Ryan, Coco and his 563 Bravery Beads

WELCOME TO RYANS WEB PAGE.

Ryan was diagnosed in 2002 with a rare genetic disorder called Fanconi Anemia (FA) he is expected to develop aplastic anemia which means that the bone marrow will stop producing red and white blood cells as well as platelets, the only cure for the anemia is a bone marrow transplant which we are very fortunate that my youngest son Tyler is a 5/6 match.
FA paitents face a long battle to get through this horrible disorder and if successful they then face high chances of secondary cancers.
Some FA children have birth defects and some don't. Ryan was born with no thumbs and has since had 2 major surgeries where they use the index finger to make thumbs this is an amazing piece of surgery, he is also shorter than most kids his age and is having growth hormone at the moment to see if it makes a difference we have seen good results so far.

This page is to keep family and friends updated with Ryans progress on this long road to recovery.

Journal

Wednesday, May 14, 2008

Operation number 2 complete

Ryan had his abscessed tooth out today while he was under they fixed up a couple of things also. When I went into recovery he wasn't to happy it was his head that was hurting more than the mouth. I guess with having two operations in a week its taken its toll, his head was hurting so much he was hitting himself.
So he came out with a tooth missing, swollen lips, massive headache, sore jaw which now looks bruised, and 2 IV lines obviously 1 didn't work and the other well I don't know what they did but there was a lot of blood under the bandage and around his hand. He is feeling a lot better now which is good because if hes up to it we have been given tickets to Elton John's concert tonight from CCF.

Oh forgot to say when we were in theatre he was lying on the bed with the mask on his face there were eight surgical staff around him he was just about asleep and he said three words, I looked at the anesthetist and said "did he just say what I though he said" they all cracked up and said "yes". Just as he was closing his eyes he said "F$@# F%#$ F#@$" gave them a laugh for the day.....Nana and Grandad close your eyes and don't read that part hahahahaha

Hospital Information:

Patient Room: ward 27B

Starship Childrens Hospital
Grafton Rd
Auckland, New Zealand
09 3794949

Links:

E-mail Author: janinegodfrey@xtra.co.nz

---

 

Your gift will help millions of people stay connected with friends and loved ones during challenging times.

---

 

This page has been viewed 23030 times.

Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.