About Me

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Well I entered the world on 25th June 2010, the day after mummys birthday. That picture up there was one of the first daddy took of me. We were all fine and was home the next day. As I am now at 9weeks, I love being in my swing, on my play gym or in the bath kicking my legs around (ready for daddy to take me footie) I'm quite the dribbler!! I do love cuddles though :) I do have my screaming fits, excersising the lungs, I get passed from mummy to daddy then back to mummy till eventually I fall asleep, bouncing me does wonders. So I'm pretty much the same as every other 9week old on the block, only difference is I have Cystic Fibrosis. I will get mummy to explain it as best she can for you and will try to keep you as up to date with everything as we can. So here is my story.....

Thursday, 10 April 2014

Bronchoscopy results are in...

Thursday 10th April - clinic and bronchoscopy results explained in non doctors words!!

Good news, mums been going on at me to eat more and put on some weight and I have. I lost a bit being in hospital when I was so poorly but I gained it all back and more. I'm now 16.4kg and I'm a couple of centimetres taller too. Happy parents. 

All in all at this clinic appointment everything was fantastic. Chest was clear as a bell, tummy is still good and I even done my own cough swab completely by myself, held it on my own and done it with no help. However, this wet fruity cough is still hanging around no matter what I do.

The results from the bronchoscopy actually came back rather good. My vocal cords and larynx were normal with only mild inflammation in the airways. The secretions they sucked out were of a good normal colour and were easily suctioned, not sticky at all which is great. The laboratory only found rhinovirus, which is just the cause of the common cold, but other than that no bacterial infection. 


So why have I still got this horrible cough...?

Well, the bronchoscopy did show large numbers of fat-laden macrophages. Huh??? In non doctor talk that means my reflux is still playing up bad. I have always had bad acid reflux, tipping the scales with very high levels when I had a ph study done at 3 months old. I was always on the highest dose of all the reflux meds but the last 6 months or so I started getting very bad tummy pains so they stopped some of them just it now seems I need them. I am refluxing bad and it is tipping over into my lungs so that's why they think I'm coughing. So I'm re starting on 5mg of domperidone 3x a day which basically makes me digest food a bit quicker so not really giving it time to be refluxed - if that's a word! I just really hope it doesn't give me the bad tummy aches again. I do now take probiotics which helps so keep your fingers crossed for me.

They also done my annual bloods while I was under the general anaesthetic so they won't have to do them at my yearly assessment in June. All the results came back fine which is good as last year they were inconclusive as after 3 attempts to take blood and it clotting mum said enough was enough so they couldn't get enough to do all the tests the wanted to. At least they managed that this time. 

In other news this week I've really progressed well with my swimming. I can now swim nearly the whole width of the pool under water front crawl as well as a whole width on the surface on my back, can float like a starfish and various different things with floats and the woggle. So I'm graduating up to the next class from next week. I'm very excited but a little nervous too. Bye bye red hats hello orange.

Next week we should find out what infants school iv been accepted into ready for September. I really hope I get the same one my friends are going to. 

Please dont forget daddy is doing a whopping 100 mile cycle in August to raise money for the cystic fibrosis trust. I'm not sure what that means but mum said if dad raises enough it will help doctors to look at new medicines which could potentially keep me out of hospital so if you would like to help him reach his target and spur in on this is the link to do so...


Or you can find the link on the top right hand side of this blog.

His training is going really well so far, he has got up to 25 miles in one sitting so please help him along his way. If everyone reading this donated £1 that would make a huge difference to me and many others. Thank you to everyone that has sponsored him so far, I'm very great full.

Ethan x

1 comment:

  1. Ethan what a brave boy you are and very clever doing your own swab! Very pleased it sounds like you had a very good clinic appointment and fingers crossed the results will help get rid of the pesky cough and the horrible reflux will be controlled better! Next group in swimming? How exciting well done you - fingers crossed on school front - where ever you go your sure to make lots of new friends. Dads traing sounds like its going well too - we will all be cheering him on so he can helpyou and others can breathe easy! Big kisses from Meadow Isabella I see you next week xx