Wednesday, September 14, 2016

Post surgery update

Ella's cath surgery went well. It was very hard on her emotionally the night before and the morning of, but she did amazing! The surgery did not reveal any problems and things look beautiful inside! While that is great news it also means we don't have a clear answer as to why Ella is having the symptoms that she is having. At this time we will continue as we have been, just knowing that Ella has more limits activity wise then we were expecting, but, that we may be able to improve that some if we work hard on helping her build endurance. Once she came out of surgery she didn't feel very good and had to keep her leg straight for four hours and her throat hurt pretty bad from the ventilator, they had to pull her IV, and once it was time for her to start sitting up she threw up. After that they wanted to keep us for a little while longer just to make sure she was okay before letting us go back to the Ronald McDonald House. She had to have a special pressure bandage that we had to leave on for 24 hours and we just took that off once we got home and the sight looks really good. She seems to be feeling pretty good, she hasn't complained about too much pain at all, just minor and hasn't needed any additional pain meds. I've even had to remind her not to run or jump a few times! As always the staff at Dallas Childrens were incredible, the nurses that cared for her pre and post op were so nice! It made the whole day much easier for all of us! 

Daddy made her an indoor tent at the RMH!
Pre cath snuggles, smiles, and "see Ya laters" (never gets easier... not pictured all the tears)!

Post cath recovery and discharge!

Recovery snuggles at the RMH with the best daddy ever! 
Please continue to pray for her healing process and for no sickness or infection! Also please pray for her mind as she processes what she went through, so far she is verbilizing well but is experiencing some after anxiety. Nothing too severe, just some things here and there trigger it for her and so prayer for us to be able to have wisdom to help her through those emotions are so appriciated! 

We made it safely home and I'm hoping   we all get some MUCH NEEDED rest tonight and that Ella has no nightmares.

Last but certainly not least, I want to wish my sweet, amazing, strong, kind, angel, of a husband a happy 9th wedding anniversary! Living life along side of you has taught me so many things. Having you for a husband, team mate, and best friend, and watching you be a father are truly some of my greatest blessings. I love you forever and always, thanks for choosing me! 

Thursday, September 8, 2016

Long time no update!

No we haven't fallen off the face of the earth, we've just had our plate full and blogging fell by the wayside. 
Over the last year so so so much has happened and Ella is growing up crazy fast! Just a quick recap of some of the events (in no particular order)!

-Ella had another dance recital
-She lost her first two teeth
-She started first grade
-She started drama class
-She is 47 inches tall and weighs 47 pounds
-She loves making her own books and dressing up as different characters
-She is learning to swim in our new pool
-She is learning to ride her bike that she got for Christmas
-She adores her next door "neighbor friends"
-She turned 6... yes 6!
-She got glasses 
-She had her first dentist appointment
-She hosted a fun pool party and ran her own lemonade stand

She has come so far and this year has been full!

Heart health update.

Overall Ella is doing well, we see her cardiologist at least every 6 months and never get over the miracle of a good report! She has had a few things that have been a small concern for quite some time now. She still seems to lack endurance and energy that even with half of a heart they expect her to have and she is still having blue spells from time to time with activity. We've discussed these issues with her cardiologist multiple times and since her echocardiograms and EKGs have looked good and the symptoms haven't seemed too severe we have just kept an eye on her. We recently discovered that she is dealing with a high heart rate (tachycardia) with minimal activity and that seems to be causing her lack of endurance. For example we hooked her up to her pulse ox machine and let her play the wii. She ran/jogged in place for about 1 minute and her heart rate topped out at 191 and her oxygen was 84. You can imagine why she doesn't feel up to more activity and when she pushes herself to keep up with other kids she ends up losing her color and throwing up. We just finished doing a 24 hour holter monitor on her at home just to see how she does through a typical day (of course when I monitored her along side the holter her heart rate wasn't as high, but I guess that's how it usually goes!) We haven't heard those results yet. Based on her symptoms and the fact that we have been dealing with this for over a year and it isn't getting any better we, with her cardiologist, have made the very hard decision to send her into her 9th surgery. What it comes down to is, as good as the tests look on the outside, there are just some things that can't be seen unless they get inside. We are scared and struggling with sending her into surgery again. It's been 3 years since her last surgery and now that she is older we are sad that she will likely remember this surgery so well. The good news is that this will be a cath surgery NOT open heart! Much less risk and recovery time is minimal. That being said it is still surgery and she will still have to be put on a ventilator when she goes under and there are always risks involved. I'm not going to pretend this is easy or that I'm emotionally ready to send her back again, but Jon and I both feel a peace that this is the next step. There are a lot of unknowns and scary possibilities with the results or the outcome of this surgery but we are putting our trust in the one who already knows what that is going to be. Ella's surgery is next week. We will go into pre op on Sept. 12th and surgery is scheduled for 7:30am Sept. 13th. We have waited to share the news of her upcoming surgery until we had told her because we knew she needed to hear it from us and not a well meaning friend asking how we were doing with the upcoming surgery. She handled the news well and is scared but oh so very brave. She is mostly looking forward to watching movies in the hospital while she recovers and is dreading the lab work and IV the most, she said "the rest I'm okay with".

Will you join us in praying for our sweet sunshine as we send her back once again? Please pray for the staff, the surgeon, the results, safety from germs while we are there, prayers for strength, prayers for Ella's anxiety... etc. We just ask that you cover us in prayer. We know that this will not be easy, but we are trusting that God is in control.