12/30: More thoughts about a tracheotomy

I wrote an email to a Dr. today and I wanted to share some of the contents about our thoughts on a Tracheotomy procedure for Emily.


Early in the AM on 12/26 Emily was reintubated. She had been doing incredibly well on biPAP, but seemed to be experiencing some swelling in her lungs and her secretions were getting very thick and gummy. Her "end titles" were getting worse, so her blood was becoming acidic. So, she was reintubated and we think it was the right thing to do. They called in the attending Anesthesiologist and the head of ENT b/c of her difficult airway and the Anesthesiologist was able to place her tube. After the procedure, which was not bad b/c it wasn't as emergent as when we were admitted, the attending expressed his concern over Emily's airway and discussions about a tracheotomy. Later in the day on Thur, 12/26, the PICU attending and the Chief of Pediatric Pulmonology spoke with us at length about the concern and were encouraging a trach for three main reasons:
  • Emily's chords were swollen and her airway was inflamed
  • Emily's glottis was 50% occluded with thick mucus and she "had no cough response to it whatsoever"
  • B/c of Emily's swollen airway and the angle of her airway she is very difficult to intubate so they are worried about her getting sick and having a true emergency
I have been thinking A LOT about this b/c it is obviously concerning. However, these are my thoughts and reactions to the news.
  • I spent quite a bit of time talking with a couple very trusted physicians, Dr. Swoboda and Dr. Schroth, about the situation. They provided great food for thought for us as we considered the possibilities of an actual airway intervention by means of a trach.

  • Of course Emily's airway is traumatized and swollen. She has RSV and has been intubated and received frequent deep suctioning - swelling is to be expected. That doesn't mean that I don't think it is an issue, but I do think she needs time to recover and let RSV run its course while intubated.

  • Her lack of response to the plug in her airway of course is concerning. However, looking at Emily's condition holistically and the progression of SMA -- Emily's cough is good and it, along with the NIV protocol, kept her out of the hospital for over a year. It seems out of place for SMA to have caused a sudden inability to cough when she has been coughing fine all along. I do think that she could progress to that point as she gets older, but not in a week's time. So, extenuating circumstances brought her to the point of not responding to something in her airway - RSV, exhaustion, sedation for the intubation procedure - not quickly progressive weakness due to SMA. The Dr. that placed Emily's intubation tube also administered Lidocaine down Emily's airway before the intubation, so I have to wonder if that is what he saw. Either way, my feelings about sudden weakness still stand. Sudden weakness is not characteristic of SMA from what I can understand.

  • Difficult intubation is common in SMA, maybe even inevitable. So, specialist will need to be called for nearly every SMA child, but that doesn't mean that a trach is proper for daily management. A history of increased inability to react to secretions in the glottis, thus causing frequent desating and sickness, would warrant a trach (possibly), but this is not the case with Emily b/c she is generally very healthy and able to cough... with our help. A trach seems to be the easy answer, but not the best one for Emily. She is still too strong.
So, we have decide not to trach Emily and we have requested a transfer to Wisconsin to see Dr. Schroth so Emily's airway can be seen by someone who sees SMA airways on a regular basis. Emily's anatomy COULD warrant a trach, but my hunch is that she is typical, but I can't make a decision for OR against a trach unless I know from an SMA expert that Emily's airway is a disaster or not. First and foremost, we feel that Emily will have the best chance for a successful extubation and recovery at the University of Wisconsin Children's Hospital since they are intimately familiar with SMA needs, SMA airways, and the NIV protocol. I want to know, for sure, that Emily's airway is as I suspect, typical for an SMA child.


Hopefully this documentation will help other families brought into the same discussion by medical professionals.

Peace <><


Anonymous said…
Our prayers are with you every day. We are here for whatever it is that you need. Whatever it is.

In Christ,
Ray, Brooke, Bryce, Vince, & Blake
Sky said…
Best wishes in your transfer and getting a SMA doc to look at her I will keep you all close in our prayres as always!
Mike Milligan said…
Very well written, Nate.
Anonymous said…
I am so glad that you got through to Aetna and that you are able to talk with them about the transfer. We continue to pray that God will provide all that is necessary for Emily's care, and that she will quickly recover from the RSV.
Eileen said…
Nathan and Diana,
You are doing such an amazing job advocating for Emily. I admire your persistence and fight for what you feel is best for her! I would tend to go with the thoughts of the doctors, but you have educated yourselves so well and I am so happy that you do not rely on whatever they say and that you do what you know is right for your child. That is how she got to be 2 1/2 without all of there help! Hang in there! I know this is so tough, but you are both amazing and I know you can make it through this too! Love and prayers,
Eileen and Bob