On Thursday we were supposed to head to CHOP by 10:30 at the latest to get there for his 12:00 shot. The night before I had something just pop into my head. Gee I wonder if anyone got this preauthorized? He was supposed to get this scan and it was set up by the hospital a few weeks ago. But, the way things were going I wasn't taking any chances. I called our ins co first thing in the morning. That turned into a nightmare of hours of phone calls Joe and I were both making and up till the time we left we still didn't know if we were going to get this done. Actually we didn't find out for sure it was going to happen until we were over a half hour into our drive. No one bothered to get the scan authorized. I don't blame my dr for this because she doesn't usually order this test. The original one should have had the authorization but there was nothing on file. That started this experience on a great note.
We got to the hospital to find out that the "shot" he needed was actually a iv that they were going to put it in to give the medicine, take it out when done & then put it in again the next morning. I convinced them to let him go home with the iv and I would flush it. The worst that could happen is that he would pull it out or it would become dislodged and we would have to do it again on Friday morning anyway. Connor has very deep veins and he is not an easy baby to get an iv on to begin with so they were more than willing to give it a try. They gave me all the stuff to flush it and thank God it stayed in place and they were able to use it.
Shot went fine. They have to give it slow because if given too fast can make him sick. The next morning was a nightmare. Between traffic and construction it took us over 2hrs to get there. We were already late then we couldn't find a place to park. I was so afraid they were going to tell us that they couldn't do it. I was practicing in my head the argument I was going to have with them. There was no way that they were not going to do this test!!!! Scan was supposed to start at 11:00 but didn't get started till just after 12. He did fine and woke up easily. Now we wait. I plan on calling his neuro dr on Monday. They have to know something by then. I hope. I will keep everyone posted as things unfold.
Saturday, March 15, 2008
Tuesday, March 11, 2008
3/11 Heard from the Dr's
I made calls to all the dr's again on Monday and guess what. I HEARD BACK!! I finally got somewhere. I didn't speak to Connor's neurologist but I did hear from her office that she wants us to go ahead with the MIGB scan and she will see us after she gets the results. Connor's pediatrician did not get the first message I left her. By her reaction I really believe this. I don't think she was just saying this to cover her butt. She immediately called his neuro dr and called me back. We are to see her on Tuesday next week so she can examine him and keep on top of everything.
Connor's scan is scheduled for Friday the 14th. We have to go to CHOP on Thursday for the shot of radioactive stuff and then Friday morning he goes for the scan with sedation. They say God works in mysterious ways and that everything happens for a reason. I can now say thank God Connor got sick and was not able to have the scan a few weeks ago. When I rescheduled his scan I was told he will need to start the drops a day before he gets the shot. I then asked them "what drops?" Come to find out Connor needs to take drops the day before the shot and for 5 days after. It is potassium iodine drops. The same stuff that anyone living near a nuclear plant has heard about since 9/11. It protects the thyroid from radio active exposure. The shot he has to get could either kill off his thyroid or give him thyroid cancer. No one even mentioned this before. Connor's neuro dr is not the one who ordered the test. In fact this test is usually ordered by oncology. She ordered it for me this time but the main "roving neuro dr" at chop ordered it. He never even mentioned these drops when they discharged Connor and he would have had to start them the day after we were discharged!! Everything happens for a reason. I thank God we didn't get to do the first scan.
I don't know what the metabolic studies have shown. When I asked the neuro dr's nurse she said she didn't see anything in Connor's chart. She would look into it and get back to me. Our pediatrician called them within 5-10 min of my speaking to them and they told her that they all came back normal. So, that is something else I need to check into. I was told that the MRI of his brain and spine was unchanged and normal but they told me the last MRI was normal and when I got the report it wasn't. I am still waiting for that to come in so I can see it for myself.
If this test comes back negative I am going to put on a major push for either the steroid treatment of the IVIG therapy. We can't keep waiting for this to clear up on it's own because it's not. I haven't had a chance to get the therapies set up in the house for him yet either. We were so busy trying to take care of him when he was sick and of course I have whatever is going on with everyone else in the house on top of taking care of Connor and trying to keep him safe. I will make that call as soon as I get this scan done and get the results. We should have at least a preliminary report back early next week. I will post after his scan and let everyone know how he is doing. Please continue to keep Connor in your prayers. As far as I am concerned this is the scariest test yet (not the scan itself but what it could mean) and I am going to be a wreck till we have these results.
Connor's scan is scheduled for Friday the 14th. We have to go to CHOP on Thursday for the shot of radioactive stuff and then Friday morning he goes for the scan with sedation. They say God works in mysterious ways and that everything happens for a reason. I can now say thank God Connor got sick and was not able to have the scan a few weeks ago. When I rescheduled his scan I was told he will need to start the drops a day before he gets the shot. I then asked them "what drops?" Come to find out Connor needs to take drops the day before the shot and for 5 days after. It is potassium iodine drops. The same stuff that anyone living near a nuclear plant has heard about since 9/11. It protects the thyroid from radio active exposure. The shot he has to get could either kill off his thyroid or give him thyroid cancer. No one even mentioned this before. Connor's neuro dr is not the one who ordered the test. In fact this test is usually ordered by oncology. She ordered it for me this time but the main "roving neuro dr" at chop ordered it. He never even mentioned these drops when they discharged Connor and he would have had to start them the day after we were discharged!! Everything happens for a reason. I thank God we didn't get to do the first scan.
I don't know what the metabolic studies have shown. When I asked the neuro dr's nurse she said she didn't see anything in Connor's chart. She would look into it and get back to me. Our pediatrician called them within 5-10 min of my speaking to them and they told her that they all came back normal. So, that is something else I need to check into. I was told that the MRI of his brain and spine was unchanged and normal but they told me the last MRI was normal and when I got the report it wasn't. I am still waiting for that to come in so I can see it for myself.
If this test comes back negative I am going to put on a major push for either the steroid treatment of the IVIG therapy. We can't keep waiting for this to clear up on it's own because it's not. I haven't had a chance to get the therapies set up in the house for him yet either. We were so busy trying to take care of him when he was sick and of course I have whatever is going on with everyone else in the house on top of taking care of Connor and trying to keep him safe. I will make that call as soon as I get this scan done and get the results. We should have at least a preliminary report back early next week. I will post after his scan and let everyone know how he is doing. Please continue to keep Connor in your prayers. As far as I am concerned this is the scariest test yet (not the scan itself but what it could mean) and I am going to be a wreck till we have these results.
Monday, March 10, 2008
Quick Update 3/9
Just a quick note to let everyone know that things are pretty much the same on this end. Connor has gotten over the RSV & stomach virus that was making him so sick. Neurologically he is the same. He is still walking like he is just learning or drunk and other times he can't even stand up without falling backwards. He is still not talking and has started to try to get us to understand him by pointing and grunting. If he wants a toy opened or something he will take our hands and put it on the toy. He loves to play with the wipes box but if it is closed he will take my hand and put it on top of the box and grunt. If I move my hand he will just keep putting it back on until I get it and open the box.
So far we have not heard from any of his doctors. They released us on that Sunday and I put out calls to everyone on Monday because he was too sick to have the scan. They would not sedate him. I called and let his neuro dr know and asked her to call me back and to date I have not had a return phone call. I am making calls tomorrow again and if I don't hear from anyone again I am not sure what I am going to do. I will have to do something and assume we have been abandoned and try to find someone else to take his case. Right now we have been on our own since 2/21 when they discharged us from the hospital. He has not been examined by anyone for any of the neuro problems. He has seen a pediatrician when he was sick and in the er but that is it. We have no plan of action and no idea what we are supposed to do.
Please keep Connor in your prayers. He really needs them.
So far we have not heard from any of his doctors. They released us on that Sunday and I put out calls to everyone on Monday because he was too sick to have the scan. They would not sedate him. I called and let his neuro dr know and asked her to call me back and to date I have not had a return phone call. I am making calls tomorrow again and if I don't hear from anyone again I am not sure what I am going to do. I will have to do something and assume we have been abandoned and try to find someone else to take his case. Right now we have been on our own since 2/21 when they discharged us from the hospital. He has not been examined by anyone for any of the neuro problems. He has seen a pediatrician when he was sick and in the er but that is it. We have no plan of action and no idea what we are supposed to do.
Please keep Connor in your prayers. He really needs them.
Friday, February 29, 2008
2-29 Another ER Trip
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.
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.
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.
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