We so feel everyone's prayers, and Kahlia is doing just fine. :-) They were worried about her at the hospital, because she was SO lathargic - like a rag doll. She was just burning. I had never seen her so completely out of it. After calling Doernbecher to talk with the Cardiology dept. up here, they knew she should be watched overnight. Doernbecher felt comfortable having her observed at Bay Area Hospital, but the ER doctor did not. He said that if she got worse, they don't have the necessary equipment to take care of her, so he wanted her to go up to Doernbecher....so I drove home, grabbed a change of clothes (Scott was still at the fair for his campaign), and took off with Kahlia to Doernbecher Children's Hospital. Scott's mom and sister were watching the other kiddos thank goodness! :-) By time we got here, her fever was completely gone -wouldn't you know it. After driving all that way, I kind of wanted her to have a fever just so it made it worth the trip! I really am joking - I am very grateful that her fever is gone, just a little frustrated I drove 4 hours for nothing! But, even the doctors and nurses said here that we did the right thing. It's always better to error on the side of caution then to regret not coming in. So here we are - spending another night. She didn't get to bed until about 10:30. Hoping she sleeps through the night - last night she didn't do so well....
The other discouraging thing is that her oxygen sats are back down in the mid 70's - which is what they were before her Cardiac Cath a week in a half ago. So much for added energy! Not sure what the next step now is. Probably won't actually speak to her Cardiologist until sometime early next week.
We also plan to take her into ESD next week for a full evaluation - hearing test - and start her on physical, occupational, and speech therapy - as needed.
As I always say - thanks for all your encouraging words, prayers, and support. This is a difficult time for our family as we have so much on our plate right now! God is faithful, and I KNOW He's carrying us through this time - because we sure couldn't do it on our own!

I'm going to take Kahlia into the ER as soon as Scott's mom gets here to watch the other kids...she has a high fever, and it could be related to her procedure last week. We are praying that this is a precaution and that everything is ok. Scott's at the county fair until 10:00 tonight with his campaign - will keep everyone posted - please pray!

The 100% is her oxygen level at that point. It didn't stay there, but it was so nice to see that number!!! :-)

Kahlia at Grandma Brown's house after she came home from the hospital - she looks so good with her PINK finger and toe nails! :-)

Dr. Armsby on the left was the main Cardiac Surgeon performing the procedure. Dr. Bailly was also assisting. We are so grateful for them - they did a GREAT job!

This is a picture of Brendon on his bunk at camp.

It's been a week since Kahlia's "procedure". She is doing FABULOUS!! She is getting stronger every day, and we see more of who she really is - it is wonderful! Her first night at home she escaped from her bed, I didn't know it, and she fell asleep in the middle of her floor. Poor girl! The next night, she "escaped" head first out of her bed, and I caught her and put her back in bed. We went through this about 10 times before she decided she didn't want to fight it any more... It's actually good to see her act like a normal almost 2 year old finally! She is also able to get into a sitting position from laying down now. She had only done it once or twice before her procedure, now she does it all day long - it's wonderful to see her get stronger! She no longer stays in the living room when I put her down. If we all leave the room - she follows us now! She is still "scooting" across the floor - but she's going farther and faster then she did before. Hoping to see her crawl soon.

Brendon had a great week of his first overnight camp. I just have to get over the fact that he had "gray" teeth since he only brushed them once all week and dirt had literally begun to stick to the plaque on his teeth, and the fact that he came back with almost all clean clothes - including underwear! I asked him if he liked his counselor, and he told me he is a lot like me. I asked him what he meant by that and he said, " he disciplined a lot and he cares about my feelings". I thought that was hilarious!!

Over all - it's been a great day! We arrived at OHSU at 6:30 this morning, but they didn't take her back to surgery until 12:00 noon. That wasn't supposed to be the case, but because of the shortage of rooms from the equipment failure yesterday, it put everyone back several hours. Kahlia wasn't quite so good today - she had a pretty fussy morning.
They didn't bring her back from surgery until around 3:45. It was long, but they were VERY pleased with the results. They ended up not even needing to put in the stent at this time - wow!! I'm not really good with details, but they went in the a cath on both sides, and put 3 different balloons in stretching and dialating her little arteries to allow more blood flow. They should stay open more now, and her oxygen saturation rates are looking GREAT!! She went in for her surgery with 69% saturation rate - and she is now ranging between 81 and 90%!!!!! It's 90% this very moment!! :-) She hasn't even woken up yet - so I can't wait to see how she feels with her new found energy level!! She usually wakes up from anesthesia tired, groggy, and grumpy, but after that she should feel great! I am so grateful for her great care at OHSU. The whole Cardiac team has been absolutely WONDERFUL!
The other good news is that this is a very temporary fix. They are now thinking her full repair could be in 3-6 months instead of the original thought of 6-12 months - yea!! From an insurance stand point - we're really pulling for her surgery to be before the end of the year! :-)
I'm feeling good - relaxed - and relieved. So grateful we don't have to have open heart surgery on Thursday. Grateful she will most likely get discharged tomorrow, and we can go on to have a normal rest of our summer.
Thanks to all of you who are praying for both our little Kahlia and our family as a whole. As the summer winds down, Scott's campaign begins to wind up!! Knowing our luck - they will schedule her full repair surgery right around election time in November - what are the chances of that? Hopefully none, but God tends to have a sense of humor with us -trying to find the busiest times for us to be even busier!
Anyway - that's all for now.

Once again...flexibility, flexibility, flexibility!!! Kahlia's Cath surgery was cancelled due to equipment failure. After spending 3 hours at the hospital this morning, we were sent "home" until tomorrow morning where she will be admitted AGAIN at 6:30 in the morning. She had to go until 1:15 today with out food - all for nothing. The poor thing did GREAT though - you would have never known - she was happy as a clam waiting at the hospital - she was absolutely wonderful - a charmer for everyone. So - we will try again tomorrow!! :-)

Flexibility, flexibility, flexibility!!! Things are always changing - never count on anything!! Kahlia's Cardiologist called yesterday with some good news. They have had many discussions about her up there, and they have changed the course that Kahlia is now on. They want to avoid an actual open heart surgery at this time, so they are going to try a less invasive approach on Monday (her surgery is scheduled for Thursday). It is just going through a Cath and putting in a stent - almost like a balloon they can expand to allow more blood flow - there's a lot more to it - it's just too complicated to really "get it" enough to actually write it down!! They are hoping for an immediate oxygen saturation increase - mid 80's at least - still in the cath lab. They will watch her over night. If her heart responds like they hope it will, then the surgery is cancelled, and we wait 6 months to a year for her full heart repair after she is a lot stronger and healthier. If she does not respond the way they were hoping, they are leaving her surgery date open so they will be able to move forward with their original plan. I like this plan MUCH better. No open heart surgery - at least yet. Please pray she responds to the cath surgery, and we can be out in a day! :-)
Brendon goes to his first over night camp on Sunday - I am really excited for him! Boys Camp (grades 4-6) up at Twin Rocks Friends Camp - where my sister and her husband work. He's going to have a GREAT week! :-)

Kahlia is a mess - we just keep finding out more things - it's hard to keep track of everything!!! Her Endochronologist from Doernbecher called me this afternoon with some not so great news from the test she took last week at Bay Area Hospital. Back when she had her Cardiac Cath - the Endochronologist had some blood work done. Not surprisingly but disappointingly, she has a growth hormone deficiency. As she stated today, that is nothing that we should be concerned with at this time - we need to get her heart working before dealing with "everything else". But, what that told her is that often times that could be an indication of other problems. Sure enough - her cortisol level was not near what it should be. That is the hormone that reacts to stress in the body. Things could not go well with out that being elevated before her surgery. Sadly, this could and probably will be an ongoing issue - possibly forever. What happens though once she starts taking medication to bring her numbers up, is that her body actually stops creating that hormone herself. So, if she gets a fever, we have to double her dose. If she has diahrrea or vomits - we have to triple the dose. I've gone from absolutely no meds in our home to what seems to be an endless list of medications that I am trying so hard not to forget!!! Her baseline cordisol level was 4.9 when stimulated at the hospital for the test, it went up to 9 - her doctor is not comfortable with levels below 18. She wasn't even close. So - if anyone is interested in a little medical lesson for the day - there you have it!! I am so grateful that at this point, she does have a normal white blood cell count so that she is able to fight off infections - often kids with DiGeorge Syndrome are not able to do that well. Her thrush looks a bit better - but it is still visible. I'm tired, and ready for the comfort of my bed! :-)

We are learning very well to never ever take anything for granted, and that there are no certainties ever at any point....we are still hoping for our July 22nd date, but we are now dealing with Kahlia having "thrush". Not surprising with all the antibiotics she was on. I noticed her white tongue last week, but didn't make the connection that it was thrush until over the weekend while at Brendon's State swimming meet. So, we have her on Nystatin to hopefully clear it up before next Thursday - if it doesn't clear - we will have to reschedule her surgery - again...please no Lord!!! So we are praying really hard that she clears up quickly from this.
As the date gets closer and closer, it becomes harder and harder to think about her going through such a rough surgery - and yet I know that she will feel so much better afterward. I just feel so bad for her for what she's going to have to go through. :-( I wish I could do it for her. But, I know that God is the ultimate Physician, and her life and health is solely in His hands - I am so grateful for that reassurance as I struggle with all that she is up against.
This weekend we had a GREAT time at Brendon's State meet. He did so good - we are really proud of him. His best event was the 100 meter Butterfly - an event he didn't even qualify for at the State meet in February. He took 19 seconds off his time, and placed 8th over all. His time was a 1:41. It was SO hot in Albany where the meet was, and the pool was indoors... :-( Thankfully, we had our motorhome that had a working air conditioner thanks to our generator, and we were the "place to be" for the swimmers and their siblings. Scott's mom and sister also came to support Brendon - a fun time by all!! Kahlia did absolutely wonderful...as usual... :-)

We found out yesterday that Kahlia did not have an ear infection after all. It was just normal skin bacteria that was oozing out of her ear??! Not sure how normal that is, but then again - has anything been normal with Kahlia? I think not! So - that was a blessing and answer to prayer. But, because they already cancelled her her normal surgery date, we are still planning on the new date - Thursday, July 22. Found out yesterday when I called Doernbecher to see about uping the date, that Kahlia's Cardiologist was a in car accident Monday night, and will be out the rest of this week. Luckily it wasn't too serious since she'll be back next week - thank goodness!
Today I took Kahlia into Bay Area Hospital for her ACTH Stimulation test. They draw some blood to get a baseline cortisol level, inject "something", wait approximately 30 minutes, then draw more blood to see what her cortisol level was then. The purpose of the test is to see how her body will respond to stress, and if she has the correct "stress" hormone level to withstand her upcoming surgery. If she does not, then they have to give her a hormone supplement to elevate the hormone level so she can handle the stress of the surgery. I am learning so much through this process, but I still don't really know exactly what all they are doing! She didn't like being poked too much - neither did I - I can barely stand the sight of blood - I had to leave the room...Anyway, she made it through - and so did I - one step closer - yea! :-)
Brendon has his State meet this weekend in Albany. Looking forward to our family camping in the pool parking lot with our motorhome and praying that Brendon swims real fast! :-)

We found out today that Kahlia has another ear infection in her right ear...so discouraging - but you would never know looking at her - she is as happy as ever. There was a brownish discharge coming out of her ear - yuck! Dr. McKelvey took a culture of her ear drainage, but we won't find out until Saturday whether it is an infection treatable with regular antibiotics, or if we are going to have to go back up to OHSU to put in another pic line for another round of IV antibiotics...I hope not!!! Her oxygen saturation was at 55% at her doctor's appt. this morning. They said normally that would be a complete emergency - calling 911. It's amazing how her body has adjusted to living with such little oxygen. I can't wait to see her blossom and grow when they finally get her first surgery done. Praying for quick healing - and God's perfect timing for her surgery.
She met Scott's sister Trisha and her kids tonight for the first time - and loved them all. I just wish I could get inside her thought process - she is learning and meeting so many new things, people, surroundings, it must be such a huge information over load!! I love her SO SO much!! The kids continue to love on her CONSTANTLY. She is not lacking in the love department. I don't think she could be loved more by the kids (or us for that matter!) - they are absolutely amazing with her. What a blessing - God knew best having a 4 year gap between the 2 youngest kids - having them older brings a whole new dynamic to their relationship - not to mention I have 3 GREAT mommy's helpers. I feel blessed beyond words - adoption has been such an amazing experience for us - ups and downs for sure - but so amazing to see how God works in truly mysterious ways that we could never begin to understand. Simply amazing.