Its been a while since my last post. B"H we have been busy with life and mostly with good things. Avigayil has made many improvements. Most days she breathes on her own without even oxygen. When she is healthy, she behaves and looks like any other kid (just much smaller). Weight gain has and continues to be a struggle. She still drops about 10% of her body weight every time she gets sick and then spends months trying to put it back on. She still gets sick at the drop of a hat and when she does she can go from a bit sick to critical very quickly. In fact, she spent most of the month between Purim and Pesach in the hospital, fist with a virus that put her in PICU and then shortly after coming home, she went back with the flu. Every virus and infection is still a very big deal with her.
Our new challenge is discovering if her lung damage is permanent. Her doctors are hoping to do a bronchoscopy soon to establish if she now has a condition called PIBO - Post-Infection Bronchiolitis Obliterans. In other words, she may have been sick so often and for so long that the small airways in her lungs have been obliterated. This would mean that she would always be susceptible to viruses and infections and that they would always have a much bigger impact on her than on others. It would also explain why she has not yet gotten better.
Another development has been Avigayil's new and intense fear of clowns. Every time she sees one she is in the hospital feeling terrible and then someone comes and sticks her with a needle or does some other unpleasant procedure to her. I can't really say that her fears are unfounded. Most of the fear seems to focus on the red nose. During her last hospitalization, all the clowns had a meeting and made an effort to take off the noses before visiting her. I was touched by the gesture, she was not quite convinced.
Another recent experience has been a reminder of how different life is for her. Avigayil had her first dentist visit. First off, she didn't quite understand the concept. It was hard for her to believe that there was a doctor who was only interested in her teeth and that she wasn't going to have blood drawn or be hooked up to any special breathing equipment. Afterall, what kind of doctor could she possibly be if she didn't even have a stethoscope!
After a lot of anxiety in the waiting room and much reassurance that in this office they don't use IVs and that this wasn't a hospital, we went in to see the dentist. Avigayil was confused about the chair in place of a bed but climbed in when told. She looked at the doctor with big teary eyes and a quivering lip and a look of sheer terror. (She hadn't even seen the drill yet at this point.) The doctor again reassured her that this was not a hospital and she just wanted to look in Avygayil's mouth.
Well, surprise, surprise, Avigayil has two cavities. Honestly, considering that she is on a high calorie, high sugar diet I'm surprised it took this long. This lead to the discussion of anesthesia. As we all know Avigayil and anesthesia don't get along. All anesthesia depresses breathing and there is no way to know how Avigayil will react to any given type but she already has a history of severe reactions to some types, meaning we need to be careful with everything. There are two types of anesthesia used here with children in dentistry. The first is a liquid the child drinks. There is no antidote to this type of anesthesia so that is clearly out. The second is a gas, commonly called laughing gas. This also slows and depresses breathing. While preferable to the liquid, it should only be used in her case if absolutely necessary.
The third option is to do nothing. It is a baby tooth with will eventually fall out. As long as the cavity doesn't get worse, get infected or start causing her pain, the doctor explained, we could just try to wait it out. I liked this plan.
However, the doctors' office wasn't comfortable saying this would not cause long-term damage without sending her to a specialist. The specialist was located in....that's right, a hospital. Great, there goes all our hard work convincing Avigayil that dentists were safe.
So we showed up at Hadassa (of course they don't have dentists at Shaare Zedek, that would have been too easy) and what is the first thing we see? A medical clown! All illusions of a quite visit are out the window. You could almost see the look of betrayal on Avigayil's face. Finally, after a long wait and a repeat of the first dentist's visit's anxiety and fears we go in to see the dentist. She concurred that we could wait but added that if we do have to deal with the cavity, they will do it in an operating room with an anesthesiologist present and a space in PICU reserved "just in case".
All this for a cavity.
Sometimes people ask me if life will ever be normal for her. They ask if she will ever experience things the way others do or if there ever be anything that will happen for her easily? I think about their questions and the unspoken implications behind them. Then I see her smiling face. Despite everything that she has been through and everything to come, she is happy. She does see this as normal. This is just her life and this is how Hashem wants it. Rebbitzen Heller once told me something about the efforts and sacrifices we make for parenting in general that I think about often in regards to Avigayil. "This is what Hashem wants from you right now." This is what Hashem's plan is for her and for us. And so we will go along with it. Really, what other choice do we have? The only option is whether or not to experience it with simcha, happiness. In that regard, I think the choice is fairly clear.
