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


Monday, June 29, 2015

On the improve!

It's Monday night and I am at home with the girls and Francis is doing 'boy time' in Starship. 

Today Sam improved dramatically and is now on 1 litre of oxygen.  He is back on the ward and has had physio input, so he is having to puff and blow on a pipe sitting in water with soap - we call it the car wash and as he keeps blowing the bubbles spout out the top onto his cars.  It tires him out, but it causes him to cough and his chest is clearing.

Unfortunately one of his xrays didn't just show that he had pockets of pneumonia, but that his central line that is embedded in his chest and through which he receives his nutrition has moved!  So instead of it going into his main artery just above his heart it seems to have migrated and is in a smaller vein in the other direction.  It could have been like this for months, but as they know about it the can not use it.  So he has a temporary peripheral line in his arm and he having 24 hour feeds through his arm (can't run it at the higher rate/volume as when in the big artery).  The central line in his chest needs surgery to move it back but they can't do this until his chest is clear.  So it is a bit of a waiting game.

Jas turns 14 on Thursday and she has already figured out that it will be a split birthday, so I will be with Sam tomorrow night so Francis can catch up on sleep and I get to be home Wednesday night so I can wake up and do birthday with my big girl - I gave the girls the choice and there answer involved eye rolling and comments about Dad not doing balloons and glitter and party decor as well as me....so although she is turning 14, still at that age where she wants to do party girl things.  The girls miss Sam hugely and Jas is disappointed Sam and Dad won't be here on Thursday morning.... but it is what it is and the birthday will still happen....

Right, off to make the most of a pump free, nurse free, alarm free, oxygen hissing free sleep!
Next blog I will tell you some of Sams very funny classic comments during this admission and have photos. 

Friday, June 26, 2015

A crazy 24 hrs

I was going to upload photos and write a witty post tonight. Unfortunately I am writing to say that Sa is now in ICU.  2 days ago he started wheezing and had a high temp. At midnight I started having that gut feeling that it was serious and at 1:30 I scraped the ice from the windscreen and we drove to Starship. He had 24 hours with hourly ventolin and a chest xray showed some patches. Sam was happy enough. Today his breathing became even more laboured and at 2pm he started on oxygen/nasal prongs. The physio came and worked with him but still he got worse. A full review was ordered at 10 and we started on back to back nebulisers. Every 15 mins.... After an hr of this he wasnt improving so ICU were called. They reviewed him and Sam is now in ICU. He isnt critical but he needs a higher level of care and is now in the right place if he continues to deteriorate. They have just started him on a magnesium infusion and IV subutimol. He is working hard to breath but is very resistant to interventions and he is just plain exhausted after 48 hrs of broken sleep. As we were transferring down Sam asked me to 'call Daddy to tell him', but at 2:30 am I didnt think that was necessary! However I did think of the people who will be awake right now reading this who could join me in praying for his protection, strength and healing.

I am weary of body but not of heart. This is Sams first admission in 5 months which is amazing. Clearly we wish he was home but I am peaceful he is having the best care he could have right now and am so grateful to the myriad of people working with him.

I have a 30 min window now before they want to attempt changing him to hi-flow oxygen and another nebuliser, so a power nap is in order.

X

Wednesday, April 29, 2015

We have a weird clothes line!

It was a long weekend here last week and as I headed back to work someone asked me what I had gotten up to.... so I flicked through my phone for photos to help jog my memory.... so with the help of these I will do the blog tonight to illustrate just a 'normal' kind of weekend.

Photo One:
A Family get together and  an impromptu 'massage train' was started with a genuine ache and a helping Auntie... as you can see, it was impromptu and participant heights not considered.  But that didn't seem to bother Sam who joined on in and we weren't sure if Uncle Eddie got pick pocketted or a bottom massage!  This photo just shows Sam as he is - full of joy and not wanting to miss out on anything.

Photo Two:

Just a normal day at home catching up on household chores and the usual washing... although our washing is truly bizarre.  I think Sam's washing is probably the dullest of jobs that I have to do three times a week - washing out and sterilising bile bags (he uses 3 each night - 2 collect urine and 1 collects stomach juices), cleaning GJ connectors with a knitting needle (they don't come with the knitting needle but had to figure out how to get them clean) and various containers.  I took this photo as I was in the garden and looked up and it hit me how weird the washing line is compared to my neighbours.

FYI, Sams leg ultrasound exam has all come back fine.  His legs are fine, although yesterday they were green as he found a felt tip pen when I wasn't looking and in the flash of an eye he resembled 'The Hulk'.

I was talking to our community nurse and wondering if we shouldn't be giving Sam some milk via his GJ tube during the day.  He is not concentrating well at school, especially in the afternoon.  It dawned on me, that unlike those of us that eat, he has no extra nutrients or calories going in to his body from 7am when I hook him off until 6 at night when I hook him back up..... so this is something we need to look at so we can see how it will work in practice.

Friday is Sams first 'mufti-day' at school and the theme is 'Animals', so he is going to go as a shark, as he has a shark dressing gown that he loves.  So that was easy - none of this up til 2am creating some paper mache wonder like with the girls - boys seem a little more straight forward - I can do a dressing gown.  I will wow you with his cuteness next blog.

Friday is also the day that Francis comes home so we are looking forward to that very much.  Sam has been pretty good this 2 weeks, inspite of missing his Dad, but daily skype chats makes his absence not as hard as previously.  X

Friday, April 24, 2015

'Is it morning yet?'

'No it's 5am, Go BACK to SLEEP!'.  This has been how my day has started every morning this week. After a 2 week break Sam is so excited to be back at school.  He wakes around 5 calling for me to get him up so he can get ready, I shout back at him from my bed to go back to sleep because it's still night time and dark.....'hmphf' he groans and silence for about another 10 minutes and the conversation is repeated, several times until I give in around 6:30 when I need to get up anyway.  I am so delighted he loves school so much.  I don't think it's the academics or stimulating mind discoveries, but it's being Mr Social and running with his mates at morning tea and lunch time.

Last weekend I took him to a friends 5th birthday party.  It was a big, delightful and well organised party, but I struggled as I watched him amongst his peers and his differences seemed so very huge.  He wasn't able to keep up with them running around and playing tag and he got quite scared/anxious with nearly tumbling over, so he stepped away.  Many of the games were around food but he did take part a little bit.  He loved balancing 'coal' on a shovel and moving it from 'train to train' - yes it was a Thomas the Tank Engine party.  I don't think Sam was upset about any of it, but I found it really hard watching him struggling. I admire him so much for all he is, but my heart hurt for him as the things he can't do seemed to be amplified amongst his peers.  I'm not wallowing in pity, but am conscious that he may become aware of differences soon.... or maybe he wont.... maybe these concerns are mine to carry as a mother and Sam will just carry on being a part of his friends lives not bothered by differences, but joined by their friendship.  At school and with family everyone is aware and looks out for him but this setting was full of unaware strangers which added another dynamic of vulnerability .. and frankly I don't like that emotion very much!.  There is something much more lovely about familiar.... but I know Sam needs to be vulnerable to grow and adapt and enjoy life and I will just have to pull up my big girl pants and get on with it.


Yesterday Sam had an outing to Middlemore Hospital for an ultrasound.  He has varicose veins appearing in his legs and they want to rule out DVTs and just to check circulation and cause.  That was an hour of jelly pushing on his legs/groin and he coped so well with it.  We will await a full report from sonographers to Sams Dr so not much to report, although they commented that some veins were small.

Quotes from Sam to make you smile:

1.  I was telling the kids that Francis had to spend another night in LA as the plane broke down.  Sam pipes up, 'Did Dad call the AA to get the plane fixed?'

2.  Francis is in Switzerland for work.  At 4 am this morning, 'Mum Mum come quick.... I miss Dad, I need to you to comfort me!'.  It must be said I didn't comfort him, but gave him a quick cuddle, assured him he would survive and begged him to please go back to sleep!

I leave you with a cute photo of Sam on the phone to his Dad... he loves telling him all about his day  - today they did the letter O, had school assembly 'which was boring!' but he got to run on the deck with his friends.
This chair makes him look so little!

Monday, April 13, 2015

Did you want Full Cream, Trim, Left or Right urine with that?

Ok, so I'm really hoping Francis is paying attention when he grabs the milk for his morning coffee! Check out the photo - even for us this is a new level of weird!


For the last 24 hours we have been collecting Sam's urine in these special bottles - one is his left kidney and one is his right - all labelled and tagged when I picked them up from Middlemore Hospital on Friday night with a chemical and we've been adding Sam's urine to it.  They need to be refrigerated until they are dropped in to the lab, which will happen when we head to Starship at 10 this morning.  As weird as it is, it is also fascinating and has been cool to see my daughters figure out that actually the science they are learning at school has practical application.  The contents of these bottles will be checked for volume and also levels of various minerals.  Hopefully the info gleaned from this experiment will help the Drs figure out what has caused his renal calculi (aka kidney stone).  It could be something as simple as too much calcium in his TPN, which they could change or fix with medication.  So in two hours we will be on the road to Starship.... with a trip via Columbus Coffee for a coffee!

Yesterday I saw unconditional love and I post a photo of it below:




Sams sees past the red, past the groaning as I stretch out my muscles, past the sweat and just came and gave me the biggest kiss/hug ever..... funnily, he was the only one in the family that was able to be snapped doing this! I'm guessing it's just a matter of time before he too starts rating the outside as more important than the inside, so I'll just enjoy it whilst I can!

This morning I read of unconditional love: Psalm 139, 17 - 19, 'How precious are your thoughts about me, O God!  They are innumerable!  I can't even count them; they outnumber the grains of saind! And when I wake up in the morning you are still with me!  So I can't guarantee that all things will go my way today, but knowing that I wake up with the God of the universe having me in his sights, floods me with confidence, peace and hope for the day ahead.

Right, off to do my morning run before getting ready for Starship.... although I just want to kind of loiter about the kitchen and see how Francis copes with making his coffee this morning! 

Have a great day!

Thursday, April 9, 2015

School's Out.... Running's In!

With the Easter School Holidays upon us I have a moment to breath and update.  

Last term finished with a super-dooper-fabulously-awesome bang!  It was the last morning of school and Sam took a bite from his biscuit (aka cookie).  Such an iddy biddy little action that reduced me to tears.  His carer rushed over to tell me.  The kids were all sitting with their lunch boxes open and eating -  Sam just picked up his biscuit and copied them!  He had the piece in his mouth and he just sat their frozen for about a minute looking dumb-struck.  After a bit, he mumbled to Ange, 'I don't know what to do, can you take it out?'. So Ange fished out the soggy remnants.  After school I was asking Sam what it felt like to 'eat'. He said, 'I can't do it, I don't know how'.  So I showed him how to chew and moved his jaw about.  The next morning the first thing that he said when he woke up was, 'I am NOT going to eat today... hmmpff!', with arms folded across his chest!  So although it was not truly eating, it was truly a major step in the life of Sam.  We had been told from other families with children learning to eat, that it was the positive peer pressure that inspired them to do it - no amount of specialist feeding programmes or parental encouragement did the trick, it was watching others eat and feeling like they were missing out that made the difference.

So it was a fabulous end to a brilliant Term One of Sam's school career.... and just so you can all share the joy - I even took a pic of his biscuit! 



I am working on the idea that although he is nearly 6, when it comes to food he really is a baby, so we are starting to give him pureed apple etc to see if he will start to swallow that.... we are hoping once he figures that out chewing may come next.

The thing is that we don't know if food will actually exit his stomach and into the intestine, which is why his milk feed goes into this Jejunum and not his stomach - even the milk wasn't exiting properly. But if it encourages normal human interaction (and so much of lifes celebrations are done around food), it will be worth it. 

With no school, comes free time.  Time free from school, but we have had a few hospital appointments, monthly bloods/urine samples etc.  Sam has just gotten over another nasty urinary tract infection, which saw him on strong antibiotics again.  On Saturday he has an optometrist appointment, Monday a gastroenterology review.  We saw Sam's lead paediatrician last week and he has referred Sam to a genetics consultant and also for an ultrasound.  There has been some recent research showing positive signs that the gene has been identified for Sam's rare condition, which has implications on knowledge for him and the girls.  The ultrasound referral is due to him having quite puffy legs with an increasing amount of varicose veins.  This is unusual in a child and could be due to pressure on some veins in the abdomen - hopefully an ultrasound can find the culprit.

But with free time, I've had time to dream..... and with every dream there is an element of impossibility..... so with my rose coloured spectacles and time to dream, I have signed up to do the Auckland Half Marathon again.  It's been two years since I last ran half marathons. Last year was a hard year with Sam having around 6 months in Starship and with tiredness my only dream was of sleeping...... even this dream seemed to escape me so cream buns and sugar drinks helped to keep me awake - no surprise I have put on 10kgs.  So with new resolve I have decided that I need a goal and I have committed to run and fundraise atleast $2000 for Starship Childrens Hospital.  This year two of my sister'n'laws (& anyone else that wants to!) are going to join me and we aim to do the hard yards in order to help raise funds to help the many thousands of kids that find their way to Starship each year.  I do not love running, but I know I am healthier when I do and that pushing myself out of my comfort zone is also a good discipline for me.  I can always find many reasons not to train, but once I make it public I don't want to let myself down and I want to reach my fundraising goal as I am so grateful for the care Sam has received and want others to benefit.

I have been slack updating the blog - I get tired of my own voice and the dullness of what I have to say (another uti, more abx, few nights in hospital etc...) gets repetitive.  Sometimes it's actually quite depressing and upsetting for me to formulate the sentences as I put Sam's life in print.... so I have kept quiet for longer periods to help me cope.... but with my new goal, new training regimen (ahem.... A training regimen) I promise shorter more regular updates, hopefully with humourous antedotes and something that can crack a smile or two for you.

I leave with happy thoughts as last month I escaped to Perth for 4 nights to stay with my brother and his darling family. It was such a great escape - loved every minute of it, neat to hang with my new nephew, discover Perth and the surroundings and hang with my fun family..... ah, it was bliss, most definitely too short, but still worth while.

I leave you with a photo of Francis and Sam hanging out in my absence!