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!
Thursday, September 23, 2010
Wednesday, September 22, 2010
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!
Wednesday, September 8, 2010
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 :)
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 :)
Subscribe to:
Posts (Atom)