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Seems like with Mary Elizabeth’s condition, we experience quite the rollercoaster ride. And though she’s come so very far… we know it’s been quite the journey!!! Three steps ahead, Two steps back and so forth.

By far, the trach removal was one of our biggest highlights… so of course, you had to imagine that there was a chance it wouldn’t be completely smooth sailing from there on out right? We were hopeful… but nonethless we’ve hit a challenge. You see, ME’s breathing has been great since her trach was removed. Her trach hole was stitched closed and she did well with that too. Oxygen levels are and STILL remain well. For that reason, we are very blessed and relieved. However, at night – her breathing has not been how it should be. It seems as though her body still wants to breathe through her trach hole- you know, the one she doesn’t have. THAT would be the problem.
(I mean it’s great that she has good oxygen levels but she’s just working extra hard to have it!).

For 5 1/2 years Mary Elizabeth was breathing through this hole in her neck and her body just hasn’t adjusted correctly to that when she’s in a deep deep sleep. Her neck will “suck in” so to speak and her heart rate is a little elevated instead of “at rest” while sleeping as it should be. She is completely exhausted at this point. It has gotten worse because the past week she has been congested, so between the two – it just hasn’t been easy on her.

ME hasn’t napped since she was 2 years old. She’s always a ball of energy, the one that takes forever to fall asleep at night- a real night owl. This same little girl has been falling asleep at the dinner table. So yea, it’s a concern. And let’s not forget- mom and dad become exhausted when their daughter is. So… We contacted her team of doctors in NYC and we spoke with other moms online and did our own research.

ME needs a little help getting adjusted, and we have faith that it will all work out just fine, as she doesn’t even do this all night long, only a portion of the night. She will have a sleep study done soon. We are going for a consult in NYC on Thursday, February 24th to discuss and arrange it. While we don’t know truly what the outcome will be, other parents online that had similar stories had their children end up on a CPAP machine for a while and eventually got weened off of it. It’s a machine that is often used for sleep apnea patients but in this case it will retrain the body to breath through the correct path/passages.

So anyway, that’s that… we will be updating on when the sleep study is and then the results of the sleep study as we get them. In the meantime, as always- keep her in your prayers 🙂

It is a dream come true that Mary Elizabeth had her trach removed, but now it’s feeling all the more real with her trach hole closed! We are free of the suction, she can hang out with family that doesn’t know trach care, she can take a bath with a ton of water in it and lay down because… SHE HAS NO HOLE IN HER NECK! Woohooo.

Mary Elizabeth had her trach hole stitched closed on January 24th and was due to have the stitches removed on February 1st, however due to the horrible winter we are having here in NY, there was no way we could get down to our appt in NYC. We talked it over via email with her doctors and they said that it would be fine for her to have it done by the pediatrician. She had her stitches removed on Friday, February 4th.

I have to say her neck looks fabulous considering. She has a little scar there of course but in time that will heal nicely.

Saturday when she took a bath, she was a little reserved and nervous about being submerged in water, so we allowed her to take it slowly but told her it was up to her what she wanted to do.

Well today Sunday, she was laying in the water for a while and even put her head a little under and stuff. She’s loving it and being quite the little fishy. She can’t wait to go in a pool, and neither can we. We’ve all waited 5 1/2 years for it. So we’re gonna try and plan something for her, even if it is a trip to an indoor local pool – since waiting til the summer seems much too long!

Here are a couple pics of ME in action in the tub!

So today went a little different than anticipated…. but it still went well.

Mary Elizabeth was sick a week or two ago. That ended and then one day out of no where she threw up like 5 days after feeling better. She seemed and felt fine… so I thought maybe a super-fast stomach bug or something. Who knows.

Then this morning, the day she was due to go in the OR she gets up at 4:45am and throws up. Oh Lord I thought- we are not going to make it down there. But I realize it’s not throw up- it’s some brown old-ish blood and saliva mixed. That’s when the bell rang. I thought back to a week prior when I noticed some brown spots on her pillow case. This happens sometimes when the tiny vesicles under her tongue start growing again… meaning she’ll need lasering. (If you don’t remember her LM can cause these tiny vesicles or “bubbles” to grow in her mouth area from time to time, lasering does the trick and sometimes can last year(s) or sometimes less – it’s random). Well while I knew she’d need lasering soon, I realized she must be swallowing some of that blood and it sitting in her stomach makes her nauseous and thus she is prone to throwing up. Because in addition to the things mentioned, I also noticed a bit of brown discharge from her trach hole, so it was definitely getting back in her throat.

We left as planned, but I called her Dr. on the way down. (Dr. Waner’s surgical assistant Dr. O did the procedure this time). She agreed on continuing as planned and said she’d do some lasering while she was in there. She’d also scope her to be sure it was only in the front and not in the back of her tongue or in her airway. If it were, she’d wait to close the trach hole.

Well we got to the hospital late due to an accident on the highway we took down and then other rush hour traffic. That put us behind as they had to switch cases and put us in later. And the surgery ended up being a bit more involved. You see, we were just supposed to be there to get stitches and some baby teeth removed (we went to the dentist and she needed some of the teeth extracted so he set up to go into the OR and do that while she was under). Instead, we had that done, plus a scope of her airway and back of her throat and then lasering to the floor of mouth, inner lip area and base of tongue. So the surgery was a few hours instead of much, much less.

When I saw her in the recovery room, as always she was sleepy and slept long!!! She never wants to wake up, but I woke her up as I usually do. She seemed to do well. But it took a while to get her motivated to even leave! So we were there for a while.

Of course, the night wasn’t without hassle. They parking garage guys messed things up and that took a while, traffic on the way home was less than pleasant, and the pharmacy we went to (not our usual one since that was closed) took forever and then messed up the insurance stuff. So after leaving at 6:30am in the morning… we didn’t end up home until 8pm!!! We’re exhausted! Although…. you could only tell that Mommy was… because ME played some pretty active video games with daddy at home for a little bit before bed!

So as you can see- she really did well. The lasering went fine and she is used to having that done, doesn’t really call for any recuperation. She isn’t bothered by the teeth missing (they were pretty much half gone anyway) and she’s excited because her dentist actually called the tooth fairy to tell her he has the teeth and she should leave something under ME’s pillow tonight! Exciting!!! And she is very happy that her trach hole is closed.

She is now asleep and we are watching her oxygen levels which remain good! Thank the Lord!

She goes back in about a week to have the stitches removed. And then we’ll have a pretty clear neck!! YAY!! Thanks everyone for the prayers 🙂

We had a great Christmas, and hope all of you did as well. The kids got lots of great presents from Santa, and our loved ones. And then we moved onto New Years.

Reflecting back on 2010… we saw some ups & downs- like any year. But, it’s the blessings that we were counting. We’ve gotten closer to some friends, made some new ones, connected with LM families, had some great times & fun with the family and best of all, Mary Elizabeth got her trach removed after 5 1/2 years. You can’t beat that! We thank God for every day we’ve spent together as a family and we are looking forward to seeing what 2011 brings us.

With that, we’ve already seen that Mary Elizabeth herself is going to have some new experiences. One in which she just experienced – riding the bus. Who would have thought that riding the bus was that big of a deal. But back in September when it was her first day of school and she eagerly awaited the bus, it was then we had to let her down because there was no nurse on that bus (as there should have been). Mommy has been fighting with the district to no avail. They simply could not find a nurse to ride the bus with her all this time. So after the trach removal we scheduled a meeting because obviously she no longer needed a nurse. That meeting happened this past week and finally she RODE THE BUS! Seems like such a small thing but it meant the world to her so we were soooo happy for her!

And we all know what will eventually be coming as for new experiences…. SWIMMING!!! Now that she no longer has a trach, we can take her swimming – for real! The hole that was left over from her trach being in place has been closing but there is still a very small hole that remains. It hasn’t really changed much recently, so the Dr. has scheduled her to come in on January 24th into the OR and stitch it closed. So swimming is definitely in her future. We’re hoping to arrange something where she can go in an indoor pool so she doesn’t have to wait til the summer. Of course we’ll take lots of pictures when it actually happens.

The rest of us are doing well. Drew is getting bigger by second it seems and him and Mary Elizabeth have lots of fun together playing…. when they aren’t going through some sibling rivalry! oye! haha… but really how can you just not love these two:

Anyway, a belated Happy New Year to you all… we’ll be checking in soon! 🙂