Saturday, December 21, 2013

Merry Christmas!

So this is my last post for 2013 - we head off on holiday tomorrow and computers are being left at home!

Since I last wrote Sam has had a very busy month of appointments and changes to his regimes.  We have had immunology tests (still allergic to milk and nuts, but not soy), surgical reviews (Surgery scheduled for March 5), gastro appointments and training on poo recycling - YES, you read that right!

So in brief (as I need to go and pack), Sam is now on a prophylactic antibiotic for his UTI's as he was having them back to back.  This is once a day med, which hopefully is what he needs to stop getting sick. On top of this I had training on doing daily bladder wash outs.  Each morning I heat up 50 mls of saline (salty water) and inject it into his bladder and then let it drain out again - this is to hopefully stir up any sludge sitting on his bladder lining. It isn't hard to do, but Sam hates it as it's uncomfortable and he screams for the duration..... but we're all getting used to it.

After a multi team meeting it was agreed the benefits of surgically stitching up his small and large bowel outweighed the risks, and March 5 was pencilled in.  To get his large bowel ready for 'food' to go through it, once a day I syringe up 30 mls of his runny poop and have to put a catheter down into his large bowel and push the poop in.  Visions of mess and chaos thankfully have not eventuated and this procedure seems to be working out well.  Already we are seeing daily 'smudges' in his nappy (this large bowel has never been used as was severed in his first surgery at 12 hours old!) and Sam is aware of the feelings that go with it... which means that hopefully it won't be so hard to toilet train him when the full force of 800 mls a day of milk goes through post op.  We also need to take his runny poop and smear it on his nappy and put the nappy back on him to help his bottom skin toughen up - I thought this was some weird Dr joke when they first told me, but apparently not.  We will do this, but I think I'll wait until post holiday as frankly the thought of it just doesn't fit in to my nice romantic restful holiday ideas.

Hoping I haven't put you off your breakfast and you are still reading, we are really looking forward to Sam having this reversal surgery because if his system copes with it it will dramatically change his life.

We come to the end of the year weary - his nights are still hard work and if it's not him, it can easily be one of his pumps having issues, like last night which saw us up at 2am attending to an alarming pump - after 45 minutes and re-priming lines etc we gave up and hooked him off and today he will have to be hooked up for another 4 hours to compensate...oh well, anything to keep us out of Starship and together as a family.

But we are so thankful for how he has developed and grown, he continues to make us roar with laughter with his loveable antics and we can not express how full our hearts are to God that we have him in our lives and that He has sustained us.

We are looking forward to stopping and taking stock of 2013 whilst on holiday and making sure that next year we work even harder at making time for each other, and how to nourish our whole beings - physical, spiritual, mental and emotional, so that we can fulfill all that God has for us to do next year.

Thank you for your care and support of this special little man and our family and we wish you a blessed Christmas season.

God Bless
Team Davy


Monday, November 25, 2013

Not been a great month

Hmmm, so Sam has had back-to-back urinary tract infections since he's had his refashioned bladder surgery. It's really disappointing for all - especially Sam, as he has to cope with the pain and discomfort and extra antibiotics on board.  We had all hoped this change in his drainage would mean he has less utis, but sadly it's the opposite.  It's now looking likely that oral antibiotics aren't enough to keep the bugs at bay, so the team are mulling over how best to treat them, with input from Infectious Disease and the surgical team.  This meeting is to take place on Dec 2, the same day as he has renal ultrasounds and a surgical review.  This multi-team meeting is too far away for Sam, so we are awaiting input on whether we have to have daily trips in to hospital for a few hours each day to have I.V. infusions.  This clearly would be preferable than a full-on admission, where he is open to hospital germs if just hanging about passing time til the next infusion.

Last week we visited Starship twice - one day for gastro clinic and one day for surgical review.  We chatted through the possibility of joining his bowel back together, getting rid of his ilieostomy and seeing how he copes with pooping via the normal route.  This was just a discussion with more details and input needed from surgical.  The previous week we had an immunology clinic, which re tested him for various allergies.  The good news is that it shows he is now no longer allergic to soy, so with this new info, we are now tempting him to eat by playing with soy yoghurt and ice cream - rather expensive 'play toys', at $2 for a teeny tiny pot, but hey, if it can open him up to tastes and eating it will be worth it.

So a bit of a tired, 'bah humbug' blog today - with uti's Sam wakes a lot more with vomitting, so we're all a bit weary - to the outsider they would think Sam was just being naughty - we know that he always screams/hits/gets naughtier as he copes with the pain.... so if you see a handsome, smiling but slightly naughty boy, it could just be Sam.  It is a challenge allowing him space to cope with what he has to, and guiding and training him up in what is appropriate.  We are learning (& failing plenty) on giving him coping strategies that isn't just medicine!

X S

Tuesday, November 5, 2013

250 km later......

Woo hoo - what a fun weekend was had by us up in Auckland, at Team Sam headquarters and the Auckland Marathon! Family arrived from all around NZ and Australia to take part in the event that has taken a lot of their time and sweat and energy this year - to complete either the half or full marathon, running for Kids Foundation, the charity that has supported us since Sam arrived to change our lives forever!

Tonight all smelly sneakers and proudly worn running bibs have boarded planes and are back in their original locales - tis a tad quiet here now and the girls were rather sad to say goodbye to everyone. With so many Aunties and Uncles around, it was rather funny on the last night when Sam turned to Francis and said, 'Uncle Dad!'.

8 of us ran, but the support crew was just as vital, with Francis sorting meals and keeping the home running and sorting out Sam.  Kylie was photographer and support crew co-ordinator, as she hung out with the girls from 5am on the big day, waiting for us all to get over the finish line.

I am so proud of everyone - Eleanor was a legend and ran her first full marathon on a months training (she did some other things too, but 'what happens in Vegas, stays in Vegas!'); Elaine and Janice also ran  their first full marathons - both with great times and on top of being busy full time Mums - legend!  Jude did an amazing time, again on very little training...and at her age!  (I have so much power as writer and editor of my own blog!).  Jason & Raewyn did P.B's - using running jargon/acronyms means they are becoming serious athletes; Selwyn looked hot in his new running shoes and inspite of waiting around a bit for the slowest in the pack (that would be me!), he hit the 2 hour mark!  And then there comes 'slow and steady' with the worst time of all but someone has to come last!..... but I am just glad to complete it as a month ago I was going to pull out due to injury.

After the race several of us talked about how at times we were going to give up, but as the pain set in we thought of the pain that kids like Sam endure and we kept going.

This blog is/was created to share info on Sam, but my brother Peter has inspired me so many times along the way, as he has faced chronic debilitating health issues over the past years.  It has been a tough month for him, Jude and the kids, so although Sam was the catalyst for the run, we also ran for P.A.C. Man - our eldest brother who has his own huge challenges to face at the moment in Dunedin hospital.  It was a great time to be together, fun meals shared and hours of talking and laughing, but also many moments of reflection and tears as we thought of our brother struggling in hospital at the moment.

Kylie (sis'n'law) shared about a family that had a child with health issues and their perspective and it really touched me, so I'm going to paraphrase and use below as it rang true with me:

When we were pregnant with Sam and the obstetrician was talking of termination, they only kept telling us of the hardships we would face, the stress and heartache.  They never said, 'imagine how much joy your little boy will bring your whole extended family as he faces his challenges with courage', 'imagine how much patience and kindness you will have to learn as you care for him....and how that will have a positive impact on your parenting of all your kids,' 'imagine all the kindness and generosity you will receive from total strangers and people that are watching you, 'you need to consider how you will be challenged to do things you would never have contemplated before his arrival' etc etc etc....

I doubt that our family would have been together running as a united team if it hadn't been for the gift of Sam. I hope that as I continue to grow up I will not be scared of challenges or surprises, but be able to trust that God has a purpose for allowing it..... I know without a doubt that that has always been the case.

So with a full heart and tired limbs, I'm off to bed.  Thanks to you all that have supported this run - online and postal donations is up to a total of $3300 - that is truly amazing, and we are so very very humbled and grateful.  I leave you with some photos of the run - pre run feasting, getting Sam ready for his 'feast', Support Crew and Team Sam!
Kai Time

Hooking up

Great Support Crew!

We did it!

X Shirley


Wednesday, October 23, 2013

Another UTI....

Hi again - Sam has had his first UTI post bladder and urinary tract surgery.  So this is disappointing, but he has been treated at home and is back to his happy self.  At an attempt to reduce the frequency of his UTIs, I was in Starship last week and learnt how to do a bladder wash out.  This means each morning after I have drained his bladder I then inject his bladder with 100 mls of saline (Salty water).  This is to stir up any sediment that might be forming on the bladder lining, which is where bacteria starts.  It takes about 10 mins and Sam screams for the duration, but I'm not sure if it's painful or just uncomfortable and he'd rather be up running around.

We had a gastro clinic this week which showed Sam at the same weight and height he has been for a number of months.  The team have decided to apply for permission to have a different milk formula for him.  The current one he is on (which goes into his GJ tube 14 hr/day) is for up to 1 year olds!  We have just been playing with the concentration etc, but it really isn't the right one for his age and stage.  The other formula he needs is licensed in the UK and he would have had access to it had we been there... but each country has different policies and NZ for some reason haven't allowed the feed he needs to be on.  Now they are making a case to get it, so we are hoping it won't be something tied up in paperwork for months.... but if he gets approval he will be the only person in NZ on it!

Sams blood work also showed he is needing an iron infusion again, so that will be a day in Starship in a weeks time for that infusion.

Sam is loving being back at kindergarten and today we had a home visit from the O.T. working on his fine motor skills.  Next week the physio will appear again - after a long hard winter for Sam he has a lot to recover from and his muscle development definitely has been impacted.  He is sporting yet another egg on his forehead where he fell on concrete yesterday without putting his hands down.

Over and out!
S

Thursday, October 3, 2013

Sam is Back!

On Wednesday the kids and I headed into Starship (School holidays) for Sam to have his Mitrofonoff and SPC taken out... lots of tears and screaming, but he got over it quick enough...and then his face lit up as he realised the pain in his bladder had gone...and he could walk and run again! He was very active yesterday and today, running around giggling and enjoying being able to move again. It was a long month for him, with ongoing random pain which meant he was pretty much inactive for a month. He is still a bit wobbly and needs to gain back his strength and mobility, but it is a delight to see him so happy again!

Today we had a dental clinic visit which was pretty much a waste of time as he clenches his mouth shut and screams for the duration... but somehow the technician managed to count his teeth.

Then we popped over the bridge to hang out with extended family in Devonport - it's always lovely to hang out and just enjoy the company, see the cousins playing together whilst enjoying the summer weather. We also were very grateful for some bags of clothes for Sam from a friend, that he has had fun trying on since we arrived home.... Sam loves all things Sesame Street, spotted this one and put it on.... I find it hilarious that the boy with gastro-intestinal failure who has never eaten food chooses this t-shirt - Too funny!

So after a rather tumultuous wintery few months, it feels like Sam has turned a corner and we can all relax a little and laugh a little deeper. X

Saturday, September 21, 2013

Home!!!

Tonight is the first time we have been a family under the same roof since August 25 - it feels great! We are all weary, Sam is excited to be home, but has a lot to recover from. He is not able to walk, due to having to catheters in his bladder (with balloons of water holding them in), so he is uncomfortable. He is also experiencing really unpleasant bladder spasms. There are two effective medicine available to treat these symptoms but Sam can't have either due to the side effect profile and his underlying condition. This means that he can be sound asleep or happily sitting and playing and he starts screaming in pain as he grabs his groin. It is random when and how often it happens, but it can last 1 - 4 mins depending each time. The catheters are due to come out on October 2, so until then it will be trying to help manage his symptoms and help him to keep active so his leg muscles don't waste away. He hasn't walked in 16 days since his operation. On Monday we are back to Starship as he has a check up with gastro team to make sure he is back to normal weight and stable in himself. That is at 11.30, then at 1.30 we head to radiology where he is having a barium contrast study on his large bowel. The point of this is to see how his large bowel is operating. If there is a good result the team are talking about connecting his large and small bowel back up (hasn't been together since he was 12 hours old!!!) to see if he can't operate as normal. This is a huge step and right now, tonight when I am tired and just wanting Sam to get over his last big ordeal, I'm not sure what I think. I want what is best for him long term, but also conscious he has had a really rough winter and I would like him to have some time to get strong again. Anyway, we were all glad to be sitting around the same dining table, thankful for the various other dining tables that were kindly set for the girls during the past few weeks. Much aroha! Shirley

Wednesday, September 18, 2013

Back 'home' to ward 26b

Yesterday we transfered from the surgical ward up to our usual ward. Sam is now a gastro patient again! It is unclear why he has a high output of diarrohea. So stool samples and blood samples have been sent, but nithing of significance is coming up. We need to be in so that Sam can stay hydrated with IV fluids and to keep a daily awareness of his electrolytes, which can go crazy with high outputs. It is disappointing to be in still, but it is where he needs to be. We are hoping and praying his bowel will settle down soon and we can head home again! X s

Saturday, September 14, 2013

'Doctor, can I go home?'

Sam is now well enough that everyone that comes in his room gets asked, 'Doctor, can I go home now?'... it could be a cleaner or nurse or someone lost in the wrong room - but whoever comes in he asks! The answer today was still No, but it's looking like we are working towards getting home on Monday. Sam clinically is much better. He grew a few more bugs in his blood and urine a couple of days back and had really high amounts of diarrhea, so it meant he was hooked up all day to replacement fluids to ensure he didn't get dehydrated. His new surgical drains are working well and yesterday we sat him in a bath and soaked off all the tape and dressings from the surgery 7 days before. The scar looks amazing and the whole site looks really healthy. This past week has been really stressful. Sadly much of what went on has been like Deja Vu, with many avoidable errors taking place in hospital. I spoke with management who agree that what went on should not have and that Sam was affected and suffered because of it. I worked yesterday with the acting charge nurse to put into place some safe systems (again), but the whole experience has been awful and avoidable. It makes me so angry that Sam suffers due to broken systems - systems that I have been trying for four years to approve and on this admission, although the systems were in place, they were ignored..... and Sam, who has more than enough to struggle through has to struggle more than necessary. I will not rest until I know that kids are safe in hospital. I will be talking again on Monday with management to see what they are going to do to make sure the confusion and errors don't happen again, and if I'm not happy with their response I will be taking it further. Today I have been home with the girls - washing the car, weeding the vege garden, cleaning out the hen coop, washing - just doing life. Then we headed in to see 'the boys' - Sam was so excited to see his sisters, but he was very sad when we left again and was pleading to come home.... hmmm. I am excited about tomorrow - we are going to head out with Sam in the afternoon to Devonport for a couple of hours. It is the first get-together of a support group called PNDU - Parenteral Nutrition Down Under. We are going to meet up with a handful of people in the wider Auckland area who live on TPN or are involved in caring for people on it. I am so excited to be going to meet these people that inspire and encourage us through emails and on-line forums. There are groups that meet around Australia, but this is the first time for a get-together in NZ and it feels a bit like meeting family, although I have no idea who they are or what they look like... but I have read their words and heard about their lives and challenges online.... must feel a bit like meeting an internet date for the first time.... that kind of nervous expectation.....not that I have any personal experience in that... we look forward to having Sam home on Monday and then I can be under the same roof as my husband for the first time in weeks.... Right - off to watch rugby and do time sheets for Sams staff... S

Thursday, September 12, 2013

A sick wee boy

So all was on track to have an Elective MRI today and head home, as the surgery was deemed to have gone well. Yesterday he started having random temperatures, so 3 different urine samples were sent off (he has three urine sources currently) and a blood culture. The tests showed he has a gram neg bug growing in his urine, which is now in his blood. He was given a gent infusion but then had a crazy night! He fluctuated between 39 and 40degrees with a crazy high heart rate hovering around 200, climbing to 220 for a bit. At 3am he was reviewed and a fluid bag hung to try to slow his heart rate. At one stage he was delirious asking me who i was and when would Mum come back - it was pretty awful and upsetting, especially when one is so tired. He finally fell asleep at 4.30am but with the help of oxygen, as he was so worn out. He is dozing now and still has 38.8 temp and 180 heart rate, but so much better than last night. He has been reviewed this morning and we are just waiting for the Infectious Disease team to have input re treatment. So we are in the land of the unknown again. Last night as i fought back tears and exhaustion i read Philippians 4 and decided to act on it: I thanked God for being in NZ where Sam has access to medicine and medical expertise, for friends and Nana for having the girls, for happy girls that love school.... Then i poured out my heart about how tired i was, how hard it is watching Sam struggle, the disappointment of missing a daughters school event, missing Francis, the frustration of not being able to plan, wishing Sam was well.... And then through the tears 'God's peace which is far more wonderful than the human mind can understand' flooded in. It doesn't make sense, but it is much more real and tangible than anything else I can see or touch in this world. Now whilst Sam dozes I shall do the same! S

Monday, September 9, 2013

A rough 48 hours....but out the other side!

I haven't 'blogged' in a few days as I've just been too tired.... Sam had a really rough 2.5 days post op. Operations always stir up bugs and he was hitting high temps as well as having to cope with surgical pain. It took 24 hours to get the pain under control and then he was fighting the high fevers, which lead to a high heart rate....which led to his exhaustion and needing back on oxygen. But after sleepless nights and fitful days, he woke up yesterday (Sunday) with a smile and talking again. It's a long few days watching your child suffer.... but am so glad he is out the other side now. Francis got home on Sunday morning, so he brought the girls up to see Sam and then I headed home with the girls to sleep (ahh, that blissful place that has been escaping me for too long...), drug up on Tiffy (fabulous cold meds that we lived on in Asia and have our own stash here as they can't be bought here!) and I had a solid 12 hours sleep! Francis reported this morning that Sam too had a great night sleep (yay!) and today they are working on weaning him off oxygen. He still has a Mitrofanoff (why can't Drs called 'Smith' invent some fancy surgical procedure?)and a SBC (Suprapubic catheter) as well as his usual left kidney drain (ureterostomy). So he currently has 3 urine drains. The 2 new ones will be in situ for at least a month whilst the Mitrofanoff heals properly. Once it is 'working' well, the SBC can come out and we will just access his right bladder via the Mitrofanoff.... and if you understand that you are doing very well! One of the nights post op when he was poorly, I was cuddling him. Every time I thought he was asleep and I would try to pull away to get some sleep he would hold on to my hand and say, 'hug me'.... so I lay with my face on his face for most of the night. One night at around 4am I was sure he was asleep, but then this little voice pipes up, 'Mum?', 'yes darling', 'Can you pray for me?, he asked..... it was so sweet.... he hadn't said anything for an hour, and then he asked me to pray with him. So I lay with him and we asked Jesus to help his tummy get better and help the medicines to stop the pain and the bugs to go away.... it was a very precious moment. So it's been a hard week for Sam, actually he's had a pretty rocky few weeks, but today he is happy again and pain free and laughing and enjoying life, and for that we are so grateful. Love who you have around you today. X Shirley

Thursday, September 5, 2013

Emergency Surgery

oh what a difference 24 hours can make! Sam was a bit miserable over night and then totally inconsolable this morning.... so as I attended to him bleary eyed I spotted that a whole heap more of his bladder had popped out - poor guy... so after getting the kids off to school in full make up (it was book day, so one was Cleopatra and one an 'ugly sister')I got Sam into CED, after letting Elim know that I would be letting them down today - but it was an easy decision, my boy needed his Mum! I signed off for him to have a GA and they were going to pop the bladder back with a temporary measure to hold him over until his big surgery planned for Tuesday. Then Candace arrived with my friend, and I took Candace up to get her leg xrayed and cast off and my friend stayed with Sam who was transfered to the surgical ward. Part way through sorting Candace the surgeon calls to say they had had a cancellation and there was now theatre time and personnel to perform the main surgery scheduled for next week! This was good news as it means one less trip to theatre and getting it sorted now. Candace was understandably a bit peeved that our afternoon to celebrate finding her leg again had been put on hold due to Sam.... so as he lay in his bed we taught him to say in parrot fashion, 'I owe you big time Candace'! So Candace went 'home' to our friends to soak her leg and start walking on her leg. She was surprised how stiff it was and how foreign it felt to walk on it again. Candace sorted, check... now on to Sam. He went into theatre around 3 and back to the ward around 7. He is lying peacefully beside me with his morphine pump and epidural doing its work. He has 2 extra drains tonight and the vesicostomy has been closed..... He will be in over the weekend, but we are looking forward to Sunday when his Dad returns from New York. Tonight in Sams post anaestethic stupor he mumbled, 'My tummy is fixed.... Daddy come home.... Daddy bring me a present!' We are so amazed and thankful again at the skill and care of the surgical and nursing team. I am also so proud of the girls who have put up with a lot of upheaval this past 2 weeks - so although this is Sams blog, I attach two photos of his very special sisters on their way to 'Book Character Day' at school. I am so looking forward to my bed tonight! X

Tuesday, September 3, 2013

In Limbo...

Since I last wrote it's been a crazy few days! We were at home, just passing time, then on Sunday Sam spiked a 39.5 temp! He was miserable and I headed back to Starship after my trusty friend came and rescued the girls. He was sent for a chest xray as he was a bit crackly as it could have been another bug causing the temperature. His chest looked fine, but they had to keep us in with such a high temp and started Sam on I.V. antibiotics. Probably it was just another UTI. We hung out on the surgical ward and Sam was quieter than normal and very chilled just lying on his bed playing with cars. The surgeons have decided that they would like to totally close up the vesicostomy hole (where the urine should be draining out of, but hasn't been, but now his bladder is hanging out of). They said that his bladder is so large and floppy that there is very little muscle, hence why he's always struggled emptying it. Last Tuesday when they operated they made the hole as lose as possible to try and aid the expulsion of urine, but it was so weak the bladder popped out. They don't believe it's worth trying to do anything further at this stage, so want to do quite a major operation next Tuesday. So lunchtime today was 24 hours since his last temperature, so we came home with a week of oral antibiotics to hold us over hopefully til Monday, when we will head back in to get ready for Tuesday's ordeal. They are proposing to totally shut the vesicostomy and bring the ureter from his right kidney straight to the surface - ie, exactly like the left kidney functions. It will mean he will have 2 ureterostomies that will need to both be drained every 4 hours, but they are hoping this will stop the cycles of UTIs. This is a short/medium term plan and he explained the next part of the plan for a really major plumbing overhaul further down the track... but to be honest he lost me pretty early on in the explanation - due to my brain having too much information, not his ability to explain it. So Sam is home, albeit waddling with a very wide gait and in discomfort. He is such a strong wee man - just gets on with it, inspite of the discomfort. He still wants to play and get involved with what ever is going on, but is very limited in his movement and clearly hesitant to move - can't blame the wee man... he has so much to put up with. Tomorrow is day 1 of the feeding clinic as it was postponed last week, so as he is actually better being distracted, I think we will go and just see how he goes. He is happy sitting and pottering and I think the distraction of other kids and clinicians will be good for him. Thursday is another visit back to Starship, but this time with Candace to 'get her leg off', as we've come to call it. She is so looking forward to seeing her leg again, but she isn't so thrilled at the realisation it could be a bit slow to start with! I spent last night in hospital working on a talk I'm giving on Thursday morning at Elim's Woman - I love going back over the amazing 4+ years God has allowed us to live and for the amazing little man we have the joy of parenting with His help all the way. I leave you with 2 photos - 1 from last night in hospital and 1 from this afternoon on our friends back lawn.... our wee man, the amazing boy of courage.

Saturday, August 31, 2013

A Rough 24 Hours

Yesterday at about 1pm, Sam got hysterical.... and we checked him all out to discover his bladder had come out of his new vesicostomy hole - ie his bladder is outside his body. The poor wee boy was in agony and I rushed him into Starship. Under masked sedation it was put back in twice and tried to be held in place by a water balloon, but it popped straight back out. So further surgery is needed to hopefully put it back in and hold it back in. Surgery is not until Tuesday or Wednesday so we came home after instructions on how to care for it - he now has a colostomy bag over his urine hole/bladder - as it must be kept moist. He is on antibiotics, so we are hoping this will keep infection at bay and help us out until we can get back on the surgical list. He is happy enough just sitting and playing with cars or watching t.v., but he is uncomfortable and is very distressed when I go near 'it' to empty the bag or even to go near his tummy to attach his milk feeds.... so we are going to have a quiet few days (hopefully), just passing the time and doing our best to keep him comfortable. I am to keep vigilant watch on any temperatures or his amount of urine decreasing and will whisk him straight into Starship if anything else happens..... We love our wee man and it's sad seeing him going through so much. Thanks for keeping him in your prayers Shirl

Tuesday, August 27, 2013

Back Home

Sam had surgery and it seemed to go well. He won't let me hang around and take such a great look down there, as he is tender, but the urine and blood seem to be draining well. Hopefully in a day or two it will just be urine. We got home 5pm and then I picked up girls and headed back home. He seems happy enough and was happy to walk and sit and move around, although a little gingerly. Tomorrow Sam is due to start a 4 week course - a Feeding Clinic! I didn't think he'd get to attend the first session, but as we are home and he seems to be doing ok we might just get there. I will know more tomorrow, but I think there are 5 kids and they will be in a room with Speech Language Therapists, O.T.s and Psychiatrics.... the event will take place around food and play and the aim is to get them putting food in their mouths. The parents will be behind a 1 way mirror, and will be able to watch and learn and will be trained by another expert in this field... so I'm excited about the potential tomorrow and this course holds. I'm very grateful to friends that have sorted out the girls again and Sams amazing carer who wasn't with Sam today due to hospital, but instead she cleaned my house - carers are amazing people - the unsung heroes of the health system. May they know encouragement and joy in the mundane and sometimes unpleasant tasks they have, doing it out of love, because there is no ladder to climb with high wages awaiting them at the top..... truly great people. Am tired, but so very thankful that today went well. I leave you with an encouraging word that helps me get through a day of unknown... Proverbs 3:5,6 “Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will show you which path to take.” X S

Monday, August 26, 2013

Surgery Tomorrow

Sam has had a so-so couple of weeks - he's had yet another UTI which seemed to clear with oral antibiotics, but just this past weekend his urine has gone crazy again and he has a low grade temp and urine that resembles potato soup. He still is mostly happy so he went to kindergarten today and came home to wrestle with me. His new favourite past time is 'rolling you over', which means he has you on the ground jumping all over you. Mostly it's fine until this afternoon when I heard a pop like a balloon and liquid poo everywhere.... which was really stressful as it included soaking his CVL line that goes directly into his heart. So it was a quick clean up of him, me and the carpet before getting him ready for bed! Tomorrow we are leaving bright and early as we have to be at Starship by 7.30 as he is on the morning list for surgery. His vesicostomy (bladder drain) needs revising as it's not doing what it should, and his GJ button has broken and is leaking. So they will refashion his bladder drain and as putting in a new feeding tube needs to be done under anaesthetic they will do both at once, whilst also having a bit of a look around. So it's been harder to manage him these past couple of weeks as he's been messy and needing changed multiple times a day...the washing has been plentiful and I need to get 2 more loads through the drier before I head off tomorrow. We only found out about the surgery on Thursday, so as Francis had planned to be in Vanuatu from yesterday, he went anyway as he has people relying on him and his work, that 3 days notice isn't really fair to bail on - but when a surgery spot is up you just have to drop and go for it.... the girls are packed and ready for sleeping over at the fabulous Scott family again. It's great they have their home-away-from-home when their real home turns to custard! Sam is so excited about going to Starship tomorrow. I'm so not excited, as I understand what he doesn't and I feel like I'm duping him. I'll update you tomorrow night - thanks for your prayers for the wee man and for the girls. X S

Wednesday, August 7, 2013

Monday, August 5, 2013

HPN Awareness Week 4 - 11 August



This week I will be wearing a badge, just like the one above.  It is HPN Awareness week. Check out the attached clip and you will see an excellent 2 minute video.  When I saw this for the first time this morning it made me teary - it's so cool to see all the people in our HPN family (that we are in touch with online) and that they have life because of this magic fluid they get directly into their veins.... take a peek and you may recognise a little boy too!

http://www.youtube.com/watch?v=hiWpSyCF8D0

Sam's had a great couple of weeks, loving kindergarten, been really active and happy.... so much so that I abandoned the family and went to Taupo for the weekend.  I had booked it months ago so I could run the Taupo half marathon.... a training run for the Auckland marathon in November.  Well as 'life' had happened and I hadn't been for a run in weeks, I cancelled my place last week but thought I'd go for a weekend away with a friend and catch up with my sister and family (Elaine).  When I got to Taupo and saw the runners of all shapes and sizes at registration, I kind of caught the running fever and rebooked.... and spent Saturday night regretting it.....  But yesterday I ran and walked the Taupo half.  At one point I was so sore and I was chatting to my running buddy (who graciously walked when I walked!)... we figured that the army must be on to something when they jog with their little echo chants to keep them motivated.... so we made one up for ourselves and found ourselves chortling with laughter - it didn't help us run any faster, but made for a fun day.  I feel to share it with you... it went like this:

I don't know but I've been told.......
I'm pretty fat and very old......
I wet my pants when I laugh......
But we will run this Taupo half..... sound off, etc et al!

So I write this with achy knees but a new resolve to get into my training for November. Seeing my HPN 'family' living life to the full, it inspires me to make the most of my days and make each day count.  I have to confess to one and all that I have down graded from a full marathon to a half.  With 4 of the last 5 weeks in hospital I just am so behind on training that I was getting a bit stressed and it was being counter productive. I am disappointed in myself, but I have to be a bit realistic.  

So as you eat your sandwiches at lunch time, or sit to eat dinner with your family, especially this week spare a thought for the inspiring people that can't do that - eat and enjoy your food and time with family.  We hope and pray that one day soon Sam might be able to do both.

Sunday, July 21, 2013

A Silver Lining?

So Sam has been watching Candace take her medicine in her mouth, have the thermometer under her tongue and sit and eat her meals.... so Sam has been wanting to copy and has been putting the thermometer under his tongue and popping syringes in his mouth.  This really is amazing for Sam - it's not like we've not tried hundreds of times and encouraged him constantly to do.

This afternoon I came home to sleep and sort life at home - Francis just sent through this photo of Sam 'eating' his cracker and cheese like his big sister!  If it was anyone else, no one would have even taken a photo or taken a second look - but this is Sam, aged 4 who doesn't eat... this is a very cool photo and I've taken more than a second look.

Sam was well enough to come home today, but due to incompatible systems he will get home tomorrow instead.  Francis will work from home with Sam for some of it and his nurse/friend having him for some of the day.  I will head back in to Starship to see what the day holds for Candace.  The surgical team will visit her first thing in the morning to decide if surgery will be tomorrow afternoon or if they need to wait further for the swelling to subside.  Probably we will be moved down to the orthopedic ward, now that Sam is out of the picture.... it will be a new piece of Starship for us.  Candace is doing well in spite of the reality of disappointment and frustration kicking in from time to time as she thinks of all the things she is going to miss out on - school dance contest she's been looking forward to.  She is also scared at the thought of surgery - so lots of chats and cuddles and tears..... oh life lessons are hard to learn, but only learnt so often in adversity.  So I leave you with 2 images - I hope they encourage you as they encourage me tonight.  X


Friday, July 19, 2013

Oh dear....

So Sam is still on oxygen and having twice daily chest physio.  He is oh so slowly improving, then he'll surprise us and take a big dip for 30 mins or so and then bounce back.  So he will definitely be in this weekend with the view to have respiratory review him on Monday.

Today his urine from his kidneys started draining blood, so we aren't sure why.  A sample has been sent to test for bugs and for amount of blood.  Again we will keep an eye on this and will probably get the surgical team in to take a look.

Yesterday Candace broke her leg whilst playing in Tauranga - the mighty Trampoline claiming another victim, although she was just bouncing and must have twisted over whilst bouncing on the black mat. She was well looked after and loved by our faithful friends, with Fi stepping in as mum and staying the night in hospital.  This morning Candace was transferred to Starship and the surgeons agree that surgery is needed but only once swelling has gone down.

Sam was so excited to see Candace but then his look of concern was sweet as she was carried to her bed and he saw her sore leg.  Then he just went crazy at having a room mate!  He has been explaining things to Candace (the nurse is doing your blood pressure now Candace) etc, so it is the younger teaching the older one this time.

We are so grateful at the care Candace received in Tauranga and for her speedy transfer to Auckland with Starship support all the way.  Their kindness at having moved patients around so we could have a twin room has not gone unnoticed and we are so very grateful for the care and concern from the staff here - it's been fabulous.

This photo shows them both pretty happy, but Candace has spent the last 30 minutes sobbing and we've just called the Dr for some stronger pain relief to be charted.... all this with Sam singing, 'Bob the building' theme tune in his bed.  Our life sometimes feels a bit like a circus, sometimes a really bad movie, sometimes a comedy.... right now I'm just hoping we all get a good night sleep so we can face tomorrow.  It will be a quiet hospital weekend and we are hoping and praying that Sam improves and Candace can cope with her pain and limitations.  Jasmine is still in Tauranga having a ball with her friends, so we're delighted at that.  We are fine, just very tired.




Saturday, July 13, 2013

Still here

So Sam didnt improve since last post as expected. His temps continued but then a cough developed. Last night was his worst in this admission, needing suctioning througout the night and his oxygrn requirements going up to 4litres.  So we both had very little sleep and the plan for the day is for Sam to have a chest xray and IV antibiotics started again. A swab of goop from his nose has grown a normal cold virus but it has developed into bronchialitus. They are unsure why he is still spiking 39+ temps at this stage in the virus - thats not normal, hence why abx being started again. The chest physio is working a treat and helping clear the lungs.

So Sam is tired and isnt his usual compliant self and asking to go home - sadly that is not happening any time soon. We were hoping to have him home for Monday to celebrate his Dads birthday but it might be that Francis gets to celebrate in starship with Sam as I am helping out at a conference next week. The girls are heading to Tauranga tomorrow for a weeks holiday with special friends, so at least the school holidays wont just be hospital for them. Thank you to Big Sam, Phoebe and Becs for sharing your very cool parents with our girls!

As always the practical support of friends and prayers of many keep us going. I'm off to try and sleep before I swap with Francis so I can see the girls and help them pack for their exciting week ahead.

X


Thursday, July 11, 2013

A Dull Update

It's 6am and I've not had much sleep due to pumps alarming through the night - if a nurse remembers to change Sam's milk and do things when needed I can actually get some sleep.... unfortunately that wasn't the case last night and I had to keep getting the nurse after being woken to ask her to change Sam's milk - which is kept in a locked room.  Each time it alarms Sam wakes and it's hard to get him back to sleep.  It's a simple thing - sick kids need sleep to get better, parents need sleep to help care for the sick kids, so please write on your sheet when to change his feeds!  It's simple enough to figure out... so this morning we are both tired - much more than we need be, but yet again not by our choice.... hey ho.... hopefully tonight we will be back at home again where choice enters out life again!

So I've not blogged in a while - life has been very full and I haven't had the time or energy.  This is Sams second admission since my last post.  Sometimes I don't write as I cant think of much positive to say, sometime it's cos I'm too tired, sometimes it's because Sam is well and we are having too much fun to post.....

Last admission I didn't blog because the whole scenario was so frustrating and ridiculous!  On the Monday I sent off a urine sample concerned that it was cloudy.  Tuesday morning I get a text saying a script was being faxed to our pharmacy for an antibiotic for a UTI.  Wednesday night I'm making dinner and I take a call from Sams pediatrician followed by a gastro consultant.... it was 5.30 at night.  Sams urine had grown 2 different bugs, 1 which was resistant to oral antibiotics and I had to take Sam straight in to hospital for admission for I V antibiotics.... these are antibiotics that can be given in the home (and they were for the last 2 doses)... but we head in... to the emergency dept... again.  Gastro are calling the shots and want us admitted but we have to waste more health resources and staff time to be seen and monitored at CED first (3 hours) before getting to the ward where we jump through the same old circles again.    Then we have the crazy scenario that we have to throw out our home IV bag of nutrition (around $250 worth) because it is not compatible with the hospital system - they hook up an identical bag, but it just has different tubing - seriously it's all nuts!  Everyone knows it's nuts, it's been crazy like this for 4 years - waste of money, waste of time and resources of health professionals etc etc oh and waste of our time and disruption to our kids and family life.  So we were in hospital for 3 nights and days - so we could have a 60 minute IV infusion which was then done the last 2 days at home... at the time I was too busy juggling kids and life with Francis to bother putting this crazy into words.

Last week someone told me of the sad story of a friend whose child has suddenly developed cancer and having treatment at Starship.  She made the comment that although it was clearly harrowing and hideous for all involved, they were amazed at the care and systems at Starship, implying that I was possibly wrong or negative in my experience.  I explained that as a cancer patient they had 24/7 access directly to the ward, they would never have to sit in CED and that they had a disease that was documented with both progression and treatment with very good outcomes.

So I'm not complaining or comparing - I'm just telling you how my reality is with Sam... undocumented, unprecedented, fewer resources and systems that don't support us... this is the life of a family with a rare condition.

The management here agree that it is ridiculous and are trying to change it, but it is such a slow and tedious process of change for them.... hey ho, ground hog day all the way!

This admission was a sudden acute one (ie we weren't invited to CED but just showed up!) as he had a high temperature out of the blue on Tuesday morning and was pretty miserable, so instead of heading to Kindergarten, we head to Starship. So we've be in for two days yo yo'ing between temperatures but no bacteria growing in any of his samples (blood and urine).  Today if still no nasties show up, they will stop the antibiotics and send us home as it will mean he just has normal run-of-the-mill garden variety virus - YAY!  How cool would it be to just have a normal seassional bug!

Anyway, one tired Mum here off to get sorted for the day, which will hopefully include seeing my two girls and husband today!

Bah Humbug.. X

Tuesday, June 18, 2013

Sam's GREAT! Family recovering....

Sam arrived home yesterday afternoon!  It is always so nice to see him running around chasing his sisters again and to hear them squealing and tickling him.

But post hospital there is always a high stress adjustment period - the girls have to get used to 2 parents again (they get frustrated as they can't play us off each other when we are together!), the girls have to go back to sharing a room again (one always camps out in Sams room) and Sam's Mum and Dad lie about half dead and unmotivated even though we have washing and life to carry on with!

This morning Sams carer was sick, and I just didn't think it was fair that Sam miss another Kindergarten day as he's just missed 2 weeks.... so today I went to kindy and hung out with Sam.  He loved being back but tired quickly and we didn't stay the whole session.  It was so nice to see the other kids welcome him back and Sam and his teachers mutual joy at his return!  We took in a belated birthday cake and celebrated with them.

At 2pm Sam has the Occupational Therapist coming, and then I think after that he will collapse into bed for a snooze.... I would love to join him but the girls will arrive home full of energy.

Tomorrow the MRI has been cancelled, as they don't want to put him under at G.A. so soon after having compromised lungs, but that slot was quickly filled by Family Options who are coming to do a review of the care package we receive.  I find this process quite arduous as in my view they have a conflict of interest in the one job - trying to ascertain what your family support needs are to help you cope, whilst trying to do it with spending as little money as possible..... so it will be all the same questions that we were asked 6 months ago, even though Sam has the same needs and doesn't fit the boxes they have to tick.... ho hum, time to get it over and done with. Yes, bah humbug, I'm being a grump - but am over bureaucracy and constant paperwork...and the same questions.

On this last admission, a new Dr was asking me the same questions that I've had many gazillion times. She started asking me about Sams short stature, and asked me the question I've had lots of times, 'Is there a  history of short stature in our extended families?', to which I replied, 'Well not that I know of, unless they are just really that short I've never noticed them.... but then you'd think I'd trip over them... unless they were really really short and then they could be fast .....'  I received a blank stare and onto the next question!

Hopefully tonight the adjustment will see us slightly nearer normal alignment than last night... although we are very unsure what normal looks like...!

X

Saturday, June 15, 2013

Swapsies!

Today Francis and I are swapping hospital for home and vice versa.... I'm so looking forward to sleeping in my own bed and escaping our 3 x 3 m cell.....with no natural light or external views.... there is a world out there and after Francis has done sports with the girls this morning, they will come in to see Sam and Francis will say goodbye to light for a couple of days and I will take the girls home!

This morning I woke at 5.30 to a little boy shouting out for me, 'Mum, Mum....MUM!'.  I ignored him hoping he would give up.... 'Mum, it's an emergency!', 'what is it Sam?', 'Mum, it's an emergency... I need a hug!'.  It was very cute - poor boy was tired of me ignoring him so he thought he'd try a word that he has seen makes people run!

Yesterday was confusing.  No one came in the morning so we were waiting for cardiac tests that never eventuated.  This was due to confusion amongst the various teams as to when Sam had last had a cardiac review.... anyway after chasing the nurse to chase the teams, Cardiac came and said they weren't going to review him as the recent echo and ecg review showed that all was fine.  Cardiac are confident it isn't a heart issue.  So then respiratory came in and they are unsure why he has such a high oxygen requirement when he is looking so well.  There seems to be underlying something that is unclear.... so there are lots of questions but not many answers.

Yesterday he had 3 episodes of de-saturating just out of the blue.  He got down to low 80's and only a suction could clear the goop and he'd bounce back to late 90s where he should be.  These times are distressing for him and it was interesting that he would ask for a hug just before they happened, which shows to me that he is feeling generally yuck and vulnerable at these times.  The physio was called again, but their thinking is that his lungs don't sound that wet anymore.  They did a little percussion and only a little bit of secretions came up, so they too are puzzled.

Not much happens medically over the weekend, but the respiratory Dr said he'd check him on Sunday and if these episodes keep happening today it may mean he needs a biopsy of the lung/secretions to try and see exactly what they are dealing with, although they are hoping time heals and they won't have to go down this route.

On Monday morning he is also scheduled for some renal investigations in radiology - dye studies to check out his bladder condition and why his urethra stropped draining a few months back.  Wed he was booked for an MRI under GA, but unless he has a rapid improvement I can't see this happening, as they wouldn't want to put a kid with breathing issues under anaesthetic.... but Wed is a world away in here...

We couldn't have gotten through this week without our faithful friends - juggling their lives to help the girls, sacrificing time and money to make meals, popping in to visit - we so appreciative you!  To the Scott family thank you for 'adopting' our girls and putting up with our erratic life!  To the Scott boys, thank you for sharing your popcorn and toys and parents!

S


Thursday, June 13, 2013

Certain Uncertainty

Sam had a great night and was doing really well this morning.  He was weaned right down to 1 litre of  02, his chest sounding quite clear and no further physio required..... so we were talking with gastro about possibly heading home tomorrow.

Then  we heard that the respiratory team had reviewed Sams xrays and are concerned he has pulmonary hypertension, which needs looking into asap.  They have asked for cardio input, but it's not happened today so hopefully they will come tomorrow morning.  I'm not that clued up on pulmonary hypertension so shall be googling that tonight, but my ignorant understanding of it is that high pressure blood is shooting through his lungs at a higher rate than should be.  The source of the issue needs to be pinpointed and then I guess we'll hear more.

Francis had popped in for lunch and we were looking forward to the weekend and plans we had with the girls etc, and half an hour later a new Dr walks in and 'wham', it doesn't look like we are going anywhere.

So tonight I'm really disappointed, tired and sad.  At this stage in an admission I get very protective and just want to take my little boy home, away from all the teams that each come in and poke and prod and do their thing..... I know they need to do it, but when I see this happy little guy looking so well laughing in his cot, it's frustrating hearing of yet other potential complications. It's also hard hearing constantly about his condition - we forget it at home - he's just Sam!  But in hospital caring people are dealing with medical anatomy and that becomes wearying.  So instead of turning into the spiral of pity that can so easily follow, I opened my bible and was reading the story in Luke 11 where Jesus tells a story of a person waking up a friend at midnight to ask for food for an unexpected visitor.  The friend doesn't initially help as the kids are asleep and it's a hassle to unlock the house, but the person persists.... then it comes to the bit I love where it says, 'I tell you, even though he will not get up and give you bread because of friendship, yet because of your shameless audacity he will surely get up and give you as much as you need.'

I googled 'audacity' and it came up with this: boldness or daring, esp. with confident disregard for personal safety, conventional thought, or other restrictions; nerve.

With shameless audacity I will bang on God's door tonight and ask him for what we need - healing for Sam and wholeness for our family.  With bold and daring confident disregard for conventional thought I will talk to God about it all - my disappointment at this new medical find, my tiredness, my sadness that Sam will have to endure more tests.  I love that God is way above conventional thought and is not restricted by the natural....his light and truth creates a new reality where anything can happen because God is not confined to our logic or ways.  And this truth floods me with hope and holds me from the edge of the precipice that sometimes I edge towards when I only see the natural world. 

I hope your day, no matter what joys, challenges and tears you faced, can end with some quiet to off load your cares on the one that loves you greatly and is not limited to the natural.

I'm hoping for Sam to have a long sleep ... so I can!Sleep well X
x

Tuesday, June 11, 2013

On the improve!

YAY, Sam has had a much better day - phewf!  It started early with a nebulizer at 8am followed by physio chest percussions - this takes around 30 mins and mostly under duress.  The physio lies him on each side and cup their hand and firmly pat/thump his lung, being monitored by listening through a stethoscope.  In between the patting, he is sat up to cough up goop.  If he refuses to cough he is suctioned to get lose goop out.  Being 4 he is now old enough to figure consequences and choices.  So the chats between the physio and Sam have gone something like this:
'Sam are you going to cough?'....silence and a defiant little boy shaking his head....'ok, then I have to suction you'... said whilst waving a long tube infront of him.....5 second delay before Sam starts coughing. It's quite entertaining to watch him making choices in his care now.  I learnt today there is no use asking him if he wants something done as he just says 'No'. Rather the physio said give him 2 choices, 'Do you want me to drain you sitting up or lying down?', 'Sam you have to have the face mask on - do you want to watch a DVD or play with your cars'.  Then when he is set up with his choice he knows if he takes off the mask he loses what he chose...... it worked so well and he was such a trooper today.  Honestly that face mask is horrible but I am so proud of him keeping it on all day, adjusting it back over his nose and mouth when it slips - he's been a real star.

The day was so full with 3 hourly physio, various teams popping in, a surgical visit, phone calls from  radiography about other procedures he needs, trainee Drs wanting to practice their exams on Sam etc..., so we are both tired, but happy - he's happy cos he feels better and we're both happy because his Dad came up for dinner!  It was so nice to spend time with my husband and to just talk about normal stuff, plan the week, sort out misunderstandings (living via email and text doesn't help!), find out what's going on with each other and be loved unconditionally even though haggard, slightly grumpy frumpy and frazzled are appropriate words right now..... now that's true love!

Today Sam is down to 4 litres of 02 humidified which is an improvement.  He has also been clearing out lots of goop from his lungs, so it is good to hear and see the nasty offending goop being dispelled!

The plan is for more of the same tomorrow - steroids, antibiotics and physio.  Sam is asking to go home, but he is still a way off that, but definitely on the way!  As he is doing well, we've weighed up all the bits to our puzzle and have decided I shall escape Planet Starship for the day, leaving Sam in the capable hands of a dear friend that is coming to hang with him.  He will enjoy the break as much as I no doubt!  I will do some work, take Jas to an orthodontist appointment, pick up a bale of hay for our new hens, go for a run (I'm working on the run-once-a -week, run-a-marathon training plan currently), make dinner, see my girls and drop them at their afternoon activity before heading back in to Starship for the night!

I leave you with a photo of Sam having his chest physio - only having Dora playing on our laptop does he stop fighting and let them do what needs doing.... but he puts up with so much, I'm so proud of him.


Thank you so much everyone for your care!
X S

A New Day

Sam has woken happy and slightly improved. He is still on the ward and the plan is for him to have regular nebuliser followed by chest physio and suction. He's just had his first onslaught and they are due back in 3 hours. For now he is sitting up playing with his cars and garage with a face mask blasting humidified oxygen (5 litres) at him. He is being a star at keeping his mask on, but if he takes it off I confiscate a car.... So that keeps the mask on.

Gastro and Respiratory teams have both been.. All are happy with his slight clinical improvement and  agree we plod on with the interventions above to help clear his lungs and try to decrease his oxygen. Slow and steady.

The girls happily ran off to school excited to be heading home to dear friends for the afternoon and sleep over. This means that Francis can come in tonight and we can see each other for the first time in nearly a month..... Ooh a Starship date, cant buy them on Grab One!

Thanks for the texts, meals, love for us and the kids. My body might be weary but my heart is full!
X

Monday, June 10, 2013

Code Pink

Code Pink is what the ward call when they need support from PICU (Pediatric Intensive Care) - its not a life threatening urgent request, but requires a response from PICU within 15 mins.

So today at around 12 noon a Code Pink was called on Sam.  He was requiring a lot of oxygen, had had antibiotics and steriods and still his oxygen requirement was going up.  He was due to head down for a new chest xray, but it was decided he was too fragile for this, so the xray came to him.

PICU came and assessed him, changed around the various ways O2 can be given and respiratory consultant also came.  After the xray and review, it was thought he may have pockets of his lung that have collapsed - ie, lots of mucus/goop that has glued his lungs together in places.  He was started on a nebulizer (not his favourite thing!) and then chest percussion to free up the goop.  Not much came up, but it is definitely rattling around down there.   It is now just past 11pm and the nurses are suctioning him to help him clear some goop - another 'not favourite' thing having a long tube stuck down your nose.  And somewhere nearby an on call physio is being called to come in to give him chest percussion .... so he is having lots of attention and being well cared for.

He is pretty sick, but at other times he is sitting up chatting and laughing with the nurses!  Today we called the elders of our church (as directed in James), so our pastor and some elders came in and prayed with him/me.  We just plod on, being obedient to what we think God wants us to do and be and leave Sam and us in His care.  We don't understand everything, but we do know God loves Sam more than we ever will - and that is a heap!

I think the girls are doing well (I've spoken to them, but Francis and friends are looking after them), but it is always unsettling for them.  

He is very unwell but we are peaceful.  It may be that he is moved to ICU overnight as he needs more aggressive treatment that can't be offered on the ward - although being in ICU sounds worse, it could be a better scenario for him as his lungs may require pressurised oxygen which isn't given on the ward.  I'm tired, but ok - not much sleep happens in this place between constant nursing care (so appreciated!), his humidifier (loud whirring noise) and House Officers insisting on wearing stiletto heals - seriously who is there to impress at midnight? I think it's time to write to all Medical Colleges asking them to train Drs to wear rubber soled shoes and be sensible like the nurses!

Personally I'm wearing my slippers - if life gives you lemons make lemonade!  This is my home for now, so slippers it is - I might start going to the supermarket in my PJs next!

Ok, tiredness and ridiculousness is talking now... off to try and nap before Sams screaming from chest physio wakens me... The PICU Dr has just been and reviewed Sam and said the physio is on her way in - I just hope she's wearing flats!

Sunday, June 9, 2013

72 hours later....

...and Sam is worse than when we arrived.  He is sleeping now, with humidified oxygen at 7 litres to keep his saturations above 95%.

Yesterday after I wrote he had a really rough couple of hours - just out of nowhere he started to breath harder and need more oxygen.  The Dr was called and he was given ventolin (6 puffs) every 20 mins for an hour.  This seemed to help him settle, but not improve.

This morning he still hadn't improved, so the thinking is that the infection could be viral, not bacterial as he should have responded to antibiotics if it was bacterial.  So they have started him on steriods - once a day with his first dose this morning. He had a hospital day with his Daddy and I hung out with the girls sorting the house/washing/meals for the week and making sure they did piano practice/science project etc - life goes on!
This evening we did a switch of girls and car in the car park and I am with the boy!

Tomorrow he has a renal function test - it was booked as an outpatients procedure in the adult hospital, so all the various teams have chatted (renal/surgical/gastro) and it seems appropirate to still do this test even though Sam is on antibiotics for a urinary tract infection.... so atleast that will get Sam out of his 'cell' for a couple of hours tomorrow, albeit it on a medical mission.

We shall see what the week holds - at this point we have no idea, so we take it a day at a time and will just do our best at the time.  We continue to ask God for his healing hand on Sams lungs and that it would clear quickly.  We also pray for the girls as they are both tired and fragile - we had hoped to be a family together this weekend after 3 weeks apart, so it's not easy on them having 'solo' parents again.

X S

Saturday, June 8, 2013

Birthday Photos!

So the first 2 photos were at 8.15 am in our home....


 And this one was on my phone at 2.15 in Starship...
He had a better night last night.  Still needs 3 litres of 02 to get enough oxygen.  He is having humidified oxygen and 3 - 4 hourly ventolin.  He was waking at least hourly to cough/vomit last night, which is a big improvement on the night before....It is Saturday morning, Sam is happy playing with cars and a garage in bed and I look like a train wreck ..... so pretty much a normal day!

Last night when Sams night nurse came on, we were in fits of laughter as Sam was telling her about his favourite movie - Despicable Me, and then he went on to do fist pumps in the air shouting, 'Booyah!'.....you have to see the movie to get this.... so his impersonating movies shows two things: 1.  He is definitely feeling a whole lot better and 2: he watches way too much tv!!

The girls are having a lazy day at home with Francis as Candace is pretty grotty with chesty cold/cough too.... so they have been given strict instructions to do inhalations etc to help Candace get over it and to buy a bale of hay to clean out the hen house - Yes we have 2 new family members - TG (Short for Thanks Giving) and Kentucky.... Sam is terrified of them, but does a good hen impersonation.

Thanks for your love and prayers for the little guy - he's on the up!

X Shirl

Thursday, June 6, 2013

Another hospital birthday

Sam started the day ok after a rough night, had a mid morning nap at his request which is so not normal. When he woke I had a strong sense he wasnt great. But I watched and waited until the home care nurse visited at 1. We have to strip Sam naked to do his central line dressing change at which point it became very obvious he was working hard at breathing. Her sats monitor showed his oxygen saturation at 90% so it was a quick pack and straight to Starship. Sam was so pleased to be going in to see all his friends (aka nurses and drs)! A chest x-ray showed cloudy patches on his lungs so the poor wee man is on oxygen and has a uti and pretty miserable.

Francis brought the girls in at 6, and Sam was so excited to see his Dad after nearly 3 weeks away... As was I, but with nurses, Drs and ecg machines coming and going and girls needing fed it was all bit chaotic and not the happy home coming one was wanting! The upside of tonight is that the girls went to Radio Lollipop and got to DJ for a bit! They gave a shout out to their brother Sam..... We had the radio on in his room and his eyes lit up when he heard his name. They really loved the experience and both want to have careers in broadcasting now!

Francis is staying over tonight even though he is exhausted,'but I work on Fridays and I wouldnt survive tomorrow as I know what the last 2 nights were like. After work i will head in and swap for the night.

So it was lovely to celebrate Sams birthday - the setting doesnt matter so much, just being together was enough.

But i am concerned for Sam. He went down hill quickly and he has 2 infections to fight and he is pale and weak and not his usual self, so am praying that he will respond to the antibiotics (I.V) quickly and well.

X

Wednesday, June 5, 2013

Birthday Eve

Yes tomorrow Sam will be 4! BUT he is feeling pretty miserable with a urinary tract infection and cough/cold and the winter blues. He's only just started his new antibiotics at 6pm tonight - usually it takes at least 3 doses before he improves.... so I've figured out if I get up at 1am and give him a dose, then again at 9am.... he might almost be feeling a bit better on his special day...

Am feeling a bit 'flat' about his birthday.... it's really interesting trying to excite the girls over his birthday - so much of celebration is around food.  We normally have a special birthday breakfast, then a treasure hunt, the 'chocolate' game is the girls all time fav, plus birthday cake and fizzy drink...... so how do we celebrate without food??  So I'm having to motivate the girls to think that bit harder to make Sams day special.... as do I.

For now, I'm just hoping and praying that he picks up, stops coughing and vomiting and can enjoy having his Daddy home!

Off to decorate a cake!
X

Monday, May 27, 2013

Quick call Fireman Sam!

Yesterday I lit the fire for the first time this winter.... Sam came over and said, 'Mum, there is a fire, quick call Fireman Sam!'.  He then proceeded to push buttons on his hand, held his hand up to his ear and spoke into the receiver (aka hand), 'Quick you need to come Fireman Sam... goodbye'.  It was hilarious - and delightful and neat to see him doing imaginary play and putting scenarios together.  The fire roared and warmed us up, no appliances came!

I have been trying to write this blog for the past couple of weeks, but life has been very full for many reasons!

Sam has had many appointments and visits to hospital - thankfully all planned!  2 weeks ago we spent Thursday in Starship having an all day iron infusion.  The week before we had a Wednesday gastro visit/monthly bloods and Thursday we returned for an afternoon for cardiac review where he had an ECG and 'Echo' taken of his heart.  This past week we had pediatric review, a physio appointment and Ministry of Education multi-team meeting with speech/language and OT specialists.  So fitting all these things in, plus the phone calls to get them sorted, amidst 2 other kids and part time work means the days are full...but doable.

The upshot of the various appointments is that everyone is delighted in how Sam has really taken off in all areas of development.  One specialist just keeps saying, 'he is a miracle, you know that don't you!'.  We are already very certain of this as we draw near to his 4th birthday and think back over his long and difficult start to life.  We are so conscious he is a precious gift (as are the girls) that we have the privilege of having in our family.

Kindergarten - Sam attends Elim Kindergarten 3 mornings a week and words simply can not express how amazing and caring the staff are.  His core teacher goes out of her way to think through tasks specifically to develop him where his medical challenges have seen him lacking.  The folder of photos and comments she has put together always brings tears to my eyes.  We are hoping to increase him to one full day after he is 4, as he totally loves going there and is thriving with his speech, interests, mobility and even food!  He squeezed and orange and put juice to his mouth one day and was so pleased to tell us about it.

Food - His intestine seems to be absorbing and functioning much better than anyone ever imagined.  He now receives 50% in his intestine (14 hour formula fee) and 50 % IV (12 hour TPN).  Gastro have reduced his IV bags so that 3 nights a week he has bigger bags with lipids and the other 4 nights they are gradually reducing in volume - this is all great progress.  His name is on a list for a potential feeding clinic, which the health board are hoping to run in July, subject to funding.

Plumbing - It has been harrowing for him and us doing the 4 hourly draining of his new vesicostomy.  We do think it is uncomfortable for him, but he can also let us do it with minimum fuss.  Depending on his mood it can require full restraint just to get the tube in. It is difficult as we don't have the luxury of not doing it and letting him suffer the consequences (which is what we would do with other behaviour issues) so we are working on strategies to help him cope with this necessary evil!  There are specific challenges to parenting Sam.  A good friend reminded me recently that Sam is a boy with a condition, he is not a condition that happens to be a boy!  We still have to train him up in the way he should go, just with a few added challenges and those challenges must not define him.  Just like the girls we want him to be remembered for a kind heart, a person of honesty and integrity etc....

Looks - handsome of course!  I recently gave him a haircut as he was starting to look like a dark version of Einstein!

Speech - One of the nurses giving the iron infusion asked Sam where his sisters were.  He said, 'Jasmine's at the orthodontist'.  She did a double take - Jasmine was actually at school, but the day before we had been for a braces checkup.

Coming up - 
June 6 - His birthday!  He will head to kindergarten as usual, but with a cake to share.  Francis is currently in Asia for work, but he returns on Sams birthday, which will be the best gift Sam gets for sure!
10 June - Sam has a renal scintigram - watching on live xray radioactive stuff flow through his kidneys - am not sure how it's going to be as I think he has to sit still for an hour or two!  hmmmm
19 June - MRI - scanning for a bunch of different things to plot progress and also areas of concern - this could be an overnighter as is under GA.  
He also has weekly home nurse visits and fortnightly physio home visits which are great - we are working on jumping and bending right now.

So life is full, but our hearts are full as we watch Sam grow and develop.  His main carer that comes into our home and works with him 3 days a week and takes him to kindy, is simply incredible, as are the nurses that have also become part of our family.  

We have learnt so many things because of Sam in our life.  A great lesson I have learnt is that God has come to give us us a full and abundant life - and that has nothing to do with circumstances.
We will all face tough times, all have huge challenges, internal struggles, external struggles, sadnesses and disappointments in our life….. James 5 talks of the Prayer of Faith, ‘Is anyone among you in trouble? Let them pray.  Is anyone happy? Let them sing songs of praise.  Is anyone among you sick?  Let them call the elders of the church to pray over them and anoint them with oil in the name of the Lord’. In each circumstance James is pointing us to God - my paraphrase is: Pray when in trouble; Pray and acknowledge God when things going great; unwell? get some mates to pray'…….see naturally a life without God can so often be, ‘Are you in trouble?Moan and whinge to your mates, Is anyone happy, things going great? – go party hard and pat yourself on the back, anyone sick? - take some pills and put your trust in a Dr... .. but we have learnt that we were created to be with God, in the good and the bad….and that is the secret to an abundant and full life… it’s not in our circumstance, it’s in letting the great maker of the universe in on the teeny details of my life…..and the joy and peace that gives us the courage to face the day is not from us, but from God as we let him in.  So we have cried and prayed plenty in the tough times, but now we praise God and will celebrate with a knees up on Sams 4th birthday!  

Thank you for walking, watching and praying for Sam on his life journey.  We could not have done it without the love and support of so many.


X Shirl

Monday, April 29, 2013

In and Out, In and Out

So today is Monday and Francis went to work for a holiday!  Not really, but he spent a large part of the weekend going in and out of hospital with Sam.

Friday afternoon Sam went downhill, so Francis took Sam in at 4.30 so I could be at home with the girls.  It wasn't a great admission - lots of issues again, so long story short Francis arrived home at midnight to pick up Sams supplies - TPN, TPN pump, giving sets, Pepti-Junior (GJ feeds), milk pump etc and went back in and hooked Sam up himself at around 12.30am - 6.5 hours later than normal, which is not ideal for a boy that has damaged kidneys and is admitted with a urinary tract infection.

Sam needed to be in hospital to have IV gent. infusions - it takes around 30 mins and is an antibiotic that we can't give at home.... Francis would bring Sam home for the day, head back in for 8pm (when his infusion was due), would sleep the night in hospital after Francis hooked him up to TPN and then would head back home the next day.

Last night I took Sam back in for a 6pm infusion and brought him home for the night.  Today a HCN (Home Care Nurse) came to our home and gave the infusion here, and will come to give his final dose again tomorrow.

So it's not been a great weekend, one where I've had to check my attitude many times.  Again I can assure you that hospital is full of well meaning, amazing, hugely talented and kind staff - the systems need improving to help them care for our kids better.

We are hoping and praying that his reoccuring UTIs, will also become a thing of the past!

Best wishes
Shirley

Thursday, April 25, 2013

Starship Bound!

NEWSFLASH - 4 pm Friday 26 April
Sam and Francis off to Starship!  Urine smelling strong and cloudy again.  Time to get some IV antibiotics on board.
NEWSFLASH - 12 noon Friday 26 April
Sam had a much better night that we predicted - his urine is a bit clearer, so we have kept him home and will only take him in if he spikes another temperature urine clouds again.... we hoping that he might have turned a corner!  

The last 3 weeks Sam has been fighting with urinary tract infections (UTIs).  We managed to keep him at home by giving him oral antibiotics for the first infection, but a couple of days later it reared its ugly head again.... but this time a different bug was grown that is resistant to most oral antibiotics... so we started him on Tuesday on this antibiotic and the urine seemed to clear and he was happier and no temperatures etc.... until today when he started getting grizzly, his urine is like soup again and smelling like the fish counter at Pak'n'Save.  As it was late in the day when we realised his symptoms returning we decided to hook him up to his usual regime of TPN and milk at home and give him a good night sleep at home and will head in first thing tomorrow morning.

Thankfully Francis has a day off work anyway so he can sort the girls (it's school holidays).  Sam will need to go on IV antibiotic infusions once a day and if previous protocol is anything to go by, we will be in for the weekend.

On a brighter note, yesterday I had Sam at Greenlane Hospital for a dental appointment. After he was seen by the dentist I popped into the pharmacy to get some things and bumped into the very first Dr that we met when Sam was born nearly 4 years ago!  She worked tirelessly in those first days and weeks with Sam in NICU, then we left NICU and headed to the ward and like so many Drs her training took her to other cities.... so roll on nearly 4 years and I had the joy of seeing her face as Sam walked up and said, 'Hi Doc, I been to see the dentist and got a sticker!'.  She literally was lost for words and couldn't believe the little ill boy she treated was walking and talking and had such lovely curly hair!  It truly did my heart glad to show Sam to her, knowing full well that her skill and care had helped Sam and us in those awful early days.  It was a special moment to see Sam chatting with her and to see her stunned face - priceless!

So I best get to bed for some good sleep, as I'm pretty sure the next couple of nights will see me trying to sleep amidst the challenge of hospital!

I am really disappointed for Sam that he is becoming resistant to oral antibiotics - which is a very real concern. But for now I won't let my mind go crazy with where this is heading... and will just take it a day at a time, pray and leave my concerns with God..... I leave you with a great quote from Corrie Ten Boom:

 'Worry does not empty tomorrow of its sorrow, it empties today of its strength.'

X Shirl

Thursday, April 4, 2013

An overdue post.....


Sam is doing great - his new drain is working well, but he hates me coming near it to empty, so lots of screaming and tantrums.  At these times, I say I'll come back when he can be a good boy and let me help him.... sometimes it takes 3 or 4 attempts over an hour (I can get a lot done whilst he's sulking in his cot!) but as the days pass Sam is realising if he just gets it done he can get out of the cot!.... so now it's usually just 1 'time out' and then a little voice calling, 'ok, I'll be a good boy now Mummy' and I can drain his bladder and get on with life!
Tomorrow Sam has 2 appointments at Starship - respiratory review and then a kidney ultrasound.  I'm not looking forward to the latter after his ultrasound 3 weeks ago, where it took 2 of us to hold him down as he was screaming and hitting me and begging me to make them stop.... it was the first time that I've sat there and sobbed with him as I had him in a vice like grip.... I thought it would get easier, but now he can speak and beg it's not!  But it's harder on him than me, so I know I have to toughen up and just get on with it tomorrow.  Hopefully the resulting ultrasound will show an improvement in his kidney since he's been draining better.
I've been doing some more reading and research and come upon a great website, from a charity that support families of rare diseases..... Below are some of their facts and they make for interesting reading - I was amazed and also not surprised by some of what I read... read on and then I'll let you in on why I've popped this info in here.
Although rare and genetic diseases, and many times the symptoms, are uncommon to most doctors, rare diseases as a whole represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem.
Did you know that:-
  • There are approximately 7000 different types of rare diseases and disorders, with more being discovered each day.
  • If all the people with rare diseases lived in one country, it would be the world's 3rd most populous country.
  • In the United States, a condition is considered "rare" if it affects fewer than 200,000 people, in the United Kingdom a disease is considered rare if it affects fewer than 50,000 citizens per disease.  
  • 80% of rare diseases are genetic in origin and thus are present throughout a person's life even if the symptoms do not immediately appear.
  • Approximately 50% of the people affected by rare diseases are children.
  • 30% of children with a rare disease will not live to see their 5th Birthday.
  • According to the Kakkis EveryLife Foundation, 95% of rare disease have not one single approved drug treatment.
  • 350 million people globally are fighting rare diseases.
  • Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
I put the above blurb in, as it's the time of year to break out the running shoes and start preparing for the Auckland Marathon!  This year is even more exciting as many in my amazing family have decided to join me - I figure they saw me do the half marathon last year and realised that as I am the biggest couch potato in the family, if I can do it so can they!  So far my brother and sis'n'law from Australia; Sis'n'law from Invercargill; Sisters from Gore, Dunedin & Havelock and maybe a niece from Christchurch have registered!  Some are doing the half and some the full.  So the weekend of November 3 is going to be such fun up here in Auckland!

Last year I ran for Kids Foundation - the kids arm of IDFNZ (Immune Deficiency Foundation NZ).  Sam doesn't have immunity issues, but as he is on TPN, his liver potentially is at high risk and IDFNZ deal with liver and kidney issues as part of their remit.   For many families with a 'one in a million' rare gem, they fall between the gaps of mainstream charities.  So, with great gratitude I/we (Team Sam) want to fundraise again for Kids Foundation, as a way of raising awareness of what they do and to support them, knowing that the funds will be well spent on advocacy and support.  There are hundreds of great charities, but some of the smaller charities (eg Kids Foundation) don't have the same profile or celebrity endorsement of some of the bigger charities due to the fact they support 'rare diseases', yet as you see above, rare diseases affect millions of people..... So, watch this space and Team Sam will keep you posted.....