Thursday around 4:30 am we got a call from the hospital saying DIllon had a 30 minute seizure and that he was now in respiratory distress and being sent to the PICU. I started telling them it was NOT a seizure... he was wanting to be moved or comforted but his extensions were NOT seizures.
Josiah and I are tired of this happening - this is the 4th time he has been admitted in a row where they ignore what we tell them and do what they want. Last time we got an EEG done to prove it, and it was exactly as we said. Those extension movements are purposeful. So at 4:30 am we woke Jay up (we had only gone to sleep around 1am) and came to the hospital.
We got to his PICU room to find about 10 people around him and the doctors wanting to insert a breathing tube. I asked them to just give him some time to calm down. He was moaning and groaning from all they had done to him. They tried to get an IV and failed, they did put another one in, they gave him 3.5 doses of a seizure drug, they stuck a nose trumpet (a large straw) down his nose past this throat, he was bleeding from his nose, they had him in jaw thrust, etc. They knew we were not happy about the seizure drugs and agreed to give him a few minutes. Sure enough as soon as they left him alone he calmed down and didn't even cough for over an hour.
I went down to talk to his nurse and the residents who administered the drugs to find out directly from the source what happened to make sure it was the movement that I know is NOT a seizure. Here is what I was told (see how many contradictions you can count!):
Main Nurse: She had NO idea how many times he had the movements that I told her were seizures during this 30 minutes. I asked over and over and over for a ball park idea of how many she saw. Her answer: I don't know, I have no idea. (What on earth is she putting in her nurse's note if she didn't bother to count at all??) Finally after I pushed her for an answer and wouldn't stop she finally said 2-3 in a ten minute time. (Hello! I told them he has 30-40 in a day so 2-3 is not a lot! Especially since I told them he does have clusters - so when he has one he usually has several in a row.) She told me Dillon's oxygen was in the 70's. I asked if it was a real read because at home if he is tight it might say 60-70% but as soon as you get him sitting it jumps to 99% or so, therefore it was not able to pick up a good read with him that tight. She told me they had a beautiful wave on the oxygen reading so they KNOW it was a real read.
Resident 1: She was quite mad at me for questioning their decision at all and didn't understand why I was upset. The resident who admitted Dillon walked up to us when she was talking to me and was asking where Dillon went and she was yelling at him to "just leave" and that she would talk to him later but to just leave. He looked at me very confused because he was the one who thought Dillon was ready to go home by Friday morning. I asked this resident who was in the room if anyone in this time pulled up his neuro report to see what IS and what is NOT a seizure. She said "30 minutes isn't as long as you think." Again I asked if someone, anyone at all was trying to look at the reports. Finally she said no. She said his heart rate was over 200. I asked did anyone look to see if he has a cardio report on file because his cardiologist has cleared him to be over 200 as long as it isn't for months at a time. She refused to answer me and I point blank told her to stop side stepping my questions and give me a straight answer. She still wouldn't so I said "So that's a no?" Finally she said no, no one tried to see what his cardio records were.
Senior Resident: Again, he was quite annoyed with me for questioning him (and writing everything he told me down) But by the end of our conversation I think he at least understood why I was upset at this happening AGAIN. But here is his version of what happened. Dillon was extremely tight. He said he knew that the "scissor motion" that he makes with his legs is not a seizure, but this wasn't a full scissor motion - this was a thumping. I asked did you think of the fact that he has a dislocated hip and that he just may not be able to do the full motion... no. He told me Dillon's heart rate was in the high 200's. I asked what does that mean 280?? He said 240-250. Then later in the conversation he said 260. So I asked which is was. He said he wouldn't give me an answer that I could look at the machine when it came back from the PICU to see if I want. He told me Dillon's oxygen was in the 70's the whole time.
Helping nurse: Said the whole time she was in the room she never saw a single time when he had the seizure movement that I described to them... NOT ONE! She was the nurse who recorded the vitals and told me his heart never went above 215. She told me that majority of the time this was going on the machine was not even picking up an oxygen read at all! Not that it wasn't a good reading - but that there was no reading at all because he was so tight.
Needless to say I was NOT happy. When I was going over everything with the neuro resident he finally said "So we have no idea what really happened." And that it is like a bank robbery where there are 100 witness and everyone's story is different. So then the Attending Neuro came in and said that Dillon is scheduled for more drugs he wants Dillon to continue to get seizure drugs. I said "no, there's no reason for them" He said that when his residents were in the room Dillon had two seizures and he tightened some. I was here! He tightened right after they had just been pounding on his knees, ankles, and arms to test reflexes. So I told him no to the drugs. Oh yeah, he also said that Dillon was Dilantin - which he NEVER GOT this trip, they used a different one. So the attending had not even read the record close enough to know what medicine they used! (After he left I asked the nurse when was he schedule to get these drugs again- he wasn't! The attending neuro didn't know what he was talking about again!) I asked him if he had read Dillon's last EEG report. He told me he didn't read the EEG. I asked again, "No, I don't mean the EEG, did you read the report from the lasts EEG?" "No." So here he is coming into our room, not knowing what drugs Dillon had been given, not knowing if he was scheduled for more or not, and not having read the last report even though he knew there was disagreements between if this was or was not a seizure!!!!! He ordered for another 24 hour EEG - so that this won't happen again if it isn't. I asked what good would that do - we did that exact thing last time and it didn't help at all. I asked if we have to put him on an EEG the moment his gets here every single time? Nevertheless he ordered for the EEG again.
They kept the nasal trumpet in Dillon with CPAP going through it. When they took that out on Friday he did great. His heart rate actually went down and his oxygen went up! He was on only 1-1.5 LMP with the nasal cannula yesterday and his CPAP at night. He did have to have a little more oxygen with the CPAP than normal though. Today he is on 1 L and doing great. They are trying to move him from PICU back to Pulm floor but there is no bed open at the moment.
Oh yeah - and just for anyone who was still wondering - Neuro came back yesterday and told me that NONE OF THE EXTENSION MOVEMENTS ARE SEIZURES!!!! Imagine that, exactly what I told them was proven right again! All his seizures were less than 10 seconds each! They didn't have a count yet on how many he had in the 24 hours, but I have requested the report so I will find out soon. We now have a sign posted above his bed that says what is and is not a seizure. We put on there what to do for him if he is in extension and to please read the neuro reports. Hopefully this will help. But I still don't want him here alone at night. I don't trust them, they do what they want. They don't listen to me. It is always at night with the residents that this happens. They haven't learned to trust Moms yet, they still think they are smarter than Moms and that we don't know what we are talking about. Josiah had to work last night so after 5 nights of very little sleep I got to sleep at the Ronald McDonald house with Jay while he stayed here and worked during the night. Oh the neuo told me they might still use these drugs - even if it isn't a seizure - just because he was tight. I asked them if they would walk into a room with a normal 3 year old that was red in the face, high heart rate, high respiration, tight muscles because he is throwing a temper tantrum in the middle of the night and drug HIM with seizure drugs. They said "no." "So why are you doing it to Dillon?" I asked. They had no good answer. I told them they need to learn to reposition and comfort rather than drug when a 3 year old is upset in the middle of the night.
We did get X-rays. Dillon's hip is dislocated. But Ortho told our docs that they didn't have time to come talk to be about how to position Dillon - that we should just figure it out based on how he tolerates it. HELLO!?!?! So our resident kept calling and finally got a ortho resident to come talk to me. But he didn't know much. He kept saying things like "But this is just my opinion, I'm not really sure, you should talk to an attending, that is just what I see in the X-ray but an attending might see something different." Great you're a help. He told me that no position will make it worse, but couldn't tell me what might be hurting him. He told me he thinks the hip has been out since birth and that he will have to have surgery in a few years to grind out the hip socket that it isn't formed right. "But he doesn't know for sure." He doesn't know if Dillon should have a lift under him in the stander or not - let me PT decide. But she doesn't deal with dislocated hips much so she already told me she wasn't sure. Ortheo should be telling me this. He thinks our patterning is ok - as long as he tolerates it. Is he not getting the fact that Dillon can't tell me "Ouch, or mommy that hurts"??? How am I supposed to know if he is mad that it hurts, that something else hurts, or that he is just mad that I am making him do therapy. I don't know! GRRRRR - is anyone guessing how frustrated I am by now?
Sorry this is long, I know people were wondering how we went from "we should be out tomorrow" - to the PICU for several more days. Please pray about this The senior resident that gave him the drugs told me about a program here called ICS which means that if he is selected for it when he gets admitted it would be in a different part of the hospital where the same team of 4-5 docs and nurses would always be in charge of his care. This would make a HUGE difference! The doctors would all know what is a seizure, what is not, what to do for his extension movements, etc. The only reason he went into resp distress is because of what they did to him. It was horrible and it was all unnecessary and it is the FOURTH time this has happened to him here. Please pray we would be able to get into this ICS so this doesn't keep happening to him. I have to talk to my Puml doctor - I am hoping I can find him Monday - and see if he can help me get into it. They are very selective of course in order for it to be what it is, but I am hoping they will let him in. He can't keep getting 3 doses of seizure drugs for no reason.
Please keep praying for us. Dillon had a fever of 102 yesterday, but that is normal for RSV. We are all tired and it is plain annoying to deal with this nonsense. I can't wait to come home. Thank you to everyone who has emailed, posted on facebook, and sent the CHOP ecards. It is encouraging to know that people are praying (in fact I am sure that is the only reason I have had the strength each day to keep going!!)