RobertsFamilyBlog

We are home again. Nice to be in my own bed tonight. Note to self... next time bring your own pillow and towels because they do not provide them for the parents!!! It was a long night of lots of "beeping". The machines Kahlia was hooked up to are set up to beep when her oxygen saturation level goes below a certain level. Because hers is ALWAYS going below their "red zone" level, it was beeping constantly...all...night...long...I woke up at 6:30 this morning and saw among all the other wires hooked to her an oxygen mask next to her face - not on her just beside her - I guess they were hoping that she would get more oxygen just having it next to her? Seemed odd, but oh well. Dr. Carlson (her Cardiologist) seemed more concerned today then previous appts. In looking at the results of the Cath, she was amazed that she has not had tet spells with us. I guess kids who have those start crying, getting more and more worked up, to the point of turning blue and even passing out. With her pulmonary artery almost nonexistent, she assumed there were other smaller veins that she "grew" to help bring blood to the heart. That ended up not being the case, so she is frankly amazed at how well she is doing...We were sent home with oxygen tanks "just in case" we encounter one of those spells between now and her surgery. (Someone is coming out tomorrow morning to show us how to use the oxygen tanks!) The biggest thing is to keep her calm and not allow her to get to worked up. Thankfully we haven't really had to deal with "fits" with her - she seems very good natured. That could be one of two reasons. One, she is just easy going (I can always hope, right? :-) ), or two, she has had previous tet spells, knows what they feel like, and chooses to not go there again. It's really hard to say. We find out Tuesday when her surgery will be. Though it is not an immediate emergency - they are treating her as a very urgent case, and want to get her in as soon as possible. I just want her to keep her ears infection free, and we will most likely go in the week after 4th of July. My love for Kahlia grows with each passing day. She has an amazing spirit about her - she has gone through so much - I KNOW God has amazing plans for this little girl...Our other kids are doing great with her. They all love her so much, still fight about who gets to hold her or play with her - frustrating, but glad to see that they love her, and all think she's the best little girl in the whole world.
David is a ring bearer in Tori Seviers wedding tomorrow - she's been one of our babysitters since Brendon was itty bitty! He is going to be SO CUTE in his little tux. Busy times, busy times, but God is faithful, I know that full well. Again...tired...so tired...zzzzzzzzzzzzzzzzzzzz ;-)