I mentioned yesterday that last night was an important test for Ava, given that this was her first night without the ventilator. That she remains off of the ventilator is certainly a good sign, but last night was not wholly uneventful. Manny sleeps in her room with her in a heavily vinyled hospital chair that converts into a single person bed. It is positioned directly to her right with only enough room between vinyl bed and her hospital bed to put his feet down and stand up to help her.
While she is no longer on the ventilator, she is still recovering from the pneumonia and the pulmonary contusion (big lung bruise), not to mention several broken ribs. These things have caused her to have some thick lung secretions. While she was on the ventilator she required frequent suctioning. Frankly it was a little easier then. The endotracheal tube goes directly to her lungs. The tubing connected to the ET (endotracheal) tube has a long, thin tube attached to the end of it. In a way it is like a retractable antenna. Most of the time it is fully withdrawn from the ET tube. When Ava needs suctioning then they just attach the suction to it and push it forward and into the endotracheal tube, and hence, into the lungs, where the secretions are. It will clear some of the secretions out and allow her to breathe a little easier for a while.
Eventhough the ET tube has been removed, the pulmonary problems have not completely resolved and consequently she still needs frequent suctioning. This is compounded by the fact that Ava does not have cough mechanism to clear the secretions (I don’t fully understand why). If you or I had some gunk in our lung we would give a good cough and hack it up. Ava is unable to do this currently.
Through the night last night, Manny described hearing her breathe with a deep, coarse, raspy sound that he could hear from any location in the room. Her oxygen saturation should be in the high 90% range, essentially all of the time, but last night was dropping into the low 80% range fairly frequently, and that was with oxygen supplementation with a nasal canula (small tube that blow oxygen into your nostrils). Not that it is extremely harmful to drop in the low 90s or 80s for a short period of time (minutes), but it isn’t “normal.” And she needs to be “normal” before she will be released from the hospital. The concern for Manny last night was that if she continued to drop her oxygen saturations, then she would need to be put back on the ventilator, which would require reintubation. Remember… “the only thing worse than being intubated once is being intubated twice.” This was Manny’s concern. Fortunately it wasn’t required.
Without the endotracheal tube in place, you take a long segment of suction tubing (which for her is about the diameter of a stir straw) and push it through one nostril and into the back of the nasal cavity. You keep pushing until you have put enough in to reach into the lungs. You don’t really know if you are in the lungs until you apply suction and see what you get. Of course when you apply suction it is like trying to breathe with a vacuum over your mouth, because the suction is pulling all of the air out, too. This process is repeated over and over until you feel that you have satisfactorily removed enough gunk to allow them to breathe better.
The suction canister for the secretions is mounted to a wall suction device. The canister is clear with markings on the side to allow for measurement and generally holds about one liter. Manny described to me that her early morning secretions were very thick and looked like old blood (brownish). Her later secretions were thinner but still… (Manny searched for the word to describe it, glancing around the room a little bit as if he was going to find the word that he was looking for written on the wall) “…here,” as he pointed to the suction canister mounted to the wall. My reply…”dude, that is gross. It looks like dip spit.” It even had the little frothy layer on the top and the chunky stuff on the bottom. Manny was a little concerned that the women reading this wouldn’t know what that looked like, but I said, “Manny, most of these women are from Texas. They know what dip spit looks like.” Needless to say, if they were suctioning that out of her lungs, no wonder she wasn’t oxygenating well.
Most of her day was actually quite peaceful. She was oxygenating well with intermittent suctioning and only small oxygen requirement by the nasal canula. He described to me how peaceful she was when Traci was lying in the hospital bed with her today. She seemed to settle herself much better when Traci was lying beside her. I am sure there was the familiarity of Traci’s scent, the melody of her voice, the warmth of her body. So interesting how soothing these things must be to her. I was told that the only time during the afternoon that Ava seemed to have more difficulty was when Traci got out of the bed to leave.
At the hospital this evening, the thing that struck me was how natural and routine “this life” is becoming to them. Their anxiety about the survival of their daughter has been replaced with the routine of her care. Positioning her, suctioning her, stretching her arms/legs, changing her diapers, tube feeds, etc. This is becoming their new life. Manny talked with the nurse (calling her by her first name) about suctioning and the raspiness of her breathing like it was just the routine of the day. They were colleagues caring for Ava. It struck me that this is their new life and could possibly be this way for some time to come, and while I am hopeful and expecting that she will continue along her recovery, it is at least possible that she could grow into an adult child, still requiring the same level of care.
I mentioned the ease at which he addresses these issues and cares for Ava now. He replied that this is Ava now and it feels natural, almost like this is how it has always been. “I almost don’t even recognize that Ava anymore,” pointing to a photograph taped to the wall of an active and lively 18 month-old girl with brown hair and big eyes.
We spoke of the lifetime that has been lived in the past nine days. If ten days ago, you would have told them what “their new life” was going to be on 02May09, the reply would have been a laugh… “No way! You’re crazy.” I spoke at a cancer event this evening (Relay for Life) and related that “right now, somewhere in America there is a person driving down the road and thinking about their distant future life… Where they will be, what they will have, what they will be doing, et cetera… and 10 seconds from now a driver is going to vere into their lane, and in a fraction of a second their life is totally different than the 20 or 30 years that they were mentally planning out just seconds before.” I have recounted such an example to other people, for other circumstances… I just never truly thought that one of my dear friends would be the example.
Now don’t fire me just yet. I am very optimistic regarding Ava’s recovery, and I fully expect to watch her grow up like every other kid in the neighborhood, but for a while their life will be different than what it was just 10 days ago.
“Their life will be different.”
“Their life” will be different.
“Their life.” As Jennifer and I were driving Traci back to her house tonight we spoke of “their life.” Jack and Isa. Manny and Traci both mentioned how they are seeing definite signs that Jack, in particular, is having some difficulties with this transition to a “new life.” He is too young to be able to even think about the verbal construct required to explain his emotions. I am sure that without his conscious awareness of it, his thoughts must be “what happened to my sister? What happened to my parents? What happened to my life?”
We candidly discussed that no degree of community involvement can replace the normalcy of having his family unit intact. I am sorry for you, Jack and Isa. You hurt too, and you probably don’t even know that that is what it is… hurt.
I know that things will either restore themselves to the way they were, or they too will acclimate to their “new life,” but it doesn’t make it fair… It doesn’t make it right.
Please keep them in your prayers.