July 7, 2010

Wednesday-So I was up early and went online to start planning this trip. Somehow I was re directed and decided to check out private jets. I even went through the army resources and called Casey's recruiting office. I sent several emails and made a few phone calls and spoke to a nice person at Angel Flight. Well, it looks like we have a plane to take us! I am working out the details and trying hard to make this happen. We have to get medical clearance and work this out. It is not a big plane, no bathroom but stops every 2 hours. It will take longer to get there as they do not fly as fast. So I started the process with the drs and am keeping my fingers crossed that this will happen. I will fill you in later...keep your fingers crossed!

July 6, 2010

Tuesday-We headed into the city around 1 today. Cody tried Chipolte but was happier with his sub. We had a quick ride in until we hit the bridge. We were then re-routed and it took us a while. Once there, Cody got set up in the IV waiting room and was just standing because they chairs were too hard for his butt and his back went. He cried and I had to hold him up even while he was sitting. I popped a valium in his mouth and we waited for it to work then got the bloodwork. We waited for a wheel chair and decided to take a desk chair on wheels to get him to the drs office. Once there, Dr. Kernan was upset to see him in so much pain. We talked about what to give him and came up with dilaudid. He was injected in his line and worked rather quickly. We are taking that home with us and we need to keep the pain under control. Then they attempted to use freezing spray on his bottom to check the fistula but that did not work. He cried out in pain, yet again. It was discussed that we cancel our specialist appt with GI and we will put him out on Friday and they will take a better look. We went to see the orthopedist and we discussed his compression fractures. He needs more Vit D so have to do some injections at some point. He has some nasal spray to start with so hopefully that will work well. We are decreasing the steroids and this too shall work. The idea of looking inside is to make sure there is no inflammation and we can cut down more on the meds.

It was agreed we could go on Wednesday to see Casey. Trying to work out details and I need a passenger. Any takers?

July 5 2010

Monday and sooooo hot. I did sit out early and read for a little while. This seems to be my time for now. Cody slept till around 12 today. He got up and chilled. I ran around today and got a deep fryer hoping I can make the onion rings he wants. He ended up eating later today but did well, VERY well with drinking. I am anxious to see how he did when we go in tomorrow.

Quiet here and that's the way I like it!

July 4, 2010

Sunday-Happy 4th. And it is a hot one.

I have been sitting out back while Cody sleeps, trying to get some color. The heat feels good, for a minute. Cody gets up around 12-1 and we try to get something to eat. Then today we went to see Toy Story 3. Cute movie. I realize how much Cody still needs me when he sits there in the theater and puts his head on my shoulder because he gets tired. His body is working so hard and his immune system is working overtime. He needs his sleep and since it is often interrupted I let him go till around 12-1. We have a busy week ahead with drs appts in the city on Tuesday and Wednesday. Don't have to get up early which will be nice but still have to head in.

We did not see any fireworks but thanks to Dayle, we had some sparklers. Always thinking of us.

July 3, 2010

Saturday-What a lazy day! We hung around most of the day then took a ride later and went to eat at TGIF's. This is Cody's question each morning "Where are we going to eat?" He eats a bit too. He wanted pasta and meat sauce so I made that later but that did not hit the spot so that was trash. But he did eat a chicken wing. We are allowed to eat out at decent places and we just tell them that we need things well done and out ASAP.

Quiet day for us but a good one.

July 2, 2010

Friday-Well thank goodness we did not hit traffic heading in to the city today and out. I really thought we would have with it being a holiday weekend.

We saw a dr on the team and got a little info. She said we cannot decrease the immunosuppressant meds until we know this fistula is not a result of inflammation in that area and is not a result of GVHD. Not sure when that is going to happen but maybe next week. She still thinks we can go to GA. Let's hope so. I emailed our dr at NYU and asked him to please get us in to see the gastro he recommends and he did. We see him on Wednesday. He said it was best to see a GI specialist and not one that is dealing with just cancer. I have said all along that Cody does not have cancer there so we need a specialist. Tuesday we see the orthopedist at Sloan and then Wednesday the gastro.

Cody feels good and we got some new pain med, morphine, and it will not knock him out as the codeine does. He is worried about becoming addicted but I assured him that I would see that that does not happen.

We went to eat and he ate popcorn tonight and he is trying to drink more too. He took a little nap today in 'my' chair. He sleeps in 'my' bed and now has taken over my chair. We sat outside for a little while too. He likes that.

I rented a transport chair for him. It is like wheelchair but lighter and will help him if he cannot walk or we need to go long distances. He had a bit of an accident so I think I have him convinced to wear depends or something so he does not have one while he is out and waiting for a bathroom or one is too far away. He is really being strong about all this and it has to be humiliating. I feel so bad sometimes but he is strong for sure.

We are really hoping we can go to see Casey. Sue and Emily next door solved my dog problem and said they would take care of both of them. Emily likes to play with them and that is a big help. I used my resources and emailed a few people that might be able to put us in touch with someone with a corporate jet. We would be able to fly that way. That would be amazing!

Well, have a great weekend and we will catch up tomorrow. We have no plans which is a good thing.

July 1, 2010

Thursday-Happy July. Today was an ok day. I got up nice and early and went and got my car checked out to make sure it is all in tip top running condition, just in case we do get to make this trip to GA. Nicole came over to say goodbye as she and her parents were driving back today. We went to lunch and Cody was able to get out. We got back and it was so nice out, I brought the lawn chair out front and Cody said outside for about 2 hours, in the shade of course. Emily the little girl next door came out, Cody was working on his new puzzle cube and we just hung out. He looked nice and relaxed. We came in and relaxed for a bit and I ran a few errands. He ate a little more and took a shower and went to bed around 7:30. He was in a bit of pain so he needed pain medicine. Hopefully the night will be ok.

I checked into a few things today and one was getting a 'companion' to come here while I go back to work. It sounds like it is a good deal. It is not a nurse but someone here. As it is now, he cannot walk unassisted (his back) and needs help on and off the toilet. He needs someone here so we are working on that.