An Update We Wish We Didn't Have to Give

We are sorry for the lack of activity on the blog this past week.

Unfortunately, we heard back sooner than anticipated with some bad news regarding Gwendolyn’s sleep study and it took us a little while to digest. The Pulmonologist called to tell us that Gwen had 205 instances of “obstruction” during the course of her sleep study, with 61 of those being defined as an apnea. After conferring with our Plastic Surgeon, the Pulmonologist felt that a tracheotomy is the only solution. Basically, the Pulmonologist said that they have exhausted all the other avenues that could be a cause for this apnea based on her previous tests and surgeries. And the Plastic Surgeon noted that Gwen's jaw is now in a perfect location which should no longer be causing any issues. As a result, she said this was our last resort.

We were a little concerned that the heavy congestion we mentioned earlier Gwen's been experiencing might have been a direct result of these breathing obstructions. After all, while we don’t hover over her crib at night, we’ve been around Gwendolyn plenty when she sleeps and never felt a concern that she wasn't breathing. In fact, since her last round of jaw extenders were inserted, Gwen has never exhibited any breathing difficulties. In addition, Gwen has truly thrived since her last stay in the hospital concluded, which seems to contradict the notion that she's having breathing issues again. For instance, any oxygen percentage tests she's had since being discharged have all come back great.

When we pressed the Pulmonologist about this, she quickly dismissed it, as well as the majority of our follow-up questions. While there were several things that we didn’t agree with in the diagnosis, the one piece of common ground we reached is that we need to be sure IF Gwen’s experiencing cases of apnea that it hasn’t begun to adversely affect her. So, in the short term, the Pulmonologist ordered oxygen for Gwen to use overnight and booked a heart echo in a couple of weeks as her not breathing over the course of the night could be putting undue stress on the heart.

Since the tracheotomy is something that might never be reversed and is just one more in a series of hurdles for poor Gwen, we obviously wanted to be sure we truly have exhausted all of our other options without jeopardizing Gwen's health in the meantime. So, we started making several calls and asking others opinions. For those of you that have followed this blog in the past, you might recall our uneasiness over this particular Pulmonologist (she's the one that was adamant this fall that Gwen needed additional brain surgery to correct her breathing, which ended up not being the case). As we began the process of consulting with others, we felt that it would be in Gwen’s best interest to be cautions moving forward. As a result of a multitude of differences of opinion we’ve had, we have requested that Gwen be assigned a new Pulmonologist.

Moving forward, we are going to make sure Gwendolyn’s state of continuous congestion gets fixed first before we go for a follow-up sleep study. Again, if that has anything at all to do with the negative results, we want that issue eliminated first. So, we’re going to see our Pediatrician once again tomorrow. If she has no solution again this time, we are going to ask that she refer us to an allergist. The pollen count this spring has been off the charts and there has to be some source of this month-long congestion.

We’ve also decided that we are going to seek a second sleep study in a different practice, likely out of state. Our concern is that by making waves and advocating on behalf of our seven-month daughter, we might have become labled as “those” parents at the hospital and indirectly caused some prejudice toward Gwen… but if being “those” parents means that we are at ease with any decision moving forward on Gwen's future, then we are okay with that.

So, that’s the unfortunate update on Gwen’s sleep study. As for our family other than that, we are doing pretty well all things considered (as the photos in this blog entry show). Needless to say, this was all a little bit of a downer but we still feel like we are doing the very best by our daughter. Regardless of the ultimate outcome, we'll at least feel totally comfortable with the ultimate decision... And if after all this the recommendation is still that Gwen should be trached for her own good, then we'll be prepared to do that. However right now, we can't say that we feel like that's the case.

For those of you that are interested, we are going to post some of the girls’ six-month photos that we just got back in our mid-week blog update this coming week... But the photos here were just too cute to exclude so we had to post them first.

Hope all’s well in your world… talk to you soon!!!