I received a phone call this morning that the neurosurgeon had reviewed the X rays of Jude. He said that the catheter looks to be in the right place and so does the pump. Before I share the conversation I would like to express that I am in no way rude to the office when they call.
Me: Okay so what are the next steps that they propose
Nurse: Well they said everything great and they will see you Thursday
Me: but everything is NOT great! Nothing is great. Jude is very ill and keeps having these attacks. It's not fair that this little boy has to suffer throughout the day with this awful situation
Nurse. (bless her heart). I am so sorry. I understand.
Me: Yesterday the PA called me to let me know she was having the doctor review the X rays and she herself said that after seeing Jude this is a "scary situation".
Nurse: Jennifer I want you to know I understand your frustration and if this was my child I would be so upset. Let me read what the PA put in the system (reads). Oh my....yes she voiced her concerns but it hasn't gone to anyone else yet.
Me: I just don't know what else to do. Did you know I requested a patient care meeting with us and his doctors to all get on the same page and it was refused?
Nurse: Yes I heard and I just don't understand that
Me: Jude has okay days but my fear is on one of the bad days he is going to go into cardiac arrest because it's just to much for his body to handle
Nurse: and I think that's a reasonable fear
Me: To me it seems like Jude goes through the classic symptoms of Baclofen withdrawal. We amp up the Baclofen, put on a patch of clonidine, and Jude seems out of it. Like he is over sedated. Then a few days later he is full spastic and in a lot of pain. This may just be a situation with the pump itself but it could also be a leak they aren't detecting
Nurse: yes that happens for sure
Me: but everyone's answer is just to keep turning up the Baclofen. When do we get to a point that it's decided it's not the lack of Baclofen?
Nurse: (quietly) I think it's about time you wonder if it's time to work on turning the pump off. I am going to send an email to the doctors and tell them BOTH about our conversation.
Me: another thing. I appreciate that Dr Roberts is doing his best, but I am tired of him telling me everything is fine! It's NOT fine. I don't mean to be rude
Nurse: You are not rude at all and I completely understand why you are so frustrated.
So basically that was the conversation. So again today I am just so frustrated. Jude had another attack last night where I had to give him Valium. He eventually relaxed but never fully. Charlotte said he is happy today so hopefully today will be a good day for him. I know he has to be tired. His PT told Charlotte that she works with a lot of kids with Baclofen pumps and she hasn't seen this. She said it's just not good. Charlotte even suggested going to the hospital and demand they check him in to find out the issue, but I am not sure that would do any good. I doubt they would even admit him.My husband mentioned that he is sure they are leary of a lawsuit at this point. We don't want attorney's...we just want Jude better!
I also had Jude's ARD this week with his school. If any of his teachers are reading his blog know my distance in the meetings is not because I don't care. It's just another reminder to me that Jude is not normal, cannot attend school, and that things are not well. So I just listen and then read the progress reports you send.