JCMC: Day 4

Here we are, day 4 at the Johnson City Medical Center PICU.  Wednesday, in particular, went so well that we thought maybe we were homebound, but that may not be the case.  Half way through the day Emily's heart rate started going up and she was needing more O2, so now were up to 3L of O2 and back to respiratory treatments every 2 hours.  Each one lasts about 30mins or more, to give you an idea of our schedule.  The respiratory therapists have only been able to get in every 4 hours, but often are not able to stay long enough to finish the treatment.  So, even though this hospital is compliant with our plan of care and very kind, the Respiratory Therapists are:
  • not familiar with our equipment (cough assist) and our drive for noninvassive ventilatory support (NIV protocol)
  • not familiar with weak neuromuscular needs (they are different from other needs - VERY different)  
  • severly understaffed from what we have seen this week.  They have had too many patients to care for to get adequately involved in Emily's care, or any other individuals care for that matter 
Anyway - Most of the respiratory therapists have been friendly, and that is nice.  A couple have taken particular interest in Emily and our level of care for her and they have been as helpful as they can be.  Today I had a frustrating conversation with one, however, when the appropriateness of our care of Emily was challenged.  Thankfully the words in my head didn't match those that came out of my mouth, but it was very frustrating to have to explain airway maintenence and clearance to a respiratory therapist.  I provided a copy of the Standards of Care for SMA document and pointed out the Pulmonary section.  Hopefully they will all read it and learn something valuable for future SMA families that might end up here. 

OK - it wasn't all that bad today.  My text above sounds kinda depressing.  We're fatigued and ... gotta get some sleep now.

Peace <>< 

Comments

ryanandkate said…
Hey Guys,
We are praying for you all! Keep up the good work and we know Emily will pull through just fine. I know you must be exhausted, those Q2 treatments can really wear on you, especially when you are doing them without much help from the RT's. We home she clears up soon and you are on your way home!

Ryan, Kate, Mary and Jackson
Although this is frustrating, think of it in the context of you are educating yet another hospital on how to deal with SMA the NIV way. You are paving the way. You may be bearing the cross but you will be making it easier for the next one who may not be as educated at your family is. God works in mysterious ways!!! :)
Dawn and D.J. said…
How frustrating, Nathan! I just wanted to let you know my thoughts are with you, and I hope everything turns itself around. Take care and pass along my hello and concern to the rest of your family! Love, Dawn
Oh I can believe it was that bad. You are dealing with what we always have to deal with. Every time we go to the hospital its a balancing act making sure you build the egos of the medical staff while at the same time trying to deliver the correct care for an SMA patient. PICU's are designed and follow protocols to bring everyone back to base line normal. Unfortunately it doesn't take into account that certain segments of the population have different baseline normals. I understand you can't know everything and that there are liabilities involved but it doesn't make it less stressful for those with SMA children or their caregivers. I feel for you and others. Maybe one day the NIV Protocol will be as accepted as those protocols now in place for Spinabifida and cystic fybrosis patients. It's hard to believe that there are only really 3 hospitals that employ the protocol openly while all others follow conventional wisdom and are stumped when our kids aren't trached. Some doctors are scientists or at least employ the scientific mode of thinking others follow conventional wisdom. It's frustrating to say the least, the ego balancing act!
Monica English said…
Hang in there! We're there with you. We were certain we were going to take Tabs home today, but she's had increased need for 02 and therapies as well. Prayers for Emily and you.
Nate said…
Thanks for checking in and for your prayers and support everyone. We really appreciate them!!
Sky said…
Sending you guys lots and lots of prayers, your ll doing the best you can do, and sounds like you are an awesome fighter Nate, Emily is so lucky to have such wonderful parents!!! Just think though of what your teaching these people, could open eyes and doors!!! Hugs Sheila and Sky