Seattle Children’s Hospital…Here We Come

Posted by Suzanne - September 12th, 2013

posted by Suzanne

Many already know that tomorrow is a big day for Erin.  Tomorrow she checks into Seattle Children’s Hospital for a tricky dental procedure.  FOP and dentistry do not mix well at all.  Extra precautions need to be in place so the jaw is not over stretched and no intramuscular injections are used.  For everyone else who has a normal range of motion in their jaw and can tolerate Novocaine, this would be a simple dentist visit.  Erin can open her mouth to about 2cm.  Over stretching the jaw could cause her jaw to lock up.  Our only choice was general anesthesia in the operating room.

General anesthesia also entails securing a clear airway.  To do that, the anesthesiologist has to manipulate the patient’s neck and shoulder to get the correct angle needed.  For Erin, her shoulders and neck are fused.  Suddenly things got a lot trickier and way more risky.  We have had the privileged to have an anesthesiologist assigned in advance.  I met with the wonderful anesthesiologist in person once and at the same time had a Skype session with Dr. Zvi Grunwald (FOP expert for anesthesiologist) in Philadelphia.  After our Skype session, the topic of a possible tracheotomy came to light.

We have been on pins and needles ever since.  The specialists involved all have prepped us for the “likelihood” of a tracheotomy.   Tonight, I am packing for a long term hospital stay but hoping, praying for a single night stay in the ICU.  We have not talked to Erin what it means to have a trach.  The Life Specialists at the hospital have a special way to explain what a trach is to children.  I am leaving that job to them since they know what they are doing.

Pre-op visit

Pre-op visit

Erin and the Life Specialist practice on McKenna

Erin and the Life Specialist practice on McKenna

There has been so much emphasis on a possible trach, I am not worried AT ALL about the dentistry portion.  I was promised that we will get a call once Erin is fully anesthetized and is stable.  At that time we will know if a trach was inserted.  If so, then I can sit back and prepare myself for a long hospital stay.  My last phone conversation with the anesthesiologist was Monday and my last words to her were, “Just keep my baby breathing.”

Stay tuned for updates.


3 Responses to “Seattle Children’s Hospital…Here We Come”

  1. Kelly Van Horn says:

    Our hearts go out to Erin and your family always but especially on Friday. May everything go smoothly!
    Signed, Kelly and Dave Van Horn (friends of Tammy’s)

  2. Robin Rice says:

    I Will have Erin in m thoughts and prayers.I have been through this, as have several others. I actually had oral surgery to have all of my teeth taken out… about 8 years ago at UCLA is where I had the oral surgery, I stayed just 2 nights in the hospital there. My jaw was also very fused, so this was an even more difficult surgery for all the doctors involved. They were ready for any emergency concerning my breathing, and took every precaution to make sure this would be a success, and it was!
    I hope this helps you some, to be a little more relaxed, and not overly worried. These procedures can be performed safely, as long as certain FOP protocols are followed, as you have already made sure are done.
    It sure sounds like everything will turn out just fine, and you will all be going home as planned…

    Let us all know how she’s doing when you get home tomorrow….


  3. Pat Johnson says:

    I will be praying for Erin, you and Allen and the healthcare professionals that will be taking care of her.

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