Ready for a B.R.E.A.K.

Sorry I haven't updated since Maddie's surgery, but we are still trying to bounce back from this one.  I think, fingers crossed, things are finally starting to calm down for us here, b/c it has been a doozy of a couple of weeks in the Moench house.  Not only has Maddie been recovering from surgery, but last Wednesday Maddie and I got in a little car accident courtesy of a drunk driver!  Luckily, we (and everyone else involved) walked away with no major injuries and a drivable car, all except the 'bad guy', both him and the car got hauled off each to their respective places.  This past Saturday we took a trip to the ER for Ian.  We had been upstairs trying to clean up and organize all of our holiday decorations and we were trying to fit this little Halloween tree back into the box and he pulled it out to rearrange and one of the wires popped out and stabbed him in the eye!  Very scary experience when all you can do is sit there and think that if it had hit just right he could have lost his eye sight.  Luckily it ended up just being a corneal abrasion and they sent him home with some antibiotic eye drops and as of now he seems to be fully recovered!  Then this past week, Maddie started to get sick and by Tuesday night she was breathing rapidly and complaining that her ear was hurting.  Wednesday we went to the doctor, they did a breathing treatment in office, sent us for a chest x-ray, and later that afternoon called to tell us she had pneumonia.  So now she is on antibiotics to treat that as well as antibiotic ear drops to help with the ear infection.  She too is starting to come around so I can only hope that by Christmas morning we will all be happy and healthy!!

Hanging out and playing before surgery.

 So as far as her surgery and recovery go, things have been very slow.  Surgery was successful, but also scary, we didn't know until afterwards that Maddie lost a lot of blood and ended up needing a transfusion.  I don't know why but this freaked me out, and continues to every time I think about it.  I guess my mind instantly goes to an episode of ER where they are in surgery, blood is spurting out everywhere, and they are all in a panic trying to get blood and suture her up!  And then I come back to reality, laugh at myself, and tell myself that it was nothing like that and that she was fine the whole time and never in a crisis situation, and I guess that's how I want to leave it even if that's not the case, I don't want to know!  We stayed in the hospital for 2 nights and were able to go home Sunday evening.  But even at that, she was still pretty weak once we got home. In the hospital she didn't get out of bed, nor even want to until late Sunday morning, and was not really wanting to eat anything, which if you know my kid...that is not like her at all!  I thought for sure once we got home she would immediately bounce back but that wasn't the case.  She was still very weak, did not have much of an appetite, and we had a really hard time controlling the pain.  She was very swollen and had a fat blistered lip, my poor girl looked like she had gotten into a bar fight! 

Morning after surgery, still very tired & weak.

Later that afternoon, attempting to eat chicken broth.



Sunday morning and we're finally out of bed!

 

By the afternoon, she was up and moving and ready to play.



 Once we got her moving, eating a little and going to the bathroom we were ready to go home!  And as far as I'm concerned that's when the real recovery beings, it's always good to be home resting in your own bed with your own blankets and pillows.  I think we were all three exhausted and just wanted some sleep, however that is much easier said than done.  Maddie was in more pain than I remember her being in with the last two surgeries, and of course the pain meds they gave her tasted 'yucky' and it was a struggle to get her to take them.  We ended up alternating Motrin and Tylenol around the clock for about 4-5 days.  She would just cry and tell me 'my face hurts, why did you let the doctors do this to me' and that pretty much broke my heart every time she said that.  I know she won't hate me on down the road but right now, it's my job as a parent to make sure she is taken care of.  Every time there is a surgery, as a parent you struggle with the question of "Is this the right thing to do, is this the right time?"  As with every decision we make for our little girl we tell ourselves, that "Yes, we are making the best decisions we can given the information we have been presented with by our doctors, and that this is the right thing to be doing at this moment in time."  And we are very thankful, that all these tough decisions we have made, especially this past year have paid off.  I still have a strong, brave, happy (for the most part) little girl who continues to amaze me day in and day out.  I couldn't ask for a better daughter and when I actually take the time to sit and think about all she has been through the tears start flowing and I realize just how lucky we are to have her in our lives and are so proud of every little and big thing she has accomplished in just 4 short years!  I love you Maddie more than I ever thought possible and if there is one thing I know for sure, it is that you will go far in this world, you will fight for the things you want, and you will do amazing things for yourself and others, that I am sure of!!

So now we are two weeks post op and while there is still a little swelling, I think the pain is almost gone.  Now if we can just get over this ear infection and pneumonia we will be good to go.  We continue to work on doing some stretching exercises of her jaw/mouth muscles.  Before surgery, her mouth only opened 3mm and now we are up to 15mm...this is such a great accomplishment and is just the kind of results the surgeon had wanted.  We are hopeful that with these stretching exercises over the next 6+ months that we can eventually reach our goal of getting her mouth to open around 30mm, which is the norm for most people.  And let me add, not only can Maddie open her mouth but she can take a bite, an actual bite out of something and chew it up...sounds so simple, but she could not do this before.  She literally pushed food into her mouth and I swear she just swallowed everything whole.  Another things that makes this all worthwhile is seeing the excitement on Maddie's face when she realizes she can do things she couldn't do before.  I think the first thing she did was grab Ian's finger and bite it, saying, "Look Daddy, I can fit your finger in my mouth!"  She has also gotten excited when we brush her teeth and can actually fit the whole toothbrush in her mouth..again, it's the little things in life!!



Not the most flattering picture, but you can see the difference of how far her mouth opens!



One last quick update regarding Maddie's sleep study...we are very happy to report that the jaw distraction seems to have served it's purpose and that Maddie has gone form having severe sleep apnea to mild sleep apnea!!  This makes me so happy, yes she still has sleep apnea, but she went form having 80 some episodes per hour to just 3.6...AMAZING!!  So while we are ecstatic with these results, of course the doctors want to see this number improve even more so we are left with a couple more follow up appointments and more decisions to make.  The first and least intrusive option is to attempt the CPAP machine again.  I will call in the new year to see about getting Maddie re-fitted (want to make sure she is fully recovered from surgery and all the swelling has gone down) and we'll just hope for the best.  We also follow up with Maddie's ENT mid-January and something tells me he will be taking a good look at her tonsils and seeing if those are playing a factor in her apnea.  I know he had previously mentioned that her tonsils looked 'good sized' but there was no way, due to her small mouth opening that he could even get in to remove them, but since that is no longer an issue we'll see!!