Back to "normal" - you could say that

I can see when we have had visitors to Emily's Updates and I feel so bad that I haven't put anything up to read. So, here we go:

We've been getting back into the swing of things, but as it goes - when you're away from something things aren't always the same when you return. I've wanted to post a lot about our stay on Hopkins, but I'll say these two things for now.

1. We have two allies that are Attending Dr's in the PICU now: Dr. Swartz and Dr. Nelson. Both of these incredible ladies where great. They talked through things with us and met us where we needed them to for Emily's sake. Dr. Swartz even said something to me that made my heart skip a beat... for joy. "You know, we don't see kids as sick as Emily was getting better this fast. I can't believe you guys are already going home! I am really excited about this protocol we've used on Emily and I look forward to trying it out on other SMA kids that are under my care here in the PICU. " WOOOOOHOOOOO!!!!! Thanks so much, Dr's Swartz and Nelson, for working with us and for being willing to use the documentation from Dr. Schroth in Emily's care. I am so glad the timing was right for you to see how well it all worked with Emily. Our SMA kids are amazing and, when cared for appropriately, can "go home early."
   
2. The nurses and RT's were awesome! We, of course, have our favorites, but all-in-all those staff members did an incredible job. We can be a little crazy to endure when fighting for Emily's life, but we managed to develop some valuable friendships with some of the staff there.
   

Other than that it's been back to the grindstone. I'm back at work full-time, Annabelle's back into her school routine, and Diana is busy at home managing Emily's care. There is so much to do with Emily that Diana is thinking about not taking her college courses this Spring, but we'll see how things go.

Something else I've been putting together is SMASpace.com. It is a product of our up and coming nonprofit, Eminnea Inc., but I sensed a need for a social networking site in the SMA community, so I opened it up and people are using it. We already have nearly 100 users. Feel free to check it out if you'd like to -- and tell any SMA families you come across about it.

Please continue praying for Emily's health as we try to outlast the respiratory season. SO MANY SMA kids have been in the hospital, or they are now, with RSV and other horrible respiratory illnesses. Many lives of SMA kids have already been claimed this season by various respiratory difficulties brought on by viruses like RSV... it's very sad. We managed to get through this one, but there is more to the season. Please also pray for us all as we try to get back to the "normal" things in life -- work, school, marriage, friendships, etc. They all suffer during our difficulties -- sometimes badly. Thanks for your support.

Peace <><

HOME!!!

We're HOME!!! I will write a re-cap of our stay as soon as I can -- lessons learned, SMA allies in the Children's Center, and other thoughts. Thanks for your thoughts and prayers.

Peace <><

Going home FRIDAY!!

YAAAYYY!!! We are scheduled to go home Fri morning!! :) :)

So, our time here is coming to a close. We are still adamantly impressing the need for a neuromuscular protocol for the Hopkins Children's Center and will continue to do so after we leave -- but we're outta here tomorrow. We'll get a follow-up with the Pulmonary physicians in a couple of weeks probably, but in the meantime we will be enjoying our time back at home.

Thanks for your recent comments on the blog and emails of encouragement.

Peace <><

PS - On a different note, (I can't write this post without mentioning it) please keep the Peacock family in your thoughts and prayers today as their son, here in the PICU, is losing his battle with Leukemia.

Looking to go home

Well, Emily's just doing great. She is getting respiratory treatments every 4 hours and we are looking to go home by this weekend. We can take care of Q4 treatments at home and it can actually be easier on us to just get back into our routine. It will be SO nice to get back into our own bed, knowing that Emily is just down the hall with a nurse helping us out during the night.

I've been back at work this week and it is amazingly hard to concentrate on anything while I am there, but I'm doing the best I can. I don't know how other dad's do it.

Anyway - Emily's so happy. Yapping up a storm and talking to me about Dora the Explorer. It's been a lot of fun. If there can be a funnest part of being in the hospital it is when medical folks come in to see Emily b/c they "heard she was extubated." They've gotten to know us here and it is great to have physicians, nurses, and respiratory therapists see Emily when she's not down and out on a breathing tube. They get to see that she's still a little beautiful girl full of life and things to do and see. :)

Peace <><

Taking Breaks

Emily had a good day. I've been back at work, so I don't get as much time with Diana and Emily, but the report is that she's doing well. She took three 1 hour breaks off the biPAP today and her oxygen saturation stayed right up there in the high 90's where it is supposed to be. Higher than normal actually. :)

We're not sure when we'll be coming home yet, but were working on it. Emily was getting respiratory treatments every 2 hours, but now we've backed off to every 3 hours -- the goal, in our minds, is to be Q4 so we can get home and continue her care with the family and our nurses. That's what we're praying for. I've been spending MUCH needed time with Annabelle in the evenings and we're very ready to be a family again. Annabelle's a real trooper, but she needs some normalcy for a change as well.

So, things are getting back to "normal" and it will be nice to get back into our routine. Feel free to drop us a note in the comments or via email: ndl@hopeforemily.com.

Peace <><

Doing Well

I've uploaded some new pictures of our stay -- ENJOY!!

1/6: Emily's Extubated!!

... and I couldn't be happier about the events surrounding the process. Thank you so much, Dr. Nelson!!

For the first time in my life I have not had to fight about the extubation process for one of my children. I am walking on air right now. :)

Thank you for your prayers and well-wishes. We are looking forward to being home soon.

Peace <><

1/5: Very encouraging changes

A quick note -- I am so excited today! An couple attending physicians we have only come to know in the last few days have been working closely with us on Emily's protocol and the discussions have been great.

I just had a discussion with the attending that will be extubating Emily tomorrow, Dr. Nelson, and she is excited about following Dr. Schroth's extubation protocol. She is using Schroth's "triage" scoring system to see where Emily is to determine how she looks for a successful extubation and she is comfortable following the fasting recommendations, cough assist pressures, and vent and biPAP settings that are recommended by Dr. Schroth. I just couldn't be happier about the way this is going. Emily is still experiencing some atalectisis in her right upper lung, so Dr. Nelson wants to talk to Dr. Schroth about what she thinks for extubation. All-in-all this is very encouraging and we are encouraged and comfortable with the plan to extubate tomorrow as long as everyone is in agreement that it is best for Emily given her continued right lung issues.

This is what we've really been pushing for and I can feel my body relaxing a bit as we finally are starting to see appropriate measures being taken for Emily's benefit.

Peace <><

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 <><

Approved for Transport!

I just talked with the transport Dr. and went over the details of the transfer.  Aetna approved two transport companies and Hopkins is negotiating business with them. They are having issues b/c Hopkins wants their transport team to accompany Emily yo WI, but apparently the vendors want their own team to go.  Argh!  Anyway, those negotiations are underway and there is nothing we can do about it.  Also, the Hopkins team is larger than usual b/c they want the most expert airway anesthesiologist to go with b/c he is the master of the bronch scope and was able to intubate Emily last week.  They are making sure that everything is in place in case anything happens to Emily en route.

This poses some issues though, b/c if he goes that means we probably can't.  So, if we cannot go Diana or I will have to fly up ahead of time to ensure one of us is seeing her off and the other is receiving her in WI.  That really sucks, but there is nothing we can do b/c the plane can only accommodate a certain amount of weight.  Anyway, they know we desire to go and I believe they will allow it if at all possible.  I am also pushing to allow an RT of our choice to go with b/c there are some awesome ones here. 

If the transport vendors won't budge that will make the insurance request drag on another who knows how many days, so we'd probably just extubate here and go home.  Hopefully we will be able to go b/c we think it is the right thing for Emily. 

Anyway, that's the update.  I have brought up the power issue to make sure that her cough assist will work in the plane or there is a back-up plan in case there are any issues.  Other than that we will talk a bit about sedation during flight, if we want it or not, and what sort of personal equipment we can send on the plane and then one of us will have to get up there in time to meet Emily there.  We still don't know when we're going, b/c of the negotiations with the transport vendors, but hopefully it will be Mon.

Peace <><

1/2: Getting ready to transfer :)

Thank you everybody for your constant prayers and encouragement!

It looks like everything has been approved for the transfer. Hopkins is SOOOO fearful for Emily's airway that they are coordinating a team of THREE top Hopkins physicians to accompany Emily to WI. I have to wonder if it's a little overkill, but I am glad they are taking this so seriously and grateful for the physicians that are donating their time for Emily's sake. However, coordinating this effort will take some time, so it may be Monday before we are able to get in the air.

We are praying that the Lord will speed things up a bit so we can enjoy the services of the Children's Hospital in Madison.

Peace <><

1/2: Approved for Transport!

YEEHAW!! We've been approved for transport to WI. Strangely, Aetna hasn't approved for the hospital stay yet -- way to go Aetna. Anyway, I can only assume that they'd follow suit if they are approving the transport. Wouldn't put anything past Aetna though. :/

Hopefully we'll know "the rest of the story" by mid-afternoon.

1/1: A restful day

Hey Folks -- we took advantage of the Holiday and didn't do much today. I took a much needed nap and Diana headed home to spend some time with Annabelle and get some things done at the house.

It's funny that when you rest, you realize how tired you are.

So, we thought that maybe Emily was getting closer to extubation and we weren't sure how that was going to fit into transferring to Wisconsin. We are supposed to hear back from Aetna Wed afternoon, but my guess is we are going to have to call them over and over to get the final word on an approval or denial for a transfer. After the doctors "rounded" we began to feel less confident that Emily is close to extubation, but I have to say that I am not totally sure that they are focused on the right ween settings for Emily. As she nears extubation time the pressures through the tube that are used to give her breaths, the rate of the breaths, and the amount of supplemental oxygen all need to gradually be lowered, as well as her sedation medication -- but there is some difference of opinion as to how those setting need to be lowered and what settings are more important when it comes to SMA kids. Dr. Bach is the forerunner when it comes to noninvasive ventilatory support (NIV) and proper extubation with SMA kids and believes in a very specific weening process.

Anyway, the doctors here foresee at least a few mores days being intubated and we will find out about the transfer tomorrow. Until then everything is kinda up in the air.

Thanks for your continued prayers and encouraging comments and emails.

Peace <><