TICU Tricks

As of this very moment, Ivey is doing well. She is back on her normal medications with a couple of new ones added to the batch. She is gradually adjusting to her new trach. When it comes to her feedings, she is still taking them via her feeding tube which runs through her nose to her stomach, something she has had since day 1, literally. And as we have come to accept, it is always one step forward about twenty steps back. Ivey is on a continual feed where the feeding pump runs continually for 5 hours; she rests for one hour, then it all starts over again. Somewhere in there a good case of reflux occurs. This is where the trach adds a little excitement to our normal routine. The trach must be suctioned, dressing and trach ties normally must be changed; and not to be forgotten, her bedding and clothes must also be changed, unless I am holding her, then we both need changing. All of this probably would not be quite so dramatic if not for the PIC line in her arm, something to be guarded at all costs and not pulled out, three leads connected to her for monitoring her heart, a pulse-ox monitor, and her perpetual feeding tube. However, she has gotten rid of her IV’s. Girls and their drama!

This is the moment where you think, “That poor baby!” DON’T! On more than one occasion Ivey has shown us that she has plenty of attitude. I would like to think of it is a little bit of sass, better known as being stubborn or strong-willed, with a tad of retaliation. I can't imagine where she gets that from???

She has found a way to drive the nurses crazy.

It gets to be down right comical at times.

Now that Ivey is no longer under the paralytic or sedatives, she can touch her face with her hands again. Ivey’s hands go straight for her conformers. That is right; she takes them out of her little eyes. You see, this is normal behavior for Ivey at home. She takes a conformer out; I put it right back. It’s almost like a game. You may remember in the beginning of our life as we were adjusting to her new conformers - TURMOIL. How would I ever place these enamel gadgets back into the place where her little eyes should be? Well, it does not faze anyone in this household anymore. So much so, that when I had her out to lunch with me the other week, she popped one out. I popped the conformer right back into her ‘eye’ sitting there at the restaurant table, only to look over at the table next to me with four sets of mortified eyes staring back at me in wonder of what I was doing to my child.

The view from their seat - mortifying.

The view from my seat - quite humorous.

Back to my point, Ivey is popping her conformers out left and right. Conformers are a new ballgame, even to these highly trained and skilled nurses. With the exception of a night nurse in PICU whose nephew was born with anophthalmia, no one has ever actually seen a case of anophthalmia. At best they have read about it. Ivey’s hands start sneaking up to her eyes and the nurses start trying to push her hands down; they have even attempted to put a set of cuffs on her arms that will not allow her to bend her arms to rub her eyes. Now as you can imagine this has not gone over so well with Mom here, I take the cuffs off the second they put them on. So, I have shown the nurses how to replace her conformers. Even they have a look of apprehension at the thought of replacing them; however, a couple of the nurses have almost seemed giddy that they might be so lucky to try something so new. Isn’t the saying ‘Don’t get mad, get even’? Ivey may not realize it, but she is really getting even for the necessary but uncomfortable procedures she has been enduring at the hands of the nurses.

This has been hard on us all. This has been especially tough on some who have had the opportunity to visit. We love you all.

Hope this made you smile.