Tuesday, January 14, 2014

Blog, Blog, Blog….

I keep telling myself that I need to, sohere I sit on a Monday night gathering all the information that I want to share with you.

Great things have been happening in 2014 so far, we've been getting good news and we are only13 days in. 

Mylah has been off of her vent for a month! Yes, one full month. She's been sleeping off the vent just fine and thankfully we haven't had any issues. She'd been doing so well on her weans that we just felt she was ready to be off fully. 

She went for her follow up appointment with her cardiologist on the 3rd and her next appointment is…………….. Jan 9, 2015!!!!!! I knew the appointment would go great because her last one was positive, I didn't expect a full year for the next follow up visit.  When I got the text (Juwan and my sister took her), I couldn't do anything but cry. Tears of joy, certainly, but so many memories played back in my mind at that moment, as I sat at my desk I went back in time.  I recounted conversations but what I heard was so vivid.  

"There's no need for heart surgery because it won't make things better" 

But the truth is it made everything better. Heart surgery was a hard thing to decide on, especially when the decision we made, had to be changed; but it was for the BETTER.   Those days in the hospital, eventually got us to better days, better nights, better holidays, better birthdays… It made everything BETTER. 

Had we allowed the physicians to make the choice for us, who knows if Mylah would be here right now.  

This past Thursday, we went to our quarterly vent clinic appointment.  I was kind of skeptical about this appointment only because one thing was likely to have a domino effect.  The team was surprised that she was off the vent fully (we tend to do things on our own). So the vent is no more! She is off completely!  When we follow up with the Ear, Nose and Throat specialist (for her trach) they will evaluate her for a speaking valve. The valve is a one way valve, so Miss Mylah must learn to breathe out her nose/mouth. This speaking valve will allow her to make noises and we will be able to hear her voice much like we used to when she was on the ventilator.   If she does well with that the next step is to cap her trach. Once she has worn the cap during all waking hours and the doctors are satisfied with her progress, she will have another bronchoscopy to assess her airway, which is the last step before they take it out! Possibly by May/June she may be trach free. I won't get ahead of myself, but it was great news to hear of the possibility of being trach free!!  

Feelings of fear and joy were running through my mind at the same time. In addition to all of this, we have started to wean Mylah from her diuretics and in late Feb she may be on only 1-2 medications.   

I left the appointment with a headache. As I drove us back home, my mind raced on the things that needed to happen in my life in order to prepare our family for these possible changes and the affects it may have on our everyday life.  As we rode down the highway, I went back to all the memories I had of our visits to U of M which lead up to our 89 day stay in the Summer of 2012.   That highway holds so many of the talks I had with myself, the many thoughts that pierced my mind along the way, and the pavement caught the many tears of joy and uncertainty that flew out my window along the way.  That road is also symbolic of our journey.   When we first started taking the 30 minute ride, each trip felt as if it got longer each time. On days when we didn't get the news we hoped for, the trip seemed like an eternity.   Home seemed so far away sometimes. Now, it feels like the ride is as quick as the blink of an eye. The journey has gotten much easier since we first started.  I know it's not over, but there were times when  I thought the hard days were here to stay.

The recent appointments just confirmed that hard times don't last always. I'm so happy for where we are right now.  There are some things that we struggle with but they aren't things that can't be solved with a little work.  Now my concentration is on what will we do if she is decanulated this year? (trach removed). That means possibly school for Mylah (if she qualifies), I find myself just going through the motions in my head; School???? for a child that was deemed unworthy..WOW…

There are no words to express my true innermost feelings. I am happy and thankful, but there are so many more feelings that I can't describe. I have to remind myself to just take it one day at a time, one thing at a time.

It's a complicated when you have to deprogram yourself and allow new feelings to enter. I have to allow myself to feel ok with losing the ventilator; what was once a life saving device and security blanket is no longer needed. It has provided Mylah with what she needed at the time and it helped her grow and get stronger. Ironically, I am kind of sad to bid it farewell. The day the ventilator is actually removed from our home, will be another significant date added to our journey. I remember being told that Mylah would probably need the support of the vent for the rest of her life. As much as I knew and believed that there would come a time when she wouldn't need it, I relied on it as well. It was my reassurance that she was getting the proper number of breaths her little body needed. As she was weaned, we depended on the pulse oximeter to let us know if she was having a problem (She never did).

Then we started to allow her to sleep like a normal baby. With no machines & no monitors but my nerves were on edge at all times. Sometimes I would enter her room and she would just be too still for my comfort. I would slightly shake her to get the movement that would ease my mind. She would look up at me like I was nuts and slowly drift back off to sleep.   Honestly, I still do this "check" on occasion, but I've had to try and talk myself out of thinking the worse and just trusting that she is fine.

Right before Christmas, I made the decision that Mylah deserved to be as normal as possible. She no longer needed to be watched 24/7 so there was no need to keep her in our living room. We made the decision to move her back to her actual room; the room I designed for her before I even knew her, the room the holds her name on the wall, the room she slept in before she left for her heart surgery. Her first night in her room she slept like a baby who missed that room.  

I know that GOD has been the writer, producer, and director of all that has happened in our life. There is no other way to explain the things that I've witnessed in the past 2 years. It is because of GOD that my daughter is almost 2 months away from turning 2! It is because of HIM that my daughter has been able to maintain her own breathing for over a month. With each accomplishment, doctors and nurses are so stunned and shocked by her progress, all I can do is say "thank you Lord, you've been good to us" and it's because HE has.