As most of you know Kaycee Brooks is 18 months old (corrected age 14 months, meaning if she was born on her due date this would be her age now) She is a surviving twin and was born at 25 weeks and 2 days. Her sister, Corrie (said like the boy’s name Corey, not after my favourite soap … ha) sadly passed away in the womb at 25 weeks.



Kaycee has spent most of her life in hospital. In total she has spent a mere 9 weeks at home on and off, the longest stretch being 10 days without a Hospital admission. She has given the hardest strongest fight of survival and still to this day (01.03.2012) Kaycee is still fighting and literally living life on the edge.



I thought it would be nice to let people know her full background and share her life experience properly, just for future reference for Kaycee to read back on when she’s a big girl and also to help or guide, anyone who will either experience any part of this situation.



The reason for me publishing a blog, with a donation button on is not out of pure cheek, not us being a charity case but simply to raise a bit of money for Kaycee, her future, her care (if we need to seek quicker care privately) travelling and living expenses whilst we hold vigil besides Kaycee. I do not want anyone to think we are begging, I just feel with all the support we have people will understand, and not take pity but want to support us. We are hospitalised and we aren’t living in “real life” and people are always always asking what can we do to help. So I spoke to a support worker and she suggested this and to be honest it has took me a good number of months to actually do this, to sit down and re-live Kaycee’s life and to relive my experience with my other daughter Corrie.



It does bring back a lot of painful but happy memories but also angers me at the same time because I do see it from other peoples points of view, when I sit down and think of our situation and see that we have and are in such a bad position in life. But we have been dealt with these cards in life and we have to deal with that.



I am only as strong as I am because I have the most amazing daughter anyone could ever dream of having and I think this applies to most premmie parents or long term sick children. You truly are blessed to have a special child. I totally believe that we are blessed and I do not wish to change anything in my life. I just wish better health for Kaycee and may be one day be that in 1 month’s time or 10 years we will live a normal happy life as a family at home. But in the meantime I will make sure every 24 hours of my daughter’s life has a special memory. Not only does she inspire her army of fans but she is a true inspiration to us as parents. And the most warmest thought is I have two of these girls, and although Corrie isn’t here, I know she is exactly the same as Kaycee and wherever she is she is being a cheeky girl and making everyone love her just as much as Kaycee is doing down here with us.



I am truly truly blessed to be her mummy.



About Me

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There are no classes in life for beginners: right away you are always asked to deal with what is most difficult.

Back to a ward

5th November 2011 Kaycee was finally off PICU and back to a ward.   This time Kaycee was staying in a little bit longer because her diuretics (for water retention) had to be established before she was able to be discharged.   Because Kaycee is dependent on them this wasn’t easy.   At the same time Kaycee had caught a tummy bug which had made her poorly again, but respiratory wise she was fine nothing was affected.   Her feeds were stopped and started continuously because she kept vomiting.   We also had a tant to the doctors because we wanted things sorting a bit more quickly than they were being.   She was outstanding a number of things and we had been waiting for them a long time and kept getting pushed to the back of the list due to her admissions in PICU.   So the relevant teams were contacted and dates were arranged for Kaycee to be seen.   Obviously nothing is quick in the NHS and being an inpatient didn’t warrant you a quicker referral unless in emergency. 
For weeks Kaycee’s feeds were stopped and started.   They then decided that she was lactose intolerant again.  So they changed her milk feeds.   She started to tolerate these slowly and things started moving forwards again.   We tried to get her feed regime back to normal, Kaycee wasn’t tolerating this now and again her feeds got stopped again.  We felt like were going in circles, just for a change.    The feeds were the only reason Kaycee was still an inpatient in the Hospital, so this to us was frustrating as we didn’t want her to pick anything up and we wanted to get her home for Christmas.  
Two weeks before the Christmas period Kaycee’s oxygen started to go up.   She was poked and prodded again to see what was causing this.   She had caught RSV, something she couldn’t afford to catch really as this could set her back as far as the vent.   We hated her wearing a mask and unfortunately this was the only way forward.   So Kaycee was placed back on a mask again.   When Kaycee gets poorly again she retains fluid so she needs more diuretics.   We were so angry because we just constantly felt like we were getting nowhere at all with her and stuck in hospital.    
ENT were called and asked to look at Kaycee’s airways.   A doctor from ENT came and assessed Kaycee.   He told us she had large tonsils, adenoids and that an op would have to be performed to remove the same.   Finally something we could pin the extra oxygen requirements on.   This might explain all the other episodes, and why she ends up critical.   Obviously this was definitely too good to be true because a Consultant shot us right back down from ENT and said Kaycee was way to young to have these problems and it was definitely her lungs.   My word we was so upset that another doctor had said this and then we learnt it wasn’t that.   That was scrapped.  Back to not knowing why our girl keeps getting so ill other than bad lungs.

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