She's OK

Last night Steve had been home from the hospital for about 20 minutes when the phone rang. He answered and I watched his face trying to determine just how bad the news was. Natalie had an "episode" that required hand bagging and chest compressions to come back from. This has never happened before-she frequently desats but her heart has always been reliable.

Honestly, I felt paralyzed. I wanted to curl up in a ball and scream. I asked myself what I would want if I were Natalie and the answer of course was "I would want my mommy." So I uncurled myself, tucked Annie into bed and ran to the hospital.

I had only met her nurse once before but she is very confident and exudes cheerfulness. As soon as I walked in she said "Honey I am so sorry. Sit down and let me tell you everything that happened. I was there start to finish so I saw it all."

Jennifer was scrubbing in at the start of her shift. She looked up at Natalie's monitor and her oxygen saturation was 70%. She went to her bedside to investigate and heard a cough like sound. She had just been told that Natty has a significant air leak (her tube is much smaller than her trachea) so she thought the sound was the leak. To be safe, she turned Nat towards her and did not like her color. She also had a lot of oral secretions. Suctioning did not help.

The doctors were right outside her door waiting to start evening rounds and the respiratory therapists were around the corner. It was a very fast response. They attempted hand bagging through her tube and using the vent itself to deliver extra air. She was not responding. They extubated and hand bagged with a face mask. She started to improve but not quickly enough. The fellow did about 30 seconds of chest compressions and from that point on Natalie has been stable. From Jennifer finding her to Natalie being stabilized it was at most 90 seconds (90 seconds that took about 2 years off my life).

When I arrived at the hospital her room was in shambles but Natalie herself was sleeping soundly. She made little faces at me and was very cute. Seeing her helped me finally calm down. Apparently our little wonder girl was wide awake through the entire episode and looking around at the people working on her. I imagine that was a little disconcerting to the medical team but it amuses me that Natalie has no idea the turmoil her little body creates. She was watching and trying to figure out what all the fuss was about. She tolerated the reintubation easily and the fellow assures us her vocal cords are beautiful (a miracle in itself after months of intubation).

It seems that the whole incident was a mechanical issue. Most likely Natters extubated herself by coughing. With all the secretions in her mouth and the tube being out of position she did not have much of an airway if there was one at all. Bagging through the tube did not help because the ETT was too far out of position at that point.

Her O2 needs were up last night but the chest film shows very wet lungs. If she has not had Lasix by the time I call this morning I may have a breakdown. This transition to oral diuretics is not going smoothly.

It is a blessing that Natalie's chest film does not show any breaks in her ribs. When we were told about her bones thinning they mentioned that thin bones could become an issue if she needed to be resuscitated. I did not shrug the concern off but at that time I could not imagine Natalie needing chest compressions. There is still a chance that breaks could appear as they heal but so far at least we have escaped that.

Eventually I had to come home as Annie does not have a snooze button and I am teetering along with some incredible sleep deprivation. By the time I left I did feel much better......the episode was not heart related and we were not watching another organ system begin to struggle. On the other hand, I am now terrified of her self extubating again. The nurses can not be in the same room every minute. They have to get her milk, her meds and attend to other tasks that take them away from her room.
I am SO ready for her to have a trach and leave this intubation business behind.

Driving home was a much different feeling than driving to the hospital. I am starting to feel like a perpetual Humpty Dumpty...constantly being broken and then put back together again.

Yesterday I started to write an update on where we were going from here. I talked about how nervous I was preparing for the future and looking too far ahead. An hour later I am told Natalie needed CPR.

With that in mind, I will try to focus on the immediate future.

Natalie needs two surgeries. The first one, obviouslyandpleaseletitbesoon, is the tracheostomy. The second surgery is a funduplication and placement of a G-tube.

Natalie has almost exclusively been fed through an ND tube (it runs from her nose down in to the first part of her intestines). When feedings were first established she was such a fast breather that they were worried the pressure on her stomach would cause her to reflux. Since that point we have never gone back to attempt another NG tube (nose to stomach). A baby CAN go home with an NG tube, but an ND tube is another story. Natalie will need tube feedings for some time and the G-tube will be easier on all involved, especially Natters.

The funduplication is a procedure where the upper part of the stomach is wrapped around the lower part of the esophagus and stitched into place. It prevents reflux and ultimately aspiration of stomach acid or stomach contents.

Usually a baby would go through a great deal of testing to prove that s/he has reflux and is aspirating. Aspiration for Natalie would be a disaster so the doctors do not want to take a chance. They are going to eliminate it as a potential threat.

She needs the GI surgeries eventually, but there is no rush as she is eating just fine with the ND tube. The tracheostomy does need to be done ASAP, but they prefer to do the GI surgery before the trach for multiple reasons. Months ago I asked if they could do everything at once but our hospital does not do that. Operating on a sterile site (trach) and a bacteria laden site (the gut) at the same time is not a great scenario.

Right now the plan is to go ahead with the GI surgery as soon as the surgeon has an opening in his schedule (about 2-3 weeks...sigh). He wants to schedule her on a day when he does not have another major case so he is as sharp as possible. I very much appreciate that.

This was an abrupt change in plans. Everything was in place to start steroids on Wednesday to move toward the trach. Now that will wait until she is healed from the GI surgery.

There was more to the meeting so I will finish up later.

Despite the scariness of last night, Natalie has had a stable week. People smile when they talk about her and the progress she's made. Just this week her PEEP has gone from 8 to 6. Incredible.