12/27: Evening Update - serious thoughts

Emily had a good day. She is still intubated, but relatively happy despite the discomfort of having plastic in her airway.

Today launched long, gut wrenching discussions about giving Emily a Tracheotomy (a tracheotomy is the actual procedure while a tracheostomy is the result.. the whole or "mouth" in the neck -- just to clarify). All the doctors and specialists here at Hopkins are very concerned about Emily's ability to protect her airway. We share their concern b/c Emily has a very difficult airway (she is very hard to intubate), but we don't necessarily share their approach to rectifying the situation with a Trach. We obviously have to consider the idea b/c of the complications associated with SMA and respiratory illnesses, so we have been struggling with that today... alot. A trach represents a lot of things to me personally. There are the less legitimate concerns of aesthetics - they don't look that great and create speech difficulties as well as mobility difficulties. But the more complicated issues it presents is knowing when to say enough is enough for Emily. SMA kills kids. That's a fact. My impression, be it right or wrong, is that a trach and mechanical vent for Emily would inhibit our ability to assess Emily's happiness and ultimately her desire to live. I never want to be in that situation. I never want to be sitting here suddenly realizing that I've been so focused on Emily living that I'm incapable noticing her suffering. Never ever. That is not where we are now, but it is where we could find ourselves.

At this point we are not going to pursue a trach and I feel that tomorrow we will pursue transferring Emily to the University of Wisconsin Children's Hospital in Madison, WI, where there is an SMA Pulmonary specialist, Dr. Schroth. If not only to get a second opinion about this, but also b/c we are more comfortable with her knowledge about SMA kids difficult airway problems specific to kids like Emily and we know she shares our feelings about the trach. Could we find ourselves in the same situation there? Certainly. But I believe so completely in their ability that I am willing to take that risk. I am praying that these decision we be clear and that our insurance company will respond the way we need them to.

So - that is the situation. The up and up part of this is we are no longer fighting for an SMA protocol in the Hopkins PICU. As of today, any SMA or neuromuscular family that comes to Hopkins should be able to request Emily's protocol for themselves, which is based on Dr. Swoboda and Dr. Schroth's own PICU protocols -- evidence that the system can change. A doctor was given the responsibility of clearly writing how Emily is to be cared for from a respiratory standpoint based on our recommendations. I do not believe this has been at risk to Emily. She has RSV, it's horrible, and we wouldn't be home yet even if we were in Wisconsin. We'd be in nearly the same situation we are in now, minus the trach discussion though. There are still differences in opinion about fasting here, but that can be circumvented by pushing the timely request for PPN or TPN for extubation day and they are willing to negotiate the fasting time a bit.

Peace <><


Joanna said…
We are praying for God's wisdom and that you will see Emily and what she needs through the eyes of Yeshua. You are such good parents! It is a blessing to us to see the love and care you show your children.
Anonymous said…
You guys are just awesome people and I hope we get to meet you someday! I feel so much for your decisions and I am with you when you say that if Dr. Schroth says it's time to trach, then so be it. I would feel the same way wanting to hear it from HER. I share your views on the trach and am praying that the decision is quite clear to you. It's reopened the discussion in our family as we had always said we would not do it . . . but there are so many circumstantial things. We should NOT have to make these decisions as parents and we are praying for God's guidance on this one that He would make it so clear to you so you don't have to struggle with your decision. If you are still in Madison on Jan 7, we will be visiting Dr. Schroth then. Obviously we REALLY hope you are home by then! Thinking of you guys. Know that we are ALL thinking of you so much throughout the day! Give Emily a hug for us and know that we are so proud of you guys. We fought the same battle just a few months ago so we sympathize.
Sarah Turnbull (Stella's mommy)
Sky said…
Nate you are ALL in our prayers!!! Hugs Sheila and Skylar
Todd Paris said…
praying bro!
Anonymous said…

We are praying for you and Diana with this discussion about a trach. We are praying for wisdom about the transfer and what it entails, as well as for approval from all sources to do whatever is necessary for Emily. I'll be in touch.

Steve Green
Anonymous said…
Thanks for the continued updates and details. It really helps prepare me and think about Ally's future hospital stays and decisions we may have to make.

I will be praying that today goes smoothly for Emily and for you and Diana as you possibly work on a transfer and debate Emily's options.

Time with Dr. Schroth seems like it might be very helpful at this time and to help with future plans. Any decisions you make as Emily's parents is what is right.

Your friend,
Mike Milligan said…
Not doing the trach at least for now sounds like the right course. I will continue to pray for you guys to have the wisdom to make the right decisions.
Nancy Lee said…
From The Message: James 1:5

If you don't know what you're doing, pray to the Father. He loves to help. You'll get his help, and won't be condescended to when you ask for it. Ask boldly, believingly, without a second thought. People who "worry their prayers" are like wind-whipped waves. Don't think you're going to get anything from the Master that way, adrift at sea,keeping all your options open.

The Message: James 1:5

Anonymous said…
We're praying and crying and getting mad and sometimes even smiling with every line we read! Chris grew up in Madison, so if you find yourselves going to WI and want some insider info, just ask...

Pam & Chris Sikora
Anonymous said…
Nate- we're thinking of you guys! Give us a hollar if you need to vent :) you know we're here for you!!! Give the girlies hugs from us.
Nate said…
Thank you all for your continued prayers and for keeping up with the blog. There are VERY frustrating times and other very GOOD times -- it's the worst roller coaster I think I ever want to ride. Peace <><