Connor is scheduled to have his port put into his chest on Monday afternoon and the doctor performing the surgery came last night at 10 PM to have me sign the release form and also counsel me on the possible complications of this surgery. It really is rather minor in a normal sense however the worry for the doctor and anaesthesiologist is the fact that Connor is on high doses of steroids which suppress his immune system and therefor his body does not heal like a normal person. Even a small cut will take a long time to heal at this stage. He also is not able to fight of an infection very well which is the big worry about all of this. If his incision should become inflamed or infected we would have a bit of a problem and the port would need to be removed again. There also is concern about his problems swallowing since they have to put a tube down his throat. He is however doing a lot better in that department then he did 10 days ago!
The other part that has nothing to do with Monday but will effect us in the future is our worry to not have Connor exposed to anyone that is sick. He will be on this medication for a long time and catching anything at all while his body is unable to fight it could be a battle for him.
On a lighter side at 10:30 last night we all had a funny episode on our floor. Connor was sleeping, our room neighbors were watching a movie and I was just getting ready for bed when all of a sudden I could smell something bad, just like old sweaty socks. I got up and went to smell Connor because he has had such bad night sweats that he will be soaking wet and I have to towel dry him and his hair each night. He smelled fine however. I smelled myself but knew I had just taken a shower. I went and smelled around the bed and that garbage... nothing. By then our room neighbors were up as well smelling everything on their side of the bed and we could not pin point it...... Henry's Dad finally went out to the Nurses Station to tell them when he discovered they already knew because the whole floor smelled like old socks. Something must have gotten into the venting system that effected just our floor because Connor woke up and asked to go on a ride in his wheelchair to the 9th floor to look at the city lights and the 9th floor smelled just fine. Luckily for all of us it only lasted for about 40 min and we were back to normal. The laughter came later when we all joked about thinking who the smelly one was in our room :) :) :)
The rest of the night was peaceful with just the normal interruptions and the late night snack when Connor requested to eat Chili at 11 PM.
I still can't believe we are at day 10 now!!!! time here really does go fast....
We also had another weigh in for Connor and today he was at 19 kg.
Connor was sad to see his room-mate leave today but we were happy for Henry that he got to go home. Henry was the sweetest 14 year old boy we have ever met. His parents were wonderful as well and we are lucky to get to know them.
Alexander had a fun, fun day at the Lincoln Zoo today with Erin and said the Polar Bears have been his favorite as well as the Penguin's. They had lunch at the Zoo and were lucky to see all the animals. After the Zoo they went on a bus to a place called 'Molly's Cup Cakes' for some dessert and then best of all they brought back some cup cakes for Connor, Ron and I!!! and I might tell you they are the best cup cakes I can remember having... heavenly.... So, you can see that Erin is definitely a keeper :) They are now on for lunch on Monday which will include Pete, another Doctor from Dr. Pachman's Research Team :)
So, and Connor made another friend, Wanda, who works in the cafeteria. You know it is always good to have a contact who works in the food industry :) Ron and I are trying to figure out really hard how to appropriately thank everyone that has been so wonderful to us here, at home and family and friends from more far away..... It is so hard to put into words how all of this has brought us so much closer to everyone we love and caredabout already...
So this is it for tonight. I am so so tired and I am not sure how but from when I started typing to now our youngest son has once again moved from his bed into mine for the night.... :)
Hugs,
R A C A
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