The doctors just left and are very pleased with his turn around. He has his appetite back 100%, he is active and playful and he has now been more than 30 hours without a fever!!! So all that they wanted him to do he has done. His ANC is still low so if he were to spike again we would be heading back, but we are going to pray that the worst is over and that the improvements will keep coming!!! I'm gonna go pack our stuff up, we'll be out of here sometime this afternoon. Thanks for the prayers!
Please Pray:
1. That he will continue to do well, and the fevers will stay gone so that we can stay home!!!
Monday, June 30, 2008
2 Steps Forward
Dear Lord,
There is a part inside of me that is broken, please touch my heart and help me to heal. Amen
Donavynn vomited twice today, I'm thinking it may have been in part because he hadn't eaten in so many days and then he just ate too much instead of taking it slow. But they gave him some Benadryl to help with the nausea. For dinner he had 2 pieces of toast and 2 plates of chips and he has held that down. To drink so far today he has had 20 oz ontop of the 60 ml (2 oz) an hour he is getting IV. He has only had 2 BM's today so he's slowing way down. They still aren't normal but they aren't coming every 10 minutes either which has helped his bottom to heal, along with my wonderful care. :) And *drum roll please* in 1 hour he will be 24 hours without a fever!!!! For some reason I thought he had a fever this morning but the nurse checked the vitals again and said that the last time he had a fever was at 1:30 am, my days are all running together. When the aid just checked his temperature he said "cool as a cucumber" And now Donavynn has been repeating it. lol So the other news is that he has been sitting up and coloring and playing with his trucks tonight. And laughing and playing and acting like Donavynn again!!! It is so great to see more of that smile and hear more of that wonderful laugh that I have missed so much. I am hopeful that we may be discharged sooner than I was originally expecting. That would be fantastic! It is possible (but not likely) that we could be out as early as tomorrow, but I'm not going to get my hopes up, a much more likely discharge date would be Tuesday or Wednesday - provided he continues to improve. And he has been improving in leaps and bounds so I know all those prayers have been working! I'm gonna hit the sac, I'll post again in the morning when we have some news.
Please Pray For:
1. Continued improvements in healing of his skin breakdown, in his appetite, and in his diarrhea.
2. That we will have our answers soon or that he will at least be better so that we can go home.
3. That the nausea doesn't return and he will be able to hold down all of his food.
4. That he will remain fever free, finally! :)
*For anyone that I haven't been able to call, please understand that while we are in the hospital our days are filled with so many things from trying to get some rest to cleaning up messes every 5 minutes, talking to doctors and nurses, etc. Our time is limited and often when I do have time to make a phone call I'm lucky if it lasts for 5 minutes before Donavynn is screaming because he needs to be cleaned up or he just needs something. This is why I have the blog, so that people can check in and get updates and I don't have to make a dozen calls. It is also nice because if I get interrupted (which I often do) I can come back to it later and finish what I was saying. If you check back often and there aren't updates that is usually a good thing, that means all is well and we are busy having fun and enjoying our summer. I do believe (don't quote me on it) that you can subscribe to the blog so that you will be notified if there is a new posting. I believe it is at the bottom of the screen if you scroll all the way down. I'm not 100% sure on this because I'm still pretty new to blogspot and trying to learn all the ins and outs. It has it's good qualities but it also has some things that I don't care for as well, but we are adapting because I don't want to switch sites yet again.
There is a part inside of me that is broken, please touch my heart and help me to heal. Amen
Donavynn vomited twice today, I'm thinking it may have been in part because he hadn't eaten in so many days and then he just ate too much instead of taking it slow. But they gave him some Benadryl to help with the nausea. For dinner he had 2 pieces of toast and 2 plates of chips and he has held that down. To drink so far today he has had 20 oz ontop of the 60 ml (2 oz) an hour he is getting IV. He has only had 2 BM's today so he's slowing way down. They still aren't normal but they aren't coming every 10 minutes either which has helped his bottom to heal, along with my wonderful care. :) And *drum roll please* in 1 hour he will be 24 hours without a fever!!!! For some reason I thought he had a fever this morning but the nurse checked the vitals again and said that the last time he had a fever was at 1:30 am, my days are all running together. When the aid just checked his temperature he said "cool as a cucumber" And now Donavynn has been repeating it. lol So the other news is that he has been sitting up and coloring and playing with his trucks tonight. And laughing and playing and acting like Donavynn again!!! It is so great to see more of that smile and hear more of that wonderful laugh that I have missed so much. I am hopeful that we may be discharged sooner than I was originally expecting. That would be fantastic! It is possible (but not likely) that we could be out as early as tomorrow, but I'm not going to get my hopes up, a much more likely discharge date would be Tuesday or Wednesday - provided he continues to improve. And he has been improving in leaps and bounds so I know all those prayers have been working! I'm gonna hit the sac, I'll post again in the morning when we have some news.
Please Pray For:
1. Continued improvements in healing of his skin breakdown, in his appetite, and in his diarrhea.
2. That we will have our answers soon or that he will at least be better so that we can go home.
3. That the nausea doesn't return and he will be able to hold down all of his food.
4. That he will remain fever free, finally! :)
*For anyone that I haven't been able to call, please understand that while we are in the hospital our days are filled with so many things from trying to get some rest to cleaning up messes every 5 minutes, talking to doctors and nurses, etc. Our time is limited and often when I do have time to make a phone call I'm lucky if it lasts for 5 minutes before Donavynn is screaming because he needs to be cleaned up or he just needs something. This is why I have the blog, so that people can check in and get updates and I don't have to make a dozen calls. It is also nice because if I get interrupted (which I often do) I can come back to it later and finish what I was saying. If you check back often and there aren't updates that is usually a good thing, that means all is well and we are busy having fun and enjoying our summer. I do believe (don't quote me on it) that you can subscribe to the blog so that you will be notified if there is a new posting. I believe it is at the bottom of the screen if you scroll all the way down. I'm not 100% sure on this because I'm still pretty new to blogspot and trying to learn all the ins and outs. It has it's good qualities but it also has some things that I don't care for as well, but we are adapting because I don't want to switch sites yet again.
Sunday, June 29, 2008
1 Step Back
Well all that eating this morning didn't sit so well with his tummy so we had quite the mess to clean up. But the good thing was that because he vomited all over his dressing they just deaccessed him so I could give him a bath and reaccessed him after he was clean. Bed baths are good but a real bath is great and nothing compares! He still is very happy, smiling and laughing, he even played a little in the tub. But maybe he just put too much in there to quickly. I'll keep you posted.
Babysteps in the right direction on day 5
The doctors just left and all tests are still negative, we won't know about the parvo till tomorrow though. But we did see some improvements last night that have grown and spread into today. His appetite is better, he is snacking on muffins and gold fish, even had a pop tart this morning. They are going to decrease his IV fluids in hopes that then he might want to drink as of right now he is only taking sips here and there, likely because with all the fluids he is hydrated so well that he doesn't feel thirsty at all. He was up much of last night, but not in a bad way. He took an early night nap and then wanted to be up playing with daddy into the wee hours of the morning. As far as I know he didn't have any bowel movements last night which is a huge improvement and this morning he actually asked to go to the bathroom. This was the first time in a few days that he had been out of bed, so that was huge too! We are still seeing the same consistency, an improvement but not totally better yet. And the best news of all - NO MORE BOOTY PAIN! He always tells me when I have to clean him "Mom, don't hurt the bootay!" lol But today you can still see that there is some breakdown but it is getting better every day and the pain is gone so that is a really good sign. His ANC is up to 563, so we are headed in the right direction. They said he still isn't ready to go home yet, but we are moving in that direction. So lets hope for a Monday discharge. He misses his cousin Derek and his Nana like crazy so we want to get home so we can spend lots of time with them. I won't get my hopes up because a discharge tomorrow isn't likely, because he did have a fever this morning. But it is possible provided that the fevers don't come back anymore and he continues to show improvements in all areas like he has.
We are going to take a nap now, I'll update later if there is anything new to report.
Please pray for:
1. No more fevers
2. Continued improvement in diarrhea and breakdown healing
3. Continued improvement in his appetite and overall attitude (we have seen more smiles today than we have seen in 2 weeks!)
The prayers are working, and I thank you all so much!!!
(Angela, I posted a comment to the last blog for you)
We are going to take a nap now, I'll update later if there is anything new to report.
Please pray for:
1. No more fevers
2. Continued improvement in diarrhea and breakdown healing
3. Continued improvement in his appetite and overall attitude (we have seen more smiles today than we have seen in 2 weeks!)
The prayers are working, and I thank you all so much!!!
(Angela, I posted a comment to the last blog for you)
Saturday, June 28, 2008
Day 4 Update
Ok where to begin. We still aren't sure of anything yet but we have learned a bit today. He got blood this morning because his hemoglobin was low (7.7). His other counts are starting to come back up - his WBC is 1.14 (1140) and his ANC is 240. So because the other cells are recovering and the red cells are not the decided to do another viral test for parvovirus B19 don't be confused, like I was, this isn't the same parvo virus that affects animals, it is actually the virus that causes fifth disease. They don't think that that is what it is but they wanted to check anyway because he does have some S&S of that (low reticulocytes, slapped cheek look even though H&H is low, diarrhea) the good thing is that if it is that they can help him a little. Being a virus there isn't much that they can do but they can give him IV Ig to help give his immune system a little boost to kick it in the ass. The down side is that now we are on contact AND droplet precautions!
I'm not overly thrilled with the aide today. Dave was able to make it up last night which was nice, he gave me a little birthday break from the hospital. While I was gone he told me that the aide cleaned Donavynn's butt and instead of patting she wiped and he was now bleeding, and instead of using warm wet washcloths she used a spray cleaner. This wouldn't normally bother me because they would be doing what they do for a lot of other kids BUT I wrote out care instructions for his bottom and hung them above his bed. So WTH! Anyway, he seems better now. He has been eating. I brought him back a happy meal and he ate 1 chicken nugget and most of his fries along with all but one mini muffin in a package. He was also snacking a little while I was gone and Dave was able to get him to laugh and play a little. So I'm not sure if it is the blood, Daddy or the fact that he is starting to feel better or a combination of the 3 but he is better today than he has been in over a week. I couldn't even get him to talk for the last 3 days, he would scowl at me and say "I don't wanna talk to you!"
Well I'm thinking that is about it for now, I gotta go give him his much needed bed bath. I'll update when we know more, oh and BTW we won't know about the parvo thing until Monday because they don't run that test over the weekend.
Please pray for:
1. Rapid healing of his body from this infection and his bottom from the breakdown.
2. That we will have answers soon.
3. That he will stay happy and eating with continued improvements, that the fever will go away the diarrhea will stop.
Other things I may or may not have mentioned in a previous blog - his cultures from our local hospital came back positive the other night at 2 am, that has been deemed a contaminate just like I figured. And though his fever was kept at bay for 19 1/2 hours yesterday it has been back since so we are now on the 7th day of fever and 14th of diarrhea.
I'm not overly thrilled with the aide today. Dave was able to make it up last night which was nice, he gave me a little birthday break from the hospital. While I was gone he told me that the aide cleaned Donavynn's butt and instead of patting she wiped and he was now bleeding, and instead of using warm wet washcloths she used a spray cleaner. This wouldn't normally bother me because they would be doing what they do for a lot of other kids BUT I wrote out care instructions for his bottom and hung them above his bed. So WTH! Anyway, he seems better now. He has been eating. I brought him back a happy meal and he ate 1 chicken nugget and most of his fries along with all but one mini muffin in a package. He was also snacking a little while I was gone and Dave was able to get him to laugh and play a little. So I'm not sure if it is the blood, Daddy or the fact that he is starting to feel better or a combination of the 3 but he is better today than he has been in over a week. I couldn't even get him to talk for the last 3 days, he would scowl at me and say "I don't wanna talk to you!"
Well I'm thinking that is about it for now, I gotta go give him his much needed bed bath. I'll update when we know more, oh and BTW we won't know about the parvo thing until Monday because they don't run that test over the weekend.
Please pray for:
1. Rapid healing of his body from this infection and his bottom from the breakdown.
2. That we will have answers soon.
3. That he will stay happy and eating with continued improvements, that the fever will go away the diarrhea will stop.
Other things I may or may not have mentioned in a previous blog - his cultures from our local hospital came back positive the other night at 2 am, that has been deemed a contaminate just like I figured. And though his fever was kept at bay for 19 1/2 hours yesterday it has been back since so we are now on the 7th day of fever and 14th of diarrhea.
Friday, June 27, 2008
Fevers Back
I guess we jinxed ourselves. The fever came back tonight. And the cultures drawn on Tuesday grew gram positive cocci - don't know which one yet but it was positive. I'm thinking it was likely a contaminant and not a real positive because usually when he actually is sick they grow in 12 hours not 72 and all his blood work is pointing at a virus not bacteria. So we'll see, I'm not a doctor. Either way they said the antibiotics he has been on would cover it anyway so nothing will change. I'm heading to bed. Daddy will be here in a few hours and this may be the only rest I get for the night.
My Mistake...
Just talked to the nurse, he has been fever free since midnight last night!!! So we are already at 19 1/2 hours without a fever! I am praying that this is a sign that he is on his way back up because this is the longest he has been without a fever so far!!! *cheering*
Updating
Still not too much news. His diarrhea has gotten a little bit better, not so much today and not as watery. I know, gross, right. But this is a big thing. He has been sleeping a lot but that is because his hemoglobin is pretty low and they have him on Oxycotin (Oxycodone) for the pain as needed. He has eaten today - a little lunch, most of dinner, some cookies and some chips. So that is a big improvement. We are hoping that that is a sign that things are looking up. We have actually gotten a few narcotic free smiles out of him and he has even talked a little today. The last few days he hasn't said much - would just cry when his bottom hurt and scream at me for cleaning him. So it was really nice to hear his mousy little voice again, sounding happy.
My wonderful friend Alissa stopped in tonight to see us. I can't even tell you that was just what I needed! I know I have been really ornery the last few days and I hate being like that. I'm sorry. I've just been so frustrated and feeling so isolated and I didn't know how to handle it. But seeing a friendly face and talking about something other than fevers, diarrhea, skin breakdown etc was really nice. I should and have wanted to take a trip down to the chapel, I know that that would really help as well. But I don't want to leave him for too long. He won't tell anyone else if he has had an accident, so that worries me. But I know the last time we were here when I felt all this pain and frustration inside me that as soon as I walked into the chapel it was all lifted away. It was amazing!
Thanks to the help of my wonderful parents, Dave will likely be coming to stay the night with me when he gets out of work. I can't wait to see him. I hate being away from him and so does Donavynn. I'm hoping that seeing Daddy will help to lift his spirits. I know that it will lift mine! Maybe while Daddy is here I'll be able to make that trip down to the chapel, and maybe even get out of the hospital for a few minutes. Oh I can hardly wait to see him!
Please pray for:
1: Healing of the breakdown on his bottom.
2: That he remains fever free (I believe, have to check with the nurse, that he has been fever free since 8:30 this morning)
3: That the diarrhea will stop.
4: That they will find out what is wrong and be able to help him.
5: That the problem is nothing serious.
I thank all who have been checking in on us. And keeping us in their prayers. I'll try to update again tomorrow.
My wonderful friend Alissa stopped in tonight to see us. I can't even tell you that was just what I needed! I know I have been really ornery the last few days and I hate being like that. I'm sorry. I've just been so frustrated and feeling so isolated and I didn't know how to handle it. But seeing a friendly face and talking about something other than fevers, diarrhea, skin breakdown etc was really nice. I should and have wanted to take a trip down to the chapel, I know that that would really help as well. But I don't want to leave him for too long. He won't tell anyone else if he has had an accident, so that worries me. But I know the last time we were here when I felt all this pain and frustration inside me that as soon as I walked into the chapel it was all lifted away. It was amazing!
Thanks to the help of my wonderful parents, Dave will likely be coming to stay the night with me when he gets out of work. I can't wait to see him. I hate being away from him and so does Donavynn. I'm hoping that seeing Daddy will help to lift his spirits. I know that it will lift mine! Maybe while Daddy is here I'll be able to make that trip down to the chapel, and maybe even get out of the hospital for a few minutes. Oh I can hardly wait to see him!
Please pray for:
1: Healing of the breakdown on his bottom.
2: That he remains fever free (I believe, have to check with the nurse, that he has been fever free since 8:30 this morning)
3: That the diarrhea will stop.
4: That they will find out what is wrong and be able to help him.
5: That the problem is nothing serious.
I thank all who have been checking in on us. And keeping us in their prayers. I'll try to update again tomorrow.
Day 3 In The Hospital
His total white count has gone up a little today, I believe it was 530 yesterday and today its 880. His ANC is only 139 though. His fever is still coming back. The docs are switching his antibiotics - keeping him on the Oxacillin but taking him of the Fortaz and putting him on something else. Apparently this is for 2 reasons, one because the fever still is hanging on and though the cultures are negative they want to make sure they aren't missing something and two because he has breakdown on his bottom this will hopefully protect him from getting an infection through there. They ordered another stool study to be done, not sure why. I guess they are just trying to cover all the bases and they still have no answers so they want to make sure that they haven't missed anything.
Yesterday he ate a little, I may have mentioned that. But he hasn't wanted to really drink so they have his IV going at 90ml/hr to keep him hydrated. Which has helped his electrolytes a lot but now he can't get good sleep because he was up every hour to pee. Poor kid. If it isn't one thing it's another. He is resting now, and likely will be for most of the day. Hopefully all this sleep is doing him some good.
I feel lost and out of the loop not being able to log onto MySpace. I hate that. So I am hoping that everyone is doing well. I know some of my friends also had a lot going on and I don't know what is going on with them now because I can't read bulletins or blogs. So I hope all is well. You are all in my thoughts and prayers, as I know we have been in yours. I also have myspace IM open so if anyone wants to chat and I have time I would be more than happy to talk - with all this sleeping he is doing it leaves me with quite a bit of free time on my hands.
I spoke to the patient advocate today, so hopefully I won't have to deal with that social worker anymore, and they'll assign a new one.
I guess that is all for now. If anything changes I'll update again. But I don't for see any changes in the near future.
Yesterday he ate a little, I may have mentioned that. But he hasn't wanted to really drink so they have his IV going at 90ml/hr to keep him hydrated. Which has helped his electrolytes a lot but now he can't get good sleep because he was up every hour to pee. Poor kid. If it isn't one thing it's another. He is resting now, and likely will be for most of the day. Hopefully all this sleep is doing him some good.
I feel lost and out of the loop not being able to log onto MySpace. I hate that. So I am hoping that everyone is doing well. I know some of my friends also had a lot going on and I don't know what is going on with them now because I can't read bulletins or blogs. So I hope all is well. You are all in my thoughts and prayers, as I know we have been in yours. I also have myspace IM open so if anyone wants to chat and I have time I would be more than happy to talk - with all this sleeping he is doing it leaves me with quite a bit of free time on my hands.
I spoke to the patient advocate today, so hopefully I won't have to deal with that social worker anymore, and they'll assign a new one.
I guess that is all for now. If anything changes I'll update again. But I don't for see any changes in the near future.
Thursday, June 26, 2008
Some Pics And Update
<-- Finally wanted to eat this morning!
<--- Finally wanted to eat breakfast, today. Below: Finally decided to color, yesterday 
Ok so I guess I lied, I can't promise that I won't be bitching at least a little in this blog as well. Today was a rough one for Donavynn. The morning started out good when I saw him devouring his breakfast! But his diarrhea is still coming strong and consequently he has some breakdown on his bottom. He would scream every time I tried to clean him. At one point he told me he didn't want me, that I needed to get the nurse. That stung a little but I know he just doesn't feel good. After 5 or 6 times of listening to the blood curdling screams he let out when I tried to clean him I had had enough of waiting for the doctors to do something and went off on the nurse. It wasn't her fault and I felt bad afterward. But how long can you sit back and watch your child suffer and no one wants to do anything. They won't give him anything to stop the diarrhea because there have apparently been studies done that say that can prolong the virus. I don't believe that but that is just my opinion. I finally got them to order Nystatin because it is looking like a yeast infection. This afternoon we finally found a technique to clean him that didn't make him scream and things have been a little better since. They also prescribed Oxycodon for the pain, seems a bit strong to me, but if it helps him, I guess I can't complain.
The doctors explained the whole antibiotic stuff to me, which I was fully aware of, but still not sure I agree with. I understand that they want to make sure they don't miss an infection but the antibiotics can cause GI upset as well, and all the cultures are negative so it seems a bit pointless to me. I guess that is just the way they do things, and it could save his life, so I won't complain about that anymore.
I would just like to say as well, that I am fully aware that there are worse things that can happen, that some of the other children on our floor and their families are enduring and have endured far worse than this. My heart goes out to them and I keep them in my prayers. That however doesn't change the fact that my baby is in pain and I hurt for him and am frustrated that we have no answers. I told this to the social worker today (who I HATE anyway) And I mentioned that it felt like we would be here forever. Frustration speaking, I'm sure you understand. Her response was "You won't be here forever, there is a family that has been here forever, they have been here since February." I was floored and didn't know what to say to her. What a bitch! I'm tired, lonely, frustrated and sick of seeing my baby in pain and this is her response to me??? I know that there are children fighting for their lives up here and by no means do I want sympathy or whatever she thought I was looking for. She asked how I was doing, so I told her. Social workers are supposed to be part of your support system ya know? I don't know, maybe it's just me, but I thought that was pretty shitty to say. We are all fighting our own battles, some harder than others but no matter how petty someone else's problems may seem to you, they are big to them. She has no clue what I'm dealing with. The other worries that I have going through my mind besides the irritation of not having answers. He may not be as bad as some of the kids but he is still fighting cancer as well. And I feel that now he is on maintenance she doesn't feel like he matters anymore. All I can say is I miss Jamie, she was the best social worker in the world! I wish she would come back!!! Sorry, with everything else going on this just rubbed me the wrong way.
So anyway, his WBC is 530, I don't know his ANC but with his WBC that low his ANC is much lower. All his blood work is out of whack. So it is going to take his poor little body a little longer to recover. So I'm preparing myself for a long stay and hoping for a short one. He has still had the fever and the doctors said that we can't go home till
1. He has been fever free for 24 hours.
2. His viral panel comes back.
3. The diarrhea has stopped.
So he hasn't been up to doing much, as you can imagine so I have been coloring him some pictures, in hopes of helping the time pass. He likes them. :)
So I think that is about it for now. Hopefully we'll know something soon. Again sorry for the complaining. Gotta vent sometimes! Thanks for the prayers.
Day 2 in the hospital
Day 12 of diarrhea, day 6 of the fever and still no answers. I am starting to get really frustrated! As far as modern medicine has come and they still can't figure out what is wrong with my son. All the cultures remain negative, big surprise but every day he has a fever they draw more of them. We haven't gotten his CBC report for the day yet. He is on isolation so that is leaving me feeling very isolated. The aid we had yesterday was a classmate of mine, so she came in when she had time and would sit and talk with us. But today the aid simply stood in the door when I called for stuff, not wanting to gown up and come on in. He is on contact isolation because they don't know what is causing this and they don't want it to spread through out the hospital. And I am not expecting any visitors unless a couple of my friends can stop up because my mom has to work and we don't have the extra money for Dave to drive up. I hate that the hospital is so far from home. As happy as I am that we are here and they are trying to figure out what is wrong, and they have him on IV fluids so we aren't worrying about dehydration, it does truly suck that we are so far from everyone. I'm sorry I don't mean to whine. I'm just so frustrated. Everyone just acts like "Oh well, we don't know what it is, sorry about your luck" I can't say that it is everyone, the nurses have been great. So we are just waiting for the team to come around, actually I could care less about when they get here because they are just going to tell us what they did yesterday.
On the up side, Donavynn just asked for breakfast. We'll see if he eats. He did ask for dinner yesterday but then when it got here he said he didn't want it.
I did get him to color me one picture yesterday and he did play with some dinosaurs a little, so he does have some energy that comes and goes. I'll upload those pics soon. But I am going to try to keep busy today, gonna clean the room up, give him a sponge bath, color with him, play some games and whatever else I can think of, if he'll stay awake today. :) But I can't complain if he doesn't because I know that the sleep is really good for him.
Ok just one more bitch here - his cultures aren't growing yet, they keep giving him the strongest antibiotics known to man! With all the antibiotic resistant strains of bacteria out there I'm really not thrilled about him receiving antibiotics that he doesn't need! But the nurse just said that they will continue to do that until they know what is wrong. Under normal circumstances they would start him on the heavy duty ones and then when the cultures grew they would do a sensitivity and find out what other drugs work so that he wasn't on a broad spectrum antibiotic this whole time, but because nothing is growing they still him on Oxacillin and one other one that starts with an F.
Ok well, that is enough bitching for now. I'll try to be more positive when I update again, I just needed to vent a little. Thanks for listening!
On the up side, Donavynn just asked for breakfast. We'll see if he eats. He did ask for dinner yesterday but then when it got here he said he didn't want it.
I did get him to color me one picture yesterday and he did play with some dinosaurs a little, so he does have some energy that comes and goes. I'll upload those pics soon. But I am going to try to keep busy today, gonna clean the room up, give him a sponge bath, color with him, play some games and whatever else I can think of, if he'll stay awake today. :) But I can't complain if he doesn't because I know that the sleep is really good for him.
Ok just one more bitch here - his cultures aren't growing yet, they keep giving him the strongest antibiotics known to man! With all the antibiotic resistant strains of bacteria out there I'm really not thrilled about him receiving antibiotics that he doesn't need! But the nurse just said that they will continue to do that until they know what is wrong. Under normal circumstances they would start him on the heavy duty ones and then when the cultures grew they would do a sensitivity and find out what other drugs work so that he wasn't on a broad spectrum antibiotic this whole time, but because nothing is growing they still him on Oxacillin and one other one that starts with an F.
Ok well, that is enough bitching for now. I'll try to be more positive when I update again, I just needed to vent a little. Thanks for listening!
Wednesday, June 25, 2008
Heading to bed
I will be posting some pictures tomorrow. One of the aid's actually got a smile out of him tonight, and he has actually been in a pretty good mood since he woke up after sleeping the day away. He has still had a fever off and on today, better than it has been as far as amount, but the temp still gets up pretty high when he does spike. We can always tell that it's coming to because he starts to shiver.
His bottom is raw! I'm really worried about that too because the last thing he needs right now is a portal of entry for a bacterial infection. The resident came in and checked on it tonight and we are waiting for a special concoction to come up. Apparently they mix Aquaphor (which we LOVE) with Maalox and rub that on there. The Maalox helps to break up the acidic material, and fats etc so that it won't bother his skin so much and the Aquaphor serves to provide a barrier. I'm hoping that helps, cuz God knows the other stuff we have tried sure isn't. He is embarrassed because he is back in diapers for the time being. I have to constantly check him because sometimes he is too embarrassed to tell me. And other times he'll just apologize. I've explained to him many times that it is ok and there isn't anything he can do to prevent it. But that doesn't seem to be helping.
In other news, I did want to let you all know that I found a sunscreen that I can use on him, that (at this time) doesn't seem to bother his rash. It is Aveeno Baby, we love the Aveeno brand, infact that is the only soap we can use on him as well so I was thrilled to find that they had a sunscreen out as well. So I'm sure he'll be glad to get back out in the sun as soon as he gets over this awful bug!
I've been bored out of my mind so I've been coloring a lot today while he slept. lol I know I should be sleeping when he is, and I tried but sometimes that just didn't work.
They do a different craft up here everyday, usually it is done in the play room but because of the fever and such he isn't allowed out of the room so they brought it in here. He didn't want to do it today so he told me too. It was a cute little sun catcher. So arts and crafts have been my fun for the day. I'm hoping that he'll be more awake tomorrow so that we can play his fishing game and stuff. Maybe then he'll want to help with tomorrows craft. Well I'm finding myself rambling so I'll let you all go now. I'll update again tomorrow. Thanks for the prayers!
His bottom is raw! I'm really worried about that too because the last thing he needs right now is a portal of entry for a bacterial infection. The resident came in and checked on it tonight and we are waiting for a special concoction to come up. Apparently they mix Aquaphor (which we LOVE) with Maalox and rub that on there. The Maalox helps to break up the acidic material, and fats etc so that it won't bother his skin so much and the Aquaphor serves to provide a barrier. I'm hoping that helps, cuz God knows the other stuff we have tried sure isn't. He is embarrassed because he is back in diapers for the time being. I have to constantly check him because sometimes he is too embarrassed to tell me. And other times he'll just apologize. I've explained to him many times that it is ok and there isn't anything he can do to prevent it. But that doesn't seem to be helping.
In other news, I did want to let you all know that I found a sunscreen that I can use on him, that (at this time) doesn't seem to bother his rash. It is Aveeno Baby, we love the Aveeno brand, infact that is the only soap we can use on him as well so I was thrilled to find that they had a sunscreen out as well. So I'm sure he'll be glad to get back out in the sun as soon as he gets over this awful bug!
I've been bored out of my mind so I've been coloring a lot today while he slept. lol I know I should be sleeping when he is, and I tried but sometimes that just didn't work.
They do a different craft up here everyday, usually it is done in the play room but because of the fever and such he isn't allowed out of the room so they brought it in here. He didn't want to do it today so he told me too. It was a cute little sun catcher. So arts and crafts have been my fun for the day. I'm hoping that he'll be more awake tomorrow so that we can play his fishing game and stuff. Maybe then he'll want to help with tomorrows craft. Well I'm finding myself rambling so I'll let you all go now. I'll update again tomorrow. Thanks for the prayers!
A tiny tidbit of news
Well the C-diff test was negative, which is really good, but that is all we know for now. I'm bored out of my mind because he is still sleeping. This is really kicking his butt! I am not sure when the other results will come back, but I'll let you know when they do.
Still No News
The doctors came in and we still know nothing. The only thing we know for sure is we are gonna be here awhile. He has done nothing but sleep all day today. His potassium was critically low so he was given a potassium bolus and he is on a continuous potassium chloride drip, because he won't eat and he's barely drinking because he is sleeping so much. I guess the sleep is good, will help him heal faster. His temp was up to 104 again but it is now back down, thank God. Fevers really make me nervous. It amazes me that he feels worse with this virus than he ever did when he had pneumonia or the bacterial infections. As I believe I mentioned before the stool cultures aren't going to grow for awhile. So we should know about the C-diff tomorrow but I think that will be all that we know. He's crying for me so I better go.
Quick Update
Just wanted to let everyone know that we won't know anything on the stool cultures till at least tomorrow. And that is only for some of them (like the C-diff) the others will take longer to come back. So it doesn't look like we'll be going home anytime soon, but the doctors will be in soon and I'll update again if they have any information for me.
An Answer???
Well we arrived here at 4 am, and yes, for some reason I am awake at 9. My mind won't stop working, so it makes it rather hard to sleep. The cultures are still negative and his counts are still dropping so they were able to get a stool sample this morning. They are testing for lots of stuff from C-diff to Rotavirus even for parasites. After all that he has gone through I won't be surprised if it is Rotavirus. It sounds a whole lot like it, and at this point that would be the best bet. So I guess that is what we are hoping to hear. He is sleeping right now, which is good. And as always has been very cooperative for the staff. He is such a good patient, even when he feels so awful. The one thing that always tells me he isn't feeling good is how he treats his sister and his cousin. When he doesn't feel well they can't do anything right. If they look at him he yells at them. lol
So we are unsure of how long we'll be here. I guess it all depends on that stool sample and his fever.
In other news, Cheyenne is worried about her brother. I have kept her informed of all the goings on with him. And though she is worried, I think we are both happy that she isn't here right now. These stays in the hospital are really hard on her too, because she hates to be away from me. It would be really great if one of these summers her dad would let her stay here and go to one of the camps they have for the siblings of cancer patients. I think it would be good for her. Speaking of camp, Donavynn may be going to Camp Hope next year. They usually have to be 6, but they said that they might be able to get him in. I don't know how I'll feel as the time gets closer but right now, I'm pretty excited for him. I know he'll be in good hands because the doctors and nurses from the clinic are all over up there, and they are monitored so closely. From what I hear all involved have a great time. So we'll see.
Well, I'm still waiting for someone to come in and talk to me this morning. Not sure when the doctors will be making their rounds. But as soon as I know something I'll let you all know.
So we are unsure of how long we'll be here. I guess it all depends on that stool sample and his fever.
In other news, Cheyenne is worried about her brother. I have kept her informed of all the goings on with him. And though she is worried, I think we are both happy that she isn't here right now. These stays in the hospital are really hard on her too, because she hates to be away from me. It would be really great if one of these summers her dad would let her stay here and go to one of the camps they have for the siblings of cancer patients. I think it would be good for her. Speaking of camp, Donavynn may be going to Camp Hope next year. They usually have to be 6, but they said that they might be able to get him in. I don't know how I'll feel as the time gets closer but right now, I'm pretty excited for him. I know he'll be in good hands because the doctors and nurses from the clinic are all over up there, and they are monitored so closely. From what I hear all involved have a great time. So we'll see.
Well, I'm still waiting for someone to come in and talk to me this morning. Not sure when the doctors will be making their rounds. But as soon as I know something I'll let you all know.
Monday, June 23, 2008
Still Waiting...
For someone to tell me something, for the fever to stop coming back, for the diarrhea to stop... You name it, we are waiting for it. Last night there was a bit of an upset and I almost had to lose my mind on someone at our local hospital. I called to see about his culutres and some dumbass told me that they didn't do cultures only a CBC when I was standing right there and watched them do it. I about lost my mind, you do not mess around with a cancer patients cultures!!! Apparently there is a new computer system over there so I just needed to talk to someone who knew where to look. After tweaking out on 2 people and flipping out to my mom and husband we finally got some answers - still negative, which is good. But I'm still a nervous wreck because he just can't shake this fever! It keeps coming back, last night it got up to 104 really fast. I gave the Tylenol when I checked it and it was 102, but before the medicine could work it had already climbed up to 104. With a fever he doesn't want to do anything but lay in bed, because we can all remember having a high fever - with it comes at the very least a headache. We got the vomiting stopped the other night but the diarrhea just won't go away and we are in day 9 now! I'm pushing gatorade like you wouldn't believe trying to keep him hydrated. And he hasn't wanted to eat anything in 2 days. To put it simply I'm just a nervous wreck! I hate this not knowing what is wrong and when he is going to feel better! At least it's Monday though, depending on how he does today I may be calling to speak to his regular doctor. I think that I'm just freaking out because this is only the 2nd time since he started treatment that we were allowed to stay home with a fever and it scares the crap out of me!!! As much as we hate being in the hospital we do feel a little safer there when this is going on. I guess that is all for now, I'll keep you posted. Thanks for the prayers!
Sunday, June 22, 2008
A Long Night
I took Donavynn and Derek to my friend Racheal's house last night, in hopes of them having a wonderful time playing with Connor and Trinity. All started out well and then right around dinner time Donavynn started complaining of a stomach ache and said that he wanted to go home, so we went home and I checked his temp. It was 101.2 so I called the nurse on call. Because his counts had been good Monday she told me to give him some Tylenol, hold his 6MP and call back if the fever comes back again. So that was what we did. Derek went home and I went to bed. Around 2 o'clock Dave woke me up - Donavynn was vomiting. And now his temp was back and up to 102.6 so I called the hospital and they sent us in. His ANC was 3100 so they sent us home. We'll have to wait and see if the cultures grow. But we are all hoping that it is a stomach virus. He has had the diarrhea for 8 days now and that seems to be getting better so I'm hoping that maybe the end of it is the worst and we'll be done with this soon and little D-man can get back to himself. I know he is tired of being sick and it breaks my heart to see him looking so sad. I'll keep you posted. If we end up at Mercy I'll be posting on the blogspot site.
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