Hope for Aimi, a sick little girl at Great Ormond St Hospital

[Vista]

Earlier this year we took on a new member of the admin team. He has kept a fairly low profile on here as his primary role is technical support, helping us luddites out with forum software and updates. Some of you may have noticed him lurking however. His username on here is Tophon and it is with his assistance that we made a number of the necessary updates to the old board but eventually elected to update the whole board to a completely new operating system. We have discussed the results on the forum in a few places and are pleased that but for a few niggles (now sorted I think?) the feedback has been positive. Toby put many hours into this and we thank him for his efforts.

 

Toby and his wife were expecting their second child when we enlisted his support, but sadly in January 2013 they learnt that their as yet unborn daughter had a rare kidney disorder called ARPKD. Toby and his wife were not given great hope of their daughter's survival past delivery.

 

Aimi has however defied the odds and was born on March 23rd. After a period in intensive care she was transferred to Great Ormond St Hospital where she continues to make progress.

 

We thank Toby profusely for continuing to support us during what is unarguably a very difficult time for him and I'm sure you'll all join us in wishing Aimi well.

 

Please take the time to read their story at the link below and consider giving a donation, no matter how small, all of which goes directly to Great Ormond St Hospital.

 

http://www.hope4aimi.co.uk/

 

[hotdiggetty]

A moving story and message  

 

Wishing Aimi a speedy recovery and have donated at the just giving link

[SmokeEm]

Keep on fighting little one xx

 

Donated - A very worthy cause 

[rallyesport04]

donated to a good cause   

[BaileyMex]

Best wishes to Aimi and the whole family from the Bailey's

[Vista]

Sadly, Aimi is still not out of the woods. She was booked in for removal of one of her Kidneys today but that has had to be cancelled as she is now fighting off an infection. It's thought that her kidneys are only functioning at around 10% capacity and some form of Dialysis is needed.

 

Fight it Aimi, we're thinking of you!

 

 

 

[SmokeEm]

My heart goes out to her family. Keep wishing guys, miracles do indeed happen.

 

Keep up the fight little one x

[bob wiggins]

How's this little lady doing ???

[Vista]

How's this little lady doing ???

Not as well as hoped. She's had one kidney removed and is getting little function from the other and looks set to lose that too. She's on daily dialysis though it's hoped that will be reduced to every 2nd day.

 

From a glass is half full perspective though, she is still fighting when initially only given a slim chance of surviving delivery

[bob wiggins]

Ah bless her , every time I log on here I hope for good news , wishing her better

[Mk2Jo]

Sad (:(

[mk1estate]

bought tears to my eyes reading this, if there is anything we can do just ask im sure we as a forum would rally round

my thoughts are with the family and i pray for some good news for them

[Vista]

An update on Aimi's progress

 

She has been doing okay on Hemodialysis which cleanses the toxins from her blood and removes the excess fluid. GOSH were trying to get her into a routine lately of a three time a week session, but she has been occasionally puffing up a bit so she has been in for sessions more often. They hope to get to a point where it can be done on a three times a week routine. This is with the view that once she can come home, she will visit there three times a week without puffing up too much in between.

 

Aimi still has excess fluid in her tummy from where the removed kidney was and this is taking some time to be reabsorbed back into her blood stream. Hemo will eventually take this out via her blood when it absorbs, so at the moment, there isn’t a true idea of how much fluid she will put on with feeds.

 

 

A few weeks ago, Aimi was showing symptoms of a low under-active thyroid (this can be common with kidney problems) and so she was checked out. The result came back that Aimi’s Thyroid was showing very low and she is now on Thyroxine, where I believe, it has returned to a normal level. Although low thyroid is apparently quite manageable, its just another ailment to add to the list. She had two heel pricks tests which showed it as fine on two occasions at two hospitals, so it may have been something that came on after the kidney was removed.

 

On the subject of Kidneys (or now Kidney) it has been decided at Great Ormond Street, that Aimi will have her other remaining Kidney removed too. This could happen in a few weeks. Although she seems better since the first Kidney was removed, the consultants believe she will do even better and be more manageable without the other remaining diseased Kidney. Belief is that her BP will really settle down and even be able to get off the Thyroxine med. So it will be back to another ‘Worry Week’ soon at Surgery time!

 

 

Although Aimi’s belly is still distended with the remaining Kidney plus fluid, her scar from the last Kidney removal has healed really well and returning back to more skin colour already. To give her some dignity, we have chosen not to add any pictures of this, but it is quite amazing just how quick it has healed. Let’s hope the next Kidney removal can go the same way!

 

And a short message from her parents:

 

Thanks for all your continued prayers and support! It really means a lot!

[Mk2Jo]

Wow ... that's looking quite positive and is good to hear ..... thanks for the update - thoughts and prayers are still with them all - what a precious bundle and what a fantastic head of hair she has!!

[Kevin Mk2]

Best wishes to the wee angel and her parents.

[BaileyMex]

Keep fighting Aimi xx

[Vista]

Aimi has now had her other kidney removed, below is an update from her parents

 

Aimi went into surgery again to have the remaining kidney removed. She had a Dialysis session beforehand and went into surgery about 12:30pm. The surgeon said the surgery went very well and Aimi seemed to cope fine during the kidney removal (Nephrectomy).

 

After an hour and a half – two hours, Aimi was taken to recovery room and by 3:30pm was back up in her room on the ward. On the first kidney removal, she spent a stint in intensive care, so it was very different this time. She didn’t even need a ventilator after to help her with air.

 

Aimi on dialysis just prior to surgery, having her BP taken. The purple thing is a dummy in case you wondered.

 

 

She had quite a settled night the first night, only waking up grizzling a few times. She was administered painkillers and went back to sleep again. Her BP was at 98 this morning (without BP medication) and while morphine can lower the pressure, it is a bit different from the 130+ she was at during last week.

 

Her very large belly has already significantly gone down in size. There will still be fluid and swelling in there so we hope it will go down to a normal level more in the next few weeks. Again, the surgeon made a very neat cut and we hope it can heal as quick and without pain, as well as the other scar had.

 

Aimi after surgery for second kidney removal.

 

To most, it would seem amazing that she now hasn’t any kidneys, but they both were so diseased. There were minute function in both and was causing a lot of problems. The very minimal urine output (tablespoon size every so often) will now get stored in her body along with the other fluid. As it has been doing, dialysis should catch up with the fluid and remove it from her bloodstream.

 

Please continue your thoughts and prayers to help Aimi recover from this surgery, it really helps and we all appreciate the support! Aimi is so strong for a baby so tiny and we hope the surgery means she is a step closer to coming home! Aimi will always fight ARPKD but for it to be more manageable makes all the difference.

 

Aimi back in her room after surgery.

 

However, she's still having set backs and the latest is a bout of flu

 

After Aimi’s second kidney removal / Nephrectomy  last Monday, she started coughing quite badly over the next few days. The doctors sent a swab to their lab to grow the bug and see what it was. The result came back that she had contracted Paraflu and it seems that it was brought into GOSH, as other children on the ward had caught it. More so, the children that have Hemodialysis.

 

Aimi was put back on some air to help her breathe easier as she was quite congested. It was only the small oxygen that she could have administered in her room, but doctors thought that if it got worse, she would have a stint in intensive care on a bigger ventilator. Aimi went through the weekend without having to be transferred, although she was suffering quite a bit with it, her chest has stayed clear and was able to cope.

 

Aimi still currently has a cough so we hope this will continue to get better over the week and is now off the breathing tubes. She is now getting more into a routine of a 4 day a week dialysis sessions and her newer scar seems to be healing fine.

 

This picture is of Aimi watching tele after dialysis the other day.

 

 

 

 

 

[bob wiggins]

thats excellent news so pleased for her ,every day i go on here i hope theres a positive update

[Mk2Jo]

Fantastic news .... she looks so much better already than her first pics! Thanks for the update and pass on my best wishes ..... sounds like her fighting spirit is gonna make her quite a feisty young girl ... Boys beware lol x

[Vista]

The doctors at GOSH have been very happy with Aimi’s progress. Over the last week, she has made steps to getting into a more stable routine.

 

Her flu is now much better, other than the slight cough that is still hanging on and her blood pressure has been now down to a more stable level. This is probably a mixture of fighting off the flu, getting into a better routine of Hemodialysis and where there are now no diseased kidneys making it erratic. Her BP had been around 110-130 and sometimes even higher and this week, has been well below 100. It has been around the 70′s at times which is very good. BP will still fluctuate more than normal, where she will retain fluid, but this week, there hasn’t been much change. This may mean, there isn’t as much excess fluid taking her BP up too high and that the dialysis nurses are getting on top of any retained fluid from before.

 

Aimi is also accepting her bottle much better and even grizzling for a bottle feed now. She will still be fed through her tube during the night to keep her weight gain up, but has started taking bottle feeds in the day easier. She sometimes also likes to take her dummy. This is good because it keeps her reflex action going and being able to orally take milk means her throat and mouth gets some liquid. Any milk she doesn’t drink from the bottle, gets put down her feeding tube. She will at sometime, get her feeding tube surgery direct into the tummy, instead of in her nose.

 

 

ARPKD babies can normally get Liver involvement too and a week or two ago, Aimi’s Liver numbers were not good and her liver apparently felt hard. She had another blood test last week and the Liver numbers had halved so this must have been down to an ‘inflammation period’ after her last Kidney removal. Also, fluid can surround the organs making them appear firmer. The radiographer said that after having two hefty kidneys in there, it can press and squash against near organs, so hopefully it can now all bend back into shape in there. Everything looked okay on the scan that he done.

 

The physio also visited Aimi to have a look at her little clenched fists. In time, these should open out when she goes to grasp something and babies that have been hospitalised since birth, normally take longer to hit the normal baby milestones. The physio also diagnosed her as having some Hyper-mobility. This means she is double jointed in her thumbs/fingers and feet. Her feet currently flip back onto her leg. Dad had this at birth on one and visited GOSH for it, where they said tissue will build up over time and not be a problem – we hope its the same in Aimi’s case too.

 

 

It looks like Aimi is slowly starting to smirk. As mentioned, babies who are hospitalised for a long period and have major surgery, normally take a bit longer to reach milestones. She had an ultrasound on her head some weeks ago and as routine, that gets followed up with an MRI, which she will have soon. The ultrasound was fine so we hope the MRI is the same. Babies who have trouble breathing right after birth can sometimes have some troubles, due to the oxygen being starved to the brain, so it is a routine to make sure everything is fine.

 

The doctors have also started talking about Aimi’s discharge from GOSH. They are already putting together an order for all the medications she will need at home. This may be a little way away yet but how great that it can now be something that is spoken about. She will need to visit GOSH for Hemodialysis, at a minimum of 3 times a week but at least, at the same time, she can be kept an eye on there too.

 

 

We would like to continue our eternal thanks to the doctors and nurses of Great Ormond Street and a thanks to two student nurses that cared for Aimi, and are now off back to university. These nurses put in a lot of their time to give Aimi cuddles when she needed it and help out in all her care.

Also a big thank you to the PTA at Hockley Primary School that organised a raffle at their fete for Aimi. Thank you very much.

 

Don’t forget to share this on your Retards Club, Twitter and anything else to raise awareness and thanks to everyone, as always, for their support. Also, remember to follow Aimi’s Twitter page if you haven’t followed yet.

[Mk2Jo]

Great news ... keep on fighting little girl!!! :D

[gearbox100]

thats great . Hope she`s home soon .

[Vista]

Another update from Aimi's blog, she has now at last spent a night at home with her family

 

Aimi on Dialysis.

 

It has been a long time since we updated the blog, in fact, this is the first post of July a day before August starts. We’ll try not to leave it as long next time, but as you could expect, jumping on here to update can sometimes be quite hard.

 

July, again, was a busy month. Aimi was able to make a couple of visits home for the afternoon. Although it was for only a short time, it was good for her to sample home life away from doctors and nurses all day. We all obviously more than appreciate all the docs and nurses hard work, but from Aimi’s point of view, it must have been nice for her to get away for a while.

 

Aimi also still had some sniffles and congestion a week or two ago and was put on a little bit of air on the ventilator, mainly just to keep her clear. It was only for a few nights and only the little ‘nasal prongs’ air. It may have been another cold-type virus or from where the Paraflu was hanging on from before.

 

 

Aimi at home watching Peppa Pig.

 

Aimi has also had more surgery this month. The doctors thought it was time to take the feeding tube from Aimi’s nose and move it to her belly. She originally had the NG-Tube (Nasogastric Tube) which entered her nostril and fed down her throat into her stomach. With this tube, before every feed, a syringe had to be placed at the end and drawn back. This was to test the tube was still situated in the right place. Now, she has a G-Tube (Gastrostomy tube) fitted into her belly (not too far under her Dialysis line on the same side).

 

This was a surgical procedure to get this fitted and are seen as a safer replacement to the NGTube. Aimi went in for surgery and put under anaesthetic. The doctors were going to fit it by a new method, but due to Aimi’s location of her Liver, they could not do it this way and had to re-schedule the surgery. Where Aimi’s Kidneys were so large, they crushed the area and pushed up against the other organs which moved her Liver along, and this made it hard for the surgeons to use that method of G-Tube placement.

 

 

Aimi went back in for it a week or two later, where they thought it would have to be fitted by the conventional open surgery method. They did manage to avoid this by using a totally different method to the other two, and she safely now has an operational G-Tube fitted and working. The syringe -draw before every feed no longer has to be done as the G-Tube stays in place. This also (other than being a bit sore and having another lead out of her body) must feel better to her than the NG-Tube. The tube in her nose was starting to annoy her as she worked out how to pull it out and was always putting her hands to it. It also can’t feel too nice when the nurse has to re-insert it again (quite a few times now) while Aimi is wide awake. So Aimi now has all that out of her nose and those teddy plasters off of her face and has gained a full use of the other nostril (which must also help during cold virus with breathing).

 

 

Aimi has also been through a series of eye and ear tests. Her optic nerves on her eyes had shown up paler than they should be at her age and so then went through a more stringent eye test a few weeks later. Thankfully, she has responded well and the doctors think it is just where Aimi is much slower developing than babies that have kidneys and have not been in hospitals since birth. Aimi is due an MRI in August to see that her brain is doing what it should and is just procedure, to follow a clear ultrasound of her head a few months ago. We hope everything goes well and is fine with that.

 

The team at GOSH have now given Aimi clearance for discharge to come home! Great news eh? Obviously it will still be quite hard as Aimi will need to go to GOSH at a minimum of 3 times a week for Hemodialysis, but at least Aimi can have some peace at home in between and enjoy things in a home environment. She has come such a long way and 4 months feels like a few years. Followers on Aimi’s Twitter page would of seen the photo of the small quantity of medical supplies delivered at home last week.

 

 

We will try to keep the blog updated more often as know some people do come back to have a read often!

[Mk2Jo]

Great news! Thanks for sharing

[bob wiggins]

Any news ??