Update

To all those that wished us well for littleun’s first appointment at the RBH on Monday, I just wanted to let you know the outcome. Her fev1 was down to 47% and she very helpfully brought up some disgusting, blood streaked sputum, at which point our new named consultant phoned the bed manager in front of us and arranged for her to come in on the Wednesday. We had a few hiccups over the first couple of days, but she is now on a full compliment of treatment including IV colomycin (as a result of the concerns over whether she has ototoxicity from aminoglycoside use), IV aztreonam, oral septrin (to cover the s.maltophilia she cultured in July, just in case), and oral fluconazole just in case there’s a fungal element, or the Candida she’s routinely cultured for the last 2 years is actually in her lungs rather than being a contaminant from her throat or mouth. They also tend to throw in an antifungal where patients aren’t responding to treatment as they would expect or would normally, and given this is our 4th course of IVs since Feb, we all agree she definitely fits that bracket.

The consultant isn’t convinced about the possibility of an MDR strain of pseudo, but they haven’t had any resistance profiles from our old tertiary team yet (despite asking repeatedly), and the sample from Monday was still processing as of yesterday. She did concur that it’s looking extremely likely that bod has developed resistance to cipro, though, given her repeated lack of clinical response when growing this particular strain, which is something our old team refused to entertain despite the lab results also showing resistance. We’ve basically agreed to take it day by day and see how she responds, but we’ll definitely be in until at least the 30th. They’ve also agreed to get a number of other things done that should have been done previously but haven’t, including the genetic screening for ototoxicity, a dexa scan, an up to date CT, and a couple of other bits. I’m already incredibly impressed with the team here; there might have been a couple of issues, but if nothing else they at least acknowledged them and apologised rather than just shrugging and going ‘oh well’.

[CDPO16]

It must be a relief to you that your daughter is now in more competent hands. I hope that all goes well for you both xx

[sassy59]

That’s all sounding much more positive and I know your daughter is in the best possible hands. Pete will always sing the praises of RBH.

Hoping for better days ahead. Xxx 😘💖😘💖

[Hidden]

Hello Charlie_G. It does sound as though the team at RBH have a handle pn things and are working with you, rather than against you as your last team did. Obviously all of these issues are going to take time to sort out after such neglect but I hope that you feel that you can have confidence in this new team to improve little un"s treatment and quality of life. Not to mention your mental health! Do keep us up to date. I'm sure that there are many of us, who, like me, have you both in our thoughts.

[Corin1950]

Hi Charlie

What a lot for her to go through at such a tender age but it sounds like she’s in the best possible place and safe hands there. It s one of the hardest things to do to see your child suffer and it must be very hard for you.

Thinking of you both and sending you my very best wishes.

Corin

[Phil40]

Hi, thoughts are with you. I was a single Dad and brought up my two youngest on my own and it’s true that I would rather suffer myself than have them I’ll. My youngest son is now 30 and cut his hand open with a chain saw a couple of years ago and I still felt the same!

Hope your little one is doing ok, when you say RBH which hospital do you mean?

Regards

Phil

[Hidden in reply to Phil40]

A lot of my mates are just starting to have their kids now, and I always tell them that the worry never gets better as they get older, it just changes. Same with the stresses and struggles. And I also always tell them to enjoy the baby stage, by which I mean when you can put them down in one place and know they’ll still be there when you come back: I definitely took that and the lack of backchat for granted!! 😂

RBH is the Royal Brompton in London, and as a specialist, solely respiratory and cardiac hospital they’re world leaders in both paeds and adult cystic fibrosis care. We moved 250 miles to Surrey a month ago, and a massive part of the location choice was purely to have her fall under the care of the cf centre here.

[cofdrop-UK]

Hi Charlie

I have very mixed feelings for you and your dear little girl. On the one hand I am sorry she has to be in 5* yet again and on the other I am pleased she is in 5* but is now under a very proactive team who appear to be starting from scratch and leaving no stone unturned.

Glad too that as littleuns production of the real filthy bloody stuff is hit and miss, that she produced it on cue - they love evidence (sometimes I feel our word is considered as just anecdotal by some medics).

That is some cocktail, covering all bases and I hope she tolerates them well and her FEVs will improve and she will feel much better, so that you can have some good quality Dad and Daughter time at home soon.

I have been wondering if the move has gone through and if you are now with the RBH permanently (hope so).

The relief after all you have both been through must be tremendous.

Thoughts are with you both.

Love and hugs

Cx

[Ergendl]

All the best to the little'un and you. Hope the new treatments quickly bring her back to health.

[Dedalus]

Sounds as though she's at last getting all of the tests that she should have. Definitely in good hands. All best wishes for good diagnosis and treatment xx

[Hacienda]

I'm Just catching Up Charlie G, I am Relieved for you as the Treatment sounds very Thorough and Consultants and The staff are all fantastic. I used to go to QE Birmingham Transplant Hospital, Met a few young People with CF, They travelled from all over Uk & Ireland, One Particular young Lady at 24 years old would Drive herself from Essex, pre Booked into a Hotel as She would have 2 Appointments on separate days. She was my Little Hero and inspired me with her Courage. Good Luck to you & Your Lovely Daughter. Sending Love to you Both. Carolina. XXXX

[nina30795]

Wishing you strength and endurance and hoping your little one begins to

Improve soon xx

[peege]

At last, I'm so pleased she's in safe hands at last but what a cocktail!

Bravo all round