Last night we added another ER trip under our belt. Connor had not been eating at all and I think I got 1 bottle down him all day. I went against the dr's and gave him a few drops of Children's Imodium. I have been told that it is not good for him. But, neither is having 10-12 bouts of diarrhea a day either. Having his butt open and bleeding because of the diarrhea is not good for him. Since no one wanted to address either one of these problems I did it myself. Right or wrong it did help. He only had 2 bad diapers yesterday. But, he didn't have any wet ones either. On top of that he was so congested that he was choking on it. Around 6:00 last night he started to choke and couldn't stop. He wasn't breathing for a few seconds and then he started to throw up. I had enough!!! I couldn't watch him go through this anymore and just wait things out like we keep being told to do with everything. I called his pediatrician and got the one we saw on Monday and we decided that the best thing to do and to be safe we needed to take him to Jersey Shore ER. He called ahead and gave them his history, not just the RSV and sickness but everything neurological too.
After waiting 2 hours in the waiting room we were triaged. They put the pulse ox on his toe to measure the oxygen in his blood and all the alarms started to go off. His level was reading 88. Not good!!! But, she wouldn't except that. She reset the alarms and sat there with it on his foot watching it fluctuate between 88 to 94 for over 5 min. At one point it jumped to 96 for a sec and she wrote that one down. I know he is having problems breathing but I knew then we weren't going to get the right help here. They didn't weigh him even though there was a scale right there. He has had diarrhea for a week, vomiting and not eating. You think they would look to see if he has dropped weight. But they didn't. We finally got called back to the ped room around 9pm. They listened to his lungs and said they could hear the RSV. No x-rays to check for pneumonia even though he gets this easily. They decided to give him an IV, start some fluid, gets some labs and see what happens.
Joe had to take Julia (we had her with us since Brandon wasn't home) out to the van so she could get some sleep. We have been informed by the school that she can't miss anymore days. Not that I want to keep her home but when I have one child in the hospital what am I supposed to do with her? I am left in the hospital with Connor and Joe was in the van with Julia. Not fun and not easy. I couldn't even go to the bathroom because they didn't have a crib for him they only had a bed so he sat in my lap in the wheel chair the whole time and Joe was outside freezing in the van trying to keep Julia warm.
I have alot of complaints about CHOP but let me say that it never has taken them 4 tries to get an IV on him. It was horrible. By the time they finally got the IV started Connor had no fight left in him. He just laid there and cried. My heart broke. That was the last attempt they had because if they didn't get it this time I wasn't letting them try again. They drew some blood and got some fluid going. Once they got some fluid in him he was like a different kid. When he kissed me he actually left a damp spot on my hand. He was more playful and just seemed more alert.
The dr came back and said that his lab work came back OK and he wasn't dehydrated (I don't buy it. Just with the difference in his behavior). No talk of his breathing, no talk of the congestion, didn't even look at the diaper rash. Just if he drinks a bottle of pedialyte or eats an ice pop and it stays down. He can go home. Well, he wouldn't touch the bottle and played with the ice pop but they decided that it was OK and he could go home anyway. Dr tells me that he can't have juice or milk and until we stop it he will have the diarrhea. I tell him that he won't drink anything but milk. The dr then tells me that if I don't give him anything for 8-10 hrs he will drink the pedialyte!!!!!!!!!! I am NOT doing that. This poor baby has been through enough. I am not going to starve him and take away his source of comfort right now. He doesn't take a pacifier, he doesn't have a special blanket or stuffed animal that would count as a comforter for him. I am not taking this away.
As of now. He ate a couple Cheerios. He seems very tired but then again I would be too (I am). Nothing has been fixed and I don't feel we are any better now than we were before he went to the ER.
Friday, February 29, 2008
Wednesday, February 27, 2008
From Hospital to now 2-27
We got home from the hospital about 6pm. We were tired, angry and confused. Connor was still getting sicker. I have not been able to get him to eat anything in a few days now and he is drinking very little but the diarrhea just keeps coming. Every diaper change now. I am not changing him because he is wet but because of the diarrhea. I don't remember the last real wet diaper he had. His breathing is getting worse. We can hear him wheezing across the room now. We got him settled down in his bed and tried to get everything put away and repack the things that need to be repacked "just in case".
Connor would not go to sleep. He was crankier than I ever remember him being. He did not go down to sleep until after 1am. He was up an hour or so later. His butt is raw from all the diarrhea and his wheezing and coughing is scaring me. All I can think of is that we brought him home from one hospital to have to take him back to another. By 5 am he had a fever of 102.4 and he was throwing up. There was nothing in his stomach really so the poor baby just sat there dry heaving. I did get him settled down and he fell back to sleep once I got the fever to go down a bit. I sent Joe to work figuring I could handle this. My plan was to play it by ear and see if we are going to our pediatrician's office tonight or much sooner depending on how he is doing.
I happened to think of something in the middle of the night while sitting with Connor. This test on Wednesday is a scan. The only way they can scan kids his age is to sedate them. No one has mentioned this though but I know from experience with the sedation until in the past and being an RN that they will NOT sedate a sick child. THE SCAN CAN'T HAPPEN! They knew that when they discharged us but went ahead and set it up anyway. We would have made that trip to the hospital twice and he would have had a shot all to have things called off at the last minute when we showed up to be sedated. I called the hospital to make sure and I told them first no one told me he was going to have to be sedated for this test and the only way I knew was because of past experience with his scans and that they made this appointment and discharged him knowing he wouldn't be able to get the test!!
I decided to make a bunch of phone calls while I had a few minutes and Connor was sleeping. I called the radiology dept and told them what was going on and we cancelled the appointment. We both decided that instead of rescheduling the appointment now we would wait till it looked like he was starting to get over everything and then reschedule because we have no idea how long he is going to be like this. Then I called Connor's neurologist, not the roving ones from the hospital but the one he sees in the office and has sent us to CHOP. She was seeing patients. I left a message for her that Connor was very sick. That we almost ended up taking him into the ER last night (I didn't mention that we were seriously considering this for awhile) and that the MIBG scan was cancelled because they couldn't sedate him. I also put in the message that the dr's at the hospital discharged him knowing how sick he was and made the appointment knowing he wouldn't be able to have the scan. Then I called our pediatrician. She has been great and behind us from day 1. This isn't the dr's that we get when we take him in for a sick visit this is his regular dr who knows us and knows Connor. She has been on vacation and I knew this but I was hoping she would check her messages. The office told me she won't be checking them. I decided to leave a message anyway. So, I let her know briefly what has gone on. I know I will here from her Monday morning. While on the phone with the office I made a sick appointment for Connor for the evening.
By 12pm I had to call the pediatrician and get an earlier appointment. His diarrhea was still real bad and his diaper rash looks like an open sore. His breathing is bad. I couldn't wait until 5 at night. Joe came home and we took him right in. At this point things have not turned to pneumonia yet. The Dr gave us great advice for the diaper rash and told us some things to try to keep him hydrated. He told us that he thinks this is all just a virus (which we already suspected). One of the things he suggested to give Connor was sherbert. It would hydrate him and give him the calories he isn't getting anywhere else. Well, it was a great idea but Connor wouldn't touch it. So far all we have been able to get him to eat is banana's. Not the baby banana's which are fortified with vitamins and stuff but the real banana's.
As of today, we have not heard from Connor's neurologist. You would think I would have heard from her for no other reason than he didn't get the test done. I am real angry about this. He is her patient and she will not return my messages? I am starting to look for a different neurologist and hospital to take him to. Maybe they will get to the bottom of things. Some one has to!!
He is still sick and from the sound of Connor's breathing, the diarrhea, the diaper rash and everything else we are going to be going back to the doctor in the next day or 2. This has all made his walking worse. He won't even try walking right now. He will sit in my lap, sit in his bed or stand up there. He will also sit in his activity center but that is it. I need to weigh him and see if he has lost any weight since he was weighed in the hospital. If he has lost weight then I have a feeling he is going to end up back in the hospital sooner rather than later.
I will try to keep this post updated as much as possible. If there are any new developments I will post it as soon as I can get to it. If nothing else I will try to post at a minimum of once a week and more if the situation calls for it. Keep the prayers going please. And, if anyone has any ideas, suggestions, hospital suggestions. dr suggestions ANYTHING please post it in the comments. We need all the help we can get.
Connor would not go to sleep. He was crankier than I ever remember him being. He did not go down to sleep until after 1am. He was up an hour or so later. His butt is raw from all the diarrhea and his wheezing and coughing is scaring me. All I can think of is that we brought him home from one hospital to have to take him back to another. By 5 am he had a fever of 102.4 and he was throwing up. There was nothing in his stomach really so the poor baby just sat there dry heaving. I did get him settled down and he fell back to sleep once I got the fever to go down a bit. I sent Joe to work figuring I could handle this. My plan was to play it by ear and see if we are going to our pediatrician's office tonight or much sooner depending on how he is doing.
I happened to think of something in the middle of the night while sitting with Connor. This test on Wednesday is a scan. The only way they can scan kids his age is to sedate them. No one has mentioned this though but I know from experience with the sedation until in the past and being an RN that they will NOT sedate a sick child. THE SCAN CAN'T HAPPEN! They knew that when they discharged us but went ahead and set it up anyway. We would have made that trip to the hospital twice and he would have had a shot all to have things called off at the last minute when we showed up to be sedated. I called the hospital to make sure and I told them first no one told me he was going to have to be sedated for this test and the only way I knew was because of past experience with his scans and that they made this appointment and discharged him knowing he wouldn't be able to get the test!!
I decided to make a bunch of phone calls while I had a few minutes and Connor was sleeping. I called the radiology dept and told them what was going on and we cancelled the appointment. We both decided that instead of rescheduling the appointment now we would wait till it looked like he was starting to get over everything and then reschedule because we have no idea how long he is going to be like this. Then I called Connor's neurologist, not the roving ones from the hospital but the one he sees in the office and has sent us to CHOP. She was seeing patients. I left a message for her that Connor was very sick. That we almost ended up taking him into the ER last night (I didn't mention that we were seriously considering this for awhile) and that the MIBG scan was cancelled because they couldn't sedate him. I also put in the message that the dr's at the hospital discharged him knowing how sick he was and made the appointment knowing he wouldn't be able to have the scan. Then I called our pediatrician. She has been great and behind us from day 1. This isn't the dr's that we get when we take him in for a sick visit this is his regular dr who knows us and knows Connor. She has been on vacation and I knew this but I was hoping she would check her messages. The office told me she won't be checking them. I decided to leave a message anyway. So, I let her know briefly what has gone on. I know I will here from her Monday morning. While on the phone with the office I made a sick appointment for Connor for the evening.
By 12pm I had to call the pediatrician and get an earlier appointment. His diarrhea was still real bad and his diaper rash looks like an open sore. His breathing is bad. I couldn't wait until 5 at night. Joe came home and we took him right in. At this point things have not turned to pneumonia yet. The Dr gave us great advice for the diaper rash and told us some things to try to keep him hydrated. He told us that he thinks this is all just a virus (which we already suspected). One of the things he suggested to give Connor was sherbert. It would hydrate him and give him the calories he isn't getting anywhere else. Well, it was a great idea but Connor wouldn't touch it. So far all we have been able to get him to eat is banana's. Not the baby banana's which are fortified with vitamins and stuff but the real banana's.
As of today, we have not heard from Connor's neurologist. You would think I would have heard from her for no other reason than he didn't get the test done. I am real angry about this. He is her patient and she will not return my messages? I am starting to look for a different neurologist and hospital to take him to. Maybe they will get to the bottom of things. Some one has to!!
He is still sick and from the sound of Connor's breathing, the diarrhea, the diaper rash and everything else we are going to be going back to the doctor in the next day or 2. This has all made his walking worse. He won't even try walking right now. He will sit in my lap, sit in his bed or stand up there. He will also sit in his activity center but that is it. I need to weigh him and see if he has lost any weight since he was weighed in the hospital. If he has lost weight then I have a feeling he is going to end up back in the hospital sooner rather than later.
I will try to keep this post updated as much as possible. If there are any new developments I will post it as soon as I can get to it. If nothing else I will try to post at a minimum of once a week and more if the situation calls for it. Keep the prayers going please. And, if anyone has any ideas, suggestions, hospital suggestions. dr suggestions ANYTHING please post it in the comments. We need all the help we can get.
Tuesday, February 26, 2008
Our Fight
On Saturday we were waiting for therapy to come and get started and for the doctors to come in and tell us what they were going to do that day. The roving neuro dr's came around and decided that Connor did not need to stay at the hospital. We could come back for the scan. Even though it is a 3-4 hour round trip depending on traffic and we would have to come back 2x for this test. Even though Connor was sicker, they decided that to keep him in the hospital with other sick kids wouldn't be good. We were still waiting for the final consult and tests that needed to be run from the metabolic team. We were still waiting for occupational and physical therapy to even evaluate him let alone start therapy. We hadn't seen the social worker to even start setting up his therapies at home. I was livid. I talked till I was blue in the face and the dr just kept talking over me and telling me that this wasn't the place for Connor.
Now don't get me wrong. I wanted to bring Connor home just like any other mother but he was not any better neurologically, we didn't even have a diagnosis yet. He was getting sicker and that kept getting ignored. I was so upset. I talked to the nurse as soon as I could calm down and told her what I thought and that the last time we were here we let the dr's talk us out of staying and here we are a month later back in and worse than when we started. No one would talk to me about the treatments that were brought up to us last time we were in. They weren't ready to try them last time but I was more than ready this time. I hadn't even been able to get anyone to give me the results of his last MRI which I know they had from the day it was done. The nurse went out and when she came back she asked if the dr had been in to talk to us. We said no. She then told us that if we were not comfortable going home then we can stay. They were not going to kick us out. We were staying until at least Wednesday now. I had time to regroup and try to figure out what these doctors were trying to do because nothing made sense anymore.
On Sunday Joe was planning on going home and getting a few things and see our daughter for a little while. I saw one of Connor's dr's and we talked about the treatments and she was going to talk to the higher dr about it on rounds. I also found out that the MRI hadn't changed any. We talked about us going home after the scan and I told her I understood that they couldn't keep us there while waiting weeks for all the tests to come back but at least we would get some of the therapy started, get the social worker involved to set things up and not have to drag a sick baby 3 hrs (I am being hopeful) round trip 2x in 3 days plus the trip home. I went downstairs for a few minutes before Joe left and I get a call on my cell phone. It was Joe and he tells me that the roving neuros are in Connor's room and the head one got nasty and wanted to know why we were still there. We were supposed to leave yesterday. Joe told them that I was afraid that if Connor left we are going to go another month with nothing getting done and that he is sicker and we are going to need to come back on Tuesday for a shot and Wednesday for the scan anyway. The dr says "I don't understand what you are saying" I was shaking all the way up to the floor. Perfect example of too many dr's not knowing what anyone is doing and getting so important (I guess is the word) that they don't think about the patient. We are black and white cases not real people with real lives and real hardships.
I tried I honestly did but I could not get this guy to care. I would have said understand but I am pretty sure he understood what he wanted to and just didn't care about the rest. I told him I took him home a month ago and here we are again getting kicked out with Connor worse. This guy has the nerve to tell me that I very clearly told him that Connor was no worse than when he was here a month ago. I have never, never said that. I have been yelling to anyone who will listen that he is getting worse with more symptoms coming on and we need help. I got loud (I didn't yell but looking back now I should have) and told him that I said his WALKING was no worse but everything else is getting worse. For God sakes the only way his walking can get worse at this point is for him to not walk at all!!!!! I fought the tears I really did. I told them that I will take my son him because I can't keep fighting with them and getting no where. He says It's not about fighting we all want whats best for Connor. (somehow I don't think his need for that comes close to my need for it). Then he tells us that instead of weeks we are looking at months before we will see some improvement. I am not waiting months to see if he gets better on his own from something they "think he may have".
They won't do the treatments until all the tests are back. Even though they say they don't think any of them are going to come up positive and they all think it is cerebelitis and talked about treatment the last time but just wanted to give him a little more time. Now they are talking weeks before we can even talk about it. This all happened at 10am. We did not get the final discharge to go home until after 4. By now I have managed to get only 2 bottles down Connor since the night before and he is wheezing and very cranky.(I don't know if I mentioned earlier or not that Connor will not drink out of a sippy anymore and will only take a bottle of milk to drink). Then the dr's asked us if it was a problem with money for the trips and maybe the social worker would be able to help us. I tried to explain that it is not an issue of the money (it doesn't help with all these trips but that was the least of my concerns at this point) but that I had 2 chronic pain conditions among other things and the driving and any stress makes me worse and Connor is sick and you have us driving back and forth like it is around the block. Then they tell us we need to make an appointment with an ophthalmologist at CHOP and get a consult done that week along with seeing our pediatrician within a week!!! What is better for Connor leaving him where he is already and getting it all taken care of or sending him on a 3 hour round trip ride 3 times in one week and throw in a trip to his pediatrician?
Now don't get me wrong. I wanted to bring Connor home just like any other mother but he was not any better neurologically, we didn't even have a diagnosis yet. He was getting sicker and that kept getting ignored. I was so upset. I talked to the nurse as soon as I could calm down and told her what I thought and that the last time we were here we let the dr's talk us out of staying and here we are a month later back in and worse than when we started. No one would talk to me about the treatments that were brought up to us last time we were in. They weren't ready to try them last time but I was more than ready this time. I hadn't even been able to get anyone to give me the results of his last MRI which I know they had from the day it was done. The nurse went out and when she came back she asked if the dr had been in to talk to us. We said no. She then told us that if we were not comfortable going home then we can stay. They were not going to kick us out. We were staying until at least Wednesday now. I had time to regroup and try to figure out what these doctors were trying to do because nothing made sense anymore.
On Sunday Joe was planning on going home and getting a few things and see our daughter for a little while. I saw one of Connor's dr's and we talked about the treatments and she was going to talk to the higher dr about it on rounds. I also found out that the MRI hadn't changed any. We talked about us going home after the scan and I told her I understood that they couldn't keep us there while waiting weeks for all the tests to come back but at least we would get some of the therapy started, get the social worker involved to set things up and not have to drag a sick baby 3 hrs (I am being hopeful) round trip 2x in 3 days plus the trip home. I went downstairs for a few minutes before Joe left and I get a call on my cell phone. It was Joe and he tells me that the roving neuros are in Connor's room and the head one got nasty and wanted to know why we were still there. We were supposed to leave yesterday. Joe told them that I was afraid that if Connor left we are going to go another month with nothing getting done and that he is sicker and we are going to need to come back on Tuesday for a shot and Wednesday for the scan anyway. The dr says "I don't understand what you are saying" I was shaking all the way up to the floor. Perfect example of too many dr's not knowing what anyone is doing and getting so important (I guess is the word) that they don't think about the patient. We are black and white cases not real people with real lives and real hardships.
I tried I honestly did but I could not get this guy to care. I would have said understand but I am pretty sure he understood what he wanted to and just didn't care about the rest. I told him I took him home a month ago and here we are again getting kicked out with Connor worse. This guy has the nerve to tell me that I very clearly told him that Connor was no worse than when he was here a month ago. I have never, never said that. I have been yelling to anyone who will listen that he is getting worse with more symptoms coming on and we need help. I got loud (I didn't yell but looking back now I should have) and told him that I said his WALKING was no worse but everything else is getting worse. For God sakes the only way his walking can get worse at this point is for him to not walk at all!!!!! I fought the tears I really did. I told them that I will take my son him because I can't keep fighting with them and getting no where. He says It's not about fighting we all want whats best for Connor. (somehow I don't think his need for that comes close to my need for it). Then he tells us that instead of weeks we are looking at months before we will see some improvement. I am not waiting months to see if he gets better on his own from something they "think he may have".
They won't do the treatments until all the tests are back. Even though they say they don't think any of them are going to come up positive and they all think it is cerebelitis and talked about treatment the last time but just wanted to give him a little more time. Now they are talking weeks before we can even talk about it. This all happened at 10am. We did not get the final discharge to go home until after 4. By now I have managed to get only 2 bottles down Connor since the night before and he is wheezing and very cranky.(I don't know if I mentioned earlier or not that Connor will not drink out of a sippy anymore and will only take a bottle of milk to drink). Then the dr's asked us if it was a problem with money for the trips and maybe the social worker would be able to help us. I tried to explain that it is not an issue of the money (it doesn't help with all these trips but that was the least of my concerns at this point) but that I had 2 chronic pain conditions among other things and the driving and any stress makes me worse and Connor is sick and you have us driving back and forth like it is around the block. Then they tell us we need to make an appointment with an ophthalmologist at CHOP and get a consult done that week along with seeing our pediatrician within a week!!! What is better for Connor leaving him where he is already and getting it all taken care of or sending him on a 3 hour round trip ride 3 times in one week and throw in a trip to his pediatrician?
Hospital stay round 2
Our hospital stay was one of frustration to say the least. I know that there is alot to be said for having a think tank of doctors to work on your child & try to figure things out. The problems come in when they all plan things one way and they don't communicate any of those thoughts to the other. All you have then is chaos. One Dr would come in & say one things and the next would come in & say they were going to do something else. No one talked to the other or to us. Plans were made without telling us & then things that we knew about were cancelled without telling us. It is one of the most frustrating things about all of this. That and still not having a definitive diagnosis.
We were told we would be in until Wednesday and that was the earliest we would get out. So we were planning on flying my mother-in-law in from Texas so that our 7 yr old could come home and go to school. She had been staying at my mom's and there was no way my mom could get her back and forth to school. Plans changed from one second to the next while we were in the hospital. Connor kept getting sicker from a virus (he was diagnosed with RSV a respiratory virus while we were in there) and diarrhea that the dr's kept ignoring because it didn't have anything to do with his neurological problems. Although any virus or illness can make all of this worse. My mother-in-law God Bless her heart is on stand by for the next upheaval. She is ready to fly here if/ when we need her.
When Connor was admitted he was supposed to have a spinal tap the next day. They didn't know the time because he has to go through the sedation unit and they were hoping for a cancellation due to the weather (we had a bad storm which closed all the schools in Phili). Because they didn't know the time that all this was going to happen Connor was not allowed to have anything to eat or drink. It was a miserable 6 or 7 hours (his last bottle was the night before and he hadn't eaten anything since breakfast the day before and he didn't eat a lot then). We finally got the time for his test and we had a half hour to go. Then the roving neurologists (that is what I call all the neuro dr's that come crowding into Connor's room everyday) come in and say in passing that they cancelled his spinal tap. I was pissed that they put him through all of that and then cancel it at the last minute. The head dr decided that Connor didn't need the tap (even though I was told they needed to look for changes and it was the only way to do some of the metabolic tests that they needed). Now they are changing everything!
The next they decided to refer him to the metabolic team and see if there was a test that the roving neuro docs didn't think of that could help with this puzzle. Then we were told that they were going to do something called an MIBG scan. It is a nuclear medicine scan and he will be injected with an radioactive isotope and the next day he will get the scan to see if there were any "hot spots". I had never heard of this test but I found out as soon as we got home. They are looking for cancer. Neuroblastoma to be precise. I was devastated. They also were going to finally get him rehab. He was evaluated and started physical, occupational and speech therapy. They were going to give him all 3 therapies 7 days a week while he was inpatient. After we were discharged the social worker was going to set him up with the therapy at home with the early intervention program.
This was all Thursday and Friday. I was happy he was starting therapy to try to stop the regression for now even if it wasn't going to get us where we should be yet at least it was something. We had been evaluated by speech therapy by the end of Friday with the others to come in the next day. In the mean time Connor has been getting sicker with the diarrhea, not eating, the coughing and wheezing. I knew he was getting bad but every time we tried to get them to address these things we were blown off. Just like we have been blown off about the way his face has been getting really puffy. They look (or pretend to look) and then go on to whatever else they had on their mind.
This is the point that I start to lose it and the fight begins. That I will save for the next post.
We were told we would be in until Wednesday and that was the earliest we would get out. So we were planning on flying my mother-in-law in from Texas so that our 7 yr old could come home and go to school. She had been staying at my mom's and there was no way my mom could get her back and forth to school. Plans changed from one second to the next while we were in the hospital. Connor kept getting sicker from a virus (he was diagnosed with RSV a respiratory virus while we were in there) and diarrhea that the dr's kept ignoring because it didn't have anything to do with his neurological problems. Although any virus or illness can make all of this worse. My mother-in-law God Bless her heart is on stand by for the next upheaval. She is ready to fly here if/ when we need her.
When Connor was admitted he was supposed to have a spinal tap the next day. They didn't know the time because he has to go through the sedation unit and they were hoping for a cancellation due to the weather (we had a bad storm which closed all the schools in Phili). Because they didn't know the time that all this was going to happen Connor was not allowed to have anything to eat or drink. It was a miserable 6 or 7 hours (his last bottle was the night before and he hadn't eaten anything since breakfast the day before and he didn't eat a lot then). We finally got the time for his test and we had a half hour to go. Then the roving neurologists (that is what I call all the neuro dr's that come crowding into Connor's room everyday) come in and say in passing that they cancelled his spinal tap. I was pissed that they put him through all of that and then cancel it at the last minute. The head dr decided that Connor didn't need the tap (even though I was told they needed to look for changes and it was the only way to do some of the metabolic tests that they needed). Now they are changing everything!
The next they decided to refer him to the metabolic team and see if there was a test that the roving neuro docs didn't think of that could help with this puzzle. Then we were told that they were going to do something called an MIBG scan. It is a nuclear medicine scan and he will be injected with an radioactive isotope and the next day he will get the scan to see if there were any "hot spots". I had never heard of this test but I found out as soon as we got home. They are looking for cancer. Neuroblastoma to be precise. I was devastated. They also were going to finally get him rehab. He was evaluated and started physical, occupational and speech therapy. They were going to give him all 3 therapies 7 days a week while he was inpatient. After we were discharged the social worker was going to set him up with the therapy at home with the early intervention program.
This was all Thursday and Friday. I was happy he was starting therapy to try to stop the regression for now even if it wasn't going to get us where we should be yet at least it was something. We had been evaluated by speech therapy by the end of Friday with the others to come in the next day. In the mean time Connor has been getting sicker with the diarrhea, not eating, the coughing and wheezing. I knew he was getting bad but every time we tried to get them to address these things we were blown off. Just like we have been blown off about the way his face has been getting really puffy. They look (or pretend to look) and then go on to whatever else they had on their mind.
This is the point that I start to lose it and the fight begins. That I will save for the next post.
Monday, February 25, 2008
Feb 21, 2008
Connor was due to be at the hospital's sedation clinic at 2:30 for a 3:30 scan. I called our neuro dr earlier that morning because of some new symptoms he was having. They weren't a big deal by them selves but put together they were bothering me. Things like a fever over the weekend (it seems to be a big deal among the dr's if he has one but no one will tell me why), he started to choke when we feed him (he will choke of the food if it has any texture, bottles at times and even his own drool. He was never a baby to choke. even as an infant when alot of babies do), he is holding his head like he is in pain at times and when that happens it gets alot worse if we try to lay him down, he also is much more irritable. For Connor that is usually putting him where most babies get when they have a cold. He is just not an irritable baby and never has been. Which has been a big problem with getting the dr's to listen to us. He had pneumonia with a 102.5 fever and when we took him to the dr's they acted like I was crazy. He was talking and flirting and smiling. He even let the dr hold him. I don't really think they believed me until they listened to his lungs. After that the dr just kept saying I can't believe him. He is such a good baby!! She kept coming back to hold him. So, having him so easy going has been a big barrier in trying to get the dr's to believe us and diagnose him.
Anyway, with the combination of symptoms I called our neuro dr and she called back and wanted us in the ER at Children's Hospital of Phili (CHOP). She called us at 10 am and told us to pack a bag or 2 "just in case". We were on the road in less than 1/2 hour. We also had an accident about a mile or 2 later. Not our fault, no one hurt and not much damage but did slow us down. We got to CHOP and the er finally called us in and the neuro team checked him out. No one wanted the MRI to get cancelled so we were rushed. One dr examined him with Joe staying with Connor and 3 more dr's "interviewed" me to get the story and facts. We were then sent off to the sedation clinic with a stop at the lab to get the vials we needed for the blood work. They were going to do it all when they started the iv so that he didn't have to keep getting stuck. We got to the sedation unit at 2:45 15 min past when they wanted us. They then told us we needed to go register. I explained that we were just in the er and I was told that because the ER discharged us we needed to re register. We went to do that and at the registration desk the lady calls over and asks if it is OK to still register us because we were late (now 2:50). I was seconds from blowing now. I was close before and then this. If we were told no it would not have been a pretty site. I looked around to say something to Joe about it and he was no where to be found. He just disappeared!!! Once he knew that things were getting out of control and I was ready to "go off" as my kids say he took off.
We got through registration, were then sent to the waiting room. Someone came out and got us and took us back to the sedation clinic and they tried to send us back to the waiting room because they weren't ready for us and they were running behind. The girl that brought us back was told to bring us back. This is a recurring theme throughout our stay. No one knows what the others are doing and too many people have too many opinions and no one follows through.
Long story short (kind of long already don't you think). Connor got his MRI (I am told that it was normal but it will be a few weeks before I get the results to see for myself), he did not get the blood drawn because of more miscommunication, our Neuro dr's lost us, found us and admitted us (after the sedation unit almost discharged us but I stopped that until they checked to see if Neuro wanted us admitted). The rest of the hospital story will have to wait till tomorrow because I am exhausted. I having been fighting dr's for days now and watching my son get sicker while we just keep "waiting". I will fill you all in more tomorrow but for now Connor is home and asleep in his own bed finally (he didn't go out till after 1am). He is sicker now too and I am worried that he is going to end up in another hospital for this RSV that he has now.
Joe and I wanted everyone to know how much we appreciate your prayers and well wishes through out this whole nightmare. Connor can use all the prayer he can get right now. Thank you all for caring so much.
Anyway, with the combination of symptoms I called our neuro dr and she called back and wanted us in the ER at Children's Hospital of Phili (CHOP). She called us at 10 am and told us to pack a bag or 2 "just in case". We were on the road in less than 1/2 hour. We also had an accident about a mile or 2 later. Not our fault, no one hurt and not much damage but did slow us down. We got to CHOP and the er finally called us in and the neuro team checked him out. No one wanted the MRI to get cancelled so we were rushed. One dr examined him with Joe staying with Connor and 3 more dr's "interviewed" me to get the story and facts. We were then sent off to the sedation clinic with a stop at the lab to get the vials we needed for the blood work. They were going to do it all when they started the iv so that he didn't have to keep getting stuck. We got to the sedation unit at 2:45 15 min past when they wanted us. They then told us we needed to go register. I explained that we were just in the er and I was told that because the ER discharged us we needed to re register. We went to do that and at the registration desk the lady calls over and asks if it is OK to still register us because we were late (now 2:50). I was seconds from blowing now. I was close before and then this. If we were told no it would not have been a pretty site. I looked around to say something to Joe about it and he was no where to be found. He just disappeared!!! Once he knew that things were getting out of control and I was ready to "go off" as my kids say he took off.
We got through registration, were then sent to the waiting room. Someone came out and got us and took us back to the sedation clinic and they tried to send us back to the waiting room because they weren't ready for us and they were running behind. The girl that brought us back was told to bring us back. This is a recurring theme throughout our stay. No one knows what the others are doing and too many people have too many opinions and no one follows through.
Long story short (kind of long already don't you think). Connor got his MRI (I am told that it was normal but it will be a few weeks before I get the results to see for myself), he did not get the blood drawn because of more miscommunication, our Neuro dr's lost us, found us and admitted us (after the sedation unit almost discharged us but I stopped that until they checked to see if Neuro wanted us admitted). The rest of the hospital story will have to wait till tomorrow because I am exhausted. I having been fighting dr's for days now and watching my son get sicker while we just keep "waiting". I will fill you all in more tomorrow but for now Connor is home and asleep in his own bed finally (he didn't go out till after 1am). He is sicker now too and I am worried that he is going to end up in another hospital for this RSV that he has now.
Joe and I wanted everyone to know how much we appreciate your prayers and well wishes through out this whole nightmare. Connor can use all the prayer he can get right now. Thank you all for caring so much.
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