"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Tuesday, September 21, 2010

Eulogy for a Trach

It was a love-hate relationship.

When it came into our lives, almost three and a half years ago, it sounded like the ugliest, most foul word we had ever heard. Tracheostomy. T-R-A-C-H-E-O-S-T-O-M-Y.

A silicone tube that would be placed in a surgical opening in our daughter's throat. An artificial airway that would be secured in place by cloth ties constantly around her neck. A tiny little piece of medical technology that would take so much time and care that we felt as though we paid as much attention to it as we did to our daughter herself.

But we quickly realized that this little tiny piece of silicone would allow our daughter to breathe because she was not strong enough to do so on her own. It would allow her to leave the hospital, two and a half months after she was born, and come home to finally start being part of our family. It would allow her to grow and develop and get so strong. It would save her life.

This tiny, light weight little thing would become such a heavy presence in our lives. We had to learn how to care for it, keep it and the site clean, and what to do in an emergency, life and death situation. We had to recruit a small army of family and friends to learn this stuff as well. We could not go anywhere without a suction machine and emergency supplies. Heck, we couldn't even switch rooms in our house without taking along enough stuff to stock a hospital room. Having it meant Rissa did not filter the air she breathed normally, so she was much more susceptible to infection and illness. We had to be so vigilant as to make sure nothing fell into it, causing her to aspirate. We had to walk a fine line between keeping Marissa humidified enough, but not too much, causing her to be "juicy" and require suctioning all the time. We had to keep an eye on it all the time to make sure she did not accidently take it out, thus threatening her own life.

There were many times I resented the trach. I resented the fact that Marissa depended on it so much. I resented the fact that she would never be "normal" because of it. I resented the isolation it brought. I resented how people stared at my precious girl because of it. I resented the "club" we had been forced to join because of it, even though this club brought so many awesome people into our lives we would have not known without it.

In it's final days, I found myself growing sentimental about, even thankful for the trach. It changed our lives so drastically. Looking back, it made Jeremy and I stronger too. It forced us to grow up and not take life for granted. It brought to light all the trivial nonsense that seemed so important in our lives before. It made us see our daughter's inner beauty, which radiates from her like the brightest sunlight, every day.

In the end, of course, we are glad to see it go. But we are also acutely aware of how we are all better people because of it.

Thank you, Tracheostomy. You served us well.


Mr. Trach
May 9, 2007 - September 20, 2010
RIP

P.S. I did two posts at once, so make sure to scroll down to the next post to see more pictures and another video!

More Cute Trachless Pictures and a Video!

Rissa had a great night and we are home now! Her sats stayed between 95-97 while she slept and are 100% while awake. So awesome! Her stoma is now down to a very small size and hopefully will be closing all the way soon. She knows her trach is gone but she really hasn't made a big deal about it. Just life as usual for our little sunshine!

Dr. P and Rissa, just before the bronch/decan. She is the wonderful woman who has taken such great care of our Rissa Roo.





The panda in a nurse uniform that the hospital gave Rissa. She named it "Doctor".

Sleepy girl at the end of her big day.


Dr. P again, this morning after Marissa passed all the tests and was given the green light!


video

Thanks for all your love and support. We could not have done this without all of you and we are so lucky to have such great people along for the journey. Keep watching, this girl is going places!

Monday, September 20, 2010

The Newest Member of the Naked Neck Club!!!

Waiting for it all to begin, wearing her "got a trach?" shirt. Now we need one that says "got a trach?" on the front and "neither do I!" on the back!


"See Mom, Elmo doesn't have a trach, and pretty soon, I won't either!"


NAKED NECK!



The most gorgeous tan line I've ever seen!


video

Friday, September 17, 2010

Someone Upstairs is Smiling on My Girl

Well Peeps, here's the scoop:

After a long, emotionally draining week of waiting for phone calls, not getting phone calls, having to call the Dr's office myself, going back and forth, and thinking we were going nowhere fast, we have an answer.

First, I found out that the soonest the sleep lab in Denver could get Marissa in for a study is October 24th. Yep. October 24th. Pointless if we want to get her trach out before cold and flu season hits.

So I called Dr. P's office and requested a phone call directly from her to talk about a solution to this problem. Ten minutes later, she called me back. She told me that, obviously, that date would not work for us and she had been looking back over the sleep study report from August 27th. She said that she only had one episode of obstructive apnea, which lasted less than 10 seconds, and her sats only dipped below the 90's one time, for less than 5 seconds. She did have "a few" episodes of central apnea, but that can not be helped by having a trach. So, she told me that, after careful consideration, she feels comfortable decannulating Marissa.

INCREDIBLE!!!! WOO HOO!!!

This coming Monday, September 20th, we will go up to Denver and Marissa will go into the OR to have a bronchoscopy at 11:30 am. If everything looks good, Dr. P will pull her trach. For good. No more silicone tube in my daughter's throat. No more trach ties around her precious neck.

I am still a little gun shy, so I am going to reserve my full-blown Happy Dance for after I see her without a trach. But, this is the best news we have had all Summer, and we are celebrating this step in the right direction.

Thank you friends and family for all of your prayers last week, and thanks in advance for your prayers on Monday. I love you all! I will be updating as soon as I can, hopefully with some naked neck pictures!

I'm off to have a fabulous weekend, and I hope you all are too!

***ETA***
Please say some prayers for our friend Faith and her Mommy & Daddy. She is struggling after having surgery last month to remove her trach. The sad truth is airway kiddos are always one step away from disaster, trach or no trach, and it is just heartbreaking. Please pray that a workable solution comes soon from her team, so she can get back on the road to recovery, back on the road to being Faith again. Thanks.

Friday, September 10, 2010

Totally Aggravated

Well, the appointment today did not go as we had hoped, to say the least.


We got there and Dr. P proceeded to tell us that the sleep study results came back saying Marissa had a few episodes of both obstructive and central sleep apnea. She said based on these results, she would be on the fence about decannulating Rissa. Then she told us that, in about the last six months, she has questioned the results from this particular sleep lab and found them to be not as reliable as they should be. She said there have been several cases where the sleep lab in Colorado Springs said the kids had sleep apnea and then a repeat study done in Denver came back saying they did not, or it was not as bad as the first study said. So, she wants us to do another sleep study, this time at her new hospital in Denver.

Really????

AAAAAAGGGGGHHHHH!!!

I am so frustrated because the study we did two weeks ago was all for nothing. Nothing! I hate the fact that we have to put Marissa through all that again. For anyone who knows anything about sleep studies, I am sure you understand. It is not a comfortable thing for an adult to go through. But for a kid, especially one like Marissa who has very high anxiety about doctors and people poking, prodding, and sticking things to and in her, it is terrifying! I don't want to have to put my baby through all that again. She is getting to the age where she is going to start remembering all these things we are doing to her. I just hope she doesn't start to develop some serious trust issues. I feel so bad for her.

I am also a little perturbed at Dr. P for ordering a sleep study and allowing us to have it done at a lab she does not trust. If she would have just told us to have it done in Denver in the first place, I am confident we would have a concrete answer and Rissa would probably be decannulated by now. I know she has had her hands full with the move of her home and practice from Colorado Springs to Denver, working out all the kinks, but still. I just wish I would have known she did not have confidence in this sleep lab. You can bet I would have not scheduled it down here and would have had it done in Denver instead.

So, we will do this new sleep study in Denver and, if the results come back to where Dr. P feels good about decannulating Rissa, she will have us come back to Denver for a bronchoscopy and decan. Dr. P did say that she does mostly feel Marissa is ready, she just wants to do everything possible to make sure. Because re-traching her would be so traumatizing, for Rissa and us. I can respect that and I am glad she is being so thorough.

If the new results come back negative, Rissa will keep the trach until at least next Spring. Sigh...

I am so frustrated because of the timing of all this. Jeremy was on vacation all this week. That is why today's appointment worked well for us. Starting on Monday, I am going to be watching my friend's little boy during the weekdays. Now, I am going to have to ask my friend to find other arrangements for her son for the new sleep study and the bronch/decan (if that happens at all). I did everything in my power to keep that from happening. I hate having to do that to my friend. Also, Jeremy will have to take more time off of work. Blech.

I know that this is all according to God's plan, and His timing is perfect. But, if He would just follow my plans for once, things would go a lot smoother!

I am so tired of jumping through hoops. Especially jumping through ones we have already had the *pleasure* of jumping through before.

I guess those hoops were just not fiery enough.

Wednesday, September 8, 2010

Staycation!

We have been having a wonderful time the last several days being on "staycation". Jeremy's mom, Janice, flew into town Saturday evening and we have been thoroughly enjoying her time with us. Marissa totally loves her Grandma!

We have been hanging around, not doing much of anything. Monday, I didn't even get out of my pajamas, and it was glorious! It has been so great not to worry about going here and there, but instead, just concentrating on enjoying each other's company and relaxing.

This evening we met up with my sister, Michelle, and her fiance, Nate, at our favorite chinese restaurant and had a really nice dinner. Tomorrow, we will be going to Red Lobster with friends and family to celebrate my birthday. Then Friday morning we will head to Denver for Marissa's appointment with Dr. P to go over her sleep study results. We are very optimistic!

Here are a few pictures from the last few days.

Marissa trying on Grandma's earrings


Marissa & Daddy cheesin' it up


Grandma taught Marissa how to put her hand underneath her chin and say "I'm thinking"


Awwwwww.....


Gettin' some Mama Love
I'll update again after Rissa's doctor appointment. Thanks for checking in!