January 29, 2012

Well, hard to believe that January is almost over. I guess it kinda is.

Cody has recovered completely from RSV, thank goodness and starts back to school tomorrow! He is anxious. We took a ride yesterday so he could find his way around and buy the books...ugh!

He feels better. He is taking 5 classes since he took January off to work the hockey games. He was able to work a few but was sick for most of it. Funny how things work out.

So he is sleeping in today and we will organize his stuff so that he is all set for tomorrow.

We are excited about Casey and Nicole's upcoming visit at the end of February.

My brother and his family usually come to NY around the Feb break but they are not this year. It already seems weird without them. But they always hope it snows when they are here so looks like they made the right choice with the winter we are having.

Hope everyone had a nice start to the new year!!

PS. really love this pic of my handsome boys!

January 20, 2011

So here comes our first snow this year. I would like a little.

Cody is returning tonight from a short visit to Canada. He did not do much there but at least he was able to go away and fly on his own. I missed him for sure.

He has recovered from his virus and is back to eating on his own and hopefully gaining weight. We are trying to get a follow up appt with the new long term drs. For some reason, they really want him to see the long term dr. It is really hard scheduling it.

He is back working with the Islanders which he LOVES. Casey was away this week doing training and he is due back home to his wife this weekend. He and Nicole are coming on the 24th so it will be nice to have them here too.

Enjoy the weekend and the snow, my LIer's.

January 16, 2011

Monday-Martin Luther King Jr day.

Well, we are back on track. Cody is better and worked the game on Friday and all day today. He is pooped but he did it! Not happy that he did not eat today but will catch up tonight with the feeding tube. So glad he is feeling better.

He is going to Canada on Wednesday to see his dad. He will be returning Friday night. Not a long visit which I am glad about. This is the first time he is flying alone since he has been sick. He will be fine. I will be at work so that will keep me busy.

Hope everyone enjoyed their 3 day weekend.

January 11, 2012

So here it is the 11th of January already!! Crazy.

Well, we did go back into Sloan last Monday because Cody sounded so horrible. We had to go to Urgent Care there but the good news is that it was not pneumonia. No new meds, we are told it is just part of the recovery period from RSV.

So it was a slow week so far and with Cody still getting a tiny bit better each day but now with head and ear pain. So after numerous emails to his doctor, he took a car service and went to see his main dr yesterday. We saw several doctors on the team but now I think his primary dr wanted to see him. SO he does have sinusitis now and fluid in his ear. He is back on another antibiotic and nose sprays and there is a cough medicine with codeine that I did not even fill because I know he will not take it. He is nibbling on food so thank goodness we still have the feeding tube. Thank goodness he took January off! He did not get to work the hockey game last night but maybe Thursday?? He missed his trip to Canada and maybe he will go for a few days next week.

Casey is back and in the swing of things. He is doing extensive training as he will be deploying again. Doesn't make sense to me but who am I? He is coming to the NY area at the end of February and we will see him then. He and Nicole are going to Canada for a few days too with her parents. I am really looking forward to some time when we can just be 'us'. I am planning a cruise next year for my birthday so that might be the best time. I worry each day about him but he is smart and doing what he likes.

Work is good. I have a great class. I enjoy seeing my great friends each day. Hoping this all continues for 2012.

December 31, 2011

Happy New Year's Eve...been home with Cody. Debating last night and today on whether or not to go to Sloan so they can listen to his chest. He is getting better, slowly I think. Just an awful cough and trying to get stuff up. We go back on Thursday for a re check. Nice quiet night at home. We watched hockey today and about to watch a movie before the good shows start tonight.

Here's to a happy and healthy 2012!!

December 30 2011

So not the best day yesterday. After getting home from the port removal and g tube changed, we started up the feeding tube only to find the new one is leaking. They changed it under anesthesia because of what happened a few months back when they went to change it and it was off track and he went through hell until they finally had to put him out to do it. He got several immunizations including the dpt. So we used the feeding tube and had a washcloth to catch the leakage and then our plan was to go in in the morning for a change. We kept it without food or drink after midnight in the event they needed to put him out.

He was a mess anticipating the worst.

So we are driving in yesterday and he is telling me he is really thirsty, understandably so. So once we got in and were at the elevator after a long walk, he is feeling worse, and I am thinking he is dehydrated. We get up to the floor and he is not feeling good. His heartrate was high and his pressure was low. And then the fever comes. He does this huge cough in the exam room and they swab his nose and to see what that is from. So we start some fluids and his blood is taken. His counts come back pretty good, not really dehydrated. We checked the tube and it is not leaking. Surgery checks in on us twice and we find out that he cannot get anesthesia today. So he starts perking up little by little. Finally the dr that changed the tube yesterday convinces us that she can do it in under 10 seconds, which she does but he is a mental mess anticipating the worst from his prior experience. Two drs come in and set up. The change is not painful, just feels like your insides are being pulled out through this hole in your belly. He is silent. It is done and it is successful. He starts to cry once it is done. It was so stressful last time and he was so nervous. He talked to his dad and the plane was switched to Saturday supposedly. Then we are preparing to come home and his regular drs come in to say he has rsv virus. This is contagious and could get worse before it gets better. He is not happy and this was the day we shared a water bottle, great! So now we leave and he is upset about missing his trip but he really can't go. So he tells his dad and that is canceled and we make the ride home. His fever spiked again but he does not seem any worse. He is still sleeping of course, so we hope the day is ok...wish us luck and stay healthy. Hey, I am always better when he is here, but not when he is sick. :(

December 28, 2011

Mediport is out!! All went well. Still concerned about the non weight gain but working on it with the feeds. Still have the g tube for awhile. He had a long talk with Dr. Small today. She is great! He is worried about his weight but she gave him a huge pep talk.

Through one of the support websites, I connected with a family and they had a daughter Cody's age going through the same thing. She is the same age as Cody and actually did the graduation with him too but they did not really know each other. Anyway they connected on facebook and finally met today. She is from NJ, orginally from Israel and is a beautiful girl. She does not walk so well and is in a wheelchair. Maybe they will keep in touch. Sweet!

Home and he is sore. He also got some shots, DPT, one for meningitis and a inactive polio one. We did it while he was still groggy but he felt it. He feels beat up tonight.

Started his feeds early and guess what-they changed to g tube and it is leaking. We did a little test at home but nothing helped so we are going back in tomorrow to have them look at it. Not happy and he is very anxious about the change and not be under anesthesia. It is not painful but he had a really BAD experience. Since it was changed today, and all went well it should be fine!

We are not eating or drinking after 12 just in case they need to do it with anesthesia.

Cody's cousin's were there today too.

Long three years and glad we are moving ahead.