Bruce Jaffray Gives His Opinion

Elizabeth and I went to see Mr Jaffray this afternoon. I won't bore you with the details, but the upshot is that if Elizabeth stays out of hospital until January 8th her op will be cancelled/postponed, but if she has any admissions then it will go ahead in mid-January/Feb.

Mr J thinks that it's 50/50 that Elizabeth's problems are caused by reflux, but he has seen children with as few clinical signs as Elizabeth 'cured' by a fundoplication. I think that, ultimately, he feels that the potential for long-term chronic lung damage is too serious to ignore. We trust Mr Jaffray completely, so that's how things will stand.

J (having a drink tonight - yes, indeedy)
xxx

An Official Period of Prevarication

Hi,

We went to see the resp team at the RVI this morning. The great news is that Dr O'Brien thinks he may have been a little hasty regarding the proposed fundoplication and we have now agreed to enter an official period of "If it ain't broke don't fix it".

We are still seeing the surgeon on Thursday to get his views on the operation, but it would be surprising if he's really bullish in light of the what the resp team have now said.

So, this looks like a good result. We just have to hope that Elizabeth, who has now managed a record-breaking seven weeks without a hospital stay, continues to be in good health. She is now the size and weight of an average one year old.

I'll post the results of our meeting with Mr J on Thursday evening.

(A very relieved) J
xxx

It's Grim Oop North

We hope that you enjoy this shot of Newcastle Quayside taken this morning on our way to see a children's classical concert at the Sage with some (new!) friends.

On the topic of Anna's health, Mike McKean - ace respiratory consultant - called and we had a long chat. The upshot is that he is going to meet with the other resp consultant, the gastro consultant and Anna's surgeon about her case. Everything will be reviewed and they will revisit the decision to go for surgery and also look at what can be done regarding the "possible reflux" as far as meds are concerned.

Andy and I are very pleased with this development and we should know by the end of the month what the final decision will be. We will, as always, keep you posted.

Janie
xxx

Ella Bella

Here is a shot of Ella taken on Saturday (the poor child is very neglected on this blog I've noticed!). I know I'm biased, but she does have a most beguiling face.

Anna can walk (as in from room to room rather than a few steps). Hooray!!!!! She is so thrilled you would think she had invented it and often stares at her feet in amazement as they're moving.

Following on from my last post, I mailed the resp team today with some queries about the reflux. I am hoping that as a result we will be able to try some medication/dietary changes regarding the possible reflux rather than going straight for the surgical option.

Janie

Things are going well:

a) I went to an Abba tribute night last night - it was almost a spiritual experience for me. I am thrilled to have finally found a group of girl friends in Hexham who are as childish and into naff music as much as I am. We were the ONLY members of the audience dressed up out of 350 people, but that's rural Northumberland for you...
b) Anna has stayed well for almost four weeks! She caught a cold earlier this week and so we anticipated a trip to the RVI, but so far she is fine.
c) Katie is having a baby in May ( I feel like this entry should be in flashing neon!). We are now moving back to London, so that we can dote on him/her to the required standard (only joking Lucy!).

We have a date in late November for seeing Anna's surgeon, the sainted Mr Bruce Jaffray, to discuss the proposed fundolication, but he must be pretty bullish about it as Anna is already on his list for the procedure. We may be looking at a December op and up to two weeks in hospital, so I am getting my Christmas shopping now!

In the meantime, we have been going through Anna's history to see if anything comes up as another possible cause for her problems. What we can't understand is that if she has reflux (most severe in infants) then why didn't she have these respiratory problems before the age of 11 months? If Mr Jaffrey advises us to say ok to Anna's op then we will go for it, but we currently have real doubts as to whether it will achieve anything. Hopefully, time will prove us wrong.

Janie
xxx

There's No Place Like Home

Hi,

I am thrilled to say that Anna and I came home yesterday afternoon. What a marathon that was. However, we were on lovely Ward 6 with some really nice families and also had a room to ourselves, so it wasn't as grim as it could have been.

Following this latest episode the respiratory team are looking again at Missy's problems and are proposing the following:

In a couple of months, she'll have a fundoplication - basically keyhole surgery to tighten up the loose sphincter in her oesophagus. The new theory (and it is only a theory) is that Anna may have reflux which is making her lung problems worse. The procedure might cause her other problems but it is a reversible.

We'll need to see Mr Jaffrey, super surgeon, about the op as it is his call as to whether it happens. However, as the resp team are now concerned about Anna having long-term lung damage if nothing is done, I think it's likely that he'll go for it! The other worrying possibility is that if she has another couple of hospital stays they may take her into hospital until her op to keep her well and protect her from any more lung damage!!!! To avoid that nightmare scenario we'll be keeping Anna away from bugs as much as is possible - I'm thinking of investing in a little baby mask!

Janie

Hope springs eternal

Hi all,

Anna's been improving (in a zig-zag kind of way) and we're hoping that she'll be sent home today (Monday)... Fingers crossed!

In the meantime here are a couple of pics from yesterday.



Ax

Here we go again...

A belated entry... Anna was taken into hospital again on Wednesday night. The usual trouble - a runny head cold rapidly whizzed down to her chest as a nasty infection, meaning she needed oxygen, nebuliser, strong antibiotics and to be monitored very carefully. She was very poorly yesterday (Thursday) but looked a lot better today. We're hoping she'll be able to come home tomorrow or Sunday latest.

Ella and Anna are really good friends and playmates now so Ella's been very sad about being away from her little sis, as well as missing Janie who's staying at the hospital. Whatever happens we're visiting tomorrow though.

And it was all going so well... !

Anyway, we've been told to expect this kind of thing for the next couple of years, so I guess we'll just have to get used to it.

On a happier note, happy birthday to my lovely big sis Alison!!

Ax

Scan results

Hi,

We got the scan results for Anna today. Thankfully she does not have vascular ring and won't need an op. Hooray!

However, she does have emphysema plus some quite extensive scarring on her left lung. Neither of these are reversible and they have reduced her lung function permanently, but at least we now know the full extent of her problems. The respiratory team have put together a plan to keep her well as much as possible this winter and we also have a 'Golden Ticket' giving us instant access into the RVI.

I managed to have a quick chat with our number one hero and top surgeon, Mr Bruce Jaffray. He has a huge smile on his face every time he sees Anna.

Janie
x

Walkie Talkie

Hi,

Anna took her first steps yesterday! It has taken her longer to get there than some children because of her weak tummy muscles so we are truly thrilled.

Janie

Scan date

Hi,

Anna's CT scan is set for the 11th September. We'll keep you posted on the results.

Those of you who worry about my sanity will be relieved to hear that I have had a lovely few days celebrating my birthday (like the Queen, I prefer to celebrate over a period of time).

I received lots of cards and pressies on Friday and then went on a rare date with my husband in the evening. Saturday was also excellent as I saw 'Volver' - the new Pedro Almovodar film - with my friend Chris. What a wonderful film!

I still have a luxury spa day to look forward to, so I'm sure that you will agree that I am a very lucky girl.
Janie x

PS: Andy and I love this shot of Anna. She looks so grown up and it captures her 'sparkle'!

No More Mr Nice Guy

Andy finally cracked and took his frustrations out on a poor defenceless bird... The swine!










Well, Anna fans, since our last post H.R.H has been in hospital TWICE.

The first time was during our trip to Scotland to visit Andy's parents. We took the opportunity to visit our great friends Charon and Dr G in Dundee and, following many, many bottles of Prosecco, (we were on our holidays!), had to take Anna to the local infirmary. We were only in for one night and managed to complete our three-centre breakaway with a night in Beadnell with my fab pretendy cousin, Michael, and then spent a lovely couple of days in Hartlepool with my sister and her children, Hugo and Georgie.

Anna has been discharged from the RVI today having been admitted on Sunday. She is really thrilled to be home. Her consultant has now said that she may be having her CT scan in the next couple of weeks and that they are going to take some cross section images of her lungs as he suspects that something else might be going on with her little body.

Her admission was a real shame as we had a wonderful time on Saturday celebrating Dendle and Margaret's Golden Wedding Anniversary near Sherwood Forest. Andy's sisters did a brilliant job of arranging things and we met lots of very funny, very warm relatives and friends of the family. Many of them have followed Anna's progress closely since her birth so it was lovely to introduce her to them at last.

Anyway, I have survived my first stint on an open ward at the RVI. Anna no longer has MRSA so we've lost our 'instant upgrade' to a cubical. All I will say is that having listened in to a couple of conversations I decided to hide my wallet in a wipes container in my suitcase! All human life is there, but Anna far preferred it to being shut away in a cubical.

Janie
xxxx

Results

Hi,

We are not staying overnight in the RVI as Anna pulled her PH probe out on the way down from theatre, so we are back in Hexham. Hooray!

The good news is that the doctors were able to find out what is causing Anna's respiratory problems. She has tracheomalacia and bronchomalacia. I know that most of you will Google this, so a very quick explanation is that her trachea and the airways in her lungs are the wrong shape. They tend to hold onto infection more readily as a result.

She may also have something called vascular ring and that will be checked in a CT scan under anesthetic in a month or so. She would need an op to correct that.

We will get the blood results back soon. We know that she doesn't have cystic fibrosis which is obviously fantastic news.

We have been told to expect another rough couple of years with Anna. However, she should slowly grow out of the tracheomalacia and bronchomalacia. We have decided to take our holidays in the UK within striking distance of a major children's hospital until she is four or five, so at least the environment will benefit!

Janie
xxx

PS: Ella took daily swimming lessons this week and can now officially swim! You can see above her first ever swimming certificate and badge (five metres).

Developments with Anna

Hi,

Anna has had a couple of hiccups over the last few weeks and managed to develop an allergy to her antibiotics which resulted in a dreadful rash and a meningitis scare for her mother!

However, the result of all this is good as Mike Mckeen (respiratory consultant at the RVI) has decided that the 'wait and see' period is over and on August 4th she is having a whole battery of tests. Anna is getting the RVI deluxe package of sweat test; blood tests; camera down lungs; camera down tum and overnight PH probe. Luckily all the nasty stuff will be done under a general anesthetic. Our favorite person Mr Jaffray will do one of the procedures and I feel very positive that things are moving forwards. If nothing is found on the 4th then at the very least we will be given a plan to keep Anna as well as possible over the winter (sorry to mention winter!).

So other than that life trugs along. We're managing to enjoy some days out whilst staying close to home and also hoping to visit Andy's parents near Dundee next month.

Janie
x

PS: Ella knows how to ride a bike without stabilisers! She managed it in about 20 minutes and now looks like an old pro as she whizzes around the garden.

Busy Bees

Sorry for the lack of cute photos recently - hopefully this one makes up for it!

Anna has stayed out of hospital for a couple of weeks and we took the opportunity to go away and celebrate Andy's 40th birthday in London. Many thanks to Katie for hosting us and making Andy's birthday do possible; to Ally and Howie for their hospitality and, last but not least, to Howard and La Smackie for making it to the do and putting a big smile on Andy's face.

Honourable mentions go to my brother who saved our bacon when our car broke down as we were leaving for London and Andy's sister Alison who gave us a lovely lunch on the way back up the country and also bought Andy a fab watch!

The latest health update on Anna is that the daily, 'continuous' antibiotics plus the steroid inhaler she's on seem to be doing the trick. We're starting to relax slightly...

Janie
x

A First for Ella and Andy

Ella went on the rollercoaster at Metroland today. Andy had never been on one before either and they both had a great time. It's a proper full on ride, so I was very impressed by Ella's bravery. You wouldn't get me on a rollercoaster - it's my idea of hell!

We've had a fabulous weekend. Yesterday we went to a lunchtime World Cup party with Vicky, Al, Ed and Sheena plus kids and got home at 9pm. The day was pretty idyllic with perfect weather, lots of splashing in the pool for the kids and a game of cricket and some chilled drinks for the grown ups.

Today, we went to welcome Verity - Maxine and Ray's new baby - to the world and Ella has also had a another session going down the garden slide into the paddling pool. Andy is doing a gig tonight to celebrate the summer solstice (their singer is a white witch!), so it's just me and my gorgeous girls this evening.

Janie
x

Trolley Dolly

Those of you who knew Ella at age one will know that she was very attached to her wooden trolley. Well, here's Anna in the garden yesterday taking her first steps with the same trolley. Cute as a very cute thing!

In and Out...Again!

Anna and I have had another stay in the RVI. We went in on Sunday and got out last night (Wed). She had the same breathing problems as before and is now being thoroughly investigated by the respiratory team. In the meantime, they have also put her on a preventative regime of continuous antibiotics and daily inhalers, so hopefully we can stay home for a while.

I hope that you like the shot of Anna during her hospital stay - she looks like she was in baby gaol.

We've decided to cancel our holiday to Italy in July. It would be far too stressful being miles from the nearest hospital and we can't take any chances with madam. If you fancy two weeks on an organic farm in Tuscany during the school holidays at a very reasonable rate I can give you the web address...

Other than frequent hospital admissions, life is great. We had a really lovely time at the BBC Springwatch stuff at Kielder on Saturday and it has been really hot for the rest of the week. We even had the paddling pool out this afternoon which is a big event in the normally frozen wastes of Northumberland!

Janie
x

Elizabeth's a Bloater!

For the first time in months and months Elizabeth's weight is above the second centile and she weighs almost 18Ibs. Woohoo! All that extra mature cheddar is doing its work.

Here's a shot of her leaning against the sofa and showing off her lovely, chubby thighs. Doesn't she look grown up all of a sudden?

I have also attached a shot of Chloe on our day out to a local 'children's farm'. She rode a donkey, bottle fed a lamb, cuddled a chick and saw traditional Northumbrian farm animals such a llamas, guinea pigs and wallabies... It was great fun.

J x

PS; If anyone saw ER tonight please feel free to call me to discuss the amazing end-of-season cliffhanger!

Good news on Gill

Mum went back to the hospital regarding her collarbone today and the great news is that she won't need an op. She is mending well and should be out of her sling in good time for her holiday to Spain. We went on a short visit yesterday (she still gets tired easily) and saw her very impressive bruising. She is looking tired but is much more her usual self.

Elizabeth is keeping us on our toes as usual and had me up at 5.30am this morning. She was breathing really rapidly and was very pale, but seems to have made a really good recovery and is now enjoying a lovely sleep. I don't want to go to the RVI any more this month!!!!!!

Not to be outdone, Chloe has become scared of insects and keeps getting up in the night (Elizabeth is waking up at about 4am for a feed at the moment as well), so it's 'Hello, Zombies!' for us unless we can take action. We are trying some 'poems' which teach Chloe how to respond to situations which worry her. This has already worked with cars. She used to hide when they went past in the street as she hated the noise, but now she just shouts, "Whee!" at them. We are trying "Buzz off!" with the insects tonight, so wish us luck.

Now the cute bit - today's photo shows Senorita Chloe twirling in her lovely new Monsoon skirt from Charon and Dr G. Girls, doesn't this make you wish you were six?

Janie
xxx

PS: Liz, if you are listening, A is really sorry he forgot your birthday. Items have been purchased and will be in the post ASAP.