Some Changes

Kai had trach/vent clinic earlier this week, and they made some changes to his vent settings.  They reduced his peep (the amount of pressure that keeps his airway open) from 10 to 9.  Not a big change, but enough to make me nervous.  Very nervous.  I really don't want to go back to two years ago when he was turning blue all the time.  That was a very scary and stressful time.  We haven't had to bag Kai since putting him on the ventilator, and he has thrived so much since then.

Kai's peep is very high, however, and since he has been doing so well, we are going to try a lower setting.  A normal peep is 2 to 3, so 10 is really high.  It is exciting because it means we are one (small) step closer to getting him off the ventilator.  So far he is handling the change well.  We haven't noticed any signs of labored breathing or airway collapse, so so-far-so-good.

Next month he will get another bronch to reevaluate his airway.  If all looks well (and he tolerates the peep of 9 for the rest of this month), then we will look at lowering his peep even further.  Really great news!  We will also get an ABR done to re-test his hearing at the same visit as his bronch.



We also have a new bed in the works for him.  Since he is the size of a typical two and a half year old, he has pretty much outgrown his crib.  He will stretch his legs out from side to side and touch each side.  He doesn't have much room to wiggle, and although he pretty much stays at the top of his crib, more room would be really good for him.  It looks as though we will be getting a hospital-type bed, with the rails and head part of the bed can be raised.

Another big change is for his car seat.  Right now Kai is in a regular convertible car seat that we have still facing backwards, but he is outgrowing it in the rear position.  Since he has very little head control, having Kai forward-facing has not been a possibility.

I didn't know it, but to fix the problem, we will have a collar (similar to what people wear when they have a neck injury) that we would put on him when in the car, and he would be in a forward-facing car seat.  Ugh.  One more restrictive device to put on him.  I am not excited at all for that change, although it will allow more room in the car for his equipment, which will be nice.

Feeding is still a work in progress.  Surprisingly, he is starting to enjoy trying foods, but after about five or so bites, he will start gagging.  If he gets too much in his mouth, he will gag.  His OT is impressed with his willingness to try eating.  He still has the tongue thrust reaction, where his tongue pushes out most of the food, but I think he is swallowing more than previously.  Progress!


Cuddling with his blankets.

We have added another specialist to our mix: vision.  For some time now, I have resisted getting the vision specialist on board, mostly because it is one more appointment to add to my already crazy busy schedule (and I just had a baby!), but also because I really couldn't see what they would be able to help Kai with that we don't already do.  I feel like the appointments with the hearing specialist are mostly a waste of time.  In fact, the hearing specialist is constantly telling me that she learns more from me than she thinks I learn from her.  She is impressed with how in-tune I am with Kai, and I already do pretty much everything that she has for me.  There have been times when the visits seem productive, however, which is why I have her continue to come.  Besides, she helps me out with my sign language, which we still attempt with Kai (although honestly, we have pretty much given up on signing with him).  I took a sign language class at the local community college with my dad when I was in high school, but that was so long ago that I have forgotten much of it, so it is nice to have a refresher.

The vision specialist actually has some really neat things that she will be bringing to work with Kai.  I am really excited for the next few months (until he turns three).  I wish I had given her a shot earlier.  However, because he has one good eye, he technically doesn't qualify for vision services.  We are able to have her come because it is such a short duration, and she is able to justify coming based on some of the therapies and equipment that she will be doing, of which the hearing specialist doesn't have access.

It is crazy that if a person has one good eye, that they are not considered visually impaired.  I didn't know that.  Since Kai has unimpaired vision in his right eye (although we recently learned that he is very slightly near-sighted, so glasses will most likely be in the future), and he has a slight field of vision in his left, he is not considered visually impaired.  Wow.


I don't think that Kai is aware that we have added another to our family.  He went through a fussy period during the first couple weeks after River was born, but I attribute that more to a break in his normal routine than anything.  Since he is mostly deaf, the baby crying has no impact on him at all, and even with his hearing aids, he seems not to notice.

It is hard, because developmentally, he is still at a four-to-six month level, so really, he doesn't have the cognitive ability to understand he has a new sister.  Still, we are acclimating River early, and hopefully she will love Kai with the fierceness that Zuri does.