Tuesday, April 15, 2014

Ohhh Poo!

I arrived home two weeks ago to our kitchen table laden with all things poo - a poo cake, chocolate covered licorice droppings, chocolate biscuits, choc sauce, chocolate cup cakes with flies on etc et al... in celebration of Sams new pooping status.  Created by a caring, fun and lovely bunch of friends that have supported and prayed for Sam and us through the years.

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The week at home was a challenge as Sam would not/could not pass any wind or poop when he was awake.  He would go to kindergarten and charge around at home with the girls like usual, but with a big barrel tum.  When he was relaxed during sleep was the only time he would poop.  He would wake distressed as it would have filled his nappy, shot up his back and he would be lying wet and dirty.  Due to having a CVL line and 2 renal drains, having liquid poop on him was not ideal.  So there were plenty of 2 am bed and boy change after a quick bed bath... all this being done with a half sleepy boy that just wanted to be dry and the light off now!  This would happen once or twice a night... that is until 2 night ago when he woke having not pooped at all.  We had a clinic appointment at Starship anyway, so we headed in.  As I pulled in to the car park Sam vomited blood!  It was dark brown old blood - not fresh red, but still it was alarming.  At this point I figured that our 30 min appointment would turn into a full blown admission.  As we waited for our clinic he continued vomiting blood.

So the consultant agreed that something was amiss for things to be coming up north rather than heading south, so we were sent to the Childrens Emergency Department to be admitted.  At this point I found myself overwhelmed.  I think it was the combination of the possibility that Sams bowel is not functioning well, tiredness and the frustration of having to be sent back to step one for an admission. As the nurse asked me in triage for Sams medical history and why we had come in today I stared at her and said, 'My son has gastrointestinal failure, damaged kidneys and 17 other things wrong with him'.  I explained to her that it is insane and heartless to have to make parents state the awful condition their child has, again and again and again..... she explained that the information is in the system but it's only accessible after the patient has been booked in.  Being a systems organised kind of person (my house doesn't count!) it doesn't make sense on any level to me that medical personnel recreate the wheel when a simple IT solution may be all that is needed.  There is something intensely upsetting having to think through, formulate, then hear yourself explain your sons awful medical condition.  I do think the system could be improved, but as I write this, maybe I'm just trying to pin my living grief on something, when the reality is that no matter the system the underlying sadness is always there ready to rare its head when a set back sets in.

Anyway, after the tears and setting us in to our room in CED we went for two lots of xrays, blood tests and urine samples set off.  We got up to the ward and after surgical and gastro pokes and prods Sam had his G tube put on free drainage.  The outputs had turned now to lime green (bile).  Before we went home after Sams surgery he was losing 120 mls in 24 hours - Sam lost over 600 in 12 hour period overnight.  The good news is that Sam pooped over night again (300 ml) and he has also done a wee poop again tonight - so things are still going through, but not fast enough and something is up. The plan is that maybe tomorrow we might start him on 5ml milk/hr to see what happens.  Hopefully tomorrow or Friday he will head back to radiology for a contrast study, this time with the contrast going in his stomach and watching it go down so the teams can really see what is happening.

I leave you with 2 humorous tales - for it is not just Sam that requires medicine and we all know that laughter is a good dose.

Laugh 1: Yesterday as we waited to be checked out the 'tea lady' asked me for my drink order.  I asked for a strong coffee with milk.  I watched her make it and was surprised as I saw her putting heaps of milk in it.  She stirred it and passed it to me and said, 'now, would you like a drink too?'  There was only Sam and I in the room.  Out of habit I said, 'Oh, Sam doesn't eat or drink food'', then I thought, 'wait a minute - he's 4..... what 4 year old drinks coffee?'.... at that point I got the giggles and said I would be fine drinking my sons milky coffee.

Laugh 2:  Sams surgical wound looked a bit red and angry last week.  I had a scheduled home care nurse visit who was also concerned and suggested it needing looked at.  I let my fingers do the walking and took a photo on my iphone and emailed it through to Starship.  This is a practice I have been using to save unnecessary trips or I can get a solution to a quick and easy problem with the team 'seeing' Sam without seeing him in person.  I have sent through all sorts of photos recently - pooey nappies, urine specimens, vomit photos etc.   Now, our girls use iPads at school and we have linked their accounts to our email account (which shows on my phone), so we can guide and help them in the dangerous land of internet.  In my total ignorance of technology, yet facade of responsible parenting, imagine my surprise when Candace storms in the door recently after school, mortified that photos of Sams nappies, bile bags, poop and wounds are juxtaposed with her happy school camp shots for all her friends to see!  I thought that was pretty funny - I don't think Candace shared the humour and just rolled her eyes and shook her head in disgust at my computer illiteracy.

Tonight Sam is sleeping well beside me.  We are still hoping and praying that his bowel will wake up, that any adhesions will melt away, that the muscles in his gut will get stronger and push the wind and nutrients through his little body.

As ever we are so grateful for the support and care - Aunty S and Uncle G have had the girls this week unexpectedly, my kitchen was cleaned and tidied beyond recognition whilst in hospital yesterday and we look forward to Francis returning from the UK on Thursday...... It is looking like we could be in over Easter. In the words of our daughter Jasmine when aged 5....'I don't get why a rabbit is carrying a basket of eggs - they're mammals so they don't lay eggs. I reckon someone made it up just to sell chocolate'.  May we see past the celebration of chocolate and Easter egg hunts and revel  in the deep reality of a God that is looking for us....not because He doesn't know where we are, but because He knows where we are.  And He promises to pick us up and hold on to us when we allow......

Happy Easter
X Shirl

Tuesday, April 1, 2014

Home!

Just a quick note to say we got home .... 3 weeks after we went in. Sam still has a long way to go, but general consensus is that it's going to be a really slow process of increasing his feeds.... He is clinically well so we have escaped home for a couple of weeks of normal life before heading back in to try and increase his feeds again.  So he is now only on 5ml/hr x 20 hrs and back to 7 days full TPN. Part of his bowel is very narrow, but the teams are hopeful that with time, a little milk and gastric juices flowing through it could stretch and develop.

So we are adjusting back to life at home and he is very excited about going to kindergarten tomorrow!

X Shirl

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
Shirley

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
S

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