Monday, November 21, 2016

Bugs gone, new ones come... sigh!

So Sam has had a good week with him getting home on Thursday night with his new port in his chest.  Friday he braved school, but I picked him up early as the nurse was coming to administer his drugs at home at 2.30.  He so loves school, but I am conscious he slots back in having had such big gaps out of his learning and the social side of it. He has mentioned some 'friends' but also some kids that 'laughed at me'.  I think the nature of his fractured world is going to become a larger player in his development, physically, mentally and emotionally. It was sweet to hear the calls from around the play ground and class rooms as I walked him in to his class, after a 4 day absence - students of all ages calling out, 'Hey Sam', 'Hi Sam welcome back' etc - very heart warming.  His school and staff are truly amazing - so understanding of him and his unique needs, both medically and educationally. I don't believe for a second anyone is being mean to him, but I think Sam is starting to realise his differences and this year has been hard for him with so many long breaks away. He mentioned last week that he wanted to go the toilet with the other boys, and not go to his own bathroom.  He so wants to fit in that he is becoming aware that he can't even go and pee with the boys - lots of challenging conversations to come!

Sam had his last nurse visit today, so he had his last IV antibiotic for the urinary tract infection and it all seems clear.  Sadly yesterday he seemed to start a rattly cough, totally out of nowhere.  Last night was tough for him, waking to cough every hour or so.  Today he had a booked appointment with his main Paediatrician, so after a thorough going over on general things, his chest was listened to and he came back with more antibiotics.  We have increased his chest physio to 3 times today and he hasn't had any temperatures or runny noses.  Our instructions are to run the oral antibiotics but if Sams fruity cough hasn't improved within 48 hours, to venture back in to Starship.  Oh how I love that we have Starship and all the skills available, yet don't love the frequency with which we call it home.  I am hoping and praying that we can keep him home.

I have just finished reading a rather alarming article in the NZ Herald titled:

The Big Read: Is the world on the brink of an antibiotic apocalypse? 

It didn't make for happy thoughts, as Sam lurches from one antibiotic to another, all the while becoming resistant to various ones. So I leave my concerns with God and just go about caring for him as best as I can. Quality of life is what matters today... for us all right? I am reading a book on Prayer at the moment - a challenging read as it raises many questions and doesn't have neat little answers. But I have found it comforting as I pray and leave my daily burdens with God, not that answers I want come about or even that things necessarily change, but it puts me back in the right order of things... I am just a frail being on earth for a short time, reliant on God to give me breath each day and the strength to get through it. I am so thankful for the joy that comes with the knowledge of Gods love encompassing and watching me and that it isn't dependent on me being good or clever enough or on external events... so as I wash up bottles and change milk feeds and give meds tonight, I do it with the confidence that our life and times are in His hands.

I've just re-read above and realise it can sound so trite and self-righteous.... I don't mean to.  I guess when life falls apart around you, which it does with surprising speed and frequency in our home, all the fluff and bubbles disappears and the real stuff remains.... and for me and my experience, it's been God and the words in the bible that have rung true, tangible, unwavering and peace giving amidst mess and exhaustion.  It doesn't mean anything has changed or improved in the daily events, but calm and courage that can't be humanly created or explained constantly amaze me.... so I am so very thankful as we head into this Christmas season for Jesus - celebrating God coming to show himself to us in our every day messy lives.

At the paediatricians today, Sam and Dr shared jokes with each other.  Sams was stolen from Zootopia, but then Sam ends it with a slow sloth smile: 
Q: What do you call a 3 humped camel?
A: Pregnant 

Drs joke: (This joke was shared for 2 reasons - Sam loves his bee and we had been talking about toileting/peeing with Sam!)
Q:  Where do Bees go to the toilet? 
A:  The BP Station of course (For those non kiwis, BP is a petrol station chain in NZ... not sure if it world wide.... yeah, jokes are never funny when they have to be explained!).

Nite nite

Tuesday, November 15, 2016

Post Surgery Update

Sam went into theatre about 12:30 and I went down about 2:45 to collect him from post op. He was fine for about 5 mins then he turned into a raving violent biting angry screaming individual. I know its the drugs and normally I am fine, but after a kick to the throat (which hurt), then a really strong bite on my cheek, I found it all too much and sobbed may way along side him as we walked on to the ward. He continued for around an hour and had to be restrained by 2 people. Each time a lull came we would loosen our grasp on his arms, but he would then try to rip out his various medical devices. I  left the room several times and the capable nurses coped so well with him - seriously they do not get paid enough for all they deal with on a daily basis.

Eventually Sam relaxed into a sobbing mess as I cuddled him and reassured him I loved him so much and all would be well - poor wee man, so much to deal with.

The surgery went fine and he has a portacath in his right chest.

He is sitting up playing with trains and watching tv totally oblivious to what went on. I am lying beside him wishing my cup of tea was something stronger!

I think the plan is to maybe get home tomorrow, with him having IV gentamycin to try to kill off this uti.  I need training in how to access and use the port, as this is a new device for him.

As he was in theatre I read the following, which gave me peace and encouragement: Psalm 68:19, 'Praise be to the Lord, to our Saviour, who daily bears our burdens.' I am so glad He can cope with my burdens ... And He can cope with tomorrows too ... Now that is more comforting than the cup of tea I just had!

Sleep well

Sunday, November 13, 2016

Bee Mine!

Today after church Candace, Sam and I (Jaz hit the books as she faces exam week ahead) had lunch with some of our favourite fun people - we distressed our children as we (AKA 'the olds') sung and danced to 80's hits.... then the bee suit was donned for a visit to their bee hives.  Sam didn't quite get the whole kit on, but he was so delighted to wear some of it and then he tested it with his bee and it worked - no stings were felt - eureka, it works!

Sam was tired after a rough night - waking with groin pain and vomiting - Francis was sleeping with him to give me a chance to catch up on sleep, as we are also facing a hospital week ahead (which means not much sleep).

So Sam still has a uti, which has been treated for the past 2.5 weeks at home with 3 different drugs, but it's not clearing.  On Friday I spoke to Starship and after many phone calls and juggling logistics in hospital, Sam needs to be at Starship by 8am tomorrow morning.  The plan is that on Monday he will have some chest ultrasounds, to check out how good his veins are, as he is on the surgical list for Tuesday to get a portacath in.  This is a central venous catheter, but unlike the other IV access lines he has had (CVL or PICC), a portacath is buried under the skin - see below.  Clearly Sam will have to wait a few years for the chest hair and beard... but you get the idea!  The positives with this is that it is covered so the skin can get wet/shower/swim.  The bubble thing is then accessed and he could have IV antibiotics through this.  

Image result for portacath

On Friday we had about 4 plans for different scenarios.  Thankfully 2 of them didn't eventuate through the weekend, so we are down to the last 2 scenarios - hopefully Sam will be reviewed/ultrasound to find line access and we can come home for the night, returning on Tuesday for theatre.  The other option is that they decide Sam needs to be admitted immediately so they can keep an eye on him/treat uti in hospital and surgery on Tuesday.

He hasn't had a portacath before, so I have no idea about post surgery discharge or even how to use it, so I am guessing we will be in hospital for most of the week for healing and training.

I will take my laptop in and update on Sam when he is in theatre..... He is a brave boy, but I wish his body coped with just oral antibiotics. Sadly his little body has been exposed so long he is resistant to many simple ones and is onto the top shelf drugs.

Have a good week.

Thursday, November 10, 2016

UTI - Go Away!!!

We have had too much fun recently with a number of people staying with us. This past weekend we had very special friends from the UK fly in.  Sam managed to understand their gorgeous Scottish accents and it was lovely to see him instantly fall in love with John and Kathy, who have been a very special part of our lives for over 20 years.  They have literally travelled the world to see us, having holidayed with us when we lived in Thailand - the girls were 3 & 5 when they last saw them 10 years ago.  So Sam had never met them in person, but he had talked and skyped with them many times, so it felt like he was meeting old friends.

Sam was very sad on Tuesday when he woke and they weren't here, but they will be back after discovering the beauty of the South Island.  Once Sam gets an idea in his head.. it sticks, really solidly!  So we have a daily countdown for their return!

2 weeks ago Sam went to bed very happy, then woke up about 2 hours later bent over in pain and screaming in pain, with his urine looking like custard. Poor wee boy, the infections come on quick and violently.  He had a grizzly weekend, but once the meds kicked it it seemed to clear.  3 days later Starship decided to change the meds as Sams urine sample showed it could respond to a different drug.  2 days into the new drug and Sam is miserable again - hourly waking in pain through the night etc.  So a quick switch back to the other drug and 2 days later (still showing no signs of improvement) we increase the dose from 1.5 mls - 3.5 mls four times a day.  Sam has been at school this week, but last week he missed 3 days: 2 days due to hospital appointments and 1 day due to uti/pain/miserable. 

So I am a little anxious as I keep an eye on his urine - it is still cloudy - not getting worse, but not clearing ..... I think if it is still cloudy in 48 hours it will be back in to Starship.  If this drug doesn't work, he will need an IV medicine, but he doesn't have IV access anymore.  So the teams will have to toss up whether he gets another PICC or a port (under chest skin IV thing), or just a simple line in a vein.  Oh I am really hoping and praying that his little body gets strong enough to fight this bug and he can stay home and be well and happy.  I will keep you posted!


Thursday, October 27, 2016

Momentus Day!

Sams PICC has not been used for around 4 weeks, but each week I have to pull back the heparin and discard it, flush the line with saline and lock it with strong heparin again.  This is done to keep the line patent.  It started to play up weeks ago and was hit'n'miss if it would draw back.  Well this past week it wouldn't push either.... so it was totally useless.

PICCs are normally a temporary line, but Sam has had it in for nearly 7 months! The risk of infection of a defunct line is quite high, so it needed to come out.

One of the reasons for keeping the PICC was in case he needed IV antibiotics for urinary tract infections.  The last 2 infections (which were 8 weeks apart) have both responded to oral antibiotics.  This is great news and the urologist said that with the bladder having been reduced so significantly, and to have all the pockets/flaps of floppy skin gone, the bacteria should be easier to deal to - and he seems to have been correct!

So I leave you with before and after shots of Sam with two arms - NO line in is arm.  NO lines in his chest, NO lines in his legs..... NO IV line at all!  My cynical side, that has celebrated other medical victories and then Sam has quickly gone down hill, would say don't get too excited.... well you know what, I just blimmen am!  I am going to celebrate and thank God for his goodness in Sams life..... in our lives.... to see the nurse slip this 20 cm 'worm' out of his vein was quite an amazing moment.  To see this little line that has both given him access to medicine and nutrition, and also been a reminder of his condition has gone!  It was so nice tonight to massage cream into his arm to soften the flaky skin which has always had a sterile dressing on it.  

With no line, Sam looks forward to a summer where he can splash in waves, jump in rock pools and not be worried about line infections..... 

Tonight I am so thankful the PICC, and all it represents has gone.... I am so grateful that his little body responded so well to oral antibiotics and I am so thankful that the frequency of his last uti's has dramatically reduced.  So so delighted and I am praying that uti's will continue to diminish....and that we can get enough calories into his body .... so nice to have such a change to a long hard 16 weeks in hospital.

Here is my little rock star getting ready for the home care nurse to do the deed!



Monday, October 24, 2016

Too much fun with Family!

It has been a long weekend in NZ, so Sam and the girls had today off school.  This was made especially sweet as Aunty Jude and cousin Jonathan landed on Thursday evening and were hanging with us until this afternoon.

Sam had never met Jono until Thursday evening.  On Thursday morning Sam was asking about the upcoming guests arrival and asked what Jono was like. I said he had a really deep voice and was really tall..  Sam looked a tad puzzled and then said, 'But will he fit in our house?'.   Phewf... all are relieved he fitted in - although he was given a mere single bed on the first night. Like Sleeping Beauty it didn't bode well for a good night sleep as his feet scrunched up against the end of the bed, so it was remedied for night 2+ as he slept on the floor on a mattress.

Sam is a complex little guy.  His medical issues are fast becoming the minor of his issues as his developmental issues are becoming more pronounced and harder to deal with.  On the first afternoon we went on a walk to the local park and down to the beach.  Sam is nervous and anxious around any animal, as they are unpredictable in their speed and direction of movement.  They also can make sudden loud noises, which freaks him out.  Well, it is no exaggeration to say that 95% of the dozenes of people we encountered were in possession of 1, 2 or even 3 dogs. His obvious concern and anxiousness was very evident.  This fear of sudden loud noises and movement is quite debilitating, yet understandable as he has mobility issues and often is easily knocked over.  Well, it was hard work, but made so much better by the helping hand of Jono and Jaz.

We ventured far and wide as tourists in Auckland - Takapuna, Devonport, One Tree Hill, Cornwall Park, Mission Bay and the Chinese night markets (and that was just day one!).

Some things are just easier with out little brother hanging out, especially one that needs to have 2-3 hourly bladder washouts and to be hooked up to feeds.  So today I left Sam with a friend (& nurse) and took the girls out so they could enjoy an adventure.  Tree Adventures did not disappoint - total adrenaline from the time you climbed the first ladder, to the final flying fox dismount - a great time with the girls and watching them laugh and smile with their crazy cousin!

The week ahead sees us in hospital on Thursday for a respiratory review.  I also will be in touch with Sams Nurse Specialist, as his PICC line is neither drawing back or pushing - so basically is useless and needs to come out...... it's easy enough to do, but need to check with them.  I don't want Sam to miss more school if I can just do it. We shall see.

I leave you with other photos of Sam having a great time being at home and just doing normal life!

A selfie pose with Jono,....

Hanging on a tricycle while the rest of us consume coffee and cake!

But not everyone came... so Sam catted to Uncle Pete on the phone.

A fabulous fun filled few days.... but back to reality and school again. Enjoy your new week. X

Monday, October 17, 2016

Week 2 of school!

Sam was so very excited to have last week at school.  Week one of the last term of 2016.  It all seemed to go well until Thursday night when he woke every hour complaining of a sore willie and crying out in pain begging me to give him a bladder wash out.  Not much sleep for either that night, but I drugged him up with Pamol and sent him to school, as it was Book Week, culminating in fancy dress on the Friday of your favourite book character.  

Historically I have gone to great efforts to deck my kids out in fabulous outfits for school (more about me looking good than them!).... well perhaps I have grown up a tad or perhaps I am just a bit tired - either way I raided my sisters dress up box and told Sam to find an outfit he liked! Lazy Parenting 101 completed!  I had hoped he would go with the 'Where's Wally' outfit or the lion or dog... but it was the Star Wars outfit that won his vote - and thankfully no questions were asked as to what book was he from as that would have received a blank stare - come to think of it he has never seen any of the movies, but it is amazing the influence of playground talk (Star Wars Countdown cards) and older cousins.  I leave you a photo of the non-book Book Character named Sam Davy from Star Wars (& yes the Mother of the child in the Red Cape did good - rock on Little Red!).

I had to be in Starship on Friday morning for a meeting, so I had Sams urine sample in to the lab by 10am. Sam got to school for 8.30am, but by 10.30 the pamol had started to wear off and Francis brought him home. But it meant he got to be a part of the fun and enjoy his week. Thankfully we managed to start oral antibiotics for a uti by 5pm on Friday and within 24 hours he was already feeling a whole lot better.

So he has been back at school today, albeit only for a half day, as he had a dentist appointment at Starship this morning.  Not much to report there as he is so oral averse, the dentist didn't manage to do much, but she did spot he has one more lose tooth, so the tooth fairy is on call.  Next time Sam has a GA, the dentist would like to pop in and give his teeth a good clean and look over.

Tomorrow he will head to school for the morning and then we need to be on the road by 1pm to get to Starship for a psych assessment.  

Next week he has 1 clinics - Respiratory on Thursday.  The following week he has 2 clinics - Gastro on Monday and Psych on Tuesday, but we are trying to get at least 2 clinics on one day.  It seems like a really easy request, but the various consultants work at many hospitals and private practices, so may only be on site at Starship one morning a week.  It does mean that our petrol bill is horrendous, but not much we can do about that - I think Sam is still a bit too little to be pillion on a motorbike!

This week we are very excited to have more family coming to stay - Aunty Jude and Cousin Jono (we don't use these salutations and formalities when generally chatting, but more as way of introduction to you!) - All three kids are very excited, as am I!

Right, off to do antibiotics and then bed - this course is 4 x day for 1 week.... but orals are so much easier to manage than IV's.... and it is very cool he is responding to them!