Monday, November 18, 2013

October 2013... 2 1/2 years with Angel Lungs, Trip to Texas, Canceled Make A Wish Trip & Paraflu

October was a busy month for us. We traveled to Texas for her 2 1/2 year post transplant checkup. I am still amazed by the miracle provided to us. 2 1/2 years post transplant! I still worry all the time about Elizabeth's future, but I remind myself to look at how far she has come! Before transplant, I feared she would not see her 1st Birthday, and now are are quickly approaching her 4th. We are blessed with each and every day we have with her. FOREVER grateful for an amazing God, the Ott Family, medical professionals, and the unwavering prayers/support from all of you!

Lungs - 
 We meet with transplant and everything looks good with her lungs at this point. They did not do a biopsy this time, so again we still have no definite idea on rejection other than she is showing no symptoms, and her lungs look healthy. So unless she shows a decline, they don't plan to biopsy.

Growth/Development -
The transplant team is happy with her current growth and development. We know she is still small for a 3 1/2 year only weighing about 28 lbs. But as long as she is growing and making progress, everyone is happy. Developmentally she is doing really well, talking alot more, wanting to be more mobile and walking when you hold her hands or she holds on to furniture to get around. We are hoping to start working with a walker soon so that she can become more independent.

Heart - 
We did meet a new Cardiologist during this trip, one who has experience and conducts research in aortic root dilation patients. So we now have a better understanding of Elizabeth's current heart issues. We have known since her birth that she has aortic insufficiency, her aortic root is dilated, and she has a bicuspid valve. Once she was diagnosed with FLNA mutation, we learned that all of these issues, along with her lung problems, low muscle tone, and the brain changes are part of this condition.  The cardiologist explained things more in depth and we have a better understanding of what the "plan" is for her future. Basically with the aortic root dilation Elizabeth's is currently measuring at 2.5 ( 2 1/2 times larger than what it should be) when/if it gets to 5 she will need to have surgery to have her aortic root replaced. They increased her heart medication to hopefully help slow the dilation down. She will have a cardiac MRI during our next trip in April, to compare to her last one in December 2012 to get a rate of dilation so we have a better idea of how fast this is progressing. We are hopefully that it is a slow progression and she has time to grow and get stronger before she needs this type of surgery, or be lucky enough to not need it. So overall, not the best news ever to have to think about. But we are SO thankful to have a new cardiologist who realizes the importance of monitoring her closely and ensuring that we are doing all we can for the best outcome with her cardiac issues. I have been so concerned about the lack of follow up and concern with our last cardiologist, I left this appt feeling so much better about her care now.

Her airway issues are still a bit concerning but we have decided, and transplant agrees with us that as long as she is showing no problems we will hold out on any surgical interventions for now. The risks just seem to great for a surgery that may not fix her airway. So for now, she will continue to use supplemental oxygen during sleep and will most likely always have a harder time during illness due to her airway issues.

Which brings me to our cancelled Make A Wish trip and the paraflu. We were set to fly out for Disney World on Sun Oct 20th. On Saturday around midnight Elizabeth woke up crying, her heart rate was elevated, and she was running a 101-102 temp, her oxygen levels her a little lower than normal. We called our wish coordinator and cancelled at 2am before our scheduled flight at 8. Our coordinator was so sweet, and understanding. We are hoping to reschedule to trip for spring once the baby gets here. Over the next few days Elizabeth's oxygen levels were lower and she was requiring oxygen during the day and night time at an increased rate. She had fevers up to 102, just felt and looked awful. We had a flu/rsv and viral panel done, which showed she had Rhinovirus (common cold) and Paraflu 3. Since they were viral there isnt really any treatment other than just comfort care, tylenol, extra oxygen and fluids. She was started on antibiotics in hopes of keeping it from turning into pneuomia. She was sick for about 3 weeks, Matt and I were pretty scared during this time, we went to the Pediatricians office 3 times and the Pulmonoligist once. She came close to having to have a bronchoscoy to check for any issues, since it was taking her so long to recover from the viruses.  Thankfully she was able to stay home and not have to be admitted to hospital. She went back to school last week, and her oxygen levels are back to normal now. We pray that this virus hasn't caused any damage to her angel lungs! Germs and illness are always such a big concern for us.

Sick on Halloween - No trick or treating but she still dressed up :)
She is ADDICTED to the Ipad now

We want her to have normalcy and be able to go to school, play with other kids and enjoy this gift of life she has been given. But there is a very thin line that we have to walk with her. Every illness she has could damage her lungs, and lead to rejection. Some people don't realize how serious any illness is for her, and we try to educate everyone around us about her. So please, know that if I question you, or tend to tell you about it alot, its only to protect Elizabeth.  We explained all of this again to her teachers at school and they have been doing a good job with making sure her hands are cleaned and we are notified if any of the other kids are sick. And our family/friends are always so great with staying away or letting us know if they have been sick. We appreciate everyone for all you do to help us make sure that Elizabeth stays as healthy as possible!

We hope all of you are staying healthy and can enjoy the upcoming holidays with your families. We hope to enjoy the holidays at home celebrating our Miracle Girl and soon the arrival of her little sister :)