Quick Update

It's Saturday morning and we're really trying to break the back of moving into our house, so we are hiring a trailer, picking up a couch, moving a bed into another room, emptying boxes from another etc.... so hoping that by the end of the day we will feel like we're more settled.

Sam had a surgical review on Wed and it was all good news. It seems from the ultrasound scan of the previous week, that his kidneys look slightly better than the last scan in November. So that's really encouraging. All his numbers are in the right levels, so although kidneys are damaged, they are functioning well - again, brilliant news. We are to stop catherterising his vesicostomy, as he seems to be peeing more out his penis and the surgeon is happy for the this surgical hole to close naturally and to see if his penis/bladder copes with it. The ureterostomy (where his left kidney drains from) will still function as previously, but we are to lessen the times in the day that we drain it by 1... so we're only draining it at 8am, 1pm, 5pm and then at 8/9pm and putting in an overnight drain. The surgeon said that he just wants Sam to get bigger and stronger before surgical reviews are to be considered... so in 6 months Sam will have another ultrasound and consult...with surgical alternatives to be discussed then. 'Yes honey.... I'll be right with you.... no that box is rubbish....'

Sam is back to normal and happy although a new abnormality has arisen that we are having to adjust to - He's sleeping through all night! The last 2 nights he didn't wake, but I did anyway! I was up 3 times the first night to check on him as it's just so unusual and I woke in a panic thinking he had stopped breathing! Last night I only woke twice.... I'm hoping I'll soon adjust to this new phase of his life! 'No that box goes in the kitchen!'

So it's been a good few days with positive news. On Monday morning I'm taking Sam back to 26B for 2 nights. He is to undergo 2 procedures under general anaesthetic - flexible bronchoscopy and a CT scan of his lungs... so they will take biopsy of his lungs and fluids in the first procedure and then get a thorough look at his lungs to try and figure out what's going on. He is also to have a cardiac review to see what's going on with his heart and at some stage will fit in a barium swallow study, to see if he is refluxing fluid into his lungs. There is something bearable about entering hospital for set procedures when Sam is well - we just hope and pray he doesn't pick up a bug whilst he's in there. 'What? No that's winter clothes...'

Ok, I'm stalling facing the boxes.... just wanted to touch base and thank God for the progress Sam has made and for a good end of the week..... alright Francis I'm coming!

X

NMS - Neurotic Mum Syndrome

Well Sam & I arrived home at 12noon today.... he's still a bit wheezy and snotty, but they are happy that it is bronchiolitis and as it's viral they wouldn't treat it with medicine, but would just watch him....... and we can do that at home. The chest x-ray taken on Sunday night showed that the pneumonia had cleared up and this admission was all about his upper bronchials! I could have come home yesterday, and was told it was my call and, 'if you get worried or he worsens just bring him back in'. There is no way I was going home in case we had to come back.... as every time we need to come to hospital we have to go through the CED (Children's Emergency Department). The nurse triages Sam, then a Dr sees Sam, then they decide whether to admit him or not and then we wait for the Starship Dr to come down to admit him to Starship. So far on our previous 4 CED admissions this has taken between 6 & 8 hours in total.... so you can see why I'm not going to 'just pop back'.

When in CED (Children's Emergency Dept) this Sunday I found it quite distressing - I don't normally, but I was tired having not caught up on sleep from the previous weeks admission/lack of sleep. Also I found it harrowing having to answer the same repetitive questions multiple times. I know normally people don't regularly attend CED, so the questions would be relevant, but seriously, it is not possible for me to have created any more older siblings for Sam than the current 2 he had 5 days ago! So there are the 'roll my eyes, can't believe you're asking me this daft question again' type questions.... then there are the medical questions. Dr A pops in and starts asking all the questions that I'm sure he could find out the answers to on the computer. I have to list all Sam's med's and doses, his medical history etc etc. At least Dr A was honest and said he'd never heard of MMIHS, but then he's intrigued and asking all sorts of other medical questions, ending with the one that I find really distressing, 'So what's his long term outlook?'. Dr A leaves after 20 mins and then a couple of hours later Dr B arrives to ask all the same questions... he too doesn't appear to know anything about Sam or his condition and ends with the same distressing questions, 'So what's the prognosis for Sam?'. At this point, I start crying and he starts writing notes, probably about how mum isn't coping etc etc... then he leaves. He comes back in with his social worker hat on, 'So how are things at home?'. At this point I explain that no-one has done anything wrong, and I'm not having a breakdown and my husband isn't beating me, but I am purely upset because I am my son's mother and although he is an intriguing medical case for you all, I find it deeply upsetting to have to verbalise that my son has a deadly chronic condition that sees 95% of kids dead before they are 2. I explain that I am tired of having to educate the medical fraternity... have you heard of Google?

Seriously I'm intrigued as to why they write so many notes, when it seems the next person doesn't read them. What's the point? Oh, then I get up to the ward and the nurse who is checking me in starts asking me the same questions! I know I'm ranting and I have a bee in my bonnet, but it's tiring having to juggle and think through meals for the kids, postpone the carers, phone the TPN delivery guy to change delivery details etc, etc, when being admitted..... do I really have to explain 3 times, EVERY time Sam is admitted that he has 2 sisters, aged 8 & 6 and he is on the following medicines blah blah... in my opinion not only is it a complete inefficient way of working, but it's distressing having to verbalise how awful Sam's health is....

So there - you all copped my rant! Oh I feel so much better.... I know nothing has changed and it will be the same the next time we have to go in (groan), but for now, right this minute, I feel slightly happier! I hope I haven't ruined all your days!

Off to curl up on the couch with my lovely girls and read a book, throw some taters in a pot, kiss my husband and get Sam's tpn ready.

Love to all and thanks again for praying for Sam.

One newly diagnosed sufferer of newly created said syndrome: NMS

Back to hospital

Today is my Dad's 80th birthday, and our family are going out to Auckland's Skytower buffet restaurant to celebrate......without Shirley. This afternoon, we phoned Children's Emergency Department at Starship hospital as Samuel's breathing seemed to be getting more laboured and 'train-like' with all the fluid in his upper respiratory tract. And today marked the end of his course of antibiotics but it seemed clear he wasn't ready to come off them but rather had got worse since returning home last Tuesday. So Shirley took him back in this afternoon for a review and, sure enough, they want to admit him overnight to find out why he's still struggling. He'll be having a chest x-ray to see if the Pneumonia has responded to the antibiotics, so we'll let you know more in the next few days.

Pneumonia....but home!

Medical consensus is that Sam has pneumonia, but he has been responding so well to his I.V. antibiotics that they agreed to change him to oral antibiotics so that we could take him home. The change in antibiotic delivery was trialled yesterday to show us if that would work with Sam.... and it did.... so we arrived home around 3pm today, which is great news as he can as easily recuperate here as in hospital.

Pneumonia can be either viral or bacterial and is hard to find the exact cause.... so they treat it with antibiotics anyway. It may be that as he has fluids on his lungs (due to have further examinations in next couple of weeks to find out what/why) this gunge got infected... but we will never really know.

Sam's face always is dry and irritates him due to tapes. So we have been on a constant mission to find creams that can help alleviate this for him..... well today in hospital after applying 2 creams (prescribed by my G.P. 5 days ago and used without any problems) Sam had a reaction and his face went all red and welts over his face and neck. He was scratching himself til he drew blood so we quickly wiped his face with water to wipe off what may have caused it...and watched him closely as we weren't sure his tongue or something internal may react. 2 hours later he was back to normal. But it can be frustrating as Drs can completely seemingly contradict each other. Sometimes Doctor 'A' speaks with such authority and assuredness.... that when Doctor 'B' comes along, equally as assured of their logic, who do I believe? And I'm just mum trying to claw my way through the bog of conflicting logic?! We are surely learning that medicine isn't as much of a 'science' as first perceived! There are just so many variants depending on patient, age, conditions, previous meds etc etc.... So I came back with all the potions (some which Dr A wanted me to use and some which Dr B wanted, which Dr A didn't) and will try to get my head around it tomorrow - after a hot shower and a good sleep in my bed.

We are so grateful Sam has responded quickly and well - thank you Lord!

Sleep well - I will!

Shirley's Birthday ends in hospital

Saturday was Shirley's birthday (no not the big one - but almost), and once we'd got Samuel disconnected from his TPN and his oxygen, milk pump, and various medical supplies all packed in the car, we headed off to Auckland Zoo for the day. I guess we've been spoilt living overseas in that we've been to some great zoos, San Diego, London, Bangkok, so we were expecting a few more animals than we saw at Auckland Zoo. We had to make do with a photo of an elephant as there was only one live elephant in the enclosure! But it was just great to get out together and celebrate Shirley's birthday doing something different to unpacking boxes and setting up home. A friend of Shirley's who lives just around the corner baked a birthday cake and our two families with a total of 8 children had our first party in our new home.

No sooner had we cleared up the mess and were about to go to bed, we noticed Samuel wasn't settling down to sleep but was increasingly hot and distressed. We thought it might be teething but he normally sleeps really well before midnight, and he was more whimpering than crying so we knew something wasn't right. About 1am Shirley phoned the Children's Emergency Department and was advised to bring him in, and by the time he arrived he was looking very off-colour which they soon discovered was because he was down to 80% oxygen saturation so they quickly increased his oxygen levels from 0.25 - 1 ml. It wasn't until about 6am before Shirley and Samuel were transferred from the Emergency department to Ward 25B - a new ward for us but our traditional 'home' of 26B was full up. The chest x-ray showed more fluid on his lungs, so they started him on IV antibiotics straight away in the hope of treating the infection before it spread any further. He hardly slept through the night and was unsettled much of the morning, but seemed to start to respond to the antibiotics in the afternoon. Shirley just phoned around 9pm to say he was fast asleep, and I'm sure she soon will be too.

Mum has come to the rescue yet again, and will help look after the girls before / after school while I'm at work. If his temperature doesn't return to normal soon, then they may need to keep him in for 5 - 7 days and we have to wait and see how this unexpected trip to hospital will affect the many tests that he had planned for the next few weeks. Some good news though -his blood tests taken early this morning show his creatinine (kidney function) is down to 22 and his bilirubin (liver function) is down to 17, both well within the normal range. I think it's the first time both organs have tested within the normal range so we're thrilled to see how far he's come from the fist 3 - 4 months when both were well over 100.

Hopefully back soon with news that Samuel's on the mend. Thanks for your continued prayers.

March Medical Mayhem!

Well after Sam's last sudden admission to hospital with his dis-lodged PICC line, our mailbox has been a flurry of envelopes and our phone has been ringing hot with numerous follow-up appointments. Thanks to our fabulous nurse specialist many of the appointments have now been co-ordinated, so we don't have all separate appointments. Our next 2 weeks look a little like this:

March 19: Barium Swallow Test (to determine flow of oral fluids)

Renal Ultrasound

March 24: Gastro monthly review

Surgical review

March 29 & 30: Admitted overnight to Starship for CT chest and bronchoscopy.

March ?: Elective surgery to change Sam's PICC line!

After chatting with the surgeon and gastro specialist it was felt that now Sam is much more active and alert, having a PICC in his arm was a concern - it moved once and there is no guarantee that it won't move again, which is potentially very serious. So hopefully in the next couple of weeks Sam will have a new PICC put into his chest. I wish he didn't have to go through more procedures, but we'd rather do an elective rather an emergency procedure.

This week I took Sam to visit his G.P. at our local medical clinic as Sam seems to have developed a fungal infection on his face that was spreading up his forehead and was itchy and uncomfortable and not clearing up with the other potions we had been trying. And thankfully the 2 new potions seem to be doing the trick. Sam also has just finished a different course of anti-biotics for another UTI (Urinary tract infection). It will be interesting to see how his kidneys are, as he's had many UTI's since his last ultrasound 4 months ago. We hope and pray that they have been protected and even miraculously improved!

Sam's last chest x-ray suggests he may have pulmonary hypertension and has been referred back to the cardiology department. When he was born Sam had heart surgery due to large PDA, but he also had 3 other issues with his heart that weren't considered serious and in a 'normal' baby would develop and heal over time..... but it may be that as Sam is anything but 'normal' that these issues are still relevant and affecting bloodflow and therefore his breathing.

But as proven from the photos, Sam continues to be so happy and his eyelashes are growing well and the girls are loving school.... so we plod on. Tomorrow we are celebrating my twin's birthday, so we are having a special family day and going to the Zoo which we're all really looking forward to!.

Thanks for your ongoing interest, love and prayers for our special man and all the best for a great weekend which ever continent you are!

X Shirl

Successful procedure - Happy 9 month birthday Samuel

This is just a very quick note as we still don't have internet at home, hopefully one more week.

All went well with Samuel's trip to theatre. The anaethetist managed to manipulate the PICC line back into position rather than having to use another vein, which is great because it gives him more time using this perfectly good vein to get his TPN. So he was discharged the same day following the procedure and now we're all home again as a family and everything is back to normal, well, 'normal' for us that is.

We'll be back next week with more photos of our growing boy who is 9 months old today!

In theatre as I write

Sam is now in theatre, where hopefully they can re-position the PICC line (he currently has) back into the right artery. If they can't they will have to put a new PICC in his other arm, which means the vein he is now using (which has the migrated PICC in) would be defunct. It would be great if they can make the current PICC work, as each vein is vital for him.

We had an ok night in Starship even though Sam was clearly getting cranky as has been nil-by-mouth since 2am due to impending surgery.

Praying for skill and care for the surgical team and peace for Sam as he comes around from his surgery.... and looking forward to having Francis home.

X Shirl

Readmitted - PICC line No. 3

This blog is coming to you from Melbourne, where I'm attending a one-week training at World Vision's head office. Given the size of WV in Australia (500 in this office alone!), this is a great opportunity to learn from their experienced and sizeable programmes team and the visiting trainers from the Global Center team as I still try to get my head around the complexity of working for the largest humanitarian agency in the world. I must say I do prefer our NZ office of 100 or so staff, just feels more homely and less of a corporate giant.

You haven't heard from us for a while now because we're still waiting for our internet connection to be transferred to our new property, so apologies if you feel a bit in the dark on the latest news about Samuel. It may be another week or so yet before we're connected so communication will be a little infrequent until then. Samuel's coped well with the change to his new home and it's a much better set-up now that he has his own bedroom, all wooden floorboards throughout so easier to keep clean, and an air circulation system between the roof and living areas to prevent mould and reduce humidity - which has helped his breathing. The boxes have slowly been unpacked and the day before I left we went out shopping for bedroom furniture, the girls are loving our large private back yard so it's quickly become a lovely family home where we hope we can settle for a while now. Jasmine has made the most of our new suburban location and shown her entreprenurial initiative by putting a box out on the footpath full of Candace's dolls, with a sign selling them for $2 each.















I just received a text from Shirley to say that Samuel's PICC line through which he receives his intraveneous nutrition has 'migrated' and needs a new line put in. So Samuel's gone back into hospital today for hopefully just an overnight stay before going into theatre tomorrow on the acute list. Shirley will stay with him and fortunately mum is available to look after the girls since I'm not due home until Friday evening.

I'll update you as soon as I hear any news about how the procedure goes tomorrow. Thanks for your patience with us during this period of radio silence while we get our internet sort out. Do keep checking in as we love to know that so many are keeping tabs on Samuel's progress.