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! 

Tuesday, October 11, 2016

Haircut, Home and Holidays!

Sam had a great week at home, during which it was school holidays and his cousins came to stay!

Sam isn't a very physical kid - I don't blame him, he has had tubes yanked out of him and at times of wrestling with his older sisters his 'poobag' has gone AWOL and the ensuing mess was foul.... so all of these extra attachments and the lessons from what happens when they go wrong, leaves Sam slightly reserved.  Well, to break that cycle, it seems throwing in a slightly older cousin that he is desperate to keep up with and hey presto, a 3 km walk is totally possible!  

It was such a fun few days with the cousins dancing to you tube clips on TV, heading up to the local flying fox, walking down to the beach, movies at Sylvia Park, Musical Statues and Hide'n'seek.  Sam laughed and giggled his way through the days, which was so fabulous considering how many solitary days he has spent quietly isolated in his hospital room this year.  So we had a fabulous week with Sam at home.

A haircut, or more accurately a trip to the Barber with Dad and he still has some curls left - looking good Sam!

This week he has been so happy to be back at school.  Today he had a clinic appointment at Starship and he has a couple each week for the next 3 weeks, so he will miss some school, but nothing compared to being a resident of the ship!

It is 'Book Week' at school, so tomorrow I will be on the scrounge from all and sundry that have successfully negotiated a book character dress up as I'm feeling a tad unmotivated to whip up a 'Cat in the Hat', which is what Sam is talking about.....  I will post a pic on Friday night to see what he managed to go as.

It is so so nice to have Sam sleeping happily next door in his room.  Every night before bed he asks for his bible story and then we pray and ask Jesus to help keep infections away and to keep him well so he can be at home and school...... that would be fab.

Sleep well. X