Still On Track

So far, we are still on track to probably decannulate Marissa in September. We just had an appointment with Dr. P today and we downsized her trach from a 3.0 Neo to a 2.5 Neo (the smallest trach made without going custom).

I emailed the doc a couple of weeks ago with my concerns that the squeak was still there and I didn't think it was due to swelling and irritation in her airway. I told her it was the same squeak that was there before her surgery and I just didn't think it was going to go away with time, at least not before decan season is over. I asked her, based on the fact that she is not in respiratory distress when she squeaks (no dropping of sats, no color change, no retractions or nostril flaring), if she thought Rissa's vocal cords are still not moving properly and how comfortable she is with decannulating anyway. I let her know that there was no way I want to decannulate if it is not safe or in Rissa's best interest. Here is a quote from her email response to me:

If the squeak is still present, I think we are looking at the possibility that, even though the graft opened her airway up some, it may not be open enough to prevent her vocal folds from meeting midline and creating the sound. There are positives and negatives to this. Negative, her cords are still not completely lateralized, however, the positive is, if her airway is stable, this may not matter and it decreases our risk of aspiration.

So, the squeak may not be a problem. Dr. P wants Marissa to have a sleep study and, if all goes well, we will see her in Denver sometime in September to yank that tube!!!

Blogger's Block

I have not had much to blog about lately. Just sitting in a holding pattern waiting for the next move with this whole trach situation. Not much else going on, other than a busy Summer!

I guess I can share pics from the last two weekends. And because I have nothing else to talk about, there will be a lot of pics!

On July 10th, Jeremy, Rissa and I got together with a few of my college girlfriends and went to the Downtown Aquarium in Denver. We had a really good time catching up and we promised we wouldn't wait so long next time to get together.

Kaden & Marissa checking out the deep sea diver

How did she get up there???

The Big Squeeze!

Reliving the ol' senior picture classic tree pose!

Together again, minus one

Three of the coolest chicks I know!

Group shot!

This last weekend, we had the pleasure of having my youngest sister come out from Grand Junction. Jeremy and I have not gone to a big concert since before Marissa was born. This used to be one of our favorite things to do together, so when the opportunity came up to go to a big heavy metal festival, we were chomping at the bit to go. Only problem was that my sister, Michelle, who usually watches Marissa, had to work. On a Sunday!! Only the second Sunday she has ever had to work since working at the hospital for the last four years, by the way! Just our luck!

Because I felt that Marissa would fare better all day with someone she is familiar with, I had the bright idea to ask my sister, Katelynn, if she would come out to watch Marissa. She said "yes", so she got here Friday night. Saturday was spent training her, going out to lunch and to see "Eclipse" with her and Michelle, and hanging out with Uncle Nate and the two Aunties in the back yard. Jeremy and I scooted out to Denver for our metal fest Sunday morning. It was a blast! It was a long, hot day with lots of walking and plenty of crowds, but well worth it. Jeremy and I had a great time and got back home at midnight to a sleeping Marissa and a very tired Auntie Katelynn! Thanks again Katelynn, we love you!

Anyway, here are pics of our backyard hijinks.

Auntie Chelle, Rissa, and Uncle Nate

OMGosh! The chair has eyes!

Auntie Katelynn comes out of hiding

Uncle Nate sporting a great pair of shades. Lookin' good!

Now, Mama's turn for the shades

Making sidewalk art with Uncle

There's bad intentions behind those eyes...

Can you see it coming?

Ahhhh, it was all about breaking the chalk!

Uncle Nate's dog

Lovin' on Auntie Chelle

And spreading the love to Auntie Katelynn

Playing catch with Auntie & Uncle

Goofball City!

There, that's better! Well, maybe...

Wait and See

We got some great news from the bronch yesterday. There is absolutely no malacia, no granulation tissue, and she is not collapsing at the stoma. Hooray! The doc said her airway looks beautiful, aside from some swelling, which she still thinks is what is causing the squeak. I asked her if there is anything else we can be doing to reduce the swelling and she said no, we just need to wait and see.

I have a few ideas though. We have been capping her at night instead of using the cool humidified mist she used to use. She has been doing very well with the cap at night. Now that we know she can be capped at night, I think we will go back to using the cool mist to to see if that helps with the swelling. I also wonder if she is refluxing and the Zantac has stopped working. I am going to email Dr. P with this idea and ask if there is some other med that we can use, just in case this is the problem. I also wonder if capping her all day is possibly contributing to the swelling and irritation, since she is having to breathe in and out around the trach tube, so we are going to try using the PMV during the day to allow her to at least be able to inhale through her trach. Once again, we know she can tolerate the cap, so going back to the PMV will not be a step backwards. I may be grasping at straws here, but I'll do whatever it takes to help Rissa move on past this stage in her life.

Dr. P said she is still hopeful that Marissa will decannulate by the end of the Summer. The catch is that it will probably be done in Denver. She wants to give Rissa plenty of time to get the swelling down and her last day here is August 13. She starts in Denver on September 1, so we will most likely be admitted to TCH and decan up there. I really don't care. We'll go to Abu Dhabi if it means she gets that tube out of her neck!

So now we play the waiting game. I've been playing for the last 3 1/2 years and I have found I am not very good at it. Oh well, I'll just keep playing, I guess.

Sucktastic!

Well friends, we will be headed to the hospital sometime Wednesday for Marissa to have a bronchoscopy to try to discover the source of the squeak. Either the steroids are not working or allergies are not the problem.

We were very optimistic, especially Friday night. At that point, she had been on the steroids for 24 hrs and we started to hear some positive changes. The squeak was still there but not as loud. Really only a slight change, but we thought she could only improve from there. Well, since then there has been zero progress. The squeak is still there.

I am trying not to be discouraged, but it is very hard. Honestly, every time I hear that damn squeak, a little piece of my heart breaks. I just feel it is time for Marissa to catch a break and get that tube out of her neck! Enough surprises and setbacks already! Enough!

I will call Dr. P's office tomorrow to find out what time we need to be at the hospital. I don't really know what to hope or pray that we find right now. She may have some granulation tissue that can be lasered out. She may have some malacia, either tracheal or laryngeal. She may be collapsing at the trach stoma. We may not find the source of the squeak.

I'll update again when we hopefully get some answers on Wednesday. Please just pray that we can find out what is causing the squeak, that it can be easily addressed, and that we can still stay on track toward decannulation this Summer/early Fall.

Thanks.

Allergies?

That's what Dr. P thinks is causing the squeak. We are hopeful this is the case.

Dr. P used the flexible scope on Marissa today and showed us that there is some redness, irritation, and swelling in her upper airway. She thought the sudden onset of the squeak pointed to the fact that Marissa is dealing with a cold or allergies, the latter being more likely with the lack of other symptoms. We have noticed that Rissa has been dealing with a slightly stuffy nose in the last week. Dr. P prescribed her a 10 day course of steroids and we are hoping and praying this will do the trick.

In related news, the scope showed that her airway is much more open around the vocal chord area and the vocal chords themselves are moving much better. So, overall, the surgery was a success! Praise God!

So the plan from here is for Rissa to be on steroids to clear up the inflammation in her airway. We are to let Dr. P know by next Tuesday if we do not hear any improvement in the squeak. If that is the case, Rissa will need to be scoped in the OR. If the squeak has improved, we will just see Dr. P in her office next Thursday and hopefully move forward with a plan to get that pesky tube out of Rissa's neck. Let's pray for that!

Thanks, friends.