Annika's first word was "more." And her second. And also her third.
So, yes, she is extubated! All that breathing is now being done on her very own. Well, of course, there's a lot of oxygen being blown into her nose, but, you know, there are people paying for the privilege of nasal cannulas at oxygen bars around the world, so I can't freak out about that too much. In an amazing show of lung resilience, Annika went from needing very high ventilator support on Saturday before the chest tube was placed to requiring only pressure support all through the night Tuesday. So Wednesday at noon they removed the breathing tube.
The first several hours off the ventilator were were unbelievably wonderful. She was still sleepy from the sedation, but when she awoke, she was calm and responsive. Since she had been on the ventilator for so long, the doctors didn't want her to drink anything until the next day, just to be safe. But of course, her mouth was dry and throat sore from the tube (and you can't swallow your saliva with a breathing tube in). So I offered her a pink mouth sponge dipped in water to clean her mouth. Of course, she took it in her mouth and sucked on it eagerly, moving her tongue all around the ridges of the sponge's star shape. The sponges are attached to a little cardboard lollipop stick, and I pulled it back out after a few minutes. She looked at me with her bleary, drug-shrunken pupils and said, "More."
I tell you, it was more of a moment than her actual, very first word. Annika was a late talker, not really taking steps toward verbalization until well after her second birthday. The speech therapist working with Annika suspected that part of her problem was lack of abdominal strength (try talking out loud and put your hand on your abdomen while you do it -- see how you have to tense those muscles to control the air flow that powers your voice?), so she taught her some hand signs to speed up the process of communication. The first sign that she really took to using was the sign for "more." So she's consistent, at least.
But her first spoken word as a child? I couldn't actually tell you. You know how it is -- they start making these little vocal noises, and you, the eager parent, listen with ears ready to assign meaning. But it's always kind of hard to identify the moment that a word is actually used in all its word-like glory. So you end up saying that "daddy" was her first word, despite the fact that the sound she was making, "da," was used to refer to mommy, daddy, the cat, ducks, cars, birds, bathtub, and once perhaps even a hairball from the cat excitedly discovered on the floor one morning. (And, just to be clear, "excitedly" here refers to Annika, not me. My own opinion of hairballs is somewhat less touched by wonder.)
Yesterday's "more," though, was unambiguous in its intent and execution. Coming out in a creaky whisper, she was perhaps shocked when I jumped up and said, "Oh, that's wonderful, Anni! I can hear you!" Unfortunately, she couldn't see the huge smile on my face under the mask we now have to wear around her.
Oh, that's the other thing. We now have to wear masks and gowns at all times in Annika's room. The nurses wear gloves, too, but we go bare-handed so she can at least feel the skin of our hands stroking her head. Then we're just careful to wash our hands when leaving the room. She's tested positive for a bacteria called B. cepacia
from her breathing tube. It sounds horrible to have bacteria down in your lungs, but of all the bacteria that could have turned up, this is one of the more friendly ones. At least friendly for her. For children with cystic fibrosis, this is an incredibly deadly bacteria, so she's in contact isolation to prevent spreading the infection to any of the CF kids. This bacteria could also cause problems for her if it turns up in her blood or in her urine, but so far it's only shown up in cultures from the (now gone and good riddance) breathing tube.
Naturally her extubation has been a source of incredible joy and celebration for us. But it's never all good news in the PICU. It just doesn't seem to work that way. Two days ago Annika had a very bad day. Her sedation started wearing off a bit too much as they were in the process of waking her up, anticipating getting her breathing tube out. In her goal-oriented wakefulness, she took her tongue and pushed at the breathing tube until the tape was loosened and it was dangling a bit precariously out of her mouth. While waiting for the x-ray tech to show up and check if she had moved the tube out of proper placement, her nurse stood by her bed and held the tube in place. Meanwhile, Anni was waking up more and more and becoming more and more panicked. Then everything went a bit chaotic. She spiked a fever, threw up, put out a huge amount of old, dark blood into her diaper, and began crying in either pain or fear. After an emotional hour, she finally received enough sedation to put her back to sleep and we all recovered ourselves.
Despite the extra sedation, she still proved herself strong enough over night to have the breathing tube removed the next day. But since she no longer was on the ventilator to make sure she kept breathing, the doctors decided to switch out her drugs to begin the weaning process in order to avoid being so sedated that her body forgets to keep breathing. Just a few hours after the switch, she woke up in a distressing state of terror and agitation. The first thing she tried to do was pull out her arterial line
. With her teeth.
After the failed attempt at gnawing her right hand free, she decided to go for her Foley catheter
instead. She had removed the tape tethering it to her thigh before I caught her hand in mine. By the time we had gotten the catheter retaped to her other leg, she had shifted her energies to removing her NG tube
. Insufficiently taped, she finally hit upon success. A short-lived success, as it of course needed to be replaced in the morning, but I'm sure it was a rush nonetheless.
Giving her the affectionate nickname, "Houdini of the PICU," we put immobilizers on both hands (not on the elbows, since I still wanted her to be able to move the arms after being motionless for so long), which we soon learned to cover with terry cloth slippers after she wiggled her hands out with apparently very little effort.
As the night progressed, though, her situation only got worse. She was unable to relax for more than a few minutes before her body began trembling and she would awake with a jolt, seeming frightened and confused. We thought maybe she was in withdrawal, so we gave her more of the drugs that are supposed to help with withdrawal symptoms, but they only seemed to make things worse.
She fought all night, and I stayed beside her all night long, holding her arms and not sleeping for fear she would hurt herself. Her nurse spent the night paging doctors, trying to figure out what we could do to help her.
Throughout all this, she began spiking fevers again on a regular basis. And then her chest tube, scheduled to be pulled the next day, suddenly began dumping out all sorts of fluid again, 150 cc's in a 5-minute span.
So Thursday morning the doctors decided to biopsy her liver, to rule out rejection or any other liver problems as the source of the fevers. They also decided to do a CT scan to check again for signs of infection in her abdomen, although the surgeon has told us that if she does have any more pockets of infection there they are pretty much powerless to do anything about them. So we'll hope nothing shows up there. Although the prevailing wisdom is that her strange behavior throughout the night was due to drug withdrawal, they called in neurology to evaluate her, just in case. So she's also going to get an MRI of her brain, to make sure that the fevers aren't a sign of a bacterial or fungal infection attacking her brain, which might also account for her behavior.
For the biopsy and dressing change of her still open abdomen, they tried out a drug from a different class of sedation drugs, and it has worked wonderfully to calm her. So at least we are able to catch our breath, watching her rest, and process the constant flow of information.
Because of Anni's new status as cepacia-positive, we had to move to the "cepacia area" of the PICU. Children's is very aggressive, commendably so, in trying to limit the spread of infection between patients, always a battle in hospitals where so many bugs come to live. But this means that we have lost our PICU neighbors, Brad and Angela and their son. We miss their company, and worry about Matthew. Annika and Matthew both were identified as infectious (but with different bugs) on the same day, following in their pattern of lock-stepping together. And while Annika's successful extubation is a huge step forward, Matthew had to be reintubated after a terrifying midnight near-miss episode that left Brad and Angela still shaking the next day when we finally met up.
I want so much to somehow be able to hitch Matthew's wagon to Annika's, to have him join her on the path that is generally more improvement than decline. I know that the course of a long-term PICU stay is almost always a series of ups and downs, and his upturn could be just around the corner, but he's been hit with so much more than his share. Here is Matthew's website
again, if you'd like to join me in my daily practice of sending him as much healing energy and encouragement as possible.
This was written yesterday, but again I had no chance to connect to the internet to post it until this morning. Last night was again a restless night, but it is looking more and more like her difficulties are due to a bad case of withdrawal. Unfortunately, her body is in such a state that the drugs they usually give to help with the withdrawal symptoms (methadone and atavan) are actually making her feel worse, called a paradoxical reaction. So it's going to be a tough week as her body adjusts.
The new drug she's on has allowed her more moments of lucidity, though. Mainly her mood is very sad right now, when she wakes up and realizes where she is and feels all the tubes attached to her. Last night she woke up and looked around until she spotted me. "Mama, I am not well," she said, in a statement sounding one part objective assessment, one part accusation, and one part plea for comfort. I climbed into bed with her, which is so much easier now that she is off the vent, and stroked her hair until she went back to sleep.
We have a picture of her up on the door of her room, which everyone can see as they enter. It's this one:
Underneath the photo I added in the message, "Thank you for taking care of Annika." Everyone is anxiously awaiting the return of that little girl with the sweet smile, as well as her counterpart, little mischief maker: