1/4: Negotiating Emily's Care

We've had ongoing discussions over the last couple of days that have been very encouraging to us. We are still pursuing a transport to WI for Emily, but have also focused on a contingency plan b/c the transport companies, experienced with adults only, will not allow a Hopkins transport team to board their aircrafts. Hopkins feels that the only safe way to transport Emily is with their team and will not negotiate in that regard. So, that means that Hopkins has to go back to Aetna and ask them to broaden their transport options for Emily - this will inevitably prolong Emily's intubation which is not in her best interest. There is also the complication that one of us will not be allowed to board the plane even if Hopkins can reach an agreement with a transport vendor. We feel that it is also not in Emily's best interest to travel via air to WI without one of us on board with her. So, we have suggested that we may cancel a transport if we cannot go with her. That is not final b/c anything can happen, but it is how we are feeling right now.

So, the contingency plan that we have reached:
  • On Sunday we plan to extubate Emily per the recommendations of SMA experts for fasting times, pressure settings, medication, and respiratory management. If, and only if, we are comfortable with Emily's extubation plan we will go through with the extubation.
  • If the extubation fails and Emily needs to be reintubated (HIGHLY UNLIKELY IF THEY FOLLOW THE PLAN), we will have the transport all set up as originally planned and we will head off to WI as arranged.
  • If the extubation is successfuly :) then the attending physician of the PICU will still negotiate a transfer to WI for follow-up respiratory management and assessment. This is not as urgent and we may decide that it is unnecessary. But, we want to have the option if it seems like a good idea for her. We will have to assess the situation after she is extubated.
So, at this point the plan to head to WI is still being developed as well as the plan to extubate on Sun if we are comfortable with the plan.

This is very good b/c it means a lot of things for us and for Emily's care at Hopkins. They are "coming around" to the things we have been talking about incessantly, and we are far more comfortable with the discussions we are having now. Of course, that can all change when a new attending physician comes on duty, but we have enough of this in ink that it will be harder to revert back to where Hopkins was 2 weeks ago, still in the dark as far as Spinal Muscular Atrophy care goes.

There is still the issue that we cannot stay with Emily 24/7 b/c of Hopkins accomodations, but I think we will be home soon. Things are looking good, that's the bottom line. Emily is MORE than happy and seems to have finally escaped the grasp of RSV. Thank you, again, for your prayers, thoughts, encouraging words, and well-wishes. We are not out of this yet, the we are optimistic about pretty much everything at this point.

Peace <><


Anonymous said…
Yeah Lee family!!!! Emily, I KNOW you're going to do great like your buddy Kyle is doing. What a trooper you are and your whole family is so strong. God is good and takes care of those who love Him!!!!
Anonymous said…
We will continue praying for your sweet little girl that she will get well soon and you can all go home. I know your older daughter will be so happy when you all return home as well. Sending great big Texas size Hugs your way.
Sky said…
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Sky said…
It sounds like you have worked out a good plan, I too would not allow Sky to be transported without myself being with him. It also sounds like Emily is moving the right direction and if they fallow the guidelines she should and will do fine on Sunday :) Wow you guys could be home soon, how amazing would that be!!! We will continue to keep Emily, you and Diana and all of the staff there at Hopkins who are caring for Emily in our prayers. Sheila
Anonymous said…
Hi Nathan and Diana-

We are so thankful that Emily sounds like she is doing better and will continue to pray for your family. Specifically, we will pray that all goes smoothly on Sunday and that transport details get worked out soon. I'd like to come by and say hi tomorrow if it's OK with you. Let me know- rynowak@yahoo.com
Junior said…
We continue to keep Emily and your family in our prayers. God give you the wisdom and strength you need to make the necessary decisions and take care of your precious little one.
God bless.