We were told there will be just one test done this morning which will be a Cat Scan. He already saw most of his doctors this morning and the good news is that he will not have to be moved to the NICU to support his breathing :) They still would like to schedule a sleep test down the road but for now we have nothing to worry about in that department.
The medication given to him since yesterday make quiet an impact already and I will post some picture's later. We took Connor for a walk around the hospital in his Wheel Chair and at one point Ron took him out and asked him if he wanted to push his own wheel chair. He walked all the way to the big picture window that over looks down town Chicago. This was the most walking we have seen him do in over one month and a half!!!
And of course we also were informed about all the Side Effects that will or may occur from the medicine he is on. One of them is his being very, very hungry. So now his request for lunch is a Fillet of Fish from McDonalds... trust me when I tell you this is something completely new!!!
As to the side effects. We will have to keep Connor on a low sodium and low fat diet to combat the high blood pressure and control the weight gain he will face. The drug will also effect all his organs and one of them will be his brain. So we need to be prepared for some mood altering and according to the Doctor I talked to last night this might go from sad, to depressive, to angry and tantrums to the opposite and complete euphoria. They have seen every spectrum and you never know where he will fall into. The other concern but it is very rare is Diapetes. His eyes will have to be checked twice a year for cataracts.
I am sure I forget something right now... a lot of information....
Alexander and I did great at the Kohl's House last night. We went downstairs so he got to play in the playroom while I caught up on e-mail and the blog.
Up-Date: It is 6:40 PM right now and Connor decided to go to sleep. He told us he was tired and to please turn of the TV. He said his goodbyes to Papa & Alexander and is laying there very quietly. The day was a big adventure for him since he got to go for lunch downstairs in his fancy wheel chair and got to spend a couple of hours at the Children's Play Center. Alexander loves this place so much that he was very upset when he was told they were closing at 5 PM on the weekend. He made some friends and is now mastering the Play Station Star Wars Lego Game, I think he will dream about this tonight :) There also was a fun interactive theater play for the kids this afternoon and both Connor & Alexander laughed out loud several times.
So and the scheduled Cat Scan did not happen today due to Connor not wanting to participate anymore. He has been a trouper thru it all but finally said he had enough. They will now check to see how important the cat scan is and if the doctors want it then it will happen with anesthesia.
When I catch my breath I will work on a way to properly send a 'Thank You' out to everyone that has helped us a long the way.
Hugs,
R A C A
Good to hear Connor was able to walk more than he has in a long time. I didn't know they still had Filet of fish sandwiches at McD's. I haven't seen them on the menu in years.
ReplyDeleteOh they got them... trust me if I lived it ANC and had all the fresh seafood you have I would not aim for a Fillet of Fish from McD's - haha
ReplyDeleteI can sense exhaustion in all of you, and good for Connor for actually saying it. :-) Thinking of you!
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