An Update

Ok it is official they aren't going to take out the port. They are hoping that ENT will be in to see us before we are discharged and they think we should be out of here tomorrow or Saturday w/ IV antibiotics at home. He has been very tired and very quiet all day. But Scott (his PCS artist) came to see him, and he perked right up! It was nice to see him smile. I'll update again when there is more to tell.

Donavynn is sleeping again. He has done a lot of that in the last few days, but that is good I guess, trying to fight off that infection. The Benadryl they give him to prevent the RedMan's Syndrome is probably contributing to that too! :)

Update

Well it has been an eventful morning. He has been up and happy and two guys - Jim and Paul from Hugworks were here to sing for the kids. They were great and Donavynn loved to hear the music. They travel all over the country going to children's hospitals. So here are some pics of him from today.


The doctors were just in here and we are still waiting to see what they want to do. They are debating whether or not to hold his chemo, I'd rather they didn't because his counts are good and they didn't hold it last time, but I'm not the doctor. And they are also debating about whether or not to remove his port and put a new one in - again! Because this is the second time that he has had the same infection. But I told them that both times he had an ear infection and this bacteria is very common in the ears, so I would much rather they try putting tubes in his ears first and see if that eliminates the problem because I don't think that the bacteria are living in his port. He has suffered from repeated ear infections since he was a baby and they talked about putting tubes in before but then he got sick. His NP said she was going to see about getting him in to an ENT about that so hopefully she'll be able to do that. I really don't want him to have to go through all of that again w/ the port. It takes forever to heal and he is sore and so on. If it is needed that is one thing but I really don't think it is... we'll see. Again I'm not the doctor. So that is all that we know right now. He is taking a nap at the moment. The day has been tiring for him.

More details and an update

Ok so now that I have had a little sleep I will try to explain all that has occurred over the last few days. As I mentioned on MySpace he wasn't feeling well at clinic and wasn't acting himself so they drew cultures and we were on our way. So Tuesday I went to class and when I get home start to get things settled for the night he spikes a temp of 102.5. I called the on call nurse and she said because of his counts being good they couldn't do a direct admit but to take him to the ER and if he looked that bad they would be just as concerned as I was. So instead of taking him to our local ER like we usually do because then they just put him in an ambulance and ship him up here anyway we decided to cut out the middle man and drive the 2 hours to Mercy's ER. I have never been so disappointed in this hospital as I was that night. It was awful from the condition of the room when they brought us back to the way the nursing staff treated us. Needless to say I was not happy and I let them know it. After screwing around all night long they decided to send us home at 5 am. So this upset me because first of all I knew that his cultures would grow, I knew something was wrong and I told them that and I had been up for literally 24 hours and was really concerned about making it home alive. But they insisted so we left, obviously we made it home ok but it was not a good ride. I will never drive that tired again. So we went to bed when we got home and as soon as we got up in the afternoon the doctor called - his cultures grew! I was so angry at them. So now we threw everything back in the car and headed back up for the 3rd time in 3 days. If they just would have listened to me. I complained to the ER nurse while we were there and she asked if I wanted to speak to the doctor - I told her that I would just speak to Dr. Shore the next day because he has learned not to doubt me. That sounds rude but he used to doubt me until he learned that every time I said there was something wrong, I was right. So that was our fun/drama/crazy filled time. Last night we had to sit in the ER to wait for a room to open up and the nurse that cared for us helped to redeem the hospital in my eyes. She was wonderful and more like I'm used to seeing at this hospital.

One of the doctors just left, he has Strep Pnuemo just like last time, like I figured. They are guessing it is from his ear infection again. So Nancy his NP is going to try to schedule him w/ and ENT doctor and see about tubes. Ear infections have been a steady problem for him since he was a baby. But they said they are always booked so it may be awhile, we'll see. His ANC is down to 7000 which is good, in my eyes because it was 10,000 on Monday, 11,000 on Tuesday so I was worried I don't want it to be that high because of what that can bring on. So he seems better this morning, he was ok yesterday too just tired. We are waiting for his breakfast and hopefully he will eat. And they said as long as he drinks they won't hook him up to IV fluids so I'm pushing the fluids really hard because it is difficult for him to play while hooked up to the fluids. Ok, his breakfast just arrived so I'll go, I'll update as soon as we know more. Thanks for the prayers.

What a week!

I'm going to make this quick because I have had 5 hours of sleep in the last 36 hours. We spent all night at Mercy's ER. Only to be discharged at 5 am against what I wanted. I told them that there was something wrong - this afternoon the doctor called - his cultures are positive. G big shock! So back up we came. We just finally got into our room after waiting for 5 hours in the ER for a room to open up. I'll fill you in on the details later but for now I just wanted to let everyone know that he is doing better - we are both very tired and that I will keep you updated on any new developments. Chances are we'll be home in a few days w/ more IV antibiotics. But we'll wait and see. If there are any questions feel free to leave them in the comments section or if you have my personal email drop it there. I can't access myspace from the hospital so I won't be able to read any of the new messages that I am getting - my messenger keeps popping up and telling me I have new messages but there internet keeps blocking me from the site! Grrrr! Oh well. So all is good - hopefully we'll get some sleep. Goodnight!

Home From Clinic, waiting on cultures

Well we are finally home from clinic and it has been such a long day. After the crazy busy schedule that I have been leading I have decided to do my best to blog in both places because I know that some people just don't have the time to check the other site. If you are like me you log on here check your messages and check on your friends and log off. So I'll just do a copy and paste. However, if he ends up in the hospital updates will be on his blogspot, since MySpace is a denied site at Mercy.

My poor little man hasn't wanted to eat today and he has been really clingy and tired - very unlike himself. He wouldn't even talk to Dr. Shore today and that is really unlike him. So I have been worried anyway. Then we get his blood work results and now I'm worried again. His total white count is 11,310 and his ANC is 10,001. Way higher than it should be! They like his ANC to be between 1000 and 2000. So we were trying to figure this out. His meds are the right amount for his size and the only other time his counts did this was in February when he had that infection. So they drew cultures and we are at home waiting to get the results. I won't be the least bit surprised if they are positive. He is laying on the couch right now, not wanting to be bothered. I felt so bad for him because he didn't have to have his LP today so they just accessed him, drew labs, pushed the Vincristine and de-accessed him. Then we get the lab results and they decide to do cultures so he had to be reaccessed, this time w/o Emla. But he handled it like a champ as always. His ears (both) are red around the drum, not the tympanic membrane itself, just around it. So they don't want to treat that unless they have to - Dr's are more hesitant these days to use antibiotics because of all of the resistance that is developing. Which I understand but if he does have an infection my guess is that is where it came from again. I just took him temp in his ear and it was 101 - my guess is that is from the inflammation - that releases heat so you don't get an accurate read. So I did it under his arm and got 99.5 - it was 98.2 at the hospital so it seems to be on the rise. I'm under orders to call if it keeps rising and we'll go from there. My guess is because his counts are good and cultures have already been drawn that they'll just have us give him Tyelenol tonight and bring him up in the am. But we'll see. As much as I hate being at the hospital, in all honesty I wish they had just asked us to stay because the extra trips up there are really gonna kill us. But we'll do what we gotta for our little man. I just hope he starts feeling better soon. Please say a few prayers for him and for me. The stress of worrying about him constantly is starting to get to me. I have been worried for weeks... every now and then I just worry about him more than usual and now it appears I have reason to so the prayers would be much appreciated. I'm rambling I think because I am just so completely drained! I hope I got all the details for you. I'll keep you posted. Oh yeah, because they were high they also want to check his counts again in 2 weeks. That may change depending on whether or not his cultures grow. I'll keep you posted on that as well.

Spring Has Sprung!

This is Donavynn the bandit! lol He and Cheyenne were playing earlier. I thought it was far to cute not to get a picture of.

Well it seems that spring has finally arrived here. And it is about time. Usually we are mowing the yard in February but this year it has just been nasty. So we all got to get out into the fresh air yesterday and get some yard work done. Donavynn was working hard helping daddy. I just love that he is so enthusiastic about helping. We are enjoying it while it lasts. But Donavynn was thrilled to help clean stuff out because we are trying to get rid of some of the old landscaping things and redo what we can when we can. So it will be a slow process but Donavynn seems happy to help along the way. I think he was just happy to be out of the house. That is really all that is going on for now. It has been pretty uneventful here - which is how we like it! School is going good for me, and the semester ends in less than a month now so I am excited! I got an 86% on my last pharmacology test - what she said was supposed to be the hardest test of the semester so that made my day. So far I am maintaining straight A's! Lets hope they hold!

Donavynn finishes school the same week I do. I think he is going to be sad when he doesn't have that to look forward to every week. But he'll be going 5 days a week next year. He learned so much just from 2 days a week I can't imagine how much he will learn being there everyday! His growing mind is just amazing! Everyday he says something new. He has still being singing Kumbya, that seems to be his favorite song.

Right now he is occupying himself on the floor with his cars. I love listening to him play. He talks to himself and comes up with the cutest little stories for his toys. What is even better than that is watching him play with Daddy. They are just too cute together. And Donavynn's face just lights up when Daddy comes to play. Well I better get going - there are things to be done. Hope that the weekend is going well for everyone.