their belief in a loving God, at his funeral, their strength and confidence in tomorrow came because they have walked this journey with God helping them each step of the way.... and He isn't about to stop now.<br />
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The funeral was a beautiful celebration of a short life, but one that impacted everyone he met. My heart is sad as I will miss him. I grieve for his dear parents knowing it will be empty days ahead. I grieve for other friends who have walked this same lonely road.... and I hug Sam a little tighter tonight, as I have the privilege of being his Mum.<br />
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His UTI isn't clearing and he has been in a lot of pain - especially through the night. He has been waking 4-5 times each night and begging me for a bladder washout. It seems to give him relief for a short time. Today Starship thought an ultrasound would maybe help pin point the infection. At 2.30 I picked him up early from school and took him in for 2 ultrasounds. The first was with a full bladder and the second one after I had drained it (and the urine was sent to the lab). The kidneys were also scanned. The good thing it showed was that the bladder was totally emptied by doing a manual drain. This is good, as even a little residue of fluid could be potential for infection. Tomorrow hopefully someone from the gastro team will call me with a plan, as his antibiotics run out tomorrow and he will need something to help clear the urine. Tomorrow is mufti day at school to celebrate Chinese New Year so he is very excited to be wearing his red t-shirt to school. It is very handy that Santa and the Chinese both like red - once less thing for me find!<br />
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I leave you with photos from the weekend. We tried to devise a system which involves less screaming so that other beach goers can enjoy their day out. A big thumbs up was given 'kayaking' with Uncle Greg in Beachlands.<br />
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And first day at school photo from last week, which every child tries to get out of, but they really have no choice.....eventually all 3 made the shot! Sam adores his sisters and they are so good with him.<br />
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This weekend will be shaped by whatever hospital tell us tomorrow. On Monday Sam has a mid-day clinic with the gastro team to decide how to change his feeding regime to shorter hours and higher calories. Somewhere in the weekend we are hoping to catch up with friends for a picnic/play date on Saturday, Sunday is church in the morning and hopefully another beach outing in the afternoon. As usual all plans come with the caveat, 'depends how Sam is'.<br />
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Enjoy your weekends.Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-2317262703422728912017-01-30T22:51:00.001+13:002017-01-30T22:51:35.104+13:00It's been a while!Hello again! 'Pinch and a punch for the first of the month' is nearly upon us again.... and tomorrow is Day 1 of school for Sam. He will be heading in to his year 3 class, with Ange (his fabulous Learning Assistant/carer) with him. Sam went to bed concerned over which playground he would have access to, but I hope my assurances that he would be told would all be very clear in the morning.<br />
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Sam has had a busy summer, with mostly good health. This summer has been very different for him, as this is the first year without an exposed Central Line - his new Portacath is embedded under the skin, so this means he has been able to be in water! Sadly the NZ summer has been rather lack lustre, with it only really arriving in the last 5 days, but he has been able to get out in the water and grow a little in confidence.<br />
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Sadly the last 10 days Sam has had another UTI (Urinary Tract Infection) that has meant antibiotics 4 times per day/6 hourly. The bacteria that grew from his urine was a totally new one for him and so odd that the lab requested I send in another sample in case it was contaminated. On Friday morning we popped into hospital and dropped in a sample, which sadly confirmed that he truly is growing this new organism. Unlike all the other myriad of UTI's he has had, this one left him in a lot of pain (waking every hour and begging for me to give him a saline bladder wash out), BUT his urine stayed clear. Usually the first sign of a UTI is the urine turns milky and thickens. So this was a weird scenario all around.<br />
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I start the year again so grateful for medical care 'second to none'. Yesterday (Sunday afternoon of a public holiday weekend), Sams Paediatrician phones me to sort out a change in antibiotics and to check in on Sam..... so so grateful! Sam is currently clinically pretty well, so we are hoping the next 2 week course of antibiotics will clear it and all will be fabulous. This week Sam also has an outpatients clinic on Thursday afternoon (he will miss a couple of hours of school). I will also do a class chat with his classmates, which is thankfully accompanied by Sams play puppet, Sammy James Jnr, to help educate all and sundry in an age appropriate way. I think I also have a middle school staff meeting to attend to help the staff have an awareness too. <br />
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Sam has been much more vocal about his medical stuff over the past 4 weeks. He has been telling me he hates being 'special' and 'I wish I didn't have tubes anymore'. This is all very normal behaviour, but I would appreciate prayers for wisdom as I help him through what is his reality. I would honestly switch places in a heartbeat if I could, although I really dont know how I would cope with all he has to.<br />
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I will endeavour to update the blog more regularly. I leave you with photos of Sam and his adventures over the holidays: At Mt Maunganui (I enjoyed the view and the water, Sam enjoyed his cars!); Sam on holiday with his Dad enjoying the water and camping; His very cool new bed at his Dads place; Sam having his first sleepover with his cousin Xavier and hotpools with Candace.<br />
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Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-23520456973584008872016-12-24T08:19:00.000+13:002016-12-24T08:19:11.746+13:00Christmas Eve 2016Sam had a rough 48 hours after admission. He was in so much pain with his stomach hard and blown up like a balloon. He literally did not sleep for 24 hours and it was a tough time trying to consol him. A dye contrast dye study was done on his gut, to see if there was a blockage or adhesion. Sadly this didnt show much, but it acted as a laxative and 15 mins after it being put in his Jejunum his vowel<br />
Woke up! Over 8 hours he deflstes and his stoma losses were triple what they would be in a 24 hour period. A sample of the stool was sent to the lab and it came<br />
back having grown a bug - so it seems he had a bacterial infection and antibiotics have been stsrted. Yesterday he mostly dozed on and off and his feeds were slowly started again. He had a really settled night and is now back on to the higher rate of nutrition. It was decided to give him a feed that is easier for his gut to digest, than what he was on prior to admission. So it is a backwards step for sure, but slow and steady for now.<br />
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Yesterday his sisters came in and hung out in hospital - with the high possibility Sam will be in for Christmas, Candace set about to create some Christmas joy in Sams room - check out the very cool tree - no chance of needles dropping off this - sh has done so well to create this out of hospital issue incontinence sheets etc!<br />
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<img src="webkit-fake-url://4934a3ea-3657-415e-a3bd-7bf4dc99b72a/imagejpeg" />Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-53189787494364412582016-12-20T23:29:00.002+13:002016-12-20T23:29:30.213+13:00A pre-Christmas hospital dashToday started so well and was all planned out. We had 4 lots of friends that we were goinf to see - 'or ing coffee and catch up with one family, followed by lunch with Sams carer and family, then headingover to the city to see other friends. All seemed well until I gave Sam his first bolus of the day. His tummy seemed rounder than normal<br />
And he was sore. His ilieostomy bag hardly had any outputs in it. I kept an eye on him and noticed he was restless. After lunch I decided as he hadnt improved we would pop into Starship on the way to seeing our friends.<br />
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How dumb am I?! - one doesnt just "pop into hospital'. Aftter 7. Hours we are still in the emergency dept, but he has been Admitted with either a bowel Obstruxtion or severre constipation - 2which is weird as he is on a liquid diet.<br />
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In himself he is very happy and has no other issues. His lovely sisters sat in their various favourite hospital spots for about 4 hours and read and ate, but they have now been rescued by a dear friend who will house and feed them for the night..<br />
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As the girls left they gave Sam kisses and instructions- 'Get outw before Chrsitmas!'.<br />
This blog has been written in a poorly lit room at 11 pm, on a phone on dim (as battery about to die). I havemt got my reading glasses with me, so it hasnt been checked that well and my thumbs are way too fat foe the keys on this iphone, so grace required when reading/translating this!<br />
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Surgical are taking Sam in and I am hoping and praying their skills wont be required to resolve this.<br />
XFrancis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-91702782098614506552016-12-15T23:31:00.000+13:002016-12-15T23:31:08.724+13:00School is OUT!Sam marched in the door this afternoon and said, ' Mum, next year when you go to school you can't find me in room 6, don't go there.... you will have to go to room 10 to find me because I will be in year 3!'. It was so cute - he has just had the best time in his class - truly the teachers have cared for him, the children have embraced him, the school community have cared for him and school has been a safe and happy place... and occasionally he has learnt something! We have a report, but it says nothing that we didn't already know - so proud of our boy for getting through a really tough year and still smiling.<br />
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Monday saw Sam at gastro clinic at Starship. Over the past 6 weeks we have been playing around with Sams feeds, with great success. We have had a 6 stage plan, titrating one lactose based milk up and phasing the non lactose/pre digested solution out. Sams gut has coped so well that now we are on total Nutrini feeds - this is revolutionary for us, as the milk comes made up so we don't need to be measuring and mixing with powders, washing out bottles and caps. So it is a whole lot easier to administer and to maintain. In the new year we aim to start a new feeding regime, where we add in a higher calorie type of Nutrini, which will mean we can drop the amount of hours Sam will need to be hooked up - potentially getting him from the current 16 hours down to 10 - that would be A mazing!!<br />
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We aim to have lots of time at the beach over the summer. Sam is now asking to head to the beach - YES, never thought that would happen. His world has opened up so much since he has been in water, so we will be encouraging his new found love of all things wet. Truth be told, he likes the concept of water, but the reality of splashes on his face and sand and seaweed on his feet means he still has a long way to go to be a chilled out beach bunny - but with his two big sisters very much able to take that title, he will have two role models to follow.<br />
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I leave you with a variety of photos from the past week - a Christmas Party put on by the charity Kids Foundation, was a great day out. Sam was very brave and went and met the Big Red Guy on his own, without a fuss to get his gift. School has also had various fun days and of course swimming.<br />
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With 10 days until Christmas we have the usual traditions yet to completed - making of Gingerbread House is tomorrow, visiting various places/lights etc still to come.<br />
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I will endeavour to update the blog one final time for 2016, before Christmas. I hope your lead up to Christmas has plenty of time to stop and breath, to enjoy the wonder of life and be thankful as you look back at the year that is fast drawing to an end.<br />
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XFrancis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-32241891252585071482016-12-05T09:41:00.001+13:002016-12-05T09:41:32.306+13:0020 more sleeps!Yes Sam is very excited about Christmas coming and is on the countdown. Tomorrow is his prize giving and concert - unless they are now handing out prizes for the lowest school attendance, I am thinking Sam will just be taking part in the Kapahaka item and his class item. Which will definitely be cute, which is a given when you have 60 six and seven year olds on stage. It will be a celebration for sure - he has done so well with a tough year on many fronts.<br />
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The last 2 weeks have been very interesting and I should have blogged at the time, but was trying frantically to keep the girls happy by making sure all the usual festive family traditions were adhered to - oh the pressure! But traditions are very important to keep family stable and secure and it has been fun doing our usual things. Below is our advent calendar - every year I surprise them with what it will be like.... this year it was a pallet I found off the side of the road and a quick look on Pinterest to steal the ideas for the rest. The kids love taking their turn to open the envelope and read what the task/bible reading/poem/treat is - Sam can't read all that is written, but he tries!<br />
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10 days ago Sam went to bed seemingly ok - albeit still with a chesty cough and on antibiotics for that. He woke up with quite a different surprising scenario - he likes to keep me on my toes! Part of his 'manliness' was swollen to the size of a large golfball. It wasn't causing him any pain and he was keen to go to school, so I did what I usually do when odd things happen, I took a photo and sent it to my fabulous Nurse Specialist at Starship. I am sure her computer has a different set of virus checkers, as the photos I send would never get through otherwise!. Sam was happy that his 'tentacle' was ok and we had a chat on the way to school about how we don't talk about things on our body covered by clothes... but he could talk about his toes and fingers etc. Well about 10:30 I get a call from the Nurse Specialist (who no doubt was delighted by her inbox offering) and told I needed to get him in to hospital ASAP and a surgeon would take a look and he could potentially need surgery that afternoon. So, feeling like a failure of a mother for sending my son to school with something potentially quite sinister, I complied and got him in to hospital. After an ultrasound and various inspections, it was agreed he didn't have anything major going on, but that he has a Hydrocoele - basically fluid from his bowel is leaking into his 'tentacle'. We sat and sat and waited and after many times pleading my case to escape, we were allowed home after 6 hours and a non-urgent surgical slot would be allocated and we would be notified in due course. He has been home and happy and it hasn't happened again thankfully.<br />
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Now that Sam has a port in his chest, he can go swimming, as risk of infection in his central line is virtually nil, as it is all under his skin. The girls are slightly grossed out by his surgical implant, as it looks like the start of one of the scary looking people in the Ripley Believe it or Not books, who have had horns surgically put it and covered in tats - I have assured the girls this isn't the start of a slippery slope and he will only be having medical implants and not implants for vanity sake!<br />
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So I leave you with a photo of his first day getting in the pool! <br />
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Thankfully Ange and the teachers ignored his protests and the other students encouraged him to get in. The sensation of water and splashing is very foreign to Sam, so I am going to start showering him, so he can get used to it. He came home with 'Brian the Kiwi' for the night as reward for his bravery!<br />
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Now that summer is well and truly here, we will be heading to the beach at every opportunity so he can be in the waves - I am wondering if it is too big a dream to have him surfing by the end of summer??<br />
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Yesterday he helped clean his Dads car - when he gets home this afternoon we are going to wash Ange's car and then mine.... all good water play options (& just learning to be useful!) and we both need our cars washed!<br />
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I will endeavour to post pics of his prize giving concert tomorrow. I hope you are all enjoying the joy of the season.<br />
X ShirlFrancis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-90029188078582513682016-11-21T22:00:00.002+13:002016-11-21T22:14:48.545+13:00Bugs gone, new ones come... sigh!<span style="font-family: "verdana" , sans-serif;">So Sam has had a good week with him getting home on Thursday night with his new port in his chest. Friday he braved school, but I picked him up early as the nurse was coming to administer his drugs at home at 2.30. He so loves school, but I am conscious he slots back in having had such big gaps out of his learning and the social side of it. He has mentioned some 'friends' but also some kids that 'laughed at me'. I think the nature of his fractured world is going to become a larger player in his development, physically, mentally and emotionally. It was sweet to hear the calls from around the play ground and class rooms as I walked him in to his class, after a 4 day absence - students of all ages calling out, 'Hey Sam', 'Hi Sam welcome back' etc - very heart warming. His school and staff are truly amazing - so understanding of him and his unique needs, both medically and educationally. I don't believe for a second anyone is being mean to him, but I think Sam is starting to realise his differences and this year has been hard for him with so many long breaks away. He mentioned last week that he wanted to go the toilet with the other boys, and not go to his own bathroom. He so wants to fit in that he is becoming aware that he can't even go and pee with the boys - lots of challenging conversations to come!</span><br />
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<span style="font-family: "verdana" , sans-serif;">Sam had his last nurse visit today, so he had his last IV antibiotic for the urinary tract infection and it all seems clear. Sadly yesterday he seemed to start a rattly cough, totally out of nowhere. Last night was tough for him, waking to cough every hour or so. Today he had a booked appointment with his main Paediatrician, so after a thorough going over on general things, his chest was listened to and he came back with more antibiotics. We have increased his chest physio to 3 times today and he hasn't had any temperatures or runny noses. Our instructions are to run the oral antibiotics but if Sams fruity cough hasn't improved within 48 hours, to venture back in to Starship. Oh how I love that we have Starship and all the skills available, yet don't love the frequency with which we call it home. I am hoping and praying that we can keep him home.</span><br />
<span style="font-family: "verdana" , sans-serif;"><br />I have just finished reading a rather alarming article in the NZ Herald titled: </span><br />
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<span style="font-family: "verdana" , sans-serif;">The Big Read: Is the world on the brink of an antibiotic apocalypse? </span></h4>
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<span style="font-family: "verdana" , sans-serif;">It didn't make for happy thoughts, as Sam lurches from one antibiotic to another, all the while becoming resistant to various ones. So I leave my concerns with God and just go about caring for him as best as I can. Quality of life is what matters today... for us all right? I am reading a book on Prayer at the moment - a challenging read as it raises many questions and doesn't have neat little answers. But I have found it comforting as I pray and leave my daily burdens with God, not that answers I want come about or even that things necessarily change, but it puts me back in the right order of things... I am just a frail being on earth for a short time, reliant on God to give me breath each day and the strength to get through it. I am so thankful for the joy that comes with the knowledge of Gods love encompassing and watching me and that it isn't dependent on me being good or clever enough or on external events... so as I wash up bottles and change milk feeds and give meds tonight, I do it with the confidence that our life and times are in His hands.</span></div>
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<span style="font-family: "verdana" , sans-serif;">I've just re-read above and realise it can sound so trite and self-righteous.... I don't mean to. I guess when life falls apart around you, which it does with surprising speed and frequency in our home, all the fluff and bubbles disappears and the real stuff remains.... and for me and my experience, it's been God and the words in the bible that have rung true, tangible, unwavering and peace giving amidst mess and exhaustion. It doesn't mean anything has changed or improved in the daily events, but calm and courage that can't be humanly created or explained constantly amaze me.... so I am so very thankful as we head into this Christmas season for Jesus - celebrating God coming to show himself to us in our every day messy lives.</span></div>
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<span style="font-family: "verdana" , sans-serif;">At the paediatricians today, Sam and Dr shared jokes with each other. Sams was stolen from Zootopia, but then Sam ends it with a slow sloth smile: </span></div>
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<span style="font-family: "verdana" , sans-serif;">Q: What do you call a 3 humped camel?</span></div>
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<span style="font-family: "verdana" , sans-serif;">A: Pregnant</span><span style="font-family: "verdana" , sans-serif;"> </span></div>
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<span style="font-family: "verdana" , sans-serif;">Drs joke: (This joke was shared for 2 reasons - Sam loves his bee and we had been talking about toileting/peeing with Sam!)</span></div>
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<span style="font-family: "verdana" , sans-serif;">Q: Where do Bees go to the toilet? </span></div>
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<span style="font-family: "verdana" , sans-serif;">A: The BP Station of course (For those non kiwis, BP is a petrol station chain in NZ... not sure if it world wide.... yeah, jokes are never funny when they have to be explained!).</span></div>
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<span style="font-family: "verdana" , sans-serif;">Nite nite</span></div>
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<span style="font-family: "verdana" , sans-serif;">X</span></div>
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Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-63578007963097742742016-11-15T16:29:00.001+13:002016-11-15T16:35:41.943+13:00Post Surgery UpdateSam went into theatre about 12:30 and I went down about 2:45 to collect him from post op. He was fine for about 5 mins then he turned into a raving violent biting angry screaming individual. I know its the drugs and normally I am fine, but after a kick to the throat (which hurt), then a really strong bite on my cheek, I found it all too much and sobbed may way along side him as we walked on to the ward. He continued for around an hour and had to be restrained by 2 people. Each time a lull came we would loosen our grasp on his arms, but he would then try to rip out his various medical devices. I left the room several times and the capable nurses coped so well with him - seriously they do not get paid enough for all they deal with on a daily basis.<br />
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Eventually Sam relaxed into a sobbing mess as I cuddled him and reassured him I loved him so much and all would be well - poor wee man, so much to deal with.<br />
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The surgery went fine and he has a portacath in his right chest.<br />
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He is sitting up playing with trains and watching tv totally oblivious to what went on. I am lying beside him wishing my cup of tea was something stronger!<br />
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I think the plan is to maybe get home tomorrow, with him having IV gentamycin to try to kill off this uti. I need training in how to access and use the port, as this is a new device for him.<br />
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As he was in theatre I read the following, which gave me peace and encouragement: Psalm 68:19, 'Praise be to the Lord, to our Saviour, who daily bears our burdens.' I am so glad He can cope with my burdens ... And He can cope with tomorrows too ... Now that is more comforting than the cup of tea I just had!<br />
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Sleep well<br />
ShirleyFrancis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-71517384139564156992016-11-13T23:46:00.002+13:002016-11-13T23:54:21.238+13:00Bee Mine!Today after church Candace, Sam and I (Jaz hit the books as she faces exam week ahead) had lunch with some of our favourite fun people - we distressed our children as we (AKA 'the olds') sung and danced to 80's hits.... then the bee suit was donned for a visit to their bee hives. Sam didn't quite get the whole kit on, but he was so delighted to wear some of it and then he tested it with his bee and it worked - no stings were felt - eureka, it works!<br />
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Sam was tired after a rough night - waking with groin pain and vomiting - Francis was sleeping with him to give me a chance to catch up on sleep, as we are also facing a hospital week ahead (which means not much sleep).</div>
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So Sam still has a uti, which has been treated for the past 2.5 weeks at home with 3 different drugs, but it's not clearing. On Friday I spoke to Starship and after many phone calls and juggling logistics in hospital, Sam needs to be at Starship by 8am tomorrow morning. The plan is that on Monday he will have some chest ultrasounds, to check out how good his veins are, as he is on the surgical list for Tuesday to get a portacath in. This is a central venous catheter, but unlike the other IV access lines he has had (CVL or PICC), a portacath is buried under the skin - see below. Clearly Sam will have to wait a few years for the chest hair and beard... but you get the idea! The positives with this is that it is covered so the skin can get wet/shower/swim. The bubble thing is then accessed and he could have IV antibiotics through this. </div>
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<img alt="Image result for portacath" src="http://www.hemonc101.com/v/vspfiles/assets/images/portacath_chest_small.jpg" /><br />
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On Friday we had about 4 plans for different scenarios. Thankfully 2 of them didn't eventuate through the weekend, so we are down to the last 2 scenarios - hopefully Sam will be reviewed/ultrasound to find line access and we can come home for the night, returning on Tuesday for theatre. The other option is that they decide Sam needs to be admitted immediately so they can keep an eye on him/treat uti in hospital and surgery on Tuesday.<br />
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He hasn't had a portacath before, so I have no idea about post surgery discharge or even how to use it, so I am guessing we will be in hospital for most of the week for healing and training.<br />
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I will take my laptop in and update on Sam when he is in theatre..... He is a brave boy, but I wish his body coped with just oral antibiotics. Sadly his little body has been exposed so long he is resistant to many simple ones and is onto the top shelf drugs.<br />
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Have a good week.<br />
S<br />
<br />Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-87667811954808060862016-11-10T23:05:00.000+13:002016-11-10T23:05:00.314+13:00UTI - Go Away!!!<span style="font-family: Verdana, sans-serif;">We have had too much fun recently with a number of people staying with us. This past weekend we had very special friends from the UK fly in. Sam managed to understand their gorgeous Scottish accents and it was lovely to see him instantly fall in love with John and Kathy, who have been a very special part of our lives for over 20 years. They have literally travelled the world to see us, having holidayed with us when we lived in Thailand - the girls were 3 & 5 when they last saw them 10 years ago. So Sam had never met them in person, but he had talked</span><span style="font-family: Verdana, sans-serif;"> and skyped with them many times, so it felt like he was meeting old friends.</span><br />
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<span style="font-family: Verdana, sans-serif;">Sam was very sad on Tuesday when he woke and they weren't here, but they will be back after discovering the beauty of the South Island. Once Sam gets an idea in his head.. it sticks, really solidly! So we have a daily countdown for their return!</span><br />
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<span style="font-family: Verdana, sans-serif;">2 weeks ago Sam went to bed very happy, then woke up about 2 hours later bent over in pain and screaming in pain, with his urine looking like custard. Poor wee boy, the infections come on quick and violently. He had a grizzly weekend, but once the meds kicked it it seemed to clear. 3 days later Starship decided to change the meds as Sams urine sample showed it could respond to a different drug. 2 days into the new drug and Sam is miserable again - hourly waking in pain through the night etc. So a quick switch back to the other drug and 2 days later (still showing no signs of improvement) we increase the dose from 1.5 mls - 3.5 mls four times a day. Sam has been at school this week, but last week he missed 3 days: 2 days due to hospital appointments and 1 day due to uti/pain/miserable. </span><br />
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<span style="font-family: Verdana, sans-serif;">So I am a little anxious as I keep an eye on his urine - it is still cloudy - not getting worse, but not clearing ..... I think if it is still cloudy in 48 hours it will be back in to Starship. If this drug doesn't work, he will need an IV medicine, but he doesn't have IV access anymore. So the teams will have to toss up whether he gets another PICC or a port (under chest skin IV thing), or just a simple line in a vein. Oh I am really hoping and praying that his little body gets strong enough to fight this bug and he can stay home and be well and happy. I will keep you posted!</span><br />
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<br />Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-53208230699271477942016-10-27T20:35:00.001+13:002016-10-27T21:11:15.273+13:00Momentus Day!<span style="font-family: "verdana" , sans-serif;">Sams PICC has not been used for around 4 weeks, but each week I have to pull back the heparin and discard it, flush the line with saline and lock it with strong heparin again. This is done to keep the line patent. It started to play up weeks ago and was hit'n'miss if it would draw back. Well this past week it wouldn't push either.... so it was totally useless.</span><br />
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<span style="font-family: "verdana" , sans-serif;">PICCs are normally a temporary line, but Sam has had it in for nearly 7 months! The risk of infection of a defunct line is quite high, so it needed to come out.</span><br />
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<span style="font-family: "verdana" , sans-serif;">One of the reasons for keeping the PICC was in case he needed IV antibiotics for urinary tract infections. The last 2 infections (which were 8 weeks apart) have both responded to oral antibiotics. This is great news and the urologist said that with the bladder having been reduced so significantly, and to have all the pockets/flaps of floppy skin gone, the bacteria should be easier to deal to - and he seems to have been correct!</span><br />
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<span style="font-family: "verdana" , sans-serif;">So I leave you with before and after shots of Sam with two arms - NO line in is arm. NO lines in his chest, NO lines in his legs..... NO IV line at all! My cynical side, that has celebrated other medical victories and then Sam has quickly gone down hill, would say don't get too excited.... well you know what, I just blimmen am! I am going to celebrate and thank God for his goodness in Sams life..... in our lives.... to see the nurse slip this 20 cm 'worm' out of his vein was quite an amazing moment. To see this little line that has both given him access to medicine and nutrition, and also been a reminder of his condition has gone! It was so nice tonight to massage cream into his arm to soften the flaky skin which has always had a sterile dressing on it. </span><br />
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<span style="font-family: "verdana" , sans-serif;">With no line, Sam looks forward to a summer where he can splash in waves, jump in rock pools and not be worried about line infections..... </span><br />
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<span style="font-family: "verdana" , sans-serif;">Tonight I am so thankful the PICC, and all it represents has gone.... I am so grateful that his little body responded so well to oral antibiotics and I am so thankful that the frequency of his last uti's has dramatically reduced. So so delighted and I am praying that uti's will continue to diminish....and that we can get enough calories into his body .... so nice to have such a change to a long hard 16 weeks in hospital.</span><br />
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<span style="font-family: "verdana" , sans-serif;">Here is my little rock star getting ready for the home care nurse to do the deed!</span><br />
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<span style="font-family: "verdana" , sans-serif;">'ARM SOCK' - BEFORE FINAL REMOVAL</span></div>
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<span style="font-family: "verdana" , sans-serif;">PICC - SOON TO BE REMOVED</span></div>
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<span style="font-family: "verdana" , sans-serif;"> COMING OUT....</span></div>
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<span style="font-family: "verdana" , sans-serif;">GONE!!</span></div>
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<span style="font-family: "verdana" , sans-serif;">YEAH - CHECK OUT THOSE MUSCLES!!</span></div>
Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-51621426726034020792016-10-24T23:14:00.000+13:002016-10-24T23:16:51.759+13:00Too much fun with Family!It has been a long weekend in NZ, so Sam and the girls had today off school. This was made especially sweet as Aunty Jude and cousin Jonathan landed on Thursday evening and were hanging with us until this afternoon.<br />
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Sam had never met Jono until Thursday evening. On Thursday morning Sam was asking about the upcoming guests arrival and asked what Jono was like. I said he had a really deep voice and was really tall.. Sam looked a tad puzzled and then said, 'But will he fit in our house?'. Phewf... all are relieved he fitted in - although he was given a mere single bed on the first night. Like Sleeping Beauty it didn't bode well for a good night sleep as his feet scrunched up against the end of the bed, so it was remedied for night 2+ as he slept on the floor on a mattress.<br />
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Sam is a complex little guy. His medical issues are fast becoming the minor of his issues as his developmental issues are becoming more pronounced and harder to deal with. On the first afternoon we went on a walk to the local park and down to the beach. Sam is nervous and anxious around any animal, as they are unpredictable in their speed and direction of movement. They also can make sudden loud noises, which freaks him out. Well, it is no exaggeration to say that 95% of the dozenes of people we encountered were in possession of 1, 2 or even 3 dogs. His obvious concern and anxiousness was very evident. This fear of sudden loud noises and movement is quite debilitating, yet understandable as he has mobility issues and often is easily knocked over. Well, it was hard work, but made so much better by the helping hand of Jono and Jaz.<br />
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We ventured far and wide as tourists in Auckland - Takapuna, Devonport, One Tree Hill, Cornwall Park, Mission Bay and the Chinese night markets (and that was just day one!).<br />
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Some things are just easier with out little brother hanging out, especially one that needs to have 2-3 hourly bladder washouts and to be hooked up to feeds. So today I left Sam with a friend (& nurse) and took the girls out so they could enjoy an adventure. Tree Adventures did not disappoint - total adrenaline from the time you climbed the first ladder, to the final flying fox dismount - a great time with the girls and watching them laugh and smile with their crazy cousin!<br />
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The week ahead sees us in hospital on Thursday for a respiratory review. I also will be in touch with Sams Nurse Specialist, as his PICC line is neither drawing back or pushing - so basically is useless and needs to come out...... it's easy enough to do, but need to check with them. I don't want Sam to miss more school if I can just do it. We shall see. <br />
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I leave you with other photos of Sam having a great time being at home and just doing normal life!<br />
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A selfie pose with Jono,....</div>
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Hanging on a tricycle while the rest of us consume coffee and cake!</div>
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But not everyone came... so Sam catted to Uncle Pete on the phone.</div>
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A fabulous fun filled few days.... but back to reality and school again. Enjoy your new week. X</div>
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<br />Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1tag:blogger.com,1999:blog-846165183183137721.post-2083992898076853582016-10-17T22:59:00.001+13:002016-10-17T22:59:37.554+13:00Week 2 of school!<span style="font-family: Verdana, sans-serif;">Sam was so very excited to have last week at school. Week one of the last term of 2016. It all seemed to go well until Thursday night when he woke every hour complaining of a sore willie and crying out in pain begging me to give him a bladder wash out. Not much sleep for either that night, but I drugged him up with Pamol and sent him to school, as it was Book Week, culminating in fancy dress on the Friday of your favourite book character. </span><br />
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<span style="font-family: Verdana, sans-serif;">Historically I have gone to great efforts to deck my kids out in fabulous outfits for school (more about me looking good than them!).... well perhaps I have grown up a tad or perhaps I am just a bit tired - either way I raided my sisters dress up box and told Sam to find an outfit he liked! Lazy Parenting 101 completed! I had hoped he would go with the 'Where's Wally' outfit or the lion or dog... but it was the Star Wars outfit that won his vote - and thankfully no questions were asked as to what book was he from as that would have received a blank stare - come to think of it he has never seen any of the movies, but it is amazing the influence of playground talk (Star Wars Countdown cards) and older cousins. I leave you a photo of the non-book Book Character named Sam Davy from Star Wars (& yes the Mother of the child in the Red Cape did good - rock on Little Red!).</span><br />
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<span style="font-family: Verdana, sans-serif;">I had to be in Starship on Friday morning for a meeting, so I had Sams urine sample in to the lab by 10am. Sam got to school for 8.30am, but by 10.30 the pamol had started to wear off and Francis brought him home. But it meant he got to be a part of the fun and enjoy his week. Thankfully we managed to start oral antibiotics for a uti by 5pm on Friday and within 24 hours he was already feeling a whole lot better.</span><br />
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<span style="font-family: Verdana, sans-serif;">So he has been back at school today, albeit only for a half day, as he had a dentist appointment at Starship this morning. Not much to report there as he is so oral averse, the dentist didn't manage to do much, but she did spot he has one more lose tooth, so the tooth fairy is on call. Next time Sam has a GA, the dentist would like to pop in and give his teeth a good clean and look over.</span><br />
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<span style="font-family: Verdana, sans-serif;">Tomorrow he will head to school for the morning and then we need to be on the road by 1pm to get to Starship for a psych assessment. </span><br />
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<span style="font-family: Verdana, sans-serif;">Next week he has 1 clinics - Respiratory on Thursday. The following week he has 2 clinics - Gastro on Monday and Psych on Tuesday, but we are trying to get at least 2 clinics on one day. It seems like a really easy request, but the various consultants work at many hospitals and private practices, so may only be on site at Starship one morning a week. It does mean that our petrol bill is horrendous, but not much we can do about that - I think Sam is still a bit too little to be pillion on a motorbike!</span><br />
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<span style="font-family: Verdana, sans-serif;">This week we are very excited to have more family coming to stay - Aunty Jude and Cousin Jono (we don't use these salutations and formalities when generally chatting, but more as way of introduction to you!) - All three kids are very excited, as am I!</span><br />
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<span style="font-family: Verdana, sans-serif;">Right, off to do antibiotics and then bed - this course is 4 x day for 1 week.... but orals are so much easier to manage than IV's.... and it is very cool he is responding to them! </span>Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com0tag:blogger.com,1999:blog-846165183183137721.post-44684639416230635272016-10-11T22:58:00.002+13:002016-10-11T22:58:18.115+13:00Haircut, Home and Holidays!<span style="font-family: Verdana, sans-serif;">Sam had a great week at home, during which it was school holidays and his cousins came to stay!</span><br />
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<span style="font-family: Verdana, sans-serif;">Sam isn't a very physical kid - I don't blame him, he has had tubes yanked out of him and at times of wrestling with his older sisters his 'poobag' has gone AWOL and the ensuing mess was foul.... so all of these extra attachments and the lessons from what happens when they go wrong, leaves Sam slightly reserved. Well, to break that cycle, it seems throwing in a slightly older cousin that he is desperate to keep up with and hey presto, a 3 km walk is totally possible! </span><br />
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<span style="font-family: Verdana, sans-serif;">It was such a fun few days with the cousins dancing to you tube clips on TV, heading up to the local flying fox, walking down to the beach, movies at Sylvia Park, Musical Statues and Hide'n'seek. Sam laughed and giggled his way through the days, which was so fabulous considering how many solitary days he has spent quietly isolated in his hospital room this year. So we had a fabulous week with Sam at home.</span><br />
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<span style="font-family: Verdana, sans-serif;">A haircut, or more accurately a trip to the Barber with Dad and he still has some curls left - looking good Sam!</span><br />
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<span style="font-family: Verdana, sans-serif;">This week he has been so happy to be back at school. Today he had a clinic appointment at Starship and he has a couple each week for the next 3 weeks, so he will miss some school, but nothing compared to being a resident of the ship!</span><br />
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<span style="font-family: Verdana, sans-serif;">It is 'Book Week' at school, so tomorrow I will be on the scrounge from all and sundry that have successfully negotiated a book character dress up as I'm feeling a tad unmotivated to whip up a 'Cat in the Hat', which is what Sam is talking about..... I will post a pic on Friday night to see what he managed to go as.</span><br />
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<span style="font-family: Verdana, sans-serif;">It is so so nice to have Sam sleeping happily next door in his room. Every night before bed he asks for his bible story and then we pray and ask Jesus to help keep infections away and to keep him well so he can be at home and school...... that would be fab.</span><br />
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<span style="font-family: Verdana, sans-serif;">Sleep well. X</span>Francis and Shirleyhttp://www.blogger.com/profile/03769375792325169335noreply@blogger.com1