Home Today

Hello People,
I just got home from hospital today and am exhausted already. Yesterday they started me on strong oral antibiotics while I finished the IV course and it was so strong...I had a bad day of throwing up and feeling awful...so they changed my oral again to another strong one which I think makes me feel a little lousey but not as bad.

I still have some fluid on my left lung, but the infection is clearing up. I have not had a temperature for at least 3 days. I have felt a little better and my appetite is slowly..very slowly coming back...I have been seeing the dietition and have some nutritious things that I took home to help me get back on top of things. I am on the same pain protocol that I was at hospital and we take my temperature regularly...if anything changes we have to go back in pronto...we cannot have me being sick like I was last week when I nearly died...it was serious.

Isaac is really excited to have me home. We have to remind him that I need to have rests but he is excited and fell asleep very early in his own bed for the first time in 2 weeks....knowing that mummy is safe at home and that the next week Alan will have off to take care of us. We are looking into other home help to help me recover as well.

I have to take 12 weeks off of work. I still have that surgery coming up and need to get better for that....I know it will be a long recovery. I was very upset that my counts were knocked out. I never had bad haemagobin but that was knocked out too so I am anaemic and tired. The Goji Juice I take does help though.

I wanted to thank you all for praying for me and leaving messages of support..it has been greatly needed for Alan as well as myself. Please keep praying...this journey of recovery is long and pneumonia is not good for an FA patient...please keep offering your support. I realised how many people care for our family and I am blessed.

Well I am tired and am going to rest. Thank you all....please keep checking for updates. I will be having weekly follow ups with my doctor and blood tests to check my marrow is recovering and if I need help with transfusions. Thanks ....I will fight on.
I love you all.
Charisse

Update From Hospital again

Hi Guys,

I am still in hospital and have felt very emotional when Isaac comes to visit me. He perks up when he sees me and gets excited saying "mummy you are better" and I have to explain that I am almlost better but that I have an infection here in the chest that is not better yet; and mummmy can not come home yet. He gets a big bottom lip and tears swell up and I feel so bad. He has been having some other things that show his worry and anxiety over his mummma.

So today I had a liver / abdominal ultrasound. All came back good but the ultrasound showed still fluid on my lung and so ther antibiotic (IV) must continue to at least Friday and then all will be re-evaluated and then I may be able to go home with a PICC-line in or have just oral antibiotics with weekly follow ups and blood tests....counts have been knocked really low and feel scared about it...right now bloods are taken daily or every second day. I was told today to expect my recovery of my counts and pneumonia to be between 6-12 weeks and that it will be a while...we had to cancel our holdiay...i am heaps disappointed.

It was nice to have mum here today and Darren and Angela visit tonight and Liesl my sister take care of Isaac today. Thanks to our friends and families, and nanny/close friend. Who have been supporting us so much. Densie (nanna)... I think about you a lot and are hoping you are really having a fun time overseas..Love you.

I know that there is a purpose for everything, and God will work all things out for good some how... so keep trusting in Him... I will write more when I am less tired.

Love charisse.

Still In hospital...plodding long

Hello All, Sorry for the late update.

I was supposed to come home on Saturday but the pneumonia flared up. I changed from IV antibiotics to oral at the end of last week, but started to get worse again over the weekend, so they now have me back on a new course of IV antibiotics.

Unfortunately, this means my holiday is cancelled this week, and means i'll be in hospital for the rest of this week with the option to have home-nursing with a PICC line rather than stay in hospital the whole time.

I'm still a little jaundice (yellow eyes), and ankles are swallen (maybe due to my liver being affected, plus all the fluids i've been given). I'm having a liver ultrasound tomorrow, and have given a urin sample to check the status of my kidneys.

i have not enjoyed my week--there's been things which have made me anxious, and i miss Isaac so much.

Thanks to my mum, dad, liesl, tim, darren & angela who have looked after isaac and taken care of our cats while we've been in hospital.


I still feel very lethargic and my energy levels are quite low. My counts (CBC, LFT) have all been disturbed by the pneumonia--the CBC knocked out, and will take a little time to recover.

Until next time... i'll update again soon. (with alan transcribing)

Love charisse.
xx