I wanted to take this time to answer a question I received from one of our readers. I apologize in advance if this turns out to be a novel, but I will try to keep it short and simple.
Kaden was trached at 6 months of age. He was showing signs of respiratory distress and continually needed to be on the ventilator. Kaden would not have survived without the trach. I mean, he could have stayed intubated (the tube down his throat) but that really isn't an option. After traching him they ended up doing test and found out he has a condition in which his bronchial tubes (tubes going to the lungs) collapse. He needed the pressure behind the vent to keep them open. The trach allows him to be on the vent for a long period of time, causing less damage to his airway. His airway is 60% scare tissue from being intubated so many times and for long periods of time. Just this last June we found out that his vocal chords are paralyzed closed. To speak your vocal chords close and to breath they open. Well, since they are closed he will most likely require the trach to breathe for the rest of his life. We should be able to get him off of the vent, though. Remember, he only has half of his diaphragm the other is a patch. So he needs to get use to breathing with this "makeshift" diaphragm. He should be able to do it...oh and he has outgrown the condition in where his bronchial tubes collapse, so that isn't an issue anymore. I kind of believe that Kaden is just so use to being dependant on the vent that he is nervous when he comes off and rightly so. He is on low settings so it is just a matter of getting him strong enough and use to breathing on his own.
As for Ava, well, she would require the trach for some other reasons, some the same some different. As you know she has a heart condition, different from Kaden's lung and diaphragm. However, her heart is not the reason for not being able to come off of the vent. With Ava, she has just shown so far that she does not tolerate coming off. The doctor's have not really found an explanation. One thought behind this is that she is just not strong enough. Breathing is a really hard chore for her heart. She burns a lot of calories just working on breathing (I wish I had the same problem : ) ). She continues to get a lot of fluid built up around her lungs which could also contribute to her work of breathing. Deciding on traching Ava is a hard decision. I have seen her in the past do well off of the vent. Like I said though, she is showing that she can not tolerate it so the doctor believes that she just needs a little more time to gain strength and this would give her that time. I have heard numerous times that when an adult is intubated for over a week, the doctors immediately trach them and when the adult is ready they decanulate them. Traching in some cases (hopefully like Ava) is just an issue of getting the patient strong enough to breathe on their own again. I hope that gives a little reason as to why Kaden and maybe Ava need a trach.
To answer the rest of the questions...
Yes, although somebody has a trach they can eat, drink, and talk. They can eat and drink because the trach is in the airway, not the esophagus. Sometimes patients with a trach need a pacimere-valve (spelling ??) to help them talk. I am not sure as to how it works because Kaden doesn't need one at this point. He can make noise around his trach. Kaden can say ma-ma, oh-oh, map (off of Dora). He can mimic everything, although he is mostly making the ahh sound. We can tell which songs he sings, and who he is mimicking.
Trach care is not that hard. I do admit that I cried the first time I had to do it on Kaden. I was so scared, but I did it and now I could probably do it with my eyes closed (not that I would try). I use to have to have somebody always helping, but I do it on my own now, so can Nate. Kaden is very calm when we do it. He knows the routine. I am not a big fan of trach care time, but it is a part of the bedtime ritual now. I do worry how we will fit in two rounds of trach care (if Ava gets one), but I am sure it will just happen...we don't have a choice. What really worries me is how much room we DON'T have in our apartment. Kaden's supplies take up a lot of space, so I can only imagine what it will be like with Ava's supplies added to our mayhem.
After posting this, you all probably realized that traching Ava is becoming more apparent. The doctor did schedule her for the surgery next week...just in case. So far I guess she has shown the doctor that she has not tolerated the wean from the vent. I am to the point that I just want to tell just to do it. I don't know. It is so confusing making these decisions. We have done it once with Kaden, I don't know why we have to do it again. LIFE!!!, can it get any crazier???? I will keep everyone updated as much as I can tolerate getting on here and typing about it. If I don't post, please don't get too concerned, maybe I will just get on to say..."Hey, still hanging in there."
Thank you so much for asking questions. I love when people ask and not judge. That is one thing I have learned from this situation...I would never judge another parent for making or not making a certain decision. We have no idea what the parents are going through or what their thoughts are about things...or what they have been told by the doctors. Each parent will do what is right for the child. We love Kaden and Ava and would do anything for them. If we would have listened to a lot of what was being said about Kaden's future, we would not have been able to enjoy life with him. I feel that Kaden and Ava will fight until they can't or don't want to anymore, and then God will be there to walk them home.
Do Not Worry
9 years ago