Sunday, August 30, 2009
Thursday, August 27, 2009
Here is Mya's personal pharmacy...Surprisingly, my flowers are looking great! We've had cool enough weather that we came home to somewhat of a nice looking yard! My first harvest of my DELICIOUS cherry tomatoes! I sure wish Mya could enjoy them with me! Hopefully she'll be able to next week!
Tuesday, August 25, 2009
Usually after surgery they wait 2 weeks to take stitches out. Mya's incision has healed so nicely, we've been a little concerned that they haven't taken them out yet, since it seems to have healed over. It's been only 10 days so they haven't wanted to take them out. Originally she had dissolving stitches in her incision and they use a glue to close the skin. Unfortunately, since they had to open her 3x, a slight infection was forming so they had to use external stitches with her third closure. A new surgeon "fellow" (surgeon in training) did the stitches, and the pattern was not the "norm," so our nurse had her come help take them out today. Keep in mind, patients are knocked out when in surgery, and I'm pretty sure gentile isn't a word used in the operating room. Mya about went through the roof when she started to take them out, it obviously caused her a LOT of pain. Even though she doesn't have all of her sounds, it was very clear that it hurt. Poor kid is bleeding from 4 different areas because they were so buried, not to mention it got blood all over her little shirt and blanket. LAME! She didn't have much sympathy for little Mya as she yanked them out (I was cringing all over) However, she did say, "remind me not to do this type of stitch again!"
Thank God that they usually work on kids under anesthesia!
The nurse just came in and said we are no longer in isolation, her tests came back negative. Rock on! At least we got a single room out of the deal & now we have a much higher chance of going home tomorrow. Hooray! Isolation was more work for the nursing staff than for us, they had to put masks & gowns on prior to coming into the room so they wouldn't spread her possible infection to other patients if she had one. Crazy. Going home seems a fairy tale right now, a dream that may just come true, we'll see!
Monday, August 24, 2009
Saturday, August 22, 2009
Rob was so great to spell me off last night, I went home and got to enjoy 11 straight hours of sleep without any disruptions... wonderful. I ran a few errands and picked up a puzzle for Mya, it seems to be a hit! She also got a birthday gift in the mail that we've been waiting to let her open, Thanks to Benjy & Erin, it was a fun little thing to do today, she likes her funny little shaking pig!
Today we have to change her tube, just to get practice. Big yuck. The only good part is that we can put her medicine down the tube, so we don't have to fight her to get it in her mouth. However, if it means getting out of here, we'll do it!
Friday, August 21, 2009
Thursday, August 20, 2009
Wednesday, August 19, 2009
Tuesday, August 18, 2009
Monday, August 17, 2009
This morning Mya had a great xray. She has one every day around 4:00am that they wheel into our room. Her lungs are beginning to clear up a lot. Great news. It also seemed that the left side of her heart looked smaller too; it'll be confirmed today with her test at around 1:00pm. That would be the best news since that was the entire objective of our surgeries.
As for getting out of here, several people have been asking an approximate timeline at this point. We asked our ICU doctor and he thinks that we could be out of ICU possibly by Friday and then out of the main floor a week after. She is on really high levels of medication that she'll have to be weaned from, slowly. Additionally she hasn't been eating much at all. She'll have to be eating solid foods again; baby steps. She hasn't even been able to speak at this point! We need that tube out first! Please pray for her test and that everything would be as expected- for once in our experience!
Sunday, August 16, 2009
Saturday, August 15, 2009
Friday, August 14, 2009
- bullet point on this screen, the procedure is VERY complicated. If it is too small/difficult to fix when they get into her heart, they're are several other options for what they can do and how there are other fixes. However, we are convinced that this is the last time that they have to go into our little girl's chest!!! We even told them all that as we kissed her goodbye.
Thank you for your continued prayer!
Thursday, August 13, 2009
Mya is set to go to surgery #2 tomorrow. We're not sure of the exact timing yet, but probably around 10ish. They're assuming she has a coronary osteoplasty, option 1 from my previous posting, we're praying that is the case! Please keep her & the surgery team in your prayers, we'll post updates as we know them tomorrow. Until then, we're reveling in our time together; her comfort and her sweet level of serenity are wonderful. It's been an amazing couple of days for our little family, refreshing our energy and excitement for her getting out of here! She's going to be back to normal- even better then normal soon!
For those of you following our friend Noelle, she's doing great, her breathing tube is out and she's coming off the sedation as of this afternoon. Huge answers to prayer! http://hiltysprouts.blogspot.com/
Wednesday, August 12, 2009
Tuesday, August 11, 2009
Monday, August 10, 2009
Yesterday Rob was online going through some family blogs and he came across a friend of ours, Joel Hilty-Jones, who Rob went to High School with. We both know his family really well, I took piano lessons from his Mom and Rob played basketball with both Joel and his brother, Beau. Anyway, Rob was reading his blog and found out that they are going to be here in Seattle at Children's Hospital TODAY to possibly get a valve replacement for their little first grade daughter! So crazy! We have a high chance of being neighbors in the ICU, pending their exact surgery timing. Not a place I'd generally like to catch up with old friends, but it'll be nice to give each other a little emotional support and prayer. Please pray for their family, the stress of cardiac surgery is more than I would wish on any family. If you'd like to read their story, go to http://hiltysprouts.blogspot.com/
Thank you all for your love and support for our sweet little girl. It's really helping us get through this difficult time. We're so blessed to have such amazing families, co-workers & friends you've all helped us! We love you!
Sunday, August 09, 2009
We want to thank you for you many prayers & well wishes! We know they've been helping; I am so thankful to be where we are, even if she's still not awake. Amber & Rick- thank you so much for coordinating the Dinners Ready meals for us, they'll come in so handy! A huge thank you to those of you who contributed. Jen & Creekside Moms the bag of food & snacks has continued to be really great- thank you! Lani and Mia- we love the little book and treats; we've already read it to Mya a few times! We have been constantly humbled by such generosity from everyone around us.
Saturday, August 08, 2009
Friday, August 07, 2009
Thursday, August 06, 2009
Wednesday, August 05, 2009
Mya two nights ago...what's not to love about this little sweetie???
The doctors and surgeons had their "rounds" this morning and we were glad to be in on their conversation. Mya's case has stumped them all (probably 10 nurses, sugeons and doctors- the top people of the industry)... nothing they've ever experienced previously. At this point they're not concerned with her heart, but they are worried about the trauma to her brain, both current and future. They discussed all the pros and cons of different senarios- it was great to hear the debate. They were all speaking with loads of expeirence and from different perspectives to what they thought were the top options for Mya. At this point, they're definately planning to warm her blood back up tomorrow, there is a 48hr protocall to keep it cool so that it doens't negatively affect the brain. Beyond that, they are currently considering 2 options to go ahead with:
Option 1. To get her off the ECMO machine asap (possibly today), warm her blood up and try to get her home. Heart surgery would be considered down the road (short term). The tough part is coming back for surgery later on. We still don't know why she reacted the way she did, so it's not clear how to proceed differently next time. The unknown obviously has the potential to cause more trauma to the brain by ending up in the same spot we're currently in. Not to mention the stress we've all endured, including the surgon teams and our Family. We all have reservations about putting her back under.
Option 2. To keep her sedated, to keep her on the ECMO machine and to go forward with her surgery in the next couple of days. They don't know the current status of her brain trauma, and that's what they're concerned with. They're considering a CT scan tomorrow after warming her up, to see if they can identify any brain damage to help make future choices.
We've been comforted by the excellent staff here, they're so knowledgable. The 2 main anestesiaologists have clearly been personally affected by this situation and both have told us that they are praying for Mya. The lead told us with tears in his eyes that last night his 3 kids were praying for "the little girl at Daddy's job who needed their prayers." Keep up all the prayers, they seem to be working! She's showing great signs of improvement, even though there is a long road ahead!