Victorious Blog Post!

Ffion has been discharged today :-))) 

 

Thank you God! 

 

We are extremely happy to have her home for good and will be breaking open the champagne tonight!

 

She still has her feeding tube in for backup but has almost all her feeds by bottle now. She has learnt how to pull her tube out so I am having to tape it down really well as we have to go back to the hospital to have it put back in. I had another go at it this morning, but didn't get it done. Went too high this time and tried to poke it up into her brain!! Not surprised she screamed!

 

She is on 3 different medicines - sodium bicarbonate, trimethroprim and iron. I am making use of her tube to put these down at the moment as she has a tendency to spit them out! Her last creatinine reading was 96 so (hooray!) it has dropped below 100. 100 is a benchmark number according to the consultant as babies with a creatinine level of 100 or lower feed much better and also rarely need dialysis/transplant before the age of 10 which is brilliant :-)

 

We have a follow up appointment on Friday and the health visitor is coming frequently to weigh her. Putting on weight is the main concern for her now as it is more difficult for renal babies. 

 

I will continue to update the blog but less frequently now, so it gives me a good opportunity to say thank you to all of you who have been following Ffion's progress and thinking and/or praying for us. We are extremely grateful and want you to remember the door is always open in our house to come for a cuppa! 

 

I also need to say a big thank you to Adele, Kenny's cousin, who has been maintaining the blog for us - it has been a brilliant way of keeping in touch with everyone - thank you for all your hard work x

 

Bring on the sleepless nights!!

 

Sally x

An Interesting Day.....

Today has been an interesting day at the hospital. Bizarrely enough it started yesterday. I seem to have been given lots of additional hoops to jump through before Ffion can be discharged. Yesterday they asked me to stay overnight so they could check I could cope with night feeding (umm...hello...done this before!) but I obediently went home and got an overnight bag, set my alarm for every 3 hours and Ffion got fed. This morning I had to be watched to check I could use a syringe to draw up the right amount of medicine for her. (Beginning to feel they don't want to let her go!) It's all a bit frustrating really.

 

Anyway, she had her ultrasound this morning and the size of the kidney pelvis has reduced from 25 to 18mm which is good. Creatinine down to 96. Her antibiotics have finished, (other than the one she has to have every day) and they want to observe her for 24hours after, so, as long as she stays well, we are going home tomorrow morning :-)) 

 

Trying not to get too excited - watch this space...

A Short Update From Kenny!

Ffion is feeding well again after Friday's operation. Her post-op ultrasound scan is due today so we will update again once we have the results of that.

Friday Night Update from Sally

Ffion had her small operation this morning to remove the stent that was supporting her ureter while it heals. Everything went ok and she was back on the ward by mid morning.

 

She fed straight away but didn't keep it down so she's going gently with the feeding for now. Her feeding tube is back in and will probably stay in again for a while as feeding's been a bit hit and miss without it to fall back on. 

 

She's going to stay on antibiotics for 48hrs, then her bacterial culture test, blood tests and ultrasound will all be done on Monday. If all these are ok, she can go home at some point after that. 

 

We are already being sent outpatients appointments through the post, so it is clear they don't want to keep her much longer :-)) Here's hoping...

 

Sally x

Monday Night Update from Sally.

Ffion had another ultrasound today in preparation for the stent coming out on Friday. They didn't find anything untoward but have acknowledged that it's a bit of a risk taking the stent out early. However, the other option is to have her on antibiotics for another 4 weeks which they don't want to do either. After Friday she'll need to stay in for 48 hours to have antibiotics but hopefully will be discharged then.

 

Creatinine was down a little again today at 125 but it's levelling off. They've dropped the sodium chloride but have added iron. I think this juggling of electrolytes is going to be the norm for the next few years. 

 

Had a chat to the nephrologist today who said once she is discharged we will be just monitoring and juggling the numbers until her kidney function starts to go off. He says that is very likely but we won't know when - just have to wait and see. His aim is to schedule a transplant before the kidney function goes off so much she  needs dialysis, but she has to be about 3yrs old before that can happen so we may be looking at dialysis before she's 3 as a worst case scenario.

 

Once Ffion is discharged they are going to arrange for her to have all her childhood jabs in the next couple of months. This is just in case she currently has the best kidney function she's going to have. She'll also get hep B and chicken pox jabs in addition to all the other normal ones.

 

She's coming home for the day again tomorrow and Wednesday which I shall look forward to :-))

 

Sally x

Fraser helping Daddy feed Ffion!

This photo was taken over the weekend, AT HOME! Ffion is still escaping the hospital during the day, returning each night for her antibiotics.

Ffion's First Day Trips Home!

Yesterday was the first day we'd got to take Ffion home for the day :-) 

 

The doctors took a while faffing before they finally let her go and we went home. Ffion had a busy first day - we took Fraser to Tumble tots in the morning. Ffion decided not to get on with the bottles we had at home so had two tube feeds before we an emergency trip to Mothercare in the afternoon where we bought a variety to see which one our fussy miss liked best! The problem was soon sorted out!!

 

Fraser was very caring and loved the novelty of having 'Bebby Ffion' home, 'helping out' changing her nappy and giving her cuddles which practically squish her!

 

We have had another good day today - Ffion took all her feed by bottle overnight so she came home without her feeding tube in. She's fed really well today too, so we're hoping when she's properly discharged it might be without the tube in her nose.

 

The surgeons have decided to remove her stent on Friday this week, given the UTI problem so she is going to have an ultrasound on Monday in preparation for that. After that there doesn't seem to be anything keeping her in, so we may be out for good :-))

 

Sally x

A Rollercoaster Day!

Today has been another one of those rollercoaster days but it ended really well :-)

 

My sister Becs has been here since yesterday and she came into the hospital with Mum and myself. Mum got to feed Ffion, who's been really good and taken all her feeds from the bottle today.

 

The nephrologist came round this morning and said that they probably wouldn't be able to let Ffion home until her stent is out which could be 5 weeks time. They think it's likely that the stent has been colonised with bacteria and as soon as her antibiotic course finishes she will get another urinary tract infection and need more. These have to be intravenous given the particular bug that she has. The nephrologists are negotiating with the surgical team now to see if the stent can come out sooner so she doesn't have to have so many antibiotics. We are waiting to hear the results of that.

 

This afternoon, however, the nurse came in and said they'd decided that they could change the time of Ffion's antibiotics to 8am and 8pm and she can come home between these hours starting from tomorrow!! So I've got all the stuff we need for feeds and I shall be there shortly after 8am tomorrow to bring her home for the first time :-)) (They'd better not change their minds now...)

 

 Sally x

Wednesday 3rd August Update from Kenny

Ffion's latest blood results came back. The creatanine & urea results were up slightly but this was likely to be due in part to the infection. Next blood tests scheduled for Saturday.

 

On the positive side, Ffion's weight has started increasing again. 2.95kg (6lb 10oz) at the last measurement.

 

She was quite alert at times during the day & was awake in-between feeds. Several of today's feeds were entirely via the bottle and not through the tube :)

Change of Plan

Unfortunately things have changed since last night's post and the bad news is that Ffion is not going to get home tomorrow after all. She has pseudomonas (an infection) and the IV antibiotics need to stay in for five more days.

Please pray for the antibiotics to bring the infection under control and for Ffion to regain her strength and be well enough to come home next week. Pray also for Kenny and Sally as they cope with this latest set-back and the disappointment of not getting their wee lass home yet.

Monday Night Update from an Excited Sally!

As you can tell, we're really happy today!! 

 

The staff at the hospital have been talking about Ffion coming home for days but nobody has committed themselves to a day or time other than 'probably some point this week'. We thought we had a setback as well when she developed a urinary tract infection over the weekend but the antibiotics have been kicking in and the consultant says she's ready to go.

 

More good news is that we don't need to go home with an electric pump to feed her with - she's having a lot of feed by bottle and the remainder we will put down her tube using a gravity feeding set which is a lot quicker and easier.

 

For those of you into numbers, her creatinine is hovering around the 130 mark (normal for a newborn is 30-50) and the consultant says if it drops to less than 100 she will probably feed normally. However, this is unlikely as it is normal for somebody's creatinine level to rise as they grow. Consequently we are now looking at regular monitoring at the Children's Kidney Centre (probably weekly to begin with) and we still can't rule out her kidney function being insufficient for the remainder of her life, but we know she's in really good hands :-)

 

Unless there's any great change tomorrow we shall blog again on Wednesday to let you know she's home ok!

 

Sally x

SHE'S COMING HOME!

She's coming home! 

She's coming home! 

She's coming!

Ffion's coming home!

Wed morning!

(direct quote from text from Sally!!)