New Home...Old Electrics!!!

Saturday came and went amidst a flurry of 4 X 4's, many amazing friends who lifted, scrubbed, moved, fed, drove, packed and unpacked our stuff. It was a great team effort and we are SO grateful to them all for helping out....and for our lovely cousins who had the girls for the weekend so we could get on and pack without 2 bored little girls driving me nuts.

The house will be perfect for us, now that we have had 4 dodgey plugs changed, an illegal fitting in the bathroom removed and the dead oven revived so the bbq can get a rest. We are plodding through unpacking boxes and gradually changing the house into our home.

Sam is very happy in his new surroundings and the girls are delighted to have a bigger room in which to play.

I am writing this back at our old home, as we still have bits and pieces here to move over and I needed to put the rubbish out tonight. This home has many special memories for us - arriving in a state of crises and unknown, thinking we were carrying a baby that would not survive, sharing many happy, tearful, tired and joyful times with many of our families and friends. This home and the beautiful surroundings, the kindness of the trustees that so graciously let us stay here at short notice for a year and the joy of having Samuel here with us means it will always have a very special place in our hearts.

Will email a real blog with more about Sam once our internet is up and running at our new home.

Sleep well. X

NEWSFLASH!

Results just in - Sam DOESN'T have Cystic Fibrosis! Tears of relief and joy all round here! Thank you Lord!

X S

The day before tomorrow!

Boxes abound, no where to sit and I pick up the key to our new home this morning, ready for the big shift tomorrow... so it's all go and we're all very excited. Girls are getting into a routine at school and Francis is enjoying being back in the land of the employed.

Yesterday Sam had his sweat test and hopefully we will hear today what the results are.... or if we haven't heard by Tuesday we are to call. Sam wasn't too impressed with the first stage of the test where they put 2 wet towlettes on his arm, which are then covered with metallic electrodes and little shocks are delivered for 5 minutes. This is to stimulate the sweat glands - it stimulated Sam's tear ducts very well and he screamed for the duration. Then they removed the electrodes, wiped the area and taped on dry blotting paper. Then I had to wrap him up warm to get him sweaty for 30 minutes. It was a really hot muggy day - I was in a t-shirt and Sam was in a little padded polar fleece hoodie, with socks on! But the cocoon affect suited him and he nodded off to sleep. 30 mins later the blotting paper was removed and weighed, confirming they had enough of the concentrated sweat to analyse.

So will let everyone know when we know.... now I'm off to put pots in boxes.

X S

Sweat Test Tomorrow

'Starship' just called saying there had been a cancellation so now there was a slot for Sam to come in and do his 'sweat test', testing for Cystic Fibrosis... tomorrow! I'm a bit apprehensive - really want it done so we can get to the bottom of his breathing difficulties, but there is a remote chance he may have it...and I just don't know how I will be with that result as the implications are huge.

The house contents are slowly and steadily migrating into boxes around each room and our rubbish bin is overflowing - I do love a good clean-out!

Lord please help Sam tomorrow as he sweats and is uncomfortable....and help the medical team in their diagnosis...and for us to have peace with whatever that will be.

X Shirley

More tests....

On Thursday I took Sam to Starship for a respiratory consultation, armed with the oximeter tests from the previous 2 nights (1 with oxygen assistance and 1 without). The common thought amongst the doctors had been that due to extra pressure on his diaphram in-utero because of his huge bladder and kidneys his lungs just need a bit of time to develop. Well Sam is now 8 months old and it was disappointing to hear that clinically they aren't sure why his lungs don't seem to be developing - if anything the doctor felt that his breathing results may have been slightly down on the last test in December.

It seems that Sam can hold his own at around the mid-90's but he randomly de-sats for longer than normal periods of time to much lower than safe levels. He also has a higher than normal Co2 blood reading, which means his lungs aren't breathing out efficiently.

So a list of tests was discussed (as lung issues aren't typically associated with MMIHS), that they want to carry out to start eliminating other potential causes in the hope of finding the actual one. Tests for cystic fibrosis, tests on his upper airway, further immunology tests, CAT scan of his lungs and putting a scope down his lungs to view/get a biopsy were all discussed. I also took Sam for a chest x-ray. As he is 'well' it was decided to see what his lungs are like 'normally' - he's had many chest x-rays, but only when very unwell.

I would be lying if I said I didn't leave feeling deflated. It was a good consultation with open, honest and gentle dialogue with a lovely doctor.... but the implications of the various 'labels' of problems I heard made my mind whirl into overdrive.... but the reality of having to pick up Candace from gymnastics and get the girls home and fed/bath/bed routine before doing Sam's TPN distracted me enough to remain calm.

We do want to get to the bottom of his breathing issues so we are confident we are doing everything we can to give Sam the best quality of life.

Sam in his lovely way managed to grin through the whole consultation, cried in the x-ray as I forced his arms above his head and held him in position, but was grinning at the radiographer 2 minutes later - He is so lovely.

Last night we had a great night with a sleep over here with Grandad and Nana and 3 cousins - Joshua, Nathan & James for our regular movie dinner.... I can hear hushed whispers and feet next door (they were all warned that no-one was to be seen before 7.30!) so had better go and sort Sam out before hungry kids arrive. No photos this blog - no idea where the camera is!

Walk a day in another mans shoes

Last night at 9pm I hooked the oxygen probe onto Sam's big toe and set the oximeter machine rolling - it monitors oxygen levels in the blood - 100% being normal, with the machine set to alarm at 84% or less. Last night I was to turn his oxygen off completely and do the test with 'room air'.... and the experiment seemed to go really well! When we tried this in hospital on 23 December within 3 minutes the machine was beeping and his levels consistently dropped for an hour that we had to put him back on oxygen and claim defeat. Well last night he had about 3 hours before the machine alarmed, and then it only alarmed every 2nd hour after that! Tonight I have to put the prongs back on him and will repeat the test but on .25 l of oxygen.

It was so lovely to watch him sleeping and I found myself sitting and smiling at his sweet face unobscured by tapes.....then holding back tears.... then weeping with admiration at all Sam has put up with and thanks to God that Sam is part of our family. As I pondered Sam's journey it struck me that I have never walked in his shoes or could fathom what his life is like..... so at 4am this morning as I lay awake I got up and put Sam's nasal prongs on.... not on Sam... ON ME! And my reaction surprised me. Done out of curiosity, I never realised it would have the profound impact on me that it did. I put them over my ears, 'at' my nose (he has infant prongs which don't fit me) then tightened it around the back of my neck, then cut and put the tape on my cheeks. It felt weird, not sore in anyway, but definitely inconvenient. I decided to remove one tape just by pulling it off, which stung a little (but that is on my tough skin so would be sorer on Sams baby skin), then I used 'remove' which is a hospital supplied adhesive remover to get the other tape off - it gets nail polish off (um...so I've heard!) so it is pretty stinky and potent stuff. Having that smell right next to my nose was unpleasant and the residue of tapes and the 'remove' was like having slime on my cheek....... Sam has his tapes changed anywhere from 3 to 6 times a day, depending on how many times he scratches them off as he is so irritated by them and his skin shows the effects of 8 months of nasal prongs.

As I sat with the prongs on and stared at my sleeping boy with his clear face I was overcome with a tenderness that I hadn't known for a while. To keep functioning to care for him I guess I become mechanical and almost professional in the tasks, which I don't actually think is a bad thing or nothing would get done!. But this morning I allowed myself the time to stop and think about what Sam had to endure ..... at my hands..... and I felt a piece of my hard crusty heart melt away.... and it felt so good to weep, not as a 'care-giver' but as his mother, with admiration and sorrow for all he has to endure.

I can't walk in Sam's shoes, but I hope having done this will help me care more sensitively when I have to do 'things' to him. I hope this means I will be less impatient with the old person driving 10 kms below the speed limit, who may have lost confidence due to sore arthritic hands. I hope this means I will be less judgemental of the grunting shop assistant who just may be the sole exhausted breadwinner for their family where unemployment is rife. I've never walked in their shoes, but today I pray that as I limp along in mine I will know more grace and kindness for others limping along in theirs.

'When I pray, you answer me; you encourage me by giving me the strength I need.' Psalm 138 v 3

It doesn't rain, it pours!

I'm not feeling very motivated tonight, but thought it was time I update you on Sam...and us... We (Davy girls) had a fantastic week down south with Grandma & my family and the girls especially loved doing fun things with their many cousins that they hardly knew: waterslides, discovery walks, playing with loads of different pets, sleep overs etc. We got back a week ago (Monday night) and Francis left at Tuesday lunchtime for Bangkok, after a final job interview in the morning. So there wasn't much time to catch up and a few tears from the girls who had missed their Daddy and realised he was going back to be in Laos where the many friends they have are still sadly missed. But with Wednesday the excitement of the first day back at school for the year was enough to distract them from their absent Dad.

Francis has had time in Bangkok and Laos tying up details with his last job and we were delighted when he found out last week he has a job to come back to! It's really perfect timing and a job he is looking forward to getting his teeth into at World Vision NZ. He returns on the 14th, starts work on the 17th and then we move house on the 20th! So my task list is rather long starting with things we need to buy to furnish a house - washing machine, fridge/freezer etc and start packing up all our accumulated 'stuff' from our lovely little home here.

BUT this is a blog about Sam and he hardly features - even today the kids were playing and rushing about on the water slide, I was on the computer researching the best buys for various household items and he just lay gurgling, pretty much ignored on the couch! He continues to be easy going, with the odd patch of grumpy with incoming teeth/stomach cramps and vomiting, which returns to easy going as soon as he is relieved.

Tomorrow an oximeter machine is being delivered from the hospital, so I can do 2 nights of recordings of his breathing, so we have up-to-date info for his respiratory consultation on Thursday. We're really hoping it will show his lungs have developed enough to wean him off oxygen, atleast in the day, to give his face/nose a break from the nasal prongs, which cause him endless irritation. Today the physio popped in to give me some more exercises to help him develop some more tone.

Sam was 8 months old on the 6th Feb and weighs in at 7kgs. Friday we visited the hospital for his monthly blood & urine tests, but I don't have the results yet.

So we have a busy couple of weeks ahead, but are so delighted that we have somewhere to move to that is close to the girls school & Starship, has a big back yard and that Francis has a job to pay the rent! Thank you Lord for sorting out all the details.