Thursday, March 27, 2014

A complex little man!

Well, what a week it has been! Sorry for the silence but the time has been full and the plans have changed so many times I wanted to wait until I had something concrete to write.

So Saturday night was awful after a painful day and there was talk of emergency surgery at mdnight. Following tests/xrays on Sunday, they stopped all feeds into his gut and put his J and G tube on drainage (nothing going in + everthing draining out = less pressure on his tum). This meant that Sam was much happier and clinically well so a rush surgery wasnt needed. He had 4 different bags of fluid going into him to cover his nutrition and fluid needs.
Monday we went to radiology for rectal barium studies - generally unpleasant as the name suggests.
Tuesday and Wed are a bit of a blur of nothingness, waiting for feedback from the dye study and just  hanging with Sam. Wed i did escape and see the girls after school and have dinner at home with Francis and the girls, before heading back in for the night.
Thursday - today. Surgical popped in, then gastro came in. Both have similar ideas of where we are heading but different routes to get there. Basically everyone is happy that the surgery has gone well - it has healed well and there doesnt seem to be any leakage into his torso cavity. They are also happy that the colon is working, albeit sluggishly - sam is soiling between 2 and 4 nappies a day, so this shows that stuff is going through.  They think that a part of the bowel is very narrow which is causing a bottleneck, which he why he blew up and was vomitting after 2 days of being fed milk into his gut. They are hopeful that with time and use, this piece of bowel could stretch and function much better. Tentatively the plan is to give Sam an easy few days over the weekend where nothing is changed. He will have 4 hrs off pumps in the middle of the day when he can run around etc - this too is important for gut motility.

On Monday the next bit of the plan will be revealed, but if Sam remains stable over the weekend we may transfer up two floors to 26b and be under gastro. Gastro would like us to stay in until we have a little milk going in to him. This will be a slow process but a vital one, as TPN is hard on the liver. The other option is that I could take him home for a couple of weeks on total TPN doing gastro aspirites and maintaining fluid replacements, which they are happy to train me in. In one respect it would be great to just get home, but I am conscious that our home not become a hospital and be a haven for the girls.  I guess I am mentally tired after 2.5 weeks of holding my son down for procedures and daily finger pricks, that I just want to be his Mum at home. I know I could learn fluid replacements etc and that there are community nurses that can visit daily, but for today it all seems too much for me to cope with and I want my home to stay our home... I also want Sam to love being at home.
So it could be a long stay ahead, but that's okay. We are very much a strong team - I am so glad that Francis will be here in the weekend and continues to give me a break when he can. We are tag parenting with a very generous showering of practical love from many friends - dinner dropped in last night (homemade butter chicken and banana pizza - amazing!), surrogate netball mum (KC), beds and school lunches for our girls (team Cairns - thanks Em and Isaac for sharing your parents for a bit and to the fun crazy Brits who Jas is mesmerised by your wharf jumping exploits - THANKS). Plus prayers and cares of many......

Slow and steady.....patiently waiting and trusting and hoping for great things.

You can tell we have been in here too long when Sam is singing all the theme tunes of anything ever made by Disney. He also watches tv and then announces that he wants to do whatever it is he has seen, eg , 'I want to go for a ride on a train tomorrow', or 'when I get home i will play hide'n'seek'. Tonight he announed ,'I'm going to be a princess one day', a glance st the tv sees Thomas the tank engine has changed to Sophie the princess!

From me and Sam the sleeping princess, goodnight! X

Sunday, March 23, 2014

Ups and Downs, Highs and Lows

Post Op Sam was doing ok - he pooped a very full nappy on Thursday, which was fabulous.
On Friday he was really pushing but nothing coming out. His milk feeds had been increased to 20 ml/ hr. Friday night was a long night with him constantly vomitting, squirming and with a very large tum and unable to settle. Yesterday was a very long day too, with him needing 6 shots of morphine to help him with the pain. He was given a suppository, but that took 5 hrs to work. All feeds were turned off, but still his tummy grew tighter and rounder. Finally xrays were taken and them the surgeon visited to give him a 'wash out' from below! Just imagine lots of screaming and wrestling whilst I held him in situ. This did relieve a lot of wind and poop. Straight after this new xrays were taken and sadly it showed that the area of concern was still there. He seems to have about a 7 cm piece of bowel that is distended and is at risk of perforating, if it hasnt already. So at midnight lastnight there was talk of emergency surgery right then, but after discussions it was decided to let him rest the night and re assess this morning.

He and I slept 6 hours solid welcomed by both!

This morning he has had xrays again and we are waiting to hear if the surgeon wants Sam to have a dye contrast study in radiology before surgery.

It is all disappointing - Sam is totally over being poked and prodded and is constantly asking to go home. When he is in pain he is particularly aggressive and feisty, but the boy is 4 and he is sore. He is missing his home and his friends at kindergarten. He is missing his sisters and his Dad .... He just wants out.... But I dont think that will be the case for a while... So its a day at a time for us.

Will update once we have more info x

Monday, March 17, 2014

Chocolate, Broccoli and Pizza

The blog has been silent as I've just been too busy then too tired to write.  Sam took a sudden turn for the worse on Friday afternoon, spiking high temperatures.  The team acted quickly, but it meant that he needed a lot of investigations to try and find the source of infection.  His TPN feed was stopped, a peripheral line was put into his foot for maintenance fluid and his post op surgical line in his arm was used for replacement fluids.  His stomach was put on free drainage (picture a tube coming out his stomach with a bag collecting goop).  An abdo xray was ordered at 9 pm, so this involved me holding Sam on his side for 10 mins before the xray - felt like was in a rugby scrum wrestling with an 18kg weight.  Lots of blood tests etc, then after many doctor reviews it was 1am down to xray again for a chest xray.  Anyway it was a long sleepless night, which showed that possibly a small part of his left lung had collapsed post op (it often does) and this could be the source of infection.  He continued with hi-temps (hi-temps = hi vomitting) and a second long night.  After 48 hours of unknown and very little sleep I really hit the wall.  Francis returned to Akld yesterday to be in Starship with Sam and I returned home to hang with Jasmine and get her ready for school camp. We had a really neat night together and she left today.  I quickly popped into school and gave Candace a hug and kiss before school, as I hadn't seen her since Thursday.  I then went home and slept another 4 hours, ontop of the 10 hours I had just had.... so I am almost feeling human again.

Sam has thankfully turned the corner!  His temps are not going as high and he has the glint back in his eye. He is still on regular strong antibiotics to deal to the infection.  His surgery and bowel movements have become secondary to getting him well again and over this speed hump.

At 2 am one morning a new and different Dr came in to examine Sam - she had never met Sam before.  She was asking Sam where it hurt and he was randomly pointing at his chest, his elbow etc... I was concerned that the Dr actually seemed to be believing him, so I interrupted the Dr and said, 'please watch this'.  So I turned to Sam and said, 'Sam what did you have for dinner tonight?'..... He stared straight faced at me and said, 'ummm Broccoli, Chocolate and Pizza!'.  I turned and smiled to the Dr and that simple interaction had her understanding that not all that Sam says is reality!

Francis just called to say that Sams gastro outputs have dropped dramatically (that means instead of vomitting/draining out, they could be going down), which is what we want.  He has also done a couple of smudgey nappies.....

It's been a tough week - tiredness, physical exhaustion from restraining Sam, upsetting watching him struggle, disappointing as we don't see instant results.... but then I've learnt a lot too - patience is something that is definitely needed and I want quick results.... this is going to take time for his bowel to wake up and I am so quick to label everything as a 'good sign' or a 'bad sign'.... where it is just part of a long process.  It's been heart warming and amazing as friends have rallied around the girls and taken them into their homes - both girls have loved where they have been staying and the care and practical support has been amazing.  My dear friend Lynley continues to offer practical nursing help and relief so I can sleep and Sam loves hanging out with her.

The girls have taught Sam a knock knock joke - he doesn't get it, but has started telling the nurses and then wonders why they all laugh!  I'm hoping he will share it with the surgical and gastro consultants, as it is particularly timely!  It goes like this.... 'knock knock', 'who's there', 'Eyep'...... I leave you to finish it off and I hope it brings a smile to you.  We continue to pray that this will be a reality for Sam very soon!

Best wishes

Thursday, March 13, 2014

Post Op

Hi, so Sam had his surgery yesterday morning. It seemed to go well and the surgeons were happy with the join. They did note the distal loop was quite narrow and had an unusually high amount of mucous, which is normal for his condition. Post Op he was his usual iritable self and required oxygen for 12 hours - this took coersion, wrestling, threats, bribes, swaddling and strong tape to keep either the mask or prongs on his face.  He only required a couple of doses of morphine, but is having regular pamol and anti vomitting meds.

Today we were hoping for bottom sounds, but none. Hr has been in pain and irritable and needig to vomit alot. We decided to empty his stomach (easy to do by pulling back a syringe in his G tube). We drew back 340 mls of dark brown goop. An hour later another 130 mls. A surgical review was called as this is not normal.  They felt the stomach contents could have been some old blood from surgery, but also quite faecally. So at 8.30 tonight a portable xray machine came into his room and took some xrays - sounds simple enough, except Sam needed to lie on his side for 10 mins before... So I had a most unpleasant 10 mins holding a screaming writhing 18.5 kg boy. Thankfully he is quick to forgive and forget and a few mins later he calls to me, 'mum i love you'. Such a sweet boy!

There are a few ideas on the table: could be a blockage caused by surgery and the blockage needs cleared by surgery; a section of the bowel has no muscle so movement stops when it gets to this chunk; or it is actually blocked by a pea of hard poop/mucous whih an enema could resolve.

We dont know, tonight they dont know, Sam doesnt know ..... So we sleep tonight praying for God to  do another great work as he knows all.

Sleep well

Wednesday, March 5, 2014

Back Home - will try again next week!

It has been a strange 24 hours but so much has happened and not happened.....

We waited for the phoned call to come from the pre Op team, but by 3.30 it hadn't come.  The surgeon had been in at 7am to see us and let us know we were third on the list, so probably a late morning or early afternoon surgery.  Finally we got word that the surgery couldn't take place today and to hang tight until a plan was made.

The surgeon popped in, so apologetic, yet clearly he had had a very busy day and two surgeries had both been much longer and/or complex than first thought.

I was so aware of several things:
1:  This amazingly skilled surgeon and team had worked a long hard day sharing their skills to help a child.  He came to work hoping to also sort out Sam, but was obviously disappointed he couldn't.
2:  Somewhere today there are two families of special kids that had to sit and wait whilst their loved one was in surgery.  We have been in that place where we thought a surgery would take 4 hours but as the hours passed the 7 hour mark the wait was awful..... That was happening for people today, And as I sat watching my happy healthy boy my heart went out to them and I prayed for these unknown people.... Well unknown to me at least.
3:  I would much rather go home and come back to a well rested surgical team than them squeeze him in at the end of a tiring day.
4:  I didn't have to cook dinner as it was already made - woo hoo!
5:  I had the privilege of a forced day of rest as I sat and drank coffee and read the most amazing book.

Thanks for all the texts, emails and calls of support - God is not limited by our time, so we look forward to trying again next week!

Best wishes

Monday, March 3, 2014

Take time to stop and smell the .........?

It is 5.15 am and I have not been able to sleep since Sam woke at 4 am to vomit.... So After 40 mins of lying wide awake with thoughts flowing through my head I thought I would get up and share them with you.... After quickly adding dates to the Moroccan lamb casserole in the slow cooker (3 nights freezer meals made, tick), making a coffee and spending ten minutes trying to figure out my daughters iPad!

The thoughts going through my head were/are: How did I get poo in Sams ear?, 'why am I so impatient with my girls and have all the time in the hew overlord for Sam?, How do I turn this stupid predictive typing off?, 'why am I so impatient with my girls and have all the time in the world for Sam?, How cute does he look with that plaster on his head?  Now I shall unpack all those comments for you in no particular order.

Yesterday we were having our usual Sunday pancake brunch before we head off to church at 10.30, except this week it was special as we had our fabulous nurse/friend join us.  Sam had sat through about 15 mins of the meal playing with a pancake and jam then got down. We were finishing up when we heard a bang then silence. Jasmine announces Sam had fallen over, so we call out, 'good boy get up, you will be ok' to jolly him along. Jasmine then shouts out, 'no it's bad, there is blood everywhere'. Jasmine is prone to the dramatic so we don't think much of it but take a look.... And she was not overstating it. Poor wee guy had whacked his head on the door and split his forehead.  So our lovely nurse was back on duty, I hugged a screaming fighting boy as she cleaned and bandaged his head up - he looked like a junior All Black prop, but was in no humour to appreciate his good looks. So Francis and Sam had a 5 hour boys bonding session, with the help of Toy Story 2 at Starship yesterday as they glued him together - no stitches, just glue.

The prelude to this incident is that Sam has started 'going to the toilet' and I don't mean just filling his nappy. He sees us interrupting a board game or announcing 'am just going to the toilet', so he too has decided to get in on the  act.  He will be happily playing and then leap up announcing 'I just have to go to the toilet' and will disappear for two minutes.  I have followed him and peaked in to see him just standing in the toilet looking at the walls with a satisfied look on his face - after a couple of minutes he announces he is done and reappears, pleased that he is now like everyone else.  I then announce he needs to wash his hands and we go through that very normal activity, except he does it with such a look of satisfaction and joy on his face.  He just wants to be grown up like all of us!

At these times I stop and marvel at all he takes in and then applies to to his life.  It is amazing he absorbs these basic human activities and assimilates them into his life.  That reality is also terrifying as I wonder what else he is assimilating from watching my life - the times I am impatient or talk rudely to the girls or Francis - is he going to copy these too? It has wakened me up to the responsibility I have and how so often my kids bad traits are because they have learnt them from me...and maybe my impatience with them is really rooted in my disappointment and impatience with myself.  I say sorry to my girls more and more these days... I want them to know I want to be different and better and that I am a work in progress too.

Faecal recycling has gone really well, um... except for last Thursday.  I was pushing the last 30 mls of his liquid poop into the catheter just at that awful pre school chaos time.  'Miss 10' wanted me to put up her hair and 'Miss 12' was asking about sandwich fillings, both at once, and I was finishing off Sams poop.... Not paying full attention to any of the 3 activities I gave the poop a quick push and thought, 'wow that went in easy'.  I turned to see Sam lying like a statue with poop all over His face, his torso, the bed, his beloved bee etc...  Of course the girls were in fits of laughter.  I wanted to be but was actually really stressed as it was all over his precious central line..... So about 40 mins later Sam was sorted, a load of bedding and bee was on a boil wash, Candace had skipped off to school with bad hair and Jasmine had an unexciting honey sandwich!

Each day since then Sam asks me the sweetest questions as I embark on the poop recycling, eg 'are you going to spill it all over me today? Or 'I don't want poo in my ear'..... All said with a voice of apprehension and slight terror on his face!  I say, 'yeah, it's ok, I don't want poo in my ear either.....'

Sam forces us to slow down on so many levels.... He is nearly 5 (grinning again!), yet the activity of mimicking wanting to go to the toilet fills us with delight.  Each time he fills a nappy we stop and applaud and make a big deal - the girls are losing enthusiasm for this however 'Yay' now said with sarcasm and a flat tone!  As I lay here this morning I thought back to Australia when it seemed each time we went to go in the car one of the girls would disappear to the toilet..... My response was less than gracious and was definitely never applauded - instead  it would be a lecture about, 'you have been sitting here for an hour playing and we told you we were leaving promptly and NOW you decide to go...rant rant, blah blah'.  The same activity, yet with one child I am happy to stop and take time out of my day for and the other I am not.... So yesterday I started hamming it up with the girls and telling them how proud I was of them each time they went to the toilet, hi fiving them, applauding and whistling at them over silly things - it was silly, but it made us laugh, and it has reminded me that I need to take time to enjoy their achievements, be more encouraging as they help out, complement them as they persevere with piano practice and love them as they slip and fall on the proverbial toilet door as they dare to try to copy us and grow up.

I haven't found that answer, so am taking back the 'dinosaur' lanyard and hanging it back around my neck, which was removed for a short while after enduring the terrifying Superman Ride at Movie World.... hey ho... when 'Miss 10' wakes up shortly she can show me!

May your week ahead be good... may you not put poo in your ear, may you stop and smell the roses of loved ones and celebrate their successes and not linger on their failings..... aahh, that is my challenge this week.

Much love

Saturday, March 1, 2014

A Big Week Ahead

So we had a fabulous time in Australia . It was very odd being separated  from Sam and it took me a couple of days to not feel like my arm was missing.... But it was lovely to have whole days and whole meals and whole evenings without drains to do and clock watching. Francis and I managed to rise to the challenge of riding even the scariest roller coasters so we could shake off the dinosaur label our girls see hanging around our necks. Bizarrely the first two roller coasters I went on broke down and we had to be rescued from!  The sun shone. The sea was warm, the sand was white and the time with just the four of us felt like a luxurious gift.

I felt totally peaceful that Sam was in great hands- he has about 6 'mums' that love and look after him, but it was a long week for him and we had a few phone calls with him where he was begging us to come home.... I got the biggest cuddles when I got home!

Francis flew from Brisbane to Papua New Guinea and is due home tomorrow, so Sam is very much looking forward to that after missing his dad for two weeks!

Tomorrow is March.... On Tues 4 March Sam and I are checking in to Starship surgical ward ready for major surgery on Wed 5th.  He is having his large bowel connected to his small bowel .... It is huge progress and we are excited about what this could mean for him. For the past few months we have been preparing his large bowel by taking the output from his small bowel (liquid poo) and pushing it in a catheter into the bit of large bowel that protrudes out his tummy. It"s been amazing to see him feel the sensation and push out a prize in his nappy - he is so proud of his new skills and seeing the delight on our faces and the whoops and hollers of congratulations! I am putting around 60 mls in twice  a day, but post surgery all of his feed that goes into his GJ will go through - 800 mls per day. We have been told to expect to be in for a week at least. It will be a huge change for him, a big op and a wound to heal, so we are excited at the progress yet aware it will be another big challenge for this little guy. He is so brave, so sweet and full of  fun, And our hope is that this surgery will improve the quality of his life in a huge way.

We respectfully listen to the risks associated with the surgery and the possible complications then we humbly kneel before God and commit Sam into His care, asking for God to do immeasurably more than we can even dare to dream or hope for.  We pray for the medical teams and surgeons and  are so grateful for their skills and care.  Naturally on one hand we are sad that our precious Sam has to  didn't endure another surgery, yet on the other hand we are totally amazed, thankful and delighted that he has come so far - this is nothing short of miraculous and our hearts are full as we think of the gift of his life - he is four months from turning five.... FIVE... I can't write that without grinning....  And this operation is going to help his body accept more nutrition and open up possibilities of feeding ...  Wow

At bedtime last night as I lay with the girls and did our prayers, we spoke about how God can be just another word for Santa Claus or Online Shopping - our prayers can just be a shopping list or Christmas list of our wants....  Thinking about Sams progress and this coming week has highlighted to me how knowing Jesus opens up a whole dimension to life - a spiritual one where God not only nourishes, teaches, loves and challenges me, but one where I can express my concerns, fears and joys. I can not fathom this journey without either Gods input or His listening ear as my relationship with him gives me an avenue to share the human emotions of thanks and joy, which turn to praise and worship of a loving God.... And nothing seems more real or normal than that.

So as we prepare for the week ahead in practical ways (meals in the freezer, piano practices for girls, more poop recycling etc) my greatest prep is when I lie in bed each morning and say to myself, This is the day that god has made, I will rejoice and be glad in it" - that reality gives me the confidence to face the day!