Monday, January 28, 2013

I am not feeling very insightful.  I am trying to work through my nerves.

Tomorrow we hope and expect to extubate.  Breathe, baby!

I am more nervous than I would like to admit.  I am drinking my tea and trying to stay calm.  The doctors will round soon, and I will hear their plan to extubate.  I know that they are stopping her food at 6 a.m., which means that they are still planning to extubate, but not in the morning.

"Peace I leave with you; my peace I give to you. Not as the world gives do I give it to you. Do not let your hearts be troubled or afraid."  John 14:27

I pray for that peace as I try to go to sleep tonight.  Peace that I cannot understand and the world cannot give.

I am praying for healing, for my sweet Sarah.  I know God will heal her.

I am praying for the doctors who are responsible for figuring out a good plan to get her breathing on her own.

The word trache is bumping around again.

A little about what has happened.

When Sarah was extubated about a week ago, she did not do very well.  They tube was out for over an hour as we hoped she would improve.  She didn't, and they re-intubated.  That is always a risk, and the doctors minimize the risk in a number of ways.  They make sure that the vent is on a low setting.  They make sure that you are "breathing over" the vent- you are taking more breaths than the vent is giving.  They make sure that there is an "air leak," which means that some air is getting around the tube.  The air leak is important because it shows them that your throat is not swollen and that they can remove the tube without damaging the tissue or causing irritation that will swell and require re-intubation.  They look for minimal secretions.  If there is fluid in the lungs or so much fluid in the mouth that they worry about fluid in the lungs than they have to weigh that as a factor.  Will it cause a plug so the lungs cannot work?  Will it be too much for you to manage without help?

Of these, all signs looked great the first time with Sarah.  Except that she had (always has) more secretions than they would like.  The ERT (extubation readiness test) was excellent.  So they were surprised when she did not do well, but they are always prepared for that.  The re-intubation procedure went smoothly.

What happened?  We discussed it at length.  She was crying the whole time the tube was out.  They gave her some morphine for pain- it was only a week after surgery!  But morphine does not really work well for her, so it could have been that she was in pain and just too agitated.  It could have been secretions.  She could still have been feeling pneumonia too acutely.  Her lungs simply were not strong enough yet and she was not ready.

So we did a few things over the next few days to prepare her for a second attempt.  We got a better pain plan in place.  We gave her more time to recover from the pneumonia.  They put her on a medication to reduce secretions.  (Robinul, for the curious.)  After a few days, she had fewer secretions, she was back to low vent settings and she needed less pain/sedation medication.  She seemed ready.

She did her ERT.  It went very, very well.  There was a hiccup that morning.  The nurses went to suction her tube.  (As I explain to Lily, when you cough, you can get stuff out.  When she coughs, it gets in her tube and she needs someone to suction it out.  Ick.)  They had a little trouble- it was thick and it got stuck.  It was not an emergency- they were able to deal with it pretty quickly, but they did reconsider extubating that day.  A mucus plug can cause a lot of trouble.  They decided she was ready.

It is always a balance of risks.  When someone is intubated there are a million things that are more difficult.  You have to keep kids sedated, so they don't pull the tubes out before they are ready.  And sedation comes with its own risks, some of which increase the longer you are on them.  The tube itself is high maintenance.  Sarah is a wiggler with a lot of oral secretions (drool- she is teething!) so they have to get three people in the room about once a day to re-tape her tube.  They have to suction every time she coughs, and she coughs pretty often between the pneumonia (better now!) and just having a tube in her throat to stimulate.  Your body does not recognize the tube as helpful, so it fights.  Getting extubated in a timely manner matters, and not just because you want to get out of the ICU.

The second extubation was not as smooth as the first, as I explained in my other post.  It feels odd to describe a failed extubation as having gone smoothly, but the first had.  When they took the tube out the second time, everything happened quickly.  There were no minutes of waiting, watching and hoping.  She needed help in a hurry.

So what happened this time?  Again, there were a lot of theories.  Maybe the mucus was too thick, and there  was a plug?  Maybe she was too sedated to work?  One thing was clear upon re-intubation.  There was an upper-airway obstruction.  They had to use a smaller tube to re-intubate.  Swelling?

So... tomorrow.  We are addressing everything.  We are walking a fine line with her secretions.  The Robinul thickened everything up too much, that was clear even if it was not the cause.  But she has too many secretions to ignore.  So, we cut the dose in half and are monitoring very closely.  We pulled back further on sedation, but again we are walking a fine line.  If she goes into withdrawal, that will not be helpful.  But she has to want to work to breathe.  Swelling is a major concern, so she started a steroid today.

We also want ENT to weigh in, and to be present for the extubation.  I missed them today (I was at MRI) so I will not get the full report on their recommendations until tomorrow morning.

The plan, as it stands now, is to extubate tomorrow morning, but this time with ENT present and in the OR.  A more controlled setting.  Ideally, they will just observe.  We are hoping for a crowd of bored bystanders.

We are not going to go into the various ifs.  Tomorrow Sarah will breathe.

Spirit, come, transform us. Come be our breath, be our hope!

My tea is cold.  I am going to get another cup.

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