This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Monday, March 18, 2013

What we know so far

Lydon had his procedure done as planned on Wed.  Everything went very smoothly.  His airway is much rounder and larger than it was last time.  He now has minimal narrowing which makes intubation much easier.  However, his airway was so wider than it use to be that they were actually able to do the procedure without intubating him at all!!  He did great!  They kept us in recovery for several hours as  a precaution but we were able to come home later that afternoon.  This may have been a first true outpatient procedure for us (except for once when he was an infant) but we will take it!! ;)  It was so nice to be able to come home and sleep in our own beds.  So, we received good news about his airway.  His stomach and small intestine looked very good as well.  The only significance was with his lungs.  His lower airways looked somewhat narrowed and red.  The pulmonologist was great!  We really liked him a lot.  He said that he will proceed with a full pulmonology work up including a CT scan and a stress test which will measure Lydon's endurance and exercise intolerance.  The doctors had their round table on Friday so we are just waiting to hear back from the PA. Hopefully we will get a call today with the culture results and what the treatment plan is going forward. The last couple of days have not been his best for sure.  He has complained with stomach pain and not felt like eating at all. I will update more after I hear back from the PA.

Wednesday, March 13, 2013

Oh what a day!

I really had no intentions of updating today but I find myself sitting here needing a few minutes to unwind.  There really isnt much to update.  We arrived this morning at our scheduled appointment at 9 am.  We were brought back pretty promptly and shortly thereafter saw the first of three doctors.  Three and half hours later, our appointment was complete.  The appointment was long and intensive and suprisingly somewhat informative.  Most of what we talked about was "old news" to us but there were a few ideas for future testing and medication changes that were promising.  I will elaborate more on that tomorrow.  After the procedure, we hope to have more answers.  So after our appointment marathon, we walked over to the food court and grabbed some lunch.  We then proceeded to the anesthesia clinic.  After we consented to what seemed like everything under the sun and signed away all rights including the deed to our house, not quite but close enough, we were done! We rushed home in order to get medical records documenting Lydons clotting disorder scanned and emailed back to the anesthesia clinic before 5pm.  We made it with five minutes to spare! ;) It was decided early in the appointment today that its in everyones best interest to plan on admitting Lydon tomorrow afternoon in order to give his airway the extra time he may need to recover without distress. As I was scanning and emailing the medical records, my nurse started washing the beloved "night-nights" and packing the supplies we will need for the next two days.  At this point, we decided to run grab a bite of dinner. Lydon was past going since his nap today consisted of the 40 minute ride home. So we dropped him by Granmommys, ran to the closest restaurant, ran to pick up Aidan from Mimi's, ran to Wal-Mart for some much needed bare necessities because we've been lazily sitting around lately neglecting grocery shopping. (Insert sarcastic eye roll here.) Hollie was enjoying herself with her friends and cousin and didnt want to come home tonight which means that Aidan gets to stay with Granmommy tonight and Pawpaw tomorrow.  So after getting all the  necessities of which we forgot batteries and a nightlight,  we went to pick up Lydon and drop off Aidan. And would you believe it, Aidan wasn't one bit upset about spending the night at Granmommy's and Pawpaws. (Insert double eye roll! Once we got home, I gave Lydon his meds, and got him in bed.  I packed my bag for the hospital and took my bath.  We are suppose to arrive at the hospital in the morning at 8am. I will update tomorrow afternoon or evening depending on the events of the day.  Thank you for all the prayers and kind encouraging words we received today via text and Facebook. 

Monday, March 11, 2013

Where we've been and where we're going

     Just wanted to touch base and update everyone who so faithfully follows us. Although I really dont have much "new" information.  There is a lot going on and during these times, we rely on all of your prayers and words of comfort and encouragement.  As you know, Lydon has had problems with his airway and vomiting literally since birth.  So, the day we have been waiting for could possibly be tomorrow. 
     Tomorrow morning, we will be meeting with this new team of docs to discuss Lydons history and current issues. Wednesday, this team of three doctors, an anesthesiologist and several OR nurses will take him back to the OR to scope him from top to bottom and see if  they can find the cause of Lydons airway issues and difficulties and come up with a treatment plan.  This will be the first time since infancy that Ly has been put under anesthesia at TCH. So, of course this is very nerve wracking for us. Equally unnerving is the fact that Lydon has had this procedure done before and we havent ever received anything too definitive. So, the fear of putting him under anesthesia coupled with the possibility of not getting the answers we need is overwhelming. We want our boy to be able to play without vomiting or gasping for air or becoming exhausted. We are praying and ask all of you to pray that this team will see what they need to see.  They will be a "new set of eyes" and like the good book says ..."Again, I say to you that if two of you shall agree on Earth as touching any thing that they shall ask, it shall be done for them of my Father which is in Heaven. For where two or three are gathered together in my name, there am I in the middle of them." Matthew 18:19-20
      Add to all of this the death this past week of my Pappaw and this Momma is ready for a break! Please remember in your prayers, my Dad who lost his best friend and my Mammaw who lost her companion of 63 years.  He will definitely be missed! I will do my best to update after tomorrows appointment. We were told we would literally be there all day and then be back there early Wednesday morning for the procedure.   Hollie has plans with some of her friends this week and our middle man Aidan will get to spend some time with Mimi and his favorite girl, Cousin Peyton.  Not exactly the way I had planned to spend our spring break but I guess it will all work out. For now, we will Keep Calm and Carry On! ;)