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As you may have read below, I have been concerned that Audra is developing congestive heart failure. It wasn't a large concern or anything that was sending us running to the hospital. But it was enough to make me worry and question every little thing. Some may call it paranoid. I prefer observant :)

Well it turns out that for now, all is well. Audra is growing so well and really making up for lost time. Her lungs sound clear, which is obviously very important. Her oxygen saturation levels have been climbing as our cardiologist has predicted. Her blood pressure is lower than before. And she had another good weight gain. All good things. So perhaps I need to relax a little. Easier said than done.

Our phone call with the cardiologist had good news and bad news. I will start with the bad news first so if you are a good news first kind of person, then skip to the next paragraph and come back after reading it. So the bad news is that the lab ran the WRONG test on Audra's blood from Monday. She has to get blood draws to check her levels of her blood thinner because of that clot from the line in her leg back in June. We go to the cancer center because they are usually very good at drawing her blood - we had issues at the regular lab. Audra is a hard poke as they say. It is just awful. Anyway, we have had to go back one other time but we are just so upset this time. I spent a very good amount of time on the phone expressing our displeasure with the situation. I told them perhaps we should just go over to Mott if they are so incompetent We are just beside ourselves that she has to get this draw again. And who is to say it will be done properly? Well, our cardiologist has assured us she will do everything she can. The head of the lab called to apologize and gave me her cell phone number. When we went for the draw, the head nurse from our cardio office went with us. She sat with us while we waited to be called and got impatient as we usually do. The nurse discussed the procedure with the lab nurses. Basically the nurse from Monday (who was not around thank goodness) read the order wrong and just entered it wrong. We confirmed about 100 times the proper test. The nurse then did an awesome job with the draw. Then they gave Audra a teddy bear, some flowers and a Meijer gift card. It doesn't make it any better but at least they tried to do something. Her levels look good and we are set for another two weeks. September cannot get here fast enough as that is when we have our follow-up at UofM on the clot.

Now the good news. Our cardiologist has given us the preliminary green light to do the online tube weaning program for Audra. We are so excited. It is a net coaching program that is 3-4 weeks and will get her off of her dependency of her feeding tube. It basically reduces the amount we give her through the tube so that she gets hungrier and eats more. We have just registered for it and now have to do the medical evaluation.

We have been in contact with two other heart moms who have gone through the program, which is so great. One even goes to UofM for her child's treatment. Anyway, once we get more details on the feeding plan we will be able to figure out our plan. But for now we continue to improve :)

Thanks for the support!