"I'm totally dreading the fact that Chase has a heart catheterization scheduled for next week at MUSC. I'm just about as anxious and afraid as I would be if he were going in for heart surgery. The cath procedure will require general anesthesia and putting Chase on a ventilator. I hate seeing him intubated. I hate knowing that tube down his throat is most likely going to cause irritation. I hate not knowing how he'll respond to the anesthesia this time. Last time we were stuck in the hospital for 3 days after his pre-Glenn cath because he just couldn't get out from under the anesthesia enough to keep his oxygen saturation where it needed to be. I can't imagine trying to keep a nasal cannula of o2 on my active, mobile almost-17-month-old should he need it again this time. I hate the fact that they'll be inserting a balloon inside a catheter inside of his femoral artery and inflating it in his left pulmonary artery to help with the poor blood flow due to a significant narrowing. I hate that we'll be required to stay overnight (hopefully just ONE night). I hate that Chase and I will be together at the cardiac step-down unit while hubs and LO are at the hotel. I hate going through all of this -- putting my son through all of this -- knowing it's impossible for me to explain it to him at this age. He won't understand what's going on or why mommy is standing by, doing nothing, while the doctors and nurses are poking at him, putting lines in him, etc. My heart hurts already for what I'll be putting my son through. But I pray it will be a successful procedure and that it will improve his blood flow to his left lung.
Another thing I don't like about this process is Operation Bubble is back on. You know, the big bubble we lived in for ages after we first brought baby Chase home, throughout the time before his Glenn, then for several months after his Glenn? I don't like the bubble.
And I especially don't like it this time around. There are so many reasons. Like LO for example. We took her out of school last week, will keep her out all this week, and keep her out the week of his cath as well. So 3 weeks of preschool she'll be missing. It makes me totally bummed for her, although in her mind (based on what mommy told her), it's just spring break. A 3-week long spring break. I know she doesn't understand it all, but thankfully she's rolling with it, as usual. She's such a good big sister to her special-hearted little brother.
Chase has been making HUGE progress with his physical therapy. But we've had to cancel PT for the past 2 weeks, this week, and next week. It'll be about a month without therapy when he's finally able to resume it in early April. His PT is going to be completely stunned at the grown up little man who has replaced the little baby/toddler she's been working with for so long. He's walking Every.Where. And he's squatting with complete control. And standing up independently from a sitting position. He's no longer crawling. At all. I'm not believing this little man who is replacing my baby boy! I'm not ready for this!!
We just started speech therapy about 3 weeks ago. But again, we had to cancel it for the past 2 weeks, this week, and next week as well. It'll again be about a month without therapy before we're able to resume it again in early April. I've been trying my best to work with him, but I'll be happy to have a professional back to help him with his speech. He makes lots of noises and matches inflection and tone amazingly well, but he's not really saying any consonant sounds like he should be at his age. We'll get there, obviously, but after we get past this upcoming hurdle.
On top of all of this, hubs and I have had to make some additional decisions in Chase's best interest. Obviously hubs has to work. But outside of that, there is no scheduled interaction with any human being outside of the four of us. My lunches with girlfriends? Canceled. Dinners out at restaurants? Notsomuch. Shopping trips to Target or the grocery store with both kids in tow? Not gonna happen. I'm not a fan of bubble life -- not by ANY means -- but it is what we believe is necessary to keep our son healthy and strong for his upcoming heart catheterization.
Please keep us in your thoughts and prayers as we prepare for next week. This is never easy. Obviously. But pray for hubs and I to have the strength we need to do what we need to do, including handing over our son to the anesthesia team at MUSC for this heart cath. Pray for LO, who is known to roll with the punches, and is excited about spending time with her Gramma & PaPa in Charleston. To her, this will most definitely seem like a vacation, which is exactly what I want for her. And of course, pray for Chase. This will not be fun for him by any means. It's so hard at his age because he knows what happens when people in scrubs are around him, and he doesn't like it one bit! But there's obviously no reasoning with him yet, either. I will do my best to spoil the snot out of him following the procedure and in the days and weeks after. And pray that the cath goes well, they are able to successfully balloon his LPA, that there are no unexpected complications, no new "issues" or "concerns" seen on the echo or cath results, and that he recovers well. My sweet, sweet boy.