Monday, May 2, 2016

Term 2 School is On!

Last time I posted Sam was just about to leave hospital having had his Central Line removed from his chest and a PICC line inserted in his arm.  We were SO excited to bring him home without a Central Line - the implications are HUGE... but we also new it was a trial and we had to watch and wait and see.  Also we had been burned previously when great advances in his health had needed emergency surgery as it hadn't worked..... so we didn't want to really get excited, just in case.... our weary hearts weren't sure we could cope with the disappointment if it wasn't as good as everyone was saying it was....

So that is why I have waited to blog - I wanted to focus on Sam and making sure we could do everything possible to make the positive changes stick.  

Sam has been coping fine without intravenous feeds.  We have been hooking him up to his 2 feed pumps (into his Jejunum) for 12 hours every night as usual, BUT we have also been giving him manual bolus feeds directly into his stomach 5 times a day.  The team wanted us to get him up to 3 feeds of 100 mls, but we found he started gagging or vomiting once we hit 80 mls, so not wanting to ever go back to TPN, we have been giving him 5 x 80 ml boluses. Each Saturday I weigh him and let the team know how he is doing.  So far so good - 20.8 kg, 20.8 kg, 20.1 kg, 20.3 kg.  So although he had a little dip, he seems to be holding his own.  I am trying to give him more calories if possible so that we can add some meat to his bones.

Each Thursday I access his PICC line in his arm by drawing back the strong heparin, flushing it with saline and locking it off with fresh heparin again.  We need the line so I can do monthly bloods (tomorrow).  The team also wanted him to keep the line so we could give him IV antibiotics if necessary - BUT this is the next fabulous news.

We convinced the medical team that reusing urine bags (I get one per week and have to wash/sterilise it and use it 7 times each week) was potentially one of the biggest sources of infection - I have always doubted that reusing the bags, which have a 30 cm skinny neck that you can't actually clean (but could leave soaking in Miltons) would never actually have become sterile again.  To me it seemed nuts that we have to clean his urine access site, use a clean catheter and sterile wipes each time, then hook up a bag that probably was dirty. Anyway, our fabulous nurse specialist managed to make it happen that we are using clean bags every day on a 6 month trial.  It is being done as a proper clinical trial, so that if the outcomes are positive, the team would then use that information on other patients that regularly get urinary tract infections and also currently have to re-use bags.  Well Sam hasn't had a uti since we started using clean bags 6 weeks ago - this is the longest stint without a uti since March 2014!  The difference to him (& us!) is probably bigger than getting him off TPN.  I know each medical department have their own budget to protect, but surely the bigger picture of the cost of a daily bag (from our home care budget) is much less than the cost of ongoing hospital admissions, expensive antibiotics, not to mention the loss of schooling to Sam and how much his body has to cope with in regard to pain and antibiotic resistance.  So, potentially, as he hasn't been needing the PICC, it may be taken out in the next week - NO LINES!!!  Just a GJ, poop bag and 2 urine drains - woo hoo!!!

Sam has started back at school today in his winter uniform - long woolen socks and shoes. The smallest socks had the heel nearly at the back of the knee, so they have been washed in boiling water and dried in a hot dryer - still too big, but not laughable anymore.  They are folded over many times otherwise he would need suspender belts!

On May 21st Sam will again be a patient for the Australasian Medical Exams.  This is where Drs from around NZ/Aussie are examined... so naturally they need patients that they don't know, to be tested on.  This will be my third year doing this, and although it is a long day, Sam copes well as long as he has cars to play with, and it's nice to be able to give back to the profession that has done so much for him.

Also I have been asked to be on the newly created, 'Clinical Excellence Committee' at Starship and ADHB.  This committee is made up of 12 hospital managers, 1 Maori Rep and 1 Consumer Rep.... I am the Consumer Rep.  The meetings look to be monthly with pre-reading involved.  I'm not sure I will understand a lot of what will be discussed, but I do see it as a privilege to have been asked and I hope that my perspective can help advocate for families and keep patient care at the forefront of medicine.  It will be odd being at Starship without Sam present!!

Sam seems very happy, although he does try to get out of having his boluses, as it is a strange sensation for him.  We continue to work with him to try food, but he is very reticent to and very stubborn - but his strong will surely has got him this far!

I leave you with a picture of Sammy helping us set up the caravan at a weekend away!   Hopefully the next photos will be of him without a PICC line and the other of the TPN company taking away his pumps, pole and trolley!  

Best wishes

Tuesday, April 5, 2016


Yesterday we waited most of the day to head to theatre, but at about 3.30pm were told it wouldnt be happening - but we would be early on the list this morning.

I had been prepping Sam about how I needed him to be brave and that screaming and shouting upset all the kids on the ward that could hear him. He understood he needed to be brave.... So he made a deal with me and we walked down together hand in hand ... Him in his 'Shark' dressing gown ... And me in my clothes (sadly I dont have a mathing gown, but be assured if I did I would have worn it today with great joy if it would have helped Sam).

Hr came back with his left arm bright pink with iodine, as they had tried to find a vein, but gave up and found a usable vein in his right arm. So he currently has a pink arm and a white arm, as it is bandaged to secure the line.

He woke relaxed and happy and it was amazing! He has had a lovely afternoon and looks forward to escaping home for a few hours tomorrow. The plan is for discharge on Friday - roll on the weekend!


Sunday, April 3, 2016

Sunday Night Update

Phewf, what a few days it has been - we are emotionally and physically tired.

This past surgery was different to the rest.  Sam is so much more knowing and when I talked to him about going for surgery he went beserk.  When the orderly came to take him down he was screaming (literally the whole ward could hear him), 'I DON'T WANT TO GO FOR SURGERY, I'M NOT GOING'.  It is hard forcing your kid to do something that literally is needed to save his life - the sepsis was consuming his body and he needed the line out that it had latched on to.  But a little 6 year old boy doesn't understand that when he has a high temperature, feels miserable and is scared.

Post op he was slightly better than normal.  We left for theatre from room 21, but it was felt better we were nearer the nurses station for closer monitoring, so we returned to room 5.  Bizarrely the channels on the tv vary according to which room you are in, so we left with Disney Junior available, but then it wasn't!  He wrestled and screamed for about 20 minutes wanting to go back to his old room.... it is hard work forcing him to keep his nasal prongs in, which are unpleasant, but necessary...

So the hard happened and yet at the end of the weekend it is a very different picture.  The medical teams are thinking hard how to increase the calories in his enteral feeds and how to be creative to get fluids into him, that he may not even need another line in.  Currently he only gets 16% of his fluids and calories via his central line (well he did before it was pulled out).

Yesterday the plan was he was on the acute surgical list for Monday to get a new PICC line in.... but in the last 24 hours the teams are suggesting they meet on Monday to brain storm options to see if it may actually not be needed.

This is SO huge - the potential for his life without a CVL is incredible to think of.  He would be less at risk at awful sepsis like he has had twice in the last 3 weeks, he would be able to get wet/swim, we wouldn't be tied down to the clock (as much!) etc etc etc...  

At point of writing we genuinely have no clue what tomorrow holds for Sam - we are in the hands of the medical teams, but we are really optimistic for change.

2 nights ago I had a chat with Sam that rocked me.  I was tucking him in and he was pulling on his nasal prongs.  I told him to leave them and hopefully they would be able to come off the next day as he was getting stronger.  I cuddled him and told him I was so proud of him, so proud of how brave he had been even when he has to have things done to him that aren't very nice.  He paused and said, 'Was Dad brave when he was a little boy in hospital?', I explained that Daddy hadn't been in hospital when he was a little boy. 'Was Jasmine brave like me when she was a little girl in hospital?'... and for each person he asked me I explained that neither Jasmine or me or Candace had been in hospital having operations like him.  It was quite a weird/special/sad/intriguing moment as I could see the cogs ticking over in his head.  I was intrigued as it seems he thought that what was happening to him must have happened to all of us.  It seems he is beginning to see that his life isn't the same as ours.  Maybe he thinks the same about food - he sees us all eating, but maybe he thinks we were all just like him once and then started he gets older the conversations and thoughts will no doubt develop. I do feel sad for him as he experiences pain, needles, drugs, poking and prodding at the hands of many..... such a necessary thing though.... I cry in private, Sam needs me to be confident and upbeat. Yay for tears, or I would implode.

This afternoon Sam and Francis escaped home for a few hours, which was great.  Potentially Sam, if no surgery is required, will be able to get to school this week, as it is only his 8pm dose of IV antibiotic that it keeping him in hospital.  We are looking forward to having Grandma to stay from Tuesday, which is a total blessing as Francis is away for most of the week for work, so if I am in hospital sleeping with Sam each night, Grandma can be playing scrabble with my girls - she always wins, but they like the challenge.

Who know what your week holds - rest up in the fact that the Lord God, maker of Heaven and Earth is watching over you and has plans for you. 

X Shirley

Thursday, March 31, 2016

Urgent Surgery Today

So Sam has had a great 10 days at home.... Until last night! 2am he woke with a really high temperature, 3am it got higher so I gave him pamol ...4.30am he was up to 40 C + and a bit delirious, so I hooked him off his 3 feeds and rushed him into Starship. It has been a long tiring day with Sam fighting needing oxygen and constantly fighting his nasal prongs.

Blood results quickly showed he had a blood sepsis most likely in his central line. He was given three antibiotics and many discussions were had between the various teams - Infectious Disease, surgical and gastro. It waa decided that as this was the second time in 3 weeks he had a life threatening sepsis, that the line had to come out. At 5:45 an orderly appeared to wheel Sam down as there was a spot on the surgical list. Sam was really exhausted as he hadnt slept since 2am, so he was loud
and screaming he didnt want to have surgery. He was really scared as well as thrashing about, so the poor wee man knows what is happening and was so unhappy. I cuddled him as he thrashed about. We talked about how he felt scared and I told him when I felt scared that I remembered what God said, 'Dont be afraid, for I am with you'.... And I asked God to come and be with Sam and help him cos he was afraid. I sang and cuddled and prayed in his ear ... And he relaxed and became calm. When I stopped praying he asked me to keep talking to Jesus about him. I love that faith is real and tangible and impacts every day life.

Once he was asleep I came back to my room and cried - tears of sadness for Sam, tears of grief seeing him struggling, tears of helplessness that I cant protect or take away his pain. Tears of tiredness, tears of 'I dont even know really what for'.

I sit in his room waiting for the call from post op to summon me down to get him. I am hoping and praying that he responds ok to the anaestetic and isnt violent like he has been.

Again friends and family have stepped in to support the girls to get them to piano lessons after school to keeo their routines in place.

Although it is disappointing he loses this line, Sam now only uses it 3 times a week now - Tues and Wed he has TPN and Sat he has clear fluids. His IV Nutrition is only 16% of his calorie and fluid content, so maybe, just maybe the team are looking at how to increase calories in his GJ so that he may not need another central line - this is truly an amazing thought!

Good sleep is our most important thing tonight so Sam can recover and get stronger, as well as the bugs in his blood to be hit hard by the antibiotics. Also for the girls to feel secure and content inspite of the upheaval.


Saturday, March 12, 2016

Roller Coaster .... Again!

So at 10.30 yest morning we we told that Sam had been taken off the surgical list, as the blood cultures from his line had come back negative. It was all very bizarre as his feeds were all still stopped at 2am.  Anyway, again the frustration of so many teams involved (gastro, surgical and resp), plus whatever the hospital politics are it has been a weird 24 hours.

So the good news is that the line has been saved, the bad news is that he needs a 10 day course of antibiotics, 3 times a day. The good news is that he is well enough to be up and about and all seems normal, the bad news is that this drug is only licensed for adults, so he must stay in hospital for the duration. 

He is still battling with something in his lungs so needs oxygen at night, which he is not impressed with. At 2am we had a bit of a wrestle to get them on (I could be a hostage negotiator with all that goes on in a day in his hospital room!). At one point I looked at the nurse, who had seen me intersct with him for about 10 mins, and said, 'I know we have an anti smacking law, but he is just being plain naughty and he knows I am powerless and I am over negotiating, so I am going to parent him now as I see fit and that will involve a smack'. 2 mins later and prongs were on.  This isnt a political blog, but  he anti-smacking law inhibits me parenting Sam and also he has learnt defiance due to it, and in his case he needs to comply for his health.  

This morning Sam was blatantly rude and defiant when he needed to do his chest physio, he was wasting her time and mine and he needs to donthese exercises to strengthen his lungs. I looked at the physio and said the same to her as I told the nurse at 2am .... Again the negotiating, begging (both parties) came to a complete holt and the physio work was completed for the benefit of Sam. I really am angry that I feel watched and in potential threat because I am helping my son, and yes, that involves a smack sometimes.

At 3am the Dr was called as his oxygen requirements were going up. She was happy that trhe antibiotics he is on are broad and will cover his chest.

So the upshot of last night is I am a bit weary.... But not enough to escape hospital! I write this as Francis drives me and the girls to Auckland airport. We are heading to Wellington for the weekend. 1 pm flight and we have great plans of discovering Wellington this afternoon (I have been mumbling something about needing a Nana nap). Tomorrow we will have the day at TePapa. The girls and I head back to Auck tomorrow night so I will see Sam tomorrow night. It is weird/hard/awful leaving him, but his special nurse 'T' is going to hang out with him so we can take his break. The girls are so excited and its hard trying to be excited feeling like you have left your left arm unwell and in hospital. The medical teams were happy for me to go as he seems stable and if anything changes I will just come back earlier.

The plan this week, all subject to Sam not throwing a curve ball, is hopefully we can juggle his drugs to 6.30 am so he can have day release and get to school for half a day, returning back to hospital for his 2.30 pm dose. 

Its been a full on week - I think I handle them worse as I get older. Sleep depravation is truly a form of torture ... Looking forward to some shut eye this weekend.

X Shirl

Friday, March 11, 2016

Surgery Tomorrow

The last week has been a whirlwind of sleepless nights, hospital, school camp for daughter no#2, ultrasounds, infusions and multiple trips up and down the Auckland Motorway.

Saturday night Sam was very unhappy with a lot of waking to vomit and complaining of back pain. At 2am he had a high temp, but with pamol he settled. On Sunday morning I bundled him up and into the Emergency Dept. At this point he hit 42 C and was shaking and telling me he was scared. Unsure of the source of the infection, he was admitted, blood and urine tests done, chest xray to see if a pnuemonia is the culprit.  Twice we were to be transfered to the ward, but he was too unwell to go up until his vital signs had improved.

Various theories circulated as to the source - viral, urinary tract infection, line infection or the start of a lung infection.  Until definitive results showed the source he was given a mix of hard core antibiotics. 48 hours after they were started blood results showed a nasty bacteria attached to his central line.

So tomorrow he is on the morning surgical list to have his current line pulled out of his chest, as the bacteria is very hard to kill once it attaches to plastic.  He will also need to have a new PICC line put in so he can get his nutrition and antibiotics. He will need a couple of weeks of  big drugs to kill the bugs, them once the team are happy these have gone he will need another surgery to get a new central line.   Doing the maths, I'm guessing  conservatively we are in for atleast another 2 weeks.

With Sam being older he told me tonight that he was scared about the surgery. We talked about it and he said something that surprised me, he said, 'but I like my line - if it goes how will I get TPN'. To us it is a medically inserted device. To Sam it is a part of him, its all he knows... So we talked some more and I told him he would get a PICC line so he could still have his TPN. I asked him if he would like his line back from the surgeon to keep. He perked up and smiled and said, 'I would love that - good idea!'. I cuddled him as we talked and then he asked me to sing 'the song I love Mummy', so I sang his favourite Psalm, 'The Lord bless you and keep you, the Lord make His face shine on you and give you peace'.  So as Sam grows and develops it is a challenge how to communicate with him and how to support him as he navigates his extra ordinary life.

Sam has been encouraged by a package of letters from his classmates. They are totally adorable and displayed around his room.

So a big day ahead for Sam.  We would value your prayers for the surgical team and for Sams body to fight these germs .... And for Sam as a little 6 year old boy to be brave and courageous and to know peace.

I leave you with 2 pics - 1 of an adorable letter now on his hospital wall and 1 of our little champ.

X Shirl

Tuesday, February 9, 2016

Lots of 'NEW'

So 2016 is well and truly here and we feel like we are just catching up with that fact as we had a lot of change.

At the end of last year we moved into a larger rental property and rented out our place =  NEW HOME.  Our home is small and especially so with a stream of miscellaneous medical people around on a regular basis.  It felt like the right time and we needed to consider the girls and their needs more.  It now means Jasmine is under our roof and not in the shed!  This meant Sam and Jasmine had the opportunity to move to NEW SCHOOLS.   Francis also got a NEW JOB, as did I (just a little one, 9 - 12 Tues - Friday) and we bought a NEW (second-hand) CARAVAN (first one was a leaky home!).  So all of the above was quite a juggling act, as there were meetings and countless emails/phone calls just to sort out Sam moving school/care options etc.  I am pleased to say that he is now in week 2 of his new school year and totally loves it and has fitted in so well.  This is not just due to the hard work of so many people at the school, but of course because his faithful carer of 6 years was kind enough to toddle off to the new school with him - Ange is truly gold!

With the end of year busy and the added busy of the list above, I crashed and haven't yet got back to full capacity.  Chest infections, Strep throat etc, and 3 lots of antibiotics and 6 weeks later and I think I'm nearly better.  The frustrating thing is I was nearly better a few times and then Sam would have a really bad night (UTI), then we'd have a hospital admission for 24/48 hours and with no reserves on top of poor sleep I would slip back.

So this weekend coming up I am staying here at home to sleep and rest whilst Francis takes the kids away for the weekend... and then next weekend I am heading off to Napier to stay with my sister Elaine and experience Art Deco weekend and also have whole nights sleeps without pumps, leaking drains or vomitting to wake up for!  2 weekends in a row with sleep - can't wait!!  Francis is amazing and always helps so much, but he seems to cope better with broken sleep than me. 

Anyway, enough boring... on to Sam!

Sam has had a fabulous summer!  He has camped in our caravan and had his first Kayak experience, first music festival (Festival One) and lots of lovely play time in the caravan and with friends. 

 Dad and Jasmine taking Sam on an adventure

Chilling on a wet day in the caravan - no TV, no DVDs, no technology...... ah... bliss
 Possibly a tad too loud, but he loved the social aspect of 3 days with people!
Sams buddy Liam won a photo competition with Sam as his 'model'.  It's such a great photo of Sam being contemplative (um, he was bribed with a new matchbox car if he sat there!)
Rocking the new school uniform - Mellons Bay School.

We are back into appointments and plans for his nutrition and care.  He continues to get UTI's and he has had some hospitalisations and meds at home, but we are working on mechanically emptying his kidney and bladder using different techniques, to help us get the residue urine out, as any left in is a source of infection.  Warmth + moisture = bacteria.

We saw the Urologist last week and it was a positive appointment.  Ultrasound scans taken when Sam was an inpatient 2 weeks ago, plus the results of a blood test and special nuclear testing in December show that his kidneys are coping remarkably well, considering they are infected so frequently and then have to cope with strong drugs.  He explained that scar tissue can be a result of infection on an immature kidney, but these risks reduce after about the age of 7 or 8.  Sam is 7 in June, so although he isn't in the clear yet, everyone was optimistic and delighted in the state of his kidneys with all the other factors involved.

Sam is now on the 20 percentile for height for his age, but has been dropping the weight and is down to 20 kgs.  We are working on trying to increase the calories in his enteral feeds, to see if we can fatten him up a bit.  This is preferable to having to increase his TPN again.

He shows signs of interest in food and positive peer pressure is such a big factor in his normal development.  His little buddy Liam (photographer extraordinaire), had him licking lollipops and kissing melon with no questions asked.... so we continue to try to encourage him with food.... but as with my other kids, he'd rather take advice from a peer than from his dinosaur outdated mother!

So I feel like we are back on the rat-race of hospital/school/deliveries etc... except we never got off and had a break.  But that's the thing with a chronic condition, there is no break - no break for the diabetic or the epileptic or the stroke victim.... life is what it is and we have to wake each day and decide how we respond to the challenge of that.  I have to confess with illness piled on top of exhaustion I didn't responded well.  

At Festival One I went to a seminar given by an inspiring man who has Cerebral Palsy (whose name escapes me right now).  He has a PhD in Theology and lectures at university level.  Listening to him from his wheelchair, constrained physically by his body, his heart and soul was ever so alive.  He was vibrant, yet real in the struggles.  He was optimistic and hopeful as He had found the reality of faith in Jesus the source of his strength to keep going each day, inspite of physical pain and trials. He was such a source of encouragement to me. May you have people around you wherever you are that can encourage you today.

I hope to be more regular with the blog... sorry, it has definitely slipped!  And I think a regular photo or two of Sam is a dose of good medicine too. 

X Shirl