Sometimes, you try not to talk about things because you’re trying not to believe that issues are a little worse than you expected. I’m not talking about complete self-delusion here. I’m just talking about… the “hope” that things are not as bad or negative as they seem…
Charlize is doing great. That’s a fact. She’s doing really, really well… When she’s not having any spells.
That, unfortunately, is a fact as well.
About two weeks ago, what we understood to be tet spells (that she would have about once a week) started becoming more frequent. In fact, they even changed. Where she would cry until she became blue before… she was now crying BECAUSE she was turning blue. In other words, she would be fine one moment, blue the next, and then have a fit.
It’s a great self-defense mechanism because when she’s screeching like that, we can hear her no matter where we are and can run to her aid. We do manage to calm her down relatively quickly and then she… collapses somewhat. She gets lethargic, gray pallor to her skin… almost clammy. She’ll take some time to recover, but is then back to being the normal, happy, baby we know.
Like I said, about two weeks ago she started having them more frequently. Like every other day. Then, twice a day every other day. Recently, like yesterday for example, she had three spells.
We’re really looking forward to next week’s appointment where we can check her oxygenation level again and more than likely have another ultrasound. When I spoke with the pediatric cardiologist on call about her spells a few weeks ago he mentioned the possibility of putting her on medication if things deteriorated too quickly (which, let’s be honest, it has).
Ideally, they will do everything they can to only have the surgery at or after she’s six months old. That will be on Xmas Eve. I’ve been expecting it to happen in January. I spoke with our Pediatric Cardiology Nurse yesterday and she told me it could go until February. It’s still too early to tell. What I do know for a fact is that if she has a really severe spell (we can’t get her to recover) and we 9-1-1 it to the hospital, they will not let her go without operating.
I’m going to call them again later this morning because I’ve got a number of other questions that have come to us that I’d like to get answered. For example, is a spell painful? What does she go through when it happens? What does she feel? If she ends up on medication, what kind of medication is it? How and for how long will she take it? What exactly will it be like post-op? How long of a recovery will she need before she is “safe” to travel? We had already canceled all our travel plans for the last month as well as the ones I had planned during this period of time. (Which means that as much as I really want to go to TCAF… *really* want to go to TCAF… really REALLY want to go to TCAF – more than I wanted to go to the last PCon) I can’t because (a) I can’t bring her and (b) I won’t go without them at this point. But that’s just car travel. My sister-in-law is getting married in the Dominican Republic in May. Somehow, I don’t believe I will be going to that. It all depends on (a) how Charlize is doing, (b) how the surgery goes, (c) how her recovery will be, (d) what kind of follow-up she’ll require post-op. Love my sister-in-law, though I do, I love my daughter more. I will not do anything that will put her in any kind of risk.
Up to now, Chantale and I have been somewhat “shielding” everyone from Charlize’s tet-spells. When they’ve happened during times where others have been around, we’ve simply acted like it was a regular cranky spell and that she “wanted to be rocked” and walked away with her. We didn’t want everyone to worry. No, actually, we didn’t want everyone to panic. Panic does not help soothe a baby who’s very attuned to those around her. But I’m not going to shield anyone any more. Our Best Friends, Francisco & Line, were over last night and it happened. While Chantale soothed Charlize, I explained to them what was happening and why. It’s the reality we have to live with for a few more months.
Our daughter will be completely fine and cured in less than a year from now. We know this. But until that time, she will need a bit more constant attention and care than we had “expected” to. We also know this. It was just about time to accept it and make others know and accept it, too.