Tuesday, June 30, 2009
Saturday, June 27, 2009
... with making montages, that is. I know, I know, I have done a ton of them lately. But I'll hear a certain song and think to myself "that song would be great in a montage". Or I keep shooting pictures and videos of Marissa and thinking to myself "this would be great in a montage". I need help, I know. But it is just so fun!!! So watch and enjoy now and have me committed later!
Posted by Alicia at 3:36:00 PM
Thursday, June 25, 2009
We both survived yet another salivagram and no one got hurt! ;) Marissa once again surprised me. First, they squirted the dye in her mouth and she didn't gag once! I had our trusty "chuck bucket" handy just in case she threw up, but she didn't need it. Hooray! And she stayed almost perfectly still for the hour and 10 minute test. Almost. She did get a little restless at the end, but, for the most part, she was content to lay and watch her Signing Time videos. Thank you again Grandma Utah, those have been a true life saver on more than one occasion!! And they are thoroughly educational as well as entertaining!
Posted by Alicia at 1:53:00 PM
Even though it is later, I'm still not feeling too friendly toward this guy they keep calling "Uncle Dave"
Posted by Alicia at 6:03:00 AM
Tuesday, June 23, 2009
Or actually, more like wading. But the concept is the same. The classic summer way to cool down and have fun at the same time.
This is Marissa's fourth time "swimming". The first time was last summer and she had a great time. The next two times after that were disastrous, so we decided to put the pool away for the season and try again next year. Well, it is now next year and, last weekend we decided to give it another go. I think it was a success and we are hoping that she is now old enough, she will continue to have a good time when we try it again.
Of course, for trach kids, certain activities such as swimming and playing in the sand can be dangerous. But we feel, with the proper supervision and the right amount of care, Marissa should be able to enjoy "swimming" with no problem, as long as she does not submerge from the chest up.
So, I know I have made a lot of montages lately. But this one is so fun and I just couldn't resist. Plus you all seem to dig them, so enjoy!!
Posted by Alicia at 9:59:00 AM
Sunday, June 21, 2009
To the best Father our Daughter could ever hope for...
Posted by Alicia at 6:02:00 AM
Friday, June 19, 2009
Just had to show you all the right way, that's all!
And now for some backyard bravery and chit-chat:
Posted by Alicia at 11:03:00 AM
Thursday, June 18, 2009
Posted by Alicia at 6:15:00 PM
Tuesday, June 16, 2009
... regarding this previous post.
I would like to share with you some concerns I have regarding my daughter's, Marissa, airway.
We are noticing a loud squeak when Marissa is inhaling when she is agitated (laying on her back, not capped or anything else on her trach) She gets really agitated when it is bedtime and she is told to lay down (like any other toddler). This is the scenario the video captures. We started noticing this around the beginning of the year and just chalked it up to her swollen tonsils. Even though logic would tell us that her breath would go the path of least resistance and if she was having trouble breathing past the trach tube and past her swollen tonsils she would just breathe in and out of her trach. We had the T & A done and while she was recovering, for about the first month, we did not hear the squeak. Then we started hearing it a little bit. And then we downsized her trach and we started hearing it a little more. I do think she has handled the downsize well and I don't think that is causing the issue, simply because we had been noticing this before the downsize.
In the past, we were in the habit of not turning the pulse-ox on until after she fell asleep because, when she would kick her legs, it would stop picking up and would false alarm. We recently decided to turn it on while she was agitated and squeaking and her sats go down to 88, 87, 86, as you can see in the video. As soon as she calms down (which she does realatively quickly) her sats go right back up to 94 - 97. We can tell the pulse-ox machine is getting a pretty good signal. The squeak sounds EXACTLY like the stridor she had in the NICU before she got the trach. We feel her tongue is possibly still occluding her airway in these instances.
Also, with the cap on her trach, she still works to breathe when she is playing vigorously. She wheezes, for lack of a better word. It mainly sounds like she has to work harder to inhale air past the trach tube itself. She also has the same squeak when she cries with the cap on. Most of the time, we will take the cap off to let her cry because she just can't get enough air. I have some friends whose kids have trachs and some of them who are capping say that their kids do work to breathe a little more, but there is no squeak. So, my other question is, could her trachea be collapsing somewhere and it has been missed by the bronchoscopies because it only happens when she is alert and agitated? Or, is this just a symptom of being capped and still having to breathe around the tube in her throat? Is there a scope that can be done in your office, without anesthesia, that could get a better picture of what is going on when this happens?
She has been downsized for three weeks and she wears the cap all of her waking hours, just like she did with the PMV. She does well capped, except like I said, when she cries. We have an appointment to see you on July 7. Please let me know your thoughts on this and if you would like to see Marissa sooner.
Thank you for your time.
Here is her response back to me:
I’m not sure I can completely explain her squeak. It doesn’t sound completely consistent with upper airway (i.e. her base of tongue); at least over the video. If the squeak happens while she is awake, upright, and capped that also would tend to make me think it is not base of tongue because this collapse should be improved with positioning and level of alertness. It certainly could still be a component of tracheomalacia. The downside of my bronchoscope is it tends to give a more static picture secondary to the fact of the rigid tubing and general anesthestic required. The bronchoscope tends to “stent” the airway so I often don’t see a completely dynamic picture of collapse. The flexible bronchoscope, however, does give this type of picture. This is generally done by peds pulmonary (i.e. Dr. M) because his scopes are equipped to do this. My flexible scopes in the clinic (i.e. the ones we use to eval the larynx) are shorter and do not have the capacity for suctioning. Usually, when pulmonary does a flexible scope the patient will be under light sedation with anesthesia present. Because you are passing the scope through the vocal folds there is concern for possible laryngospasm. They also would need to perform this without her trach in to get a full dynamic picture (the trach also functions as a stent). I could take a look through her stoma (without the trach in place) with my scope, however, if we have a lot of secretions, I may not get a great picture (but we can certainly try).
When you come in to see me we could give the flexible scope through the stoma a shot. I also would like to look (if she will tolerate it) from above (i.e. with the scope passed through her nasal cavity) to get a dynamic picture of her larynx and base of tongue while awake, agitated, and capped.
So there you have it. There could be a possibility that tracheomalacia is still present. If this is the case, Marissa will obviously not be decannulated soon. More than that, I feel an overwhelming sense of disappointment that her issues may not be resolved like we thought they were.
Posted by Alicia at 11:20:00 AM
Sunday, June 14, 2009
It turns out Mama was right about having a great time on our vacation. Aside from Major Puke Fest 2009 on the trip out to Grand Junction, and also while we stayed there, and peeing out of my diaper and soaking my car seat on the way home, it was a FUN FUN time!!!
Get ready for many many pictures chronicling our time there:
We saw Uncle Brian for the fist time in a LONG time!
I danced with some of my cousins
I watched Daddy run with the crazy dogs
And yes, Daddy was wearing his Army "cruit boots" with his shorts. His excuse for looking like a dork? "We are way out here in the sticks, no one can see me". Silly Daddy!!
And, the best of all, I moved furniture and made Nana laugh hysterically. You can even hear her snort about 15 seconds into the video!! ;)
Posted by Alicia at 7:24:00 AM