Tuesday, August 4, 2015

Crazy busy.....

So I feel like I haven't stopped running since we got home last week..... sorting drugs/ his prescriptions of liquid feeds, IVN deliveries, sorting out stoma bag orders and remembering to fit in a morning and evening nebuliser....

Jasmine is also really sick with a suspected Strep throat, so she has been throwing high 39 + temps since Saturday and needing some TLC and is very miserable......... so that is a concern......

It is 11:30pm and I feel like a scene out of a 'Middle' episode - I am on the couch in the dark, with piles of washing on either side, 2 doors leaning against the couch and a toilet and shower door also for decoration!  If police walked in they may think we have been ransacked and the burglars have left a mess on their way out.... but it's just us living!

So, I could tidy the mess, or I could update the blog.... which this week I actually feel like I really really want to as it is HPN Awareness Week.

Check out this link below - very short, cute and delightful.

https://www.youtube.com/watch?v=HGHWRj5RwlA

Sam is doing great with being a 'fire breathing dragon'.  He used to roar as the smoke comes out around the nebuliser mask and we would all scream and run and pretend to hide and he'd laugh and repeat..... now he roars as the smoke comes out and we all look blankly at him and carry on with our day.... and he just keeps roaring in the hope we will react. 1 week in and we can't be bothered, but I figure with the roaring and the big deep breaths sucking in getting ready to roar, that the stuff has no choice but to get down deep into the lungs to help heal them.

He has not had a great week at school - a number of Time Outs and stubborn moments - always takes him a bit to get back into routine, especially after 6 weeks out.... so he has been a little sad and frustrated with life.  This afternoon he announced he was angry and he was 'gonna bust stuff by throwing my cars' - he is so cute even when a monster.  He didn't bust anything cos all I have to say is that 'we will be really disappointed if you do that' and he is sobbing in tears begging forgiveness, so he is fragile as he settles back into family life and school routine.

Tomorrow we have to do an overnight room air only oxygen reading test, Thursday our home care nurse is popping in with supplies and to check up on us.  Friday Sam has cross country at school and he is determined that we all be there to watch him 'playing cross country'.....  Friday for me I simply hope that the toilet is in the bathroom and not my lounge and we get to relax in a tidy ordered home and that our renovation doesn't drag into another week!!!  Please no.....

I hope your week is going well. 
X Shirl

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.