Saturday, June 25, 2011

Still here....

We are still in the hospital. His blood cultures came back with 3 different kinds of bacteria. His cultures kept coming back positive so they decided to remove his Broviac tube. That was removed on Thursday. Luckily it was only a small procedure that required minimum sedation. While he was sedated the put an IV in his hand so that they could still administer meds. When he woke up he freaked out because he is terrified of needles. It took him most of the day to get used to the IV. The blood that was drawn from his hand was still testing positive. Two of the forms of bacteria are gone and one was proving resistant to all the antibiotics they had already given him. They finally found one yesterday that is working.

Today was a big day for him because of his fear of needles. They had already told him that he was going to have to get blood drawn from his arm so he was very anxious . They put numbing cream on his arm and left it for awhile to numb up the area really well. He did ok and said it only hurt for a few seconds. He was over 3 minutes after they were done. For now we are waiting for test results to come back but that takes 48 hours so we will be here until at least Monday. He is also being put on the schedule for surgery next week to get another port put in.

So it is safe to say that after 7 days he is officially bored! I brought him more legos and more movies to try to make things a little better. We will see how it goes. I can only watch the same episode of a show so many times. I think I have seen the same episode of the Disney shows at least once a day. When are they going to play something new??

Tuesday, June 21, 2011

Blood Infection

As you can guess john is admitted to hospital once again. On Saturday he was really quiet and not talking much. He felt warm so I took his temperature. It was 99.5. He got up and moved to the living room and his fever went away. I was setting up his salt water tank and he still hadn't moved much or even talked much. He told me that his mouth was hurting. He is developing sores in his mouth due to the effects of chemo. About 30 minutes after he went to sleep he woke up and started vomiting. I took his temperature which was 100.8. He was also shaking uncontrollably. We called the doctor and he said to go to the hospital and they would have a bed waiting. They took blood for cultures and immediately hooked up some fluids and started 2 kinds of antibiotics. We knew we were going to be there at least 48 hours waiting for results. About 4:00 am Monday i was told that his blood was growing something but they still needed to identify it.

He spiked another fever with more vomiting about 3:00am that same morning which means they have to take another set of cultures which adds 48 more hours to our stay. If his Broviac ( the catheter that goes into his heart , where he receives his chemo and fluids) is the source of infection it might have to be replaced which is more surgery. They are looking into the options now.

We are now just waiting for more results to move on to the next step. He was supposed to start a five day chemo this week but that has been put on hold.

He is doing good and even took a shower but he is extremely bored!!  I will update again when we get more info.

Tuesday, June 14, 2011

Just an update

I know we don't get on here much but we usually post when there are changes or treatments. So last week we did get to go home Wednesday night. It was late but at least John got to sleep in his own bed. We continued to give his anti nausea medicine but by thursday night he still ended up being sick. We have been lucky that with enough meds the vomiting is only a few days . It doesn't last all day but we never know when it is going to happen. He could be fine and then 5 minutes later he is sick. We have been vomit free since Sunday!! Some people might think its gross to talk about but it is part of our reality.

Yesterday (Monday) he had another dose of chemo. This one doesn't seem to make him sick so at least he gets a break for the rest of the week. Next week is another 5 day treatment which takes about 3-4 hours each day. He also has an echocardiogram on Friday to make sure that his heart is strong enough for the next 48 hour chemo session. The combination of chemo drugs for the 48 hour are medicines that can damage his heart or weaken it. So every 2 or 3 sessions the need to make sure it is functioning properly. Also when he has next weeks chemo he also has to be attached to "his backpack" which is a bag that he carries around with his saline bag and pump for 24 hours a day for a week. This is the round of chemo that can damage his bladder so each day he gets a bag of saline with meds added and then each one after that is just normal fluid. He hates being hooked up constantly and having to pee constantly. Who wouldn't though.

We also had a followup appointment with his radiation doctor and that went well. He believes that his hair should all grow back (after our entire treatment is finished) and that his eye function is almost back to normal. He still has some double vision when looking to the far right. We are scheduled to start radiation on his lungs in about 2 months but the will do a CT scan before then to see how the tumors are responding. We saw a significant improvement from the first 6 weeks of treatment so hopefully it will only get better.

We had a nice night outside in the shade tonight. We put blankets on the lawn and looked at saltwater fish online. We are getting a small saltwater tank that my brother is no longer using. John loves the ocean and all the fish and things that live in it. It will be great for him to have something to help with relaxation. He has recently told me that he wants to be a marine biologist. Of course the kids took a bunch of silly pictures on the computer so I thought I would share a few of those.

They were having such a great time being crazy. We even talked about camping out in the yard since John cant really travel anywhere. We are trying to find different ways to do the things he loves. Tents and sleeping bags and a fire pit for smores! How much fun would that be!!

Hope you all are well and please leave a comment if you have any questions or even an idea of stuff we can do at home so that the kids can have an enjoyable summer. Thank You.

Wednesday, June 8, 2011

Another Chemo hospital stay

We checked in Monday at 8:30 am but his chemo didn't start until 6:30 pm, kinda funny and annoying all at once cause you're waiting all day to get this over with on time so we can go home on schedule, the longer you wait the longer we have to stay here. Monday Poppa Lee and Nanna came up for a visit, and then later on that night Kris stopped in and brought Jamba Juice and said Tyreke was getting ready to go train in Southern Ca for a little while and then would be back, we talked about the next fundraiser at RPM off of bradshaw and hwy 50 and John John liked the idea, then the nurse came in for John John and had to put ointment creme on his previous staph infection sores, one of his sores were on his lower region and she didn't want to put it on there cause it embarrased her and he was awake so that was confusing to me cause that didn't make any sense she's a nurse, I don't know what she's doing being a nurse if she cant handle that, so I told Kris, excuse me I have to do it, when I went to put the creme on his testis the sore wasn't there so I don't know, anyway he was exhausted and fell asleep soon after that.

Tuesday Ange came back to the Hospital cause I had to go to my union hall to take care of paperwork and my nephew was helping me on the house. So Ange stayed with him Tuesday and tuesday night while I watched Jason and Jessica.

Weds. morning I came back to the hospital and spoke with the Dr. Adams about we should get released tonight after 6:30 right?, he said well not necessarily he said he needs to be hydrated first before he can go home and he's probably going to be sick where he'll loose a lot of water you might have to stay thursday and friday, john john isn't happy about that, we weren't either but if it's going to make him feel better and his naseau under control it's what we have to do.