Milpark Hospital

Well Tuesday was NiQi's first admission to Milpark hospital. One good thing about making the move over from state to private is hopefully there will no longer be any early morning trips to be there at the crack of dawn...something I am definitely not going to miss.

NiQi phoned before we left to check the bed that had been booked for her was still available and after checking and re-checking that she had everything packed, we then managed to leave mid morning. We were both nervous...me because I feel I am no longer in control and NiQi for not knowing what to expect once we were there.

All these years I have been the primary care giver...the one who has made doctor and clinic appointments...the one who has collected scripts and checked that everything is there...the one who has done countless hours of physiotherapy...the one who has gone without sleep when they are sick...the one who has checked IV lines, mixed up anti biotics and put them through...the one who has flushed ports...the one who has spoken up and out for the best that we could get for our children...the one who has protected them from bullies and less sensitive peers and the one who has shed many many tears over the years both in public and privately.  Suddenly I am 'No. 2' and it is the strangest feeling to assume this role. NiQi has grown up and she is the one making the decisions and managing responsibility now.

Years ago when Mark was still alive, lung transplants were very new and the success rate wasn't very high.  Johan and I decided we wouldn't take that risk for our children.  They had by that stage already dealt with so much in their lives and to put them through something of such a huge magnitude, which possibly may fail, was not what we desired for them.  It is now almost 20 years later and things have changed.   Many more patients have had transplants now and have survived.  So when NiQi was 21 and her doctors told her that it was time to think of having a transplant, the decision wasn't ours to make, but hers.  She believed in the possibility of having an extended life, a better life and decided to pursue that possibility.  The road has been long since that initial decision and could possibly have been shorter had we been given proper information right in the beginning.  Nonetheless, God has been gracious in her life and extended the life span of her lungs to far beyond what her doctors predicted.  I believe it is her will to live, her determination to see her decision through and her faith in a God who is greater than man that sees her where she is today.  So much time has passed since then that there have been many who have asked with wonder whether it is still going ahead....The answer is 'yes'...she may have outlived her prognosis but what you don't see inside of her is a pair of lungs that have done their job, got her this far but need to be replaced.  She can walk short distances without oxygen and smile and laugh and be happy but check her saturation levels and you may be surprized to learn that they are at 86%.....her heart needs to work harder to get enough oxygen around her body which increases her heart rate to 111.  Still the improvement all round has been sufficient for the doctors to feel the urgency isn't as dire as it once was....

Now she is at Milpark, she is under the pulmonologist who will eventually do a transplant on her.  She will meet the entire team and they will decide together whether and when to list her.  When the time is right, it will happen and in the mean time life carries on as it has for the last 23 years....

 The hospital pharmacy just off the reception area and opposite the cafeteria

 Being admitted

 In her isolation room checking to see if there is a plug point to charge her cell phone and toplug in her laptop.  Each room has a television fitted into the ceiling and free wifi.  Masks must be worn and hands must be sanitized before entering her room

 answering the duty sister's questions

 Deciding on her menu...every day she is given a sheet with breakfast, lunch and supper listed.  She can order what she wants to eat as well as has the privilege of asking for double portions just because she has CF

 Marking down her choices for supper and the following days meals

 A 50ml vial of blood is drawn up for all the different blood tests she will be having

 Dispensing the blood into the vials

4 bottles for sputum samples to be tested

NiQi - now and what's next

Clinic days arrive all too quickly in my mind, especially for us who go every month, and Wednesday was 'Clinic Day' again.  It's getting colder and the days are shorter which means that it isn't any fun to be up so early when we could be lying in bed an extra hour or so.  It seems that I have only just got into the rhythm of waking at 4.30 and that is only because I do all the prep work for the next morning the night before.  Last month I could still do it because Johan was giving his birds a rest from breeding so he had enough time to do 'my' chores before he went off to work.  Sadly, he has since put down more than 30 pairs of budgies to breed so that in itself is about an hours work that has to be done.  So it was back to waking and getting up at 3 that morning....Wouldn't you know it, even though I went to bed early we were awake for much of the night with a dog barking constantly, somewhere way off in the distance.  They say sound travels at night but that night I wish it hadn't traveled quite so far...

Before we left I managed to do all but feed the horses, chickens and peafowl - but I had their food ready so all Johan had to do was give it to them.  NiQi arrived in the house at about 4.30, all bleary eyed and cold - dressed for a snowfall with boots and all.  Whatever time she woke, I don't know but she did all her 'nebs' and physio beforehand - wise girl that she is because she knows that by doing all that it will help her stats for her lung function!!!!

We were on our way at 5, in the dark and were no sooner off our dirt roads and onto the R101 and there was someone on my tail with 'brights' shining in my rear view mirror....why people drive like that I don't know but the lights on some peoples cars are blinding whether you have them in front of you or behind you.  After a while I managed to pull over enough for him to pass by me which made it easier for me to see and the rest of the journey was fairly good.  At first we thought it might be as long as our first trip along the R101...remember that one...because there was a lot more traffic on the road than last month, however once we passed Centurion we left much of it behind.  There is still one really chaotic intersection near the Builders Warehouse and Dischem Warehouse and to be honest I was just immensely happy to once again make it through there without a ding, a scratch or shattered nerves.  It is a massive intersection, one that you go over half way, stop for the traffic proceeding the other way, before then making your way over the rest of the intersection.  There was a taxi that pushed its way beside me, so I thought okay if he goes I will go because then he will be hit first...lol...once past that though the rest of the trip was fine and can you believe it we arrived just after 7am!!!!  SOOOOOO early, we have never been that early before, but rather that than late.

NiQi was second in the queue although she landed up going in third - but that's another story.  Finally when she went in to see her doctor it was almost 11.  As you can imagine her lung function was down again as is her weight but we knew it probably would be.  She had 10 days of Ciprobay in this last month which alleviated some of the symptoms but hasn't really helped her. So she's going in for IV treatment in just over a weeks time, but not to Charlotte Maxeke this time.  Her exclusion period is over... praise the Lord she has seen this year through,can you believe it?  Her doctor is now sending a referral through to the specialist pulmonologist who she saw in 2012.  Whether NiQi sees him or his partner we will still find out, but we have entered a new phase of her life.  From 2011 to now, who would ever have thought she would still be around to tell the tale?  Who would have thought her lung function could improve from 17% to 30%?  Who would have thought her weight would now be 52 kg?  God certainly did and does know how much longer she has, whether with the lungs she has now or a pair of new lungs.  While she is in for treatment, she will have what is called 'a work-over' by the transplant team which includes amongst others a psychologist.  They will each of them present a report at the next transplant team meeting which will possibly be in the next two months.  Her doctor told us the team meet once a quarter and they have just recently met together, so we will have to wait a bit...but waiting for this is such a short time compared to the time it has taken us to get where we are now.   Her current doctor said that it will be her job to convince the rest of the team that NiQi needs a transplant.  Her improvement over the last 20 months has been good but the damage has been done and there has been a slow spiraling down in the last two months which could continue, or not, who knows.  Not only that though, her bubbly, happy, ever fun loving personality gives a false impression to those who don't know her or rarely see her as to how she really is. Her doctor has written to her medical aid requesting and motivating for an upgrade of her nebulizer as well as including on her script a drug called Pulmozyme (Dnase)...you can Google it...Mark had Pulmozyme, he was one of the patients given it to use when it was still in it's trial stages and it worked well for him.  Sadly it came at a stage of his life where any real good it may do, was not enough, his lungs were already so badly damaged...NiQi's doctor has warned her that it doesn't help everyone, but we're going to give it a bash.  Why hasn't she had it before now?  It is such an expensive product that State hospitals do not feel they can warrant putting it onto their list of medications because so few would benefit from using it.  Even medical aids want motivations from doctors before they will consider approving the use of it.  So this is where we are now, 'Onward and Upward' as she has stated herself....

Wedding Invite has arrived

Earlier in the year I posted about my niece's 'save the date' card arriving and the eager anticipation of attending another family wedding.  This will be the third of the next generation on my side of the family, the first being Matthew to Jess, the second of my niece (Sara's elder daughter), Paige to Garreth and now in just a few weeks time it will be the next niece in line (Simon's daughter), Samantha to Pieter.

More than ever I am just so looking forward to our family being together again as it has been too long since the last time....I am big on family and I have seen over the years how families grow separated and can be destroyed over huge distances apart.  Families are relationships that have to be worked on, just like friendships and at times it can be hard work but most times it is easy and very well worth it.

So late last week I went to our post box and there was our invitation waiting for us....

When Johan came home he had a good read of it noting the time as well as where it will be held....scrutinized the map, LOL and then we sat and worked out our 'game plan'.  You have to understand that this is an exercise that needs planning - cos we are not 'peoples' with normal lives - HAHA.  Listed on the back of the map are a number of places to stay in and around Parys for those that want to stay over, however we haven't even considered it as an option - not only because we can't afford to stay over (even in the cheap places), but because we have other responsibilities here at home.  So we worked out that if the wedding is at 3 - which it is - then we need to leave home at about 11.30, or at the very latest 12 midday.  It's at least a 2 hour drive from home to Parys if we take the N1 - which we probably will, even though it means all those extra tolls, GRRRRR.... and then it's maybe an extra half hour further on through Parys to the wedding venue.  We don't want to arrive late though and would rather have time when we arrive to powder our noses - HAHA - before we find a seat.  Leaving at that time of the day means that we will be feeding our brood a midday snack - which they will love - rather than an evening meal....missing out on that will leave them sorely disappointed, because as you know, animals are creatures of habit and if they know that they usually get fed at a certain time, then beside the fact that they had an early munch, guaranteed they will be waiting expectantly.  So once we are seated, and expectantly waiting to see the bride walk in  on the arm of her dad, we anticipate the ceremony may be over an hour or so after that (making it 4 pm).  The reception is is at the venue, so I guess they will do photo's until just before dark before starting with that (maybe 6 pm by now).....then comes food - I hope - because by then I will be starving (Oh yes and my mum said we will have to eat our lunchtime 'sarmies' in the car on the way to the wedding so we don't have to stop along the way - I must remember to pack Johan's pelican bib - family joke - in case he messes), and speeches.  We may just get in a dance or two before we have to start making our way back home again, at about 21.30 / 22.00....which will leave me a few hours sleep before starting my morning chores, because after all life goes on and the exciting and even the unexpected fit in to the rest of our lives, like a key in a keyhole...

NiQi is feeling pressured as she wants to look for an outfit to wear. Given that she has lost 5 kg in the last 2 months, she wants something that will fit and not hang like a rag, and it must keep her warm so she doesn't get sick, and (goodness another 'and'), she has a hospital stay coming up in just over a week, so there is very little time!!!!

Aaaah, such excitement I can hardly wait....

Born Free but Loving Life as it is...

How many times have we had some of our birds flying away over the years...too many times to count that is for sure...but I think since we have been here it has been far more often than ever before. 

I have to admit though that we are truly blessed when it comes to them returning and we being able to catch them again.  It is usually from the second day that we notice them moving closer and I am sure it is because they know that it is here that they are assured of a meal.  On more than one occasion the door to the end Love Bird cage...the one with the most birds in as it is a communal cage where they grow and/or rest before being put down to breed...has not been securely latched.  When this happens it doesn't take much of a wind to loosen it and have the door spring open, giving the birds inside an opportunity for a 'great escape'.  Every time, we have managed to catch all but one or two as they slowly but surely came home.

The day before we went away, you may remember me telling you that our ringnecks had flown away. The morning we left, Johan had already caught 2 and in the following few days, after coaching from Johan, Mariana and Bryan were able to catch another 5, leaving just one that more than likely was left to the elements and the natural order of life.

Just before this last weekend, one of our Timneys made his way out of his cage and I only noticed he was gone in the late afternoon when I went out to do the afternoon rounds.  I must say my faith was lacking here as I did not think that he would return, so I am humbled by the fact that our Lord graciously sent him flying back...not the next day mind you but the day after.  I was busy with the early morning feeding on Saturday, when I thought I heard him nearby.  I scanned the trees around the house and close to the fence and there I saw him perched in a silver oak.  I was just so excited and immediately started talking to him, loud enough for him to hear....although I am sure he saw me long before I saw him.  I carried on with my chores, keeping an eye open all the time, as I noticed him coming closer and closer.  Suddenly he swooped down from the tree he was in towards me and as he did, Todd spotted him too.  He jumped up in the air, snapping at his tail, while poor Mansen tried to take flight again towards the front of the house.  By this time both Barney and Purdey had also seen him and were running and chasing him much faster than I could run.  All the while I kept repeating, 'NO' over and over and in louder monotones, hoping that for once our ill disciplined dogs would listen to me.  Well they did, and as Purdey was about to pounce on him, I reached him with NiQi close behind, and scooped him up in my arms.  As I cradled him, walking with him back towards his open cage I could feel his heart pounding.  Safely home, he certainly looks none the worse for wear and was only to happy to have a bowl of food which included a pile of peanuts....

Update After Clinic

So we went to clinic on the 5th and NiQi blogged about that so I thought there was no need for me to do one too, but here is an update post clinic.

Ummmmmmmmm..........

Contrary to what she thought and remembered after her treatment and release at the end of March, she both lost weight and her lung function was down.  The weight loss is mainly due to her not having her night feeds, and to date the machine she was using has still not been replaced.  It has been more than a month now and the kilos are starting to fall at a rapid rate.  The days she has been in to the shop haven't helped either, for if she stays past lunch time she doesn't eat until she comes home which makes her feel full at supper time, meaning she eats less...sigh.  It is a real problem and she has to approach it head on.  She needs to eat throughout the day, which is difficult when serving customers and working with staff that don't always eat between breakfast and supper....anyway she is working on a solution, one of which is to rather be given things to do at home, where she can peck at food all through the day.  It sounds like she doesn't eat, but she does - and often - but definitely not enough to replace the energy she expends.  I can see that clothes that have been packed away in suitcases because they were too small  are now making an appearance again and belts are being worn to keep things up.  At clinic she was down two kilos...now it is more...not sure yet how much as she is too scared to get on the scale.

Her lung function, which she thought had remained constant, was actually down from 33% to 31%.  The coughing has increased both through the night and during the day with higher production levels of mucus in her lungs.  Thick, sticky, green stuff is making itself at home in her lungs, making her more tired and generally lethargic.  Look at her breathing when you talk to her and hear the crackles as she breathes and you will know that she is battling a bit at the moment...BUT...asks her how she is feeling and all smiles, she will tell you she is good, nodding her head as she says it, not convincing herself, but convincing you...

Other than that, she is happy...with a boyfriend, friends, family and two new little kittens who arrived with dad on Thursday when he came home from work...they are her newest delight and subjects for her photography - already spoiled rotten with new feeding bowls, toys and a scratching post.

What more can she ask for than anything that keeps her happy....

 Proof indeed that she does eat...and often

 Enjoying company...

 Camera and tripod in hand after photographing the horses...yet again

Resting with her oxygen

Releasing of Pigeons

Being home has made me realize more than ever that I am a 'homebody' and I love to have familiar things around me.  Our animals are an extension of our children, we worry about them when we are not around, or if they become ill...we play with them and make sure they are comfortable and not getting cold...lol

At the same time, I know that many of what we have around us are not really pets, but a way for us to gain an income.  It just helps that we are able to enjoy everything about them at the same time.  Having said that, it is really the birds - the animals that give us the most work - that I am referring to in this case.  I cannot believe that this month it is a year since Oom Gert passed away, how time has flown by (no pun intended)...after he died Johan purchased some bird cages from his wife and with them, she gave him some fantail pigeons and African collared doves.  It was the fantails that kept laying eggs and producing chicks that I blogged about last year, and after some time, Johan passed them over to a friend of his who was keen to keep them.  I was sad to see them go, but it's not a good idea to keep pigeons and doves in close proximity to budgies and parrots because of the different diseases they carry...so off they went.  The doves stayed though and the No. 1 reason they did, was because Johan loves the cooing sound they make, especially in the early hours of the morning.

While we were away, Johan did some thinking about the birds and decided, as much as he loves them, it is time to get rid of them too.  So a couple of days after returning, he opened the cage door to release them...and they stayed...lol

We now have a flight of doves that keep hanging around....so I keep feeding them...and they are not flying away.  Where they go during the day I don't know but it can't be too far away, because come late afternoon I see them returning one by one.  They sit on top of the suspended cages, perch on the gate, waddle on the ground...waiting for the food that is coming their way.  I guess that in this case we all win - Johan hears their cooing, I see their beauty and they feel they have a place to hang around at...a place to call home...

 I turned a bin upside down to fill with seed for them...

 Sitting on the gate

Barney watching, and hoping for one to come within his reach

 On top of the cage

On an old frame

Last Day - Market Day

Well it's certainly taken me a while to 'relive' our break away, but in a way that is a good thing because it gives me a chance to remember what a great time we had...so this is the last post and it will be short...but I have lots of photos...lol

The one thing I did want to do before leaving Bloemfontein was to go to the Saturday market as I remember how much I enjoyed it last year when we were there and quite frankly it is the best market I have ever been to.  It is well organized, well set out and has a variety of stands - most of which are crafts and home made products and the rest a mix of fresh produce and food stalls.  It is refreshing not to see cheap imported stuff for a change and maybe that is one of the other reasons I enjoy this market so much.

So yes we...and by we I mean Daleen, NiQi and I...did go to the market and I thoroughly enjoyed myself, looking at all the stalls, getting ideas, buying gifts...AND did I have fun looking through all the book tables.  I picked up a few classics, a couple of biographies and a book for Johan - who doesn't read, but I told him he can  look at the pictures - on growing strawberries.  I had lots of careful re-packing to do when I arrived back, but managed with ease in the end.  We definitely arrived home with more than we went and surely that's a good sign of having had a good time...

 Mixed medium - fabrics, knitting and crochet together to make blankets and cushions

 I was fascinated by the street names, which happen to be the same as those in the area we live.  Having these markers makes it easy to locate a stall at a later time if need be...

 By the time we were leaving, stall holders were packing up already