Travelling, Holidays and Upcoming Stuff

Well, we made our first trip back home a couple weeks ago!  It was so great to see everyone, and watch Grace and Chloe with their grandparents and uncle.  We had a few unexpected events, with Chloe getting a fever and ear infection on our first day in CA!  5 days later, Grace started coughing and getting a fever.  Last Friday, I ended up in the ER with Grace having a temp of 104.5 and rapid breathing!  It was pretty scary, and.  I was thankful for a close friend meeting me at the hospital to keep me company.  The doctors thought Grace had pneumonia intially and told me to plan on staying overnight!  I think I had a little bit of PTSD at that point!  Amazingly, Grace did not have pneumonia, and they sent us home with antibiotics and steroids.  Sadly, she was still sicker than she's been since she was in the hospital 2 years ago, and we spent our last days in CA just hanging out at home.  When we got home, Grace was diagnosed (by her own pediatrician) with a cold, an upper respiratory infection AND double ear infections!  Really hoping and praying this isn't how we're spending our winter!

We celebrated Christmas with my family in CA, and we'll be having a nice, quiet day with the girls on Dec. 25th.  We have (probably too many) presents to give, and I can barely wait until next Saturday to watch the girls get their Fisher Price kitchen from Gammie and Papa, and for Grace to open her 32 inch Minnie Mouse!  Chloe, I think, will be most excited about the wrapping paper :)

Since Grace's last bronchoscopy was cancelled due to RSV, it's now rescheduled for January 10th, 2011!  Since then, Grace has become part of Vanderbilt's C.A.D.E.T. clinic.  I have no idea what it stands for, but we met with her ENT dr, a GI dr, a pulmonologist and a swallow specialist about a few weeks ago.  It was a LONG appointment, answering alot of questions about Grace!  The doctors all meet and come up with a plan, and they will all be involved in her next bronchoscopy.  During that, the doctors will basically be testing for any hidden infections in her throat, lungs, GI area, etc.  That process will take about 90 minutes.  There is also some concern regarding Grace's swallowing, so she is having a Video Swallow Study (similar to what she used to have with the g-tube in) this next Wednesday at 12:45pm Central Time.  We would appreciated prayers that they find no evidence of aspiration or any other swallowing issues!

Will post an update on Wednesday!

Change of Plans

Well, we won't be having the bronchoscopy this week after all!  Grace got sick on Sunday, and then she had a red mark on her arm, so I decided to run her into the pediatrician yesterday.  Turns out the red mark was a burn-no idea how she got it!  But she sounded so congested in her chest, the doctor tested Grace for RSV, and she was positive!  Chloe most likely also has it,but only has symptoms of a cold.  RSV is basically a viral infection that can attack the respiratory system.  Grace is actually doing great and already seems to be getting better today, but we are having to reschedule the bronch :(  We're stuck at home for a few days since the girls are contagious...Chloe is very strong and healthy so she seems okay, and Grace is barely coughing at all now.  So we'll wait, and hope and pray we can manage to get to the second bronchoscopy without Grace getting sick again!

Next step

It's been a few weeks (maybe a month?) since Grace's bronchoscopy, and while she got very sick and sounded terrible after the last one, we've seen great results!  Grace is now able to run around like any normal 2 year old without getting tired!  And she can run run run for HOURS without getting tired or even wanting a nap...not exactly the result I wanted :)  So it's been pretty great to see what a big difference removing the cyst has made! 

She's been getting steroids through an inhaler to reduce the inflammation in her vocal cords.  Next will be another bronchoscopy this coming Thursday to understand what is going on with her vocal cords.  Since Grace had a cold last time, the ENT wasn't sure if they were red and swollen due to that, or allergies, or something else.  So we could definitely use prayer for Grace to stay HEALTHY this week!  The ENT will also be checking to make sure the cyst isn't growing back at all. 

Grace had a really hard time coming out of the anesthesia last time, and she was in pain to the point she needed morphine.  I'm glad I know what to expect this time, but am hoping she will not have as hard of a time with it.  Looking forward to getting some answers and a plan for her vocal cords-she's such a smart, fun, creative little girl, and I just really want for Grace to be able to express herself vocally more than she can.

The Results

Grace did really well with the bronchoscopy...except for the waking up and trying to rip her IV out ;)  The procedure took a bit longer than expected because Dr. Wootten found a cyst that he didn't expect.  The cyst was on Grace's trachea, and most likely cause by the ventilator tubes from when she was a baby, and has been growing since.  He was able to remove the cyst today and feels that we are going to see a big difference in her breathing!  Her vocal cords were very red and inflamed, but that could be due to her having a cold right now.  He prescribed a steroid that should reduce the swelling.  He thinks that we may even hear a difference in her voice now!  Dr. Wootten feels that he still doesn't have a definitive reason for her vocal cords not opening all the way, and wants to see Grace back in the OR in 3 weeks :(  He needs to make sure the cyst doesn't grow back, and to be able to look at her cords without her being sick.  He did say that her left vocal cord isn't moving as much as it should, but it's not enough for surgery at this point.  So-we're VERY happy that a major cause of the restricted airway appears ot have just been a cyst!  Once again, a doctor was surprised by what he found in Grace :)  We're not done yet, but I think we're definitely on a good track.  Next will be to get another bronchoscopy in 3 weeks, then possibly allergy testing to see if that's causing the inflammation also, and Grace may end up getting seen by a whole team of doctors that specialize in airway issues.

Grace did great, and drove a little car around the hospital before going back with the nurse...she was so fascinated by the stethoscope, she didn't even look back at us!  She's pretty dopey still, but happily watching Curious George now.  Thank you for all prayers and support this morning...will now need prayers that the cyst doesn't grow back, and that Grace IS NOT sick for the next bronchoscopy! 

Procedure Tomorrow

Grace has her bronchoscopy scheduled for tomorrow morning-the time was changed to 7:30am...which means most of you will be sleeping ;)  We have to be at the hospital by 6:00am!  We're a bit nervous, but really looking forward to it being over and getting some answers and plans.  I think the procedure will be a half hour or so-not long...the ENT had warned me that I would see Grace's level of activity start to decrease as she gets closer to turning 3 (next May).  Unfortunately, we are seeing it now-she is pretty tired mostof the time...sleeping for 12 hours at night, then getting up and laying down on the floor 20 minutes later-not normal 2 year old behavior!  Playing and running around for short periods of time is resulting in her being completely exhausted and breathing hard.  It's been pretty hard to watch the last few weeks.  We're hoping and expecting a miracle tomorrow-again, best case scenario is that the ENT finds scar tissue at the bottom of her Grace's vocal cords as the cause for the restricted airway, in which case he would then just cut the tissue, resolving the issue!  We appreciate your prayers, even if you're not awake at tht timeof the actual procedure :)  I'll update after we get home tomorrow!

Bronchoscopy Scheduled

       I want to write a quick recap of what is going on with Grace.  She recently saw an ENT doctor who found that her vocal cords were not just "needing to strengthen", as we've been told for 2 years, but are significantly damaged still.  They are not opening as much as they need to, thus resulting in a restricted airway.  The doctor believes this winter will be very important for her to stay healthy through, and that by the time Grace is 3, she will not be able to run around or ride a tricycle without stopping to catch her breath.  If this is the case, we could be looking at surgery after she's 3. However, he needs her sedated and in the OR to perform a bronchoscopy to get a more detailed look at her vocal cords, so that we can have less "ifs" and more plans on what to do.
        We've finally been able to schedule a date for the bronchoscopy for Grace!  It will be on September 23 at 1:45pm Central Time.  I wish it was sooner so that we could have some more concrete answers about her vocal cords!  Yesterday Grace saw a pulmonologist at Vanderbilt, and he actually thought her lungs were fine-totally clear even with a cold!  That was some GOOD news to hear!  He felt that ALL of her problems; frequent sore throats and colds, some wheezing, coughing, everything is stemming from her vocal cords.  So, while her vocal cords are a HUGE issue, we are so thankful that we don't have to worry about her lungs!  The fact that her lungs are in such good shape is such a testament to God's hand over Grace's body and life, as well.  She does need to put on some weight so that her lungs can grow new tissue to replace the damaged tissue that the ventilators caused (chronic lung disease).

       I am both nervous and looking forward to the bronchoscopy...this will be her third, but I don't think I will ever get used to my child be sedated and put in an OR.  As I've been processing all information over the last few weeks, I've had to deal with bitterness, resentment, anger, hurt, grief, and FEAR.  When Grace was in the NICU and hospital, I became so accustomed to seeing God work and perform miracles on her, I expected it!  When the doctors would say something was wrong, an infection, whatever, everyone would start to pray, and I KNEW, without question, that the doctors would be proven wrong.  And they always were.  Now, after some time has gone by in which we haven't had to pray for miracles, I find that I also don't expect them as easily.  I find that doubt and fear have replaced that sense of expectation that I used to live in.  And I wonder, how much does that perspective affect the outcome of what we pray for?  I WANT to believe for a miracle the way I used to,without questioning, without doubting.  I want to be able to look a doctor in the eye with confidence the way I use to, and tell him that Grace will be different than he expects or has ever seen.

     Dr. Wootten (the ENT) said that Grace would never be a professional singer....her neonatalogist said she would never be an Olympic swimmer or runner...I think "never" is a risky word to use with Grace :)