Explaining A Ventilator and Tracheostomy To A Four Year Old.....

Last night, I had the most in-depth conversation about Little Bird with Number Five. It all began with an abrupt phone call. Early that afternoon, as I dressed and packed up the girls in preparation for a visit with their sister, MFH placed a quick call to the baby's nurse. We wanted to give her a head's up, that we would be bringing a couple of stow away's along. Though, the advanced knowledge of this was more of a necessity in regards to our preschooler. The only children allowed to visit Little Bird's PICU are siblings, but absolutely no one three years of age or younger, related or not. They'd previously never given us an issue with this before. Still, it was best to warn them because we can never be sure of what changes occur with the wee one from day to day. Being that she's under close monitoring with the new vent pressure settings, her becoming too excited can cause a false record of her breathing. There have been days when MFH and I couldn't pick her up or hold her because of this. 

Her nurse immediately advised us against not only not bringing the kids, but also said it would be best not to come, ourselves. She wasn't saying "No, you can't see your baby", but she did inform us of an outbreak of RSV within the unit. RSV is a highly contagious virus that typically affects preemies, and young children with heart or lung complications or weakened immune systems. It's very common, and especially between the months of November and April. If you have kids, chances are, they've had this before. However, in healthy youngsters, it presents as a mere head cold. Stuffy or runny nose, a cough, some sniffles. For a preemie, it can be life threatening. Imagine pneumonia, and multiply it by ten. 

On December 5th, Little Bird was given her first dose of Synagis, which is an antibody used to help prevent and combat the affects should a neonate contract or be exposed to this illness. This is something she'll receive every twenty eight days until April 15th. Tomorrow, she is scheduled for her second dose. But the staff on her floor is erring on the side of caution regardless. They've taken the initiative to isolate Little Bird as much as they can, hoping that the less people she is exposed to, the better. That's not to say that we couldn't walk in there right now. But to do so now means a full surgical scrub in, and gowning and gloving up. And not that we would mind it, but should we become carriers ourselves, we will essentially pass it directly to her. They are also looking out for the well being of Number Five catching this. 

Number Five had specifically asked me, the night before, if she could visit her baby. I'd already had her dressed and was putting her boots on her when I had to stop mid way and tell her that she and Number Four wouldn't be able to go. Before I could get any further than that, she burst into tears, and complete hysterics. "But that's my bay-bee too! I want to give her luvins!". Call me a sucker for a crying, little, curly-haired girl with big blue eyes, because I damn near cried myself. In an instant, our plans changed. We called Hope back, and our itinerary off. I knew there would be no way I could pull away from the house with her, standing in the window, crying and waving like she would have. So, we opted instead to take a quick drive in the rain, stopping to buy her and Number Four some parentally guilted candy and the boys some equally contrite fried chicken. I can't help but think it was the right thing to do. As I type this, Number Five is scratching what looked like a contact reaction to some new body wash but just might be a viral rash. She's also sneezing, and beginning to sound stuffy.   

Hours later, we were back at the house, where I was busy researching all things respiratory syncytial, when Number Five approached me and began asking questions. Before this, the extent of her awareness concerning Little Bird's medical issues was pretty limited. How do you explain to someone this small a ventilator or trach, let alone why it's necessary? How do you make her understand what these tubes and numbers and wires and beeps mean? Well, let me tell ya. 

First, I sat her on my lap and pulled up the compilation of photographs that we have of Little Bird, and all of her equipment. I began by instructing her to take a big, deep, breath, and told her to hold it in, pretending that she was going under water. She did this, and exhaled after a few seconds. I then Google'd an drawing of an image of human lungs in correlation with where they are located within the body. I told her what they were and what they did. She thought this was pretty interesting in itself. I then showed her a picture of Little Bird's ventilator, and described to her how it breathes for people. I know she can not yet comprehend why the baby's lungs don't work the same way her's do. So, I told her that her baby sister's were broken, and that the machine breathes for her thru a tube that goes into a small hole in her neck. 

You'd think this would terrify a four year old, right? Evidently, not my four year old. She was even more intrigued, and asked about a hundred different questions. Including how could Little Bird sit in her car seat with all of these tubes and wires, when she comes home. She knows what an ambulance is, and what it's for. So I told her that when she does come home, the ambulance will drive her here. Even I was surprised at how easily she grasped this idea. She also asked me if we could take the tube out of her boo-boo (aka, the stoma), once she get's in the door. This proved to be the most difficult aspect of all for her to realize. Number Five has absolutely no experiences with death. Not a pet. Not a relative. Nothing aside from the occasional bug she squishes in between her thumb and index finger. She doesn't quite get what this is or what it means. And at that point, all I could explain to her was that if her tube comes off, Little Bird can not breathe. But she knew the seriousness of my tone when I told her that under no circumstances is she to ever, ever touch that tube once Little Bird is here. That much, she did get, and said "Don't worry Mom, I not gonna touch nothin'!". I'd be a monkey's uncle if I said I believed her, or any other kid her age, when it comes to this. And we will be certain to have a set of eyes on Number Five at all times, too!

Because she still has soooo many questions about everything, I am now on the hunt for the perfect baby doll for her. Perfect, as in one able to withstand a tracheostomy without breaking or falling apart. I got the idea from fellow parents on a support forum I joined several weeks ago. The concept of trach'ing a model in order for not only Little Bird, but also her sister, to come to terms with that of which makes her so unique. From what I've gathered, patients old enough to distinguish this difference really appreciate the effort and the ability to have a little buddy that's so similar to themselves. I think this will help drive it home to Number Five on a level that she can accept. Perhaps my old laptop can even act as the ventilator.

For what it's worth, Number Five is beginning to distinguish some of the special needs of her baby sister. Which is kind of staggering to me. Up until recently, I've known very little about being in this position myself. For her to be able to perceive it as much, though very little, as she does isn't something I would have ever expected. It's kind of like that song by Louis Armstrong:  They'll learn much more, than I'll never know. Those are some truly, genuine words, right there. 






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