Thursday, September 4, 2014

A whole LOT of information, another procedure, and a new care team for Jude.

So we met with the PA today at the doctor office who talked to us about removing the Baclofen from the pump and inserting saline. She then measured the amount of baclofen in the pump and went to go talk with the doctor. The actual doctor came back in and told us that the Baclofen was higher than he thought in the pump and that they would need the simply turn the pump down at this session. Then he programmed the pump to go down again on Sunday. Finally he scheduled another appointment on Tuesday to perform the procedure to insert the saline.

He answered all my questions but the encounter didn't start off fabulous. I explained I wanted to find out what was going on with Jude. He responded Jude didn't have a normal brain and that's what's going on. That Jude's system doesn't respond like ours. You can picture my face right now can't you? I have cocked my head to one side and thinking "Oh no you didn't". So I told him, "I know Jude's brain is not normal and let me reiterate that Jude didn't have these issues prior to the surgery therefore it leads me to believe it's either the medication, the surgery itself, or the hardware". After that we were both very kind to each other and worked together to try to find the best possible solution for Jude. We talked about my conversation with the neurosurgeon and I was impressed that he said it's just not a good time to put Jude under anesthesia to remove the pump. He knows Jude isn't in the condition for that. He explained that removing the Baclofen from Jude's Central Nervous System will give us a place to start. If Jude gets better and the attacks weaken then our answer is found! If they don't then at least we know it's not the Baclofen itself. So then we ask if it's because we need more Baclofen, if something happened in surgery, or if it's the hardware. So to rule out one measure of the hardware they are going to take a sample during the procedure Tuesday to see if there is an infection has developed around the pump. The doctor assured me that if there is and infection then Jude can go awhile prior to removing the pump. I felt relieved that we finally have a plan of action.

I also asked the doctor if Jude's attacks that drive his heart rate so high could result in cardiac arrest. He said generally he sees that from the heart beating to slowly but it is a rare possibility. I know doctors think us moms overreact so then he asked, "just how high is high?". I replied 210 or more at times. He said "Oh that is high". He said if he recovers then not to worry and gave us some tips on getting Jude's heart rate lower including rubbing the side of his neck and ice water on his face. I told him that Jude looks much better to me the last two days but at times during this situation I have been scared for his life. I explained that I didn't want to lose Jude because of a decision we made to try to alleviate his pain. He was very sweet. He explained that we cannot look at the surgery that way. That Jude's situation wasn't "good" before the surgery and we were just trying to help him. He said children in Jude's situation (and he paused) die very easily (ugh). He then recommended a Palliative care team for Jude. He mentioned end of life care, but I know he didn't mean it that way. He meant a team of specialists to make sure Jude is getting the best care possible and the best service possible. It's to relieve stress on us and on him. It's generally put in place for children with chronic illnesses. I took the liberty of looking it up (of course)

I think that term "palliative" upset Mike and I can understand his sadness. However I truly believe the doctor was telling us about the team just to help our situation and Jude's. So let's pray that the next week leads to some answers.

Poor Jude came home from the doctors. Laid down on his Futon smiling really big, threw up, and went to sleep.

1 comment:

Reagan Leigh said...

We have had a palliative care team for years, it's very common in chronically ill kids. They just take more work, in pain management and such, you need someone to take the lead! It's been a positive thing for us (except of course when her old doctor nearly killed her by writing her methadone prescription wrong)! Here in Austin they organize care conferences with all of Reagan's doctors to get everyone on the same page (and brainstorming together). It's definitely a good thing!