UPDATED AT THE BOTTOM OF THE POST ~
Well, unfortunately Marissa is not doing as well with her trach capped as she was a couple of days ago. I'll try to explain this as best I can without this being too long.
From the second Marissa was born, she had stridor. This was a squeaking sound when she inhaled. Through every intubation/extubation it was always there. The docs finally told us that the stridor was because she had moderate tracheomalacia. This means that the cartilage in her trachea was not fully developed and was floppy, causing her trachea to collapse. Ultimately one reason she needed the trach. Once she got the trach, no more stridor.
Fast forward to Aug. 2008. When Dr. P did the bronchoscopy, she said Marissa's tracheomalacia had resolved and the only reason she needed the trach at the time was her small lower jaw and chin. She did not feel comfortable downsizing Marissa's trach at that time but said we could try capping to see how she did. She did not do well. We could hear her wheeze like someone would while trying to breathe around a stick in their throat. She also squeaked, sounding like she did when she had stridor. However, we never saw any of the classic signs of respiratory distress such as change in color, flaring nostrils, or retractions. We even put the pulse-ox on her and her O2 sats stayed normal. We decided she just needed a smaller trach/stick in her throat to breathe around, so we stopped trying to cap her until this could be a possibility.
Fast forward again to the beginning of this year. We started hearing a small squeak when she would cry, laugh or play real hard. She has had a leak around her trach for some time, which allows her to breathe out of her mouth and nose even without anything on her trach to assist her. This is a very good thing, showing us that her tracheomalacia is truly gone. It was around this time that we noticed her tonsils were very enlarged. So we thought the squeaking came from the enlarged tonsils when she was breathing around the trach tube. It made sense that the enlarged tonsils would cause an obstruction and thus the squeaking. I did not feel the need to tell anyone about the squeak because we were going to solve the problem: we had her tonsils and adenoids removed in April.
It has been a little over a month since her T & A and we really haven't heard the squeak. So we were very optimistic about the downsizing and capping. As I said in my previous post, she did very well capping immediately after we downsized her trach. About an hour and a half later, we started to hear a little wheeze/squeak. We thought she was just tired and needed a break. Yesterday she did OK but the wheeze/squeak was more prominent. Today it was even more prominent, even happening when she wasn't capped, but when she cried, laughed, or played hard, just like before her T & A. Again, no signs of respiratory distress and her sats are normal. She seems to be handling the downsize well but the capping seems to be a problem. We are going to see how she does over the weekend, maybe not cap as much, and talk to the doc on Monday.
I am trying so hard to not be scared and discouraged right now, but it is so difficult. Just like many of our fellow special needs parents, Jeremy and I know all too well the game of thinking and hoping something good is going to happen, then getting our hopes up only to have them dashed as we discover a new problem. Honestly, the trach and all that comes with it has become routine to us now. It is a pain to constantly deal with all the extras that come with the trach, don't get me wrong, but it is just another part of our lives. Sad to say, but we are pretty used to it.
But, our little girl has fought so hard to overcome so much in her short little life and she deserves a little something good to happen. She deserves to know what it is like to breathe without a hole in her neck and a tube in her throat. She deserves to understand what fully tasting something is like. She deserves to eat, to know what ice cream and cake are at her birthday, to know what McDonald's fries and burgers and McNuggets taste like. She deserves to learn how to swim and know what it's like to play in a sandbox or on a beach. I am so scared that we won't be able to give her these things for a long time. I am so scared that we have somehow missed something like subglottic stenosis and that is what is causing her latest issues. I am so scared that her tracheomalacia is not really resolved after all.
Please pray with me that the issue she is having with capping is easily overcome. Please pray that it is just the fact that she needs to get used to wearing the cap.
Please just pray.
Any one of my family members can tell you that I am a drama queen. I typed this out last night after a long hard day because I just needed to get it off my mind. My drama queen brain tends to come up with impossible worst case scenarios when things don't look like they are going my way.
Having said that, yes Hope and Jenna, Dr. P would have seen something like subglottic stenosis or tracheomalacia during a bronch. My crazy brain tells me that nothing is impossible in medicine and maybe, just maybe she missed it. My brain is my worst enemy. I need to not listen to it a lot of the time. It is evil. :)
Jenna, Marissa's trach right now is the next to the smallest size. I think the school of thought is that we need to have that "emergency back-up next size down" trach just in case the 3.0 comes out and won't go back in.
Jen, capping with the 3.5 Neo did not go well either. She is, now with the 3.0 Neo, starting to sound like she did with the 3.5. Yes, it is incredibly small and that's what scares me. If she is having this much trouble with the next to smallest size, is she ready for this next step? If not, why not? I will be trying to tap the minds of the parents on the trach board to get their take on this situation. And no, your comment was not annoying, you made me laugh sista!! Just what I needed this morning.
Bottom line, I guess I also need to ask for prayers for myself. To not go overboard coming up with all the disastrous worse case scenarios. To just take a deep breath, like Hope knows so well how to do. ;) I am just so bad about pinning all my hopes on one thing and when it looks like it is not going well, I just freak out. Thanks for some perspective guys!
This blogging thing really is great free therapy! Group therapy even! :)
Oh, and Hope, I LOVE your new profile pic. Gorgeous!!