My bike is CFAware
Wearing 2 bands for CF Awareness month.
Tags | Cysticfibrosis | CFAware |
WATCH THIS »» http://pdl.vimeocdn.com/39215/933/153600660.mp4?token=1365516417_fb1b7f33371556a16c70fba5c1797b50
Not enough people are educated about this life threatening condition… Please help me spread the word by reblogging this.
Lauren’s Kalydeco has arrived. Happy days!
Uploading data
Modelling the new cfaware wrist bands
Tags | cysticfibrosis |
Kalydeco!
A very special moment for us, the first dose of Kalydeco for Robyn and hopefully it shouldn’t be too long until Lauren gets hers as well.
I-neb Insight Online
Robyn has been using the I-neb for about 6 years now to neb various medicines including Pulmozyme, Tobi & Promixin. One of the features of the I-neb is that the hospital could download data from it to monitor the treatments to make sure the correct dosage is being administered, but they could only do this when you attended clinic in Sheffield, which for us is probably only 1 or 2 times a year.
Phillips Respironics have now developed the software to allow the patient to download the data to your own laptop and then upload that data to a website that the hospital and themselves can access. You can do this as often as you like, we will probably do it every 2 weeks. I guess during times that PFT’s are down they will probably want the data more regularly.
The above photo is of the treatment view tab and shows I-neb use, nebulization time and daily nebulizations both in graph form and also as a %. So no way of hiding missed treatments from your CF team!
This second photo is of the Devices View tab. In this view it basically shows mesh performance, Inhalation time and rest time. Philips monitor the mesh performance and can see when and if the mesh needs changing which is good especially with using Tobi through the neb that is sticky. The other 2 graphs that show Inhalation and rest times can help highlight potential oncoming infections, i.e. If the Inhalation time comes down and the rest time goes up.
The first download is scheduled for tomorrow and it will be interesting to see the results.
Newspaper Articles.
I thought I would post 2 articles where the girls have featured in the press.
http://www.thestar.co.uk/news/local/we-applaud-our-readers-1-4055003
http://www.thisisgrimsby.co.uk/Inhaler-breathing-new-life-futures/story-13520146-detail/story.html
‘Tis the Season to do IV’s!
Yes we’re into that time of the year that the CF community hates! And we as a family are no different.
The first signs started about 3 weeks ago for Robyn at a routine clinic appointment in Grimsby with the Sheffield CF team, she normally blows a good 100% with no trouble, but that day she could only manage 89%!! Que puzzled looks from me and Jo, there hadn’t been any signs to justify this result. I mean there hadn’t been a cough or wheezing, no loss of appetite and still very active.
The Doctor listened to her chest, took a cough swab and it was decided to put her on oral antibiotics return in 10 days to see Dr.Samy to do another blow and repeat the cough swab. The first cough swab came back all clear and we returned to see Dr.Samy and repeat a blow, again it was only at the same level as before.
So for only the second time in over 12 years it was decided to go for IV’s to nip any potential infection that could be brewing in the bud. Last Tuesday we arrived at hospital for Dr.Samy to put a long line in Robyn’s arm, she was very nervous but with the help of some gas & air and a Doctor who is excellent at doing the procedure it was in in less than 5 minutes.
Fast forward to now, Sunday, and our home IV auto pilot function has kicked in. I guess doing them for over 20 years helps in a way, although it’s something I would rather not have on my CV. I swear I could draw the drugs up blindfolded just like a scene from a movie where the soldier strips his weapon down and reassembles it!
The good thing is although we couldn’t initially see anything wrong with Robyn there does seem to be an improvement in her general well being and of course she is just like her big sister and taking it all in her stride.
We wish you all a Merry Christmas and Happy New Year.
