Trach?

Evelyn slept the rest of the day after being intubated on Sunday, February 17th. I'm not so sure if it was because she was sedated or incredibly exhausted from all of her labored breathing, but I think it may be a bit of both.

Monday Evelyn was looking good. With her having surgery on Tuesday to have her shunt internalized, they were going to just keep her intubated until after the surgery. I was glad that they weren't going to extubate her just to intubate her the next day, but she was doing an awesome job breathing. She was pretty much breathing over the vent, meaning that the vent wasn't having to deliver oxygen to her but that she was able to breath her own air in.

Tuesday Evee had surgery. As always, it sucked to wait for her to go through surgery, and she came out looking awful, but I was glad to have her shunt internalized. A lot of bad things could have happened with it out, that thankfully never did.

Wednesday Evee was doing awesome. The respiratory therapist got Evee a different face attachment because she kept on drenching the usual tape with her drool. This turned out being such a blessing for Evee. She loved it. The new “face clamp” allowed her a little more freedom with her face. She was blowing raspberries, nodding her head up and down, and sucking on the breathing tube like it was a sucker.

Evee's energy was also very high. She was moving her body around like I had never seen. She pulled her legs up to her hands. She wiggled her feet around. And even though she had to have her wrists tied down so that she wouldn't pull out the breathing tube (that would be very bad), she was twirling her hands around and round, playing with her fingers, grabbing at her stuffed animals near by.

During Rounds, everyone would look in and see Evee moving her hands and legs around. They questioned if they should turn her sedation up (for if you're intubated you are usually heavily sedated), but since she seemed happy and wasn't able to mess with her breathing tube, they figured she was fine.

The attending, Dr. Karen, who use to be an Occupational Therapist, commented that Evelyn probably was experiencing a lot more energy since she didn't have to use so much of it to breathe. I would believe it for Evee was moving more than I have ever seen her move.

Thursday morning was the planned morning for extubation. Since we had to wait for Rounds to be over, and for ENT and Anesthesiology to come be present, it was early afternoon when they finally got around to doing it.

Usually they have the parents step out for this, but since I was on the couch talking to my friend Melissa and they knew that Todd was a doctor, no one asked us to leave. I had never watched an extubation and Todd had previously told me that I wouldn't want to watch it, so I distracted myself by keeping in deep conversation with Melissa. Okay, really it wasn't that deep, it was actually very shallow, but we kept things going so that I didn't have to watch what was going on.

As we talked, the doctors pulled the breathing tube. I did notice that Evee's stats were dropping and different people were coming in and out with different tanks and breathing masks. After about 15-20 minutes I was impressed that the Attending remained by Evelyn's bed. I knew the breathing tube was out, so I thought that the Attending was just being extra attentive and kind. Obviously I had never been to one of these!

After awhile Todd came over to me and told me that I should go out to the waiting room. ENT was going to scope her then Evelyn would be re-intubated.

WHAT?!

She had been intubated. They just extubated her. They had the tube out, why would they have to put it back in?

Slightly confused, Melissa and I walked to the waiting room. I was glad Melissa was there for I would have felt very lonely and even more confused.

Finally the attending, Dr. M, came out. She told me that they got her intubated and ENT looked down her windpipe, and they would be out later to talk to me.

Though I didn't expect it, and I don't know why I even came up with it, I asked Dr. M if Evelyn was needing a trach. She very kindly and sensitively nodded her head.

I laughed, not a funny laugh, but more of a “You have GOT to be kidding me” laugh. I told Dr. M about how when I met Bobbi's mom she had said stuff such as “I use to really fight against Bobbi getting a g-tube, but now I love it”, and “I use to be afraid of Bobbi getting a trach, but it turned out not being such a big deal”. At the time I was amazed at this woman's calmness, and now her reality was becoming my reality.

Soon Todd came out. He looked at me and asked if I had heard. I said yes. Melissa asked the doctor if we could give Evelyn another try, or if this was the only attempt she got. Todd then explained that ENT scoped down and looked right before they re-intubated her and they saw that the walls of her throat were sucking into eachother, not allowing any room for air to come through. Then, when they intubated her, they had to go down a tube size because of the swelling. She was already on a tiny tube, she would not be able to “try” again for she couldn't go down any further.

I was stunned. I had felt like Melissa did, couldn't they give Evee another chance? I felt that the doctors were jumping the gun, that Evee didn't necessarily need a trach. Obviously I am always trying to under-dramatize the situation.

Todd later told me that Evee didn't just fail the extubation, she failed miserably. He said that usually a patient will start having problems an hour or two later, but Evee went down immediately. Being an Emergency Physician and being use to step into that role, Todd had started "calling out" orders. He said that his orders were obeyed. Not sure if this is because they knew that Todd is an ER doc and use to running codes, or because they wanted to give Evee every chance of being able to breathe on her own.

I couldn't believe that Evee needed a trach. I felt guilt. I felt guilty that I hadn't been by Evee's side, encouraging her to breath on her own, for maybe, just maybe if I had, then she would have been able to do it. As mothers we always feel guilty. We are supposed to protect our children, encourage them, teach them. When something happens that is out of our control, we feel guilty, that we have failed them somehow. It doesn't make sense. But when you are a mother, you understand my feelings.

Evee's ENT doctor, the one that does 96% of the pediatric trachs in Cleveland, was out of town until Monday. The surgery would not be able to happen until Tuesday. I felt good about that. That did give Evee extra time to prove herself if needed.

Someone had told us that Evee would be in the hospital for a week after the trach surgery. But before she could get out we had to fulfill some requirements.

First, the parents, plus at least one other adult, had to be trained on how to take care of a trach, suction it, change it, and perform CPR on a trach child. Second, the paperwork had to go through to get the child onto Medicaid. That is the only way that the child can get in-home night nurses to come stay with her at night while she sleeps. The hospital cannot discharge an infant with a trach unless that is in place.

Todd and I went to the Hospital's Learning Center to have an “Intro to Trach” class. After that we have 3 classes, each 2 hours long, in which we are trained on the trach know-hows. As we were talking to the nurse about the scheduling of the classes, Todd and I were trying to get the classes done within the next week. The nurse suggested that we have them a week apart. A week? No, we wanted to get Evelyn home ASAP.
Then we were informed of reality. Most kids are in the hospital for 6 weeks, possibly 4 if everything goes smoothly.
Wow! Todd and I did NOT appreciate that information. I guess the biggest hold up (for us) would be the Medicaid going through. We also each needed to practice a certain number of trach changes (changing out the trach in Evelyn for a new one) by ourselves. She was sure that we would be able to do that well, so our holdup was just paperwork.
Not cool.
Upon finding out just what having an infant with a trach entails, I was even more uncertain that we should get the trach in Evee. The responsibility is overwhelming. She can't even sleep without someone watching her in case she was to somehow get the trach off or if it got plugged for she cannot make any vocal sounds. I will have to have two extra trachs with me at ALL times, a suction vacuum, and several other things. All this for someone who hates to take a wallet with me for I don't like carrying things around with me!
Monday, February 25th, the night before Evelyn was to get her trach, Todd was working the night shift. I was alone and had been trying to get to sleep. I was almost asleep when I heard some commotion in the room.
I discovered the respiratory therapist and the nurse standing over Evee. The nurse had just called for the doctor to come.
Evelyn's breathing was incredibly labored. Her stats were dropping. Evee's breathing tube was not working.
 It was hard seeing my baby suffer for air while we waited for help to arrive. I went to her side, whenever the doctor wasn't there, and encouraged her to keep breathing. To push herself a little harder. 
The doctor, who was a Fellow, had the nurse, David, call down to x-ray so that we could see if the tube got out of place. The respiratory therapist (RT) was using a "bag" that attaches to the breathing tube to "bag" in air to Evee, but the air was just coming right out her mouth. The RT wanted to pull the tube out so that she could "bag" Evee with a regular bag. Fortunately the Fellow was really smart and was there for Evee's extubation. He told her no, then when she kept insisting he finally said, "You were not there for the extubation, her throat is closing in on itself. That tube may be the only thing allowing any breath going in."
The Fellow also had Anesthesiology called to come re-intubate her since she is difficult to intubate, which I appreciated. 
David was not able to get a hold of x-ray, only got their answering machine. But as they looked down the hallway, an x-ray technician was pushing an x-ray machine down the hallway to do a routine x-ray on another patient. How fortunate we were!
While the x-ray was being taken, the RT continued to "bag" Evee and David helped. Around this time, the Anesthesiology team came. The Fellow was updating them on Evelyn's status and history. They were going to go in right after the x-ray was done. This was all very nerve-racking and scary. I was glad that we were able to get people that would be the best at re-intubating Evee, but I was nervous that it wouldn't be soon enough.
Once the x-ray was taken, David yelled for the Fellow to come into the room. Evee was breathing. The tube was working again. The Fellow listened with his stethoscope and was amazed. The Fellow had to get the x-ray image to make sure, but sure enough, the placement was perfect. He then excused Anesthesiology to leave.
The Fellow, David, and the RT all stood around Evee's bed while I sat back, looking on. They were all baffled. They had no idea what had just happened. The Fellow, somewhat joking, said that he just a lot of credibility with Anesthesiology. They had no clue of what had actually happened. Did the tube get dislodged and get put back into place? Did it get filled with mucus? I told them that it was because Evee is AMaZiNG.
I sat back, not knowing what had gone wrong, but knew what had gone right. God had helped my baby. I had felt despair. Things didn't seem to be working out for us....but they did. The timing with x-ray, the timing with Anesthesia, the timing of the RT and David to be in Evee's room at the same time, all worked out for the best for Evee.
I don't know if I was given this experience so that I could feel more peace about Evee get her trach (if so, it did work), but I do know that God was watching over us. It was very scary, my stomach dropped and my world was crashing, but then, moments later there was incredible joy and peace. It was good news, in the end, but having those extreme emotions can be very difficult and challenging. I was just grateful that she was going to get a trach the next day so that she would be safer.