Wednesday, April 30, 2008

Answering A Trach Question...

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.

10 comments:

Anonymous said...

Thank you for taking the time to answer my question. Your explanation was clear and I understand how and why each child needs/may need a trach. Thank you.

I must confess that I started to get teary-eyed when you said that they scheduled her trach surgery. Bless her heart. Ava has already been through so much.

I check in on your blog everyday and look for your updates.

Take care of yourself; hang in there. Thinking of you and your darling family.

Ashlea said...

I didn't ask for it, but thank you for explaining the trach. I couldn't agree more with you on the judging people part.

Heather said...

A beautiful post. You are so blesssed to have Kaden and Ava and they are equally blessed to have been given a Mom and Dad whose love is what strengthens them and allows them to thrive daily. You both should be so proud of yourself's.

Anonymous said...

Ava,
Is in our daily prayers. Your family is an inspiration! I to try to never past judgement when people make choices . Like you said "each child is special what works for one does not always work for another.' My daughter and I just had a converstaion as she loves to read and the book she just read is says we already all come with the path we will follow. I told her I would have to disagree . God gave us free choice the knowledge to understand the choices we have been given. What ever choice we make he will be there for our support.We just have to pray for his will for us when times are tough. I do believe there is one choice he hopes we will pick but like I stated will be there for both. I am sure you know as I do nothing is that black and white as parents.Your family will continue to be in our prayers. One more thought I just thought of when Thomas was in the NICU I talked to a friend saying " Doesn't God know he has given me more than I can handle because I have always heard " God will not give you more than you can handle." She told me " Well he does give us more than we can handle because he wants to see how we handle it on our own or Lean on him for hope and guidance. This helped me so much for he rest of Thomas's stay and many more life journey's twist and turns. (hugs)
Joanie and Thomas

Anonymous said...

Just wanted you to know we are praying on this end . Do not give up hope . Thinking of you and sweet little Ava . Catherine Megan's Mom

Isabella said...

First off, WOW, you really know your stuff!! I am praying for wisdom on the Dr's part that they make the right decision that is best for Ava. And I am praying for her strength and then peace for you and Nate.
If you need anything, let me know.
Love and Prayers Always
Megan

Anonymous said...

Thank you for explaining this to all of us that read your post and keep up on the latest outcomes of Ava and Kaden. They are both wonderful children and they have their MOM and DAD to thank for this. They are such little fighters. I must say that I am so impressed with Kaden and all that he has overcome, I remember him going home and the Dr's telling you and Nathan that he may not crawl or walk for that matter. And look at him now, taking 8-10 steps all by himself. WAY TO GO KADEN. You keep going and proving those Dr's wrong. As for Ava she is a fighter also, and I hope that the Dr's will make the best decisions for her well being also.
Know that we are thinking of you daily and keeping you in our prayers. Hang in their Amy and Nathan and remember if there is anything that you need or I can assist/help with do not hesitate to ask.
Take care and give those precious children hugs and kisses from Pamela and Megan.

Halle's Momma said...

Thank you for opening up and taking the time to educate and inform everyone. It's given me a much better understanding of the situation, and of course there are always lessons to be learned from your strength. You are awesome woman.

adrianna york said...

I wish you the best little Ava. I hope you get better soon. You are in Gods hands and he will take care of you and your big bother. I just wanted to say that I wish the best for you and your family.
From Adrianna and her mommy Kim

Michelle said...

Thank you for sharing your experinences. You are an amazing mommy to Kaden and Ava. The love for your children is so evident through your words. Prayers continue for Ava.

And can I say WOW! Kaden is a communicator. I love the words he typed. Too cute.

HUGS!