Wednesday, July 29, 2015

Home!

Yes we made it home with bags of new medicine and supplies, multiple trips into the car with 'stuff'.  Sam made school for half a day and then 'home'...... 'home' as in where we all live, but 'home' is currently a minor building site with no toilet or bath or internal doors and lots of mess!..... we decided to make the most of having Sam in hospital and renovate the bathroom - it seemed like a great idea at the time.... and actually has been just the right time to do it as we had access to hospital ablutions!  But the project ran a few days over due to the usual hiccups that come with moving walls and plumbing.....

We have two new toilets in our lounge, in addition to the shower, bathroom door, vanity and cabinet.... so our home is total chaos, but its nice to all be back in it, even if there is grumbling from some quarters as we have to trudge in the rain to the caravan on the back lawn for some relief!  It's just like the 1930's having an outhouse!

Enough of our ablution issues... I end with a fabulous story about a very kind hard working man that came to our house at 8:10 pm tonight.

This morning I was called at 8am and told Sam's nebuliser compressor unit had been ordered and would be delivered today.  At 5pm I called my contact to say there hadn't been a delivery or a phone call and could they look into it.  They called back to say the delivery guy was really busy but would be at our place about 7.  At 7:45 he called to apologise and say he was 30 mins away.   He arrived at our door apologetic and explained he had had 8 elderly patients that he was delivering things for and he got delayed sorting out their beds/equipment and that it took longer as many of them were very unwell.  He nearly called to say he would drop it in tomorrow, but decided not to.  He had one delivery after us and then he would head home to his family, ready for a 6am start tomorrow!  He was the nicest guy and when I thanked him he was so gracious and caring and I'm sure he isn't paid top dollar, but worked hard knowing what he does matters..... and it totally does matter to us.  

We hooked Sam up to his new equipment and we hope and pray that his lungs benefit from the drugs he inhaled, and will be inhaling for the next 3 months, twice a day...... and we pray a blessing and hope on the delivery guy for sacrificing time at home with his family, for ours.

Sleep well X

Monday, July 27, 2015

So near... yet so far.......

Home is a word being bantered about more often now.... but it is so hard to get all the pieces together to get out the door!  It is definitely harder to get out of hospital than in!

Today I didn't go to work so I could be here bugging people to make sure all the pieces are being laid in the right order, cos if they aren't it can easily slip us into another day and another and then it's Thursday which means might as well give up on Friday so let's just stay the weekend!

On Friday afternoon we had a discussion with the respiratory Dr at 3pm about ordering home oxygen. The comment was made it took 48 hours from ordering to get the oxygen in the home. They chatted and decided it wasn't worth doing it then as it was Friday and they would wait til Monday.... so they had another discussion today and they couldn't confirm if it had been ordered today or not!  So days dribble by with not much to show for it.  In my thinking (& what I told them), was why not flick them the email on Friday afternoon and risk someone being in to start the ball rolling, or worst case scenario they see it first thing on Monday morning....  but no, plod plod plod.....

This morning we waited until 12 for a chest xray.  The gastro consultant was asking me about who Sams cardiologist was as they wanted to talk through with respiratory the various issues.  I made the comment that wouldn't respiratory want Sams new chest xray results first, so they could have an informed discussion.  I explained we hadn't had the xray yet - it seemed no on had booked it... so this kind of cross team communication really slows down the process.  It was decided on Friday the need for an ECG of his heart...... and today after me asking many times it was finally booked at 12:30 today.... so we now await a time - again it could have happened today if they had done it yesterday.

Today I had nebuliser training.  Thankfully no rocket science involved and looks pretty straight forward, but it will add to Sams daily care regime and will be time consuming.  It will take around 15 minutes every morning and evening for 3 months.  Plus, we have to boil sterilise the parts and dry them.  It is a standard Cystic Fibrosis piece of equipment and had he actually have CF we would also qualify for the microwave steam steriliser.... but alas no, we have to boil it in a pot.....  At this point it just seems means, that due to the fact Sam doesn't fit the exact criteria we can't access the same care - physio/equipment - yet he is having identical treatment for virtually same symptoms..... maybe there are free steak knives somewhere we get which I didn't read in the small print??  I don't begrudge anyone what they have to help them cope with their childs awful condition, and I understand resources aren't infinite...... I think beginning week 6 in this place skews my judgement over what is normal and fair and right.....

On that note, I hugged farewell to a very special family that took their child home today - very very cool to see them on their way home after a long and tough stay. 

On Sunday as a family we read Isaiah 61. v 3.  It talks of ' Put on a garment of praise instead of a spirit of despair...'.  This week I've been thinking about this as it's easy to get down contemplating Sam and his situation.  A jacket or jumper is only of use to take away the cold when it is put on, but I have to put it on for it to take away my cold and make me warm..... as it is with life, I have to choose to pick up the jumper of praise and put it on me and only then does the despair go away.  I don't want to be despairing and sometimes in my stubborness I'd rather sit their and shiver and moan..... but it totally is true - hope comes when we are thankful and grateful and only then does the cold dissipate.   Starship is a myriad of things. It is a place of hope and healing, sadness and bad news, joy and laughter, miracles and milestones..... it is like a weird kind of family..... So we are thankful for all that Starship is to Sam and our family.......and just like any family there are bits that drive us crazzzyyy!!

Night night.

Friday, July 24, 2015

End of another week....

... and we are still in with vague murmurings of discharge.

A brief summary, cos no energy to waffle (hooray you all shout!)

1.  Still needs 02 at night
2.  Concern as to why - is it a more sinister thing?
3.  Want to do a heart ECG - need to rule out blood flow issues
4.  Monday morning will do another chest xray
5.  Based on point 3 & 4 results depends on next course of action.
6.  CAT scan required on his lungs in next few weeks.
7.  Oxygen being ordered for home (takes 48 hours to organise) so that would take us to Wed discharge at earliest.
8.  Home compressor for nebuliser has been ordered.
9.  Francis and I need training on how to do antibiotic nebulisers

The weekend ahead involves the usual netball, hospital zig-zagging, painting the bathroom and family celebration on Sunday, all hopefully with long nights of sleep thrown in.  I now know why they use sleep deprivation as a torture technique.........  we hope you have a nice weekend.... 

Monday, July 20, 2015

It's been a good day!

Sam had his 30 min physio session this morning (see blurry photos below) followed by a chest x-ray.  The good news is that the xray showed a marked improvement, so it was decided Sam didn't need a scope or wash out - so no GA to recover from either.

 



We are delighted by this and so glad for his progress.  This afternoon he ran around lots but then was exceptionally stubborn and refused his afternoon physio.... so as I entered his room returning from work, Sam said, 'hi Mum... I wasn't a good boy this afternoon!'.  I commend him for his honesty!

This afternoon the girls hung out with him and had wheelchair races and we ate as a family in his little room - nice to catch up on the girls first day of school.

They are all heading home now and the plan is that I will sleep here and maybe Sam will get to school for a chunk of the day tomorrow.  He needs to be back for his 4pm meds.  He is very excited about getting back to school and we are hoping that parents are being responsible and not sending their kids to school with green runny noses!

Right, the handover nurses just coming and I need to do Sams 'bubbles' before he gets to sleep.

X Shirley

Sunday, July 19, 2015

Into week 5

It's quite hard writing the blog as I am conscious that I want you to like me.... but sometimes if I really wrote what I thought or had happened and my response to it, I really don't think you would!

I had been fuming and plotting my words all afternoon, looking forward to rant and spew forth my justified frustration and sarcasm and blah.  But as I stretched my hands and cracked my knuckles flicking open my laptop, I feel uncomfortable.  With hindsight I could often do things differently or better.  So tonight I choose to not rant - not because I think you won't like me/what you read, but because with a rant it tarnishes those unfairly as it is only my perspective..... my tired, 'protective mother bear' perspective.  And in the world of social media that we now live far too many people tarnish others with no accountability for the writer and no right of reply for the person.  Instead of having a tantrum in arial font, today I chose to take my rant to God, knowing that he gets it all ... and in the quiet post-rant, His peace comes and I have renewed hope and joy for the week ahead, in spite of it including a procedure for Sam under GA!  Discussions that have been productive and hopefully helpful for enhanced care for all patients have also taken place, so I'm happy with that.

Last week Sam was started on two strong antibiotics.  On Thursday he had a chest xray which showed that his lungs were in worse condition than the xray 3 weeks ago.  This was disappointing and very concerning and now the Respiratory Team has stepped in to take over his care.  This we are relieved about and had been pushing for.  Basically the pneumonia (which was the catalyst for this admission) should have run its course and be at a much better stage - but it isn't.  The concern is why he still needs oxygen every night and why his lungs are not improving.  He runs around all day and seems fine apart from an occasional fruity cough. As soon as he is asleep the lungs seem to get plugged up with gunge and he needs oxygen.  They are not prepared to let us home (even with oxygen for at night) until they have figured out more.

The plan is hopefully tomorrow or Tuesday he will head to theatre for a bronchoscope and bronchial lavage - looking inside his lungs/bronchial tubes and then washing them out with saline and suctioning out the goop.  This is a procedure often done on kids with Cystic Fibrosis, and various pamphlets have been appearing in our room with this as the heading. Also Bronchietasis is a word being bantered about.  Sam doesn't have CF, this was genetically ruled out when he was 2, but he is presenting with similar symptoms.

It's not great news, although it's hard to accept it when you have a hilarious happy boy that is charging around like nothing is wrong! His memory is still amazing and he does his own ward round... he literally remembers every patients name, their parents names, if they have a dog, who is there nurse today etc.  He will walk around and go to one room and you can hear him shouting into the room (he knows he can't go in), 'So-and-so have you had your antibiotic yet?...has Helen your nurse come and done your obs?'.  He also doesn't talk any more - everything is shouted at full volume, so it really does seem crazy he has an issue with his lungs!

Over the weekend Sam and Francis came home each day in between antibiotics.  It was really fabulous to have our regular Sunday pancake breakfast and then head off to church. Sam was so happy to be with both his sisters again and it was the first time in 4 weeks we have all been at home together.  At one point Sam dressed up in his police play outfit to arrest a sister  - the charge was 'having a bad attitude'.  

I brought Sam back in for his 4pm meds and am sleeping over with him.  When Francis stays with Sam they call it 'Bro-time'.  I asked Sam tonight what do we call it when it is Sam and Mummy hanging out?  He looked thoughtful for a second then said, 'Gro-time - Girl and Bro'.  So tonight is Gro Time and tomorrow is day one of Term 3 at school.  Sadly Sam won't be making school.  He has another week of antibiotics so we are hoping that once this wash-out procedure is done we can time his antibiotics so that for the rest of the week we can leave early with Sam and get him to school for most of the day to keep his life normal and so that I can go to work. Clearly if he was too sick to be at school we would keep him here, but the medical teams are happy for this option.

A final shout out to the fabulous play therapists and liver nurse specialists.  These guys are legend, as they think about Sam.... Sam the little 6 year old boy, not Sam the 'insert specific anatomy here'.  Sam will need daily antibiotic nebulisers when we finally head home.  When we were first admitted it required 3 of us restraining him to do this. The play specialists have been involved and now Sam is asking for the nebuliser.... for it is no longer a piece of medical equipment, but when he puts the mask on he magically turns in to a fire breathing dragon and scares everyone that comes into his kingdom!  The change is amazing and I am so grateful for their cleverness and willingness to make his necessary treatment into a game and not a necessary evil.

I leave you with a photo of Sergeant Sam taken before his first arrest of the day!




Tuesday, July 14, 2015

A major speed hump!

Sam's sputum has grown pseudemonas and ecoli - it's in his lungs, which is not good news. It means  yesterday he started a week of strong antibiotics - cephtazidim (IV tds) and amikaycin (IV once day).  He is also having twice daily physio input.  The plan is that he is hit hard by abx for a week (or two if needed) and then will head home with oxygen and a compressor so we can administer daily IV nebulisers for another month!.  This is not great news as Sam hates face masks, let alone one that is hissing and spitting moist steam at him..... but need must go above want, so we are working hard with the team and lots of ideas are flowing - ipad with ear-phones/music etc...

Today Jasmine stayed the day with Sam in hospital - am so proud of big sister offering to hang out with him.  Her verdict on the day, 'boring, not very exciting and Sam was a pain' - sounds like a perfect day in paradise with 2 siblings!

Tomorrow is Francis' birthday so Sam has created a birthday card, which is covered in cars and roads...no surprises there!

The above is disappointing, but do-able.  Sam continues to be happy and asks for his daily wheelchair wars with the kids on the ward - they have fun zooming the halls. Courageous little men making lemonade from lemons.

I leave you with a picture of the boy blowing bubbles to try to wash his car - covert chest physio that must be done several times a day to get those lungs clear!  We will work at washing all of Sams cars if it helps!

Sleep well.

Saturday, July 11, 2015

Saturday morning.... nearly home....

So much to update you - I should do it in small bits through out the week, but often I am so tired I just blob hoping I will sleep and catch up on this horrible exhausted feeling..... but last night I slept a whole night - no monitors beeped, no fluids ran out needing replaced (the nurse must have written it on her work sheet!), so with 6 hours sleep under my belt, I am awake enough to write.

The big picture stuff:
Sam admitted with pneumonia.  He required chest xrays, which confirmed he had pneumonia BUT also showed that his central venous catheter (which we use to hook him up every night for his TPN) had migrated into a smaller vein.  This meant it was not usable and needed changing, but couldn't until his breathing was ok to cope with an anaesthetic.  3 days in a row he had peripheral lines put in that were used for a few hours and then tissued. This was tough on Sam and was decided to see how he would cope without IV fluids if we doubled his feeds into his gut by his GJ tube.  So instead of being on 12 hours of 'milk' and pedialyte, he was put on 24 hours of both.  He coped fine with this and that flicked a switch in our heads to get creative with his feeds.  So after discussions with the team and whilst he is in here and can be monitored Sam has had 3 alternate nights with no IV feeds at all, but increased gut feeds and coped fine.  This is HUGE news... this is beyond the realms of possible... this means that Sam will be for the first time in his life NOT dependent on TPN every night.  This means that 3 nights a week we won't have to hook him up to an IV line.... I can barely contain my tears as I write this - this will make such a huge difference to his life and ours.  This will give his liver a break, this will lower risk of infections... the benefits to him will be huge.  

On Tuesday Sam had his CVL rewired.  It took a lot longer than they thought.  They tried going up through his groin/femural artery but both sides are so scarred from previous ops there was no access, so they went in through the neck.  They re-jigged the same line, but as they were transferring him from the operating table to his bed he coughed and moved and his neck wound haemorraghed, so they had to intubate/put him back to sleep and stop the blood flow. So it was around 4 hours from pre-op to post-op and when I went to get him it was the usual 30 minutes of wrestling with him coming off his meds.  They tried different meds this time to see if we can avoid his awfulness post op, but it didn't make any difference.  That night I asked him if he remembered hitting me... he looked at me confused and said, 'but Mummy I love you'.  Thankfully he doesn't remember it.

He was due to have his annual GJ change in a few weeks, so that was done on Thursday to make the most of our time in.  Francis thankfully was with him for that, as I was so tired and not sure I would cope with another wrestling match when I am so physically and mentally tired - Sam is 23 kgs, so when he is aggressive it is a challenge/work out.

I read Jeremiah 32 this morning -  in the midst of people's stubbornness and warnings, there pops up this (v 19 & 20): 'Great are your purposes and mighty are your deeds.  Your eyes are open to the ways of all mankind...'.  This leapt off the page at me - nearly 3 weeks ago we ended up in here and disappointment piled on disappointment as his lungs took a hit, as a random xray showed up something else that we didn't want to know, that his illness slowed down treatment, that problems meant that Sam couldn't get his IV feeds.... they all seemed like problems and disappointments, but when I look back at the big picture, if these obstacles hadn't happened we would not have ever tried Sam without IV feeds and known that he could cope with out them.  I feel so grateful that God sees ALL MANKIND.... all of it is in His hands.  I am so limited by my mind and awareness and lack of intellect and tiredness - He sees me, He sees Sam, He sees the staff here... He see ALL of mankind and his purposes are great.  This has been such a great admission for Sam, for my faith, for hope, for renewed relationships with other parents on the ward.  And yet I don't want to be here.  I want to be home. How much do I miss out on wishing I was in a different situation or space?  How much do I lose out on due to my stubbornness, impatience, trying to control life?
He sleeps so peacefully, always with his hands like this.

'Lord forgive me for thinking I know better than you when it comes to Sam and his care, forgive me for so often wishing I was running someone elses race and not mine.  Thank you that your greatness, purposes and awareness do not fluctuate at all, even when I do.  Thank you for your hope and peace and forgiveness that is new every morning and can not be depleted like my fragile human levels do.'

'Thank you for progress and for this admission, thank you that my girls have had a great week on camp and with friends, thank you that you watch over them too, thank you for Francis that helps keep this all together too and patiently helps me plod on.  Thank you for the many people that have supported us this admission - for Nana that has hung out with Sam in hospital to give me a break, for the ever faithful Ange, for the Cairns family for taking Candace on holiday, for you reading this that care enough to think and pray for us'

Sam still needs a little oxygen at night, so that is keeping us in still.  Last night he was on 1 litre and had a 12 hour oxygen reading test.  Tonight he will have 0.5 l and repeat the test. Then hopefully Monday we can head home, one day short of 3 weeks, having had a bit of an overhaul and with renewed optimism for Sams health and opportunities.

I hope you can see beyond your physical situation and take hope that there is a God of greatness that is aware of it all. X Shirl

Monday, July 6, 2015

Sunday night update

So we both had afternoon Sunday naps today - because we were so tired after Sam woke screaming at 1am with the line in his leg having tissued.  As his central line is waiting to be put back in to the main vein (under GA) he has been using a peripheral line for 24 access for his TPN.  Unfortunately the smaller veins aren't really cut out for TPN and he has been going through one a day.  When they tissue they are incredibly painful and it's also disappointing as it means he needs another line put in.

Last night when he woke he calmed down after about 10 mins with cuddles and after pain relief started to kick in.  At about 2 am a Dr came and tried to put in another line.  It took 2 nurses holding his arm/hand + me restraining him + the Dr trying to put it in.  Sam was not happy and it isn't nice for anyone.  Unfortunately the Dr couldn't get the line in, as his veins are really small/difficult to find and I'm so pleased she decided it wasn't worth trying him again as a pin cushion.  So Sam has been on 24 hour feeds of milk and paedialyte to make sure he gets the right amount of calories and fluid.  All of this is to buy time hoping his lungs will improve enough for a GA. It does mean that his kidneys and gut are working overtime so he needs to have his kidneys drained every 2 hours instead of 4.  The time rolls around very fast and my dreams of lying about reading a book and relaxing have been thwarted by a boy that needs constant care or else play time! His latest game is catching and throwing bee, which he finds hilarious and can last for 30 mins at a time. All good exercise for his upper body and getting his lungs working.  Not so great for me keen to finish my novel!

The good news is that today they weaned him down and he was off oxygen for about 3 hours.  At 2pm when he went back to sleep his lungs also went back to sleep (!) so he needed oxygen again.  He is sleeping now with 1 litre of oxygen, but we are pleased his lungs have definitely improved. The weekend medical team are hoping that he can make a surgical list tomorrow.  I'm not hopeful as nothing has been put in place that would indicate this (no nil by mouth instructions etc), so I'm reckoning on Tuesday at the earliest. Weekends are frustrating as progress as we are in a holding pattern til Monday rolls around.

I leave you with photos of Sam - he looks like such a fraud when he is so happy! The innocence of a child who is just so happy when his blocks fall down..... ah when did I last belly laugh over something so simple?

It is school holidays here in NZ.  Jasmine is off for the week to Camp Raglan Survival Camp - a week of adventure/challenges for 11 - 14 year olds. Candace is on an adventure with her 'adopted' family heading down to Tekapo on a road trip for 2 weeks.  It's so great they both can get away and we are so appreciative of the kindness extended to us which means we can focus on Sam and relax knowing the girls are happy and being kids. 

Nearly 2 weeks into this admission I am getting tired and the busyness of running birthday parties, end of term music performances for the girls on top of sleep deprivation means I am a bit fragile.  Some people comment to me that I should do less - how do you tell your daughter that she can't have her friends around due to her brother being in hospital, or that I haven't got time to make her birthday cake as I'm in hospital?  I don't want her to resent him and I also want her to enjoy her milestones.  I guess it's no different to Mums that stay up to midnight icing birthday cakes - we do it because we love our kids and want them to feel loved and special.  It just takes a bit more planning and time having the kids in 2 different locations and my car looks like a wardrobe.  The other day my friends 15 year old son jumped into my car but I had to move a pair of socks and undies that was sitting on the seat! I had grabbed them from the washing machine on my way to work and was heading straight to Starship after work to sleep the night.... so that was a slightly hilarious/awkward moment, but he took it in his stride as he gets our weird family!

My hopes for this week are that Sam gets his op soon and that the surgeons are able to use the same central line vein and not require more invasive surgery.  I hope that the girls are safe and having special memory moments with their friends.  I hope Francis and I get to see each other and have a proper conversation that involves more than logistics and can enjoy each others company in spite of living in the Starship fish bowl (could be renamed Starfish!) and that I will be able to pause many times each day to remind myself that all of this that seems too big for me is not too big for God who holds us all in the palm of His hands.  I want to be grateful and hopeful, because the alternative isn't very lovely!

I also hope that you reading this have a great week - not maybe in measurable outcomes, but in living life well each day. 
X