Vacation Aftermath

The week following our return from vacation was crazy busy! It seemed like we were going non-stop and the state of our house shows it! Caden had several appointments that kept me busy enough. Then on top of that, I started physical therapy for my back and have to go 3 times/week. Somehow I have to find the time to fit that all in and find childcare for Caden since there aren't a lot of people who can take care of him.

On Wednesday, Caden's first appointment of the week was a PT evaluation with a different provider. He had already been evaluated through Easter Seals but they had a wait list of 4-5 months and I just didn't want to wait that long. So, they found us another provider who could start him right away. Coincidentally it is at the same place that Kyler had speech therapy for a year and a half. So I know them well! The evaluation went well and the PT wants to start therapy right away. I am looking forward to that. I think it will really help him catch up.

Then, on Thursday, we had a regular follow-up with Dr. Van Gundy, our cardiologist. I was glad we would be seeing him because Caden had gotten sick. I had a cold with runny nose, congestion and coughing and he caught it from me. I was VERY worried about it because this is the first time he has been sick and we've worked so hard to keep him healthy. Any kind of respiratory infection could be very serious for him with his small right lung. The nurse checked his oxygen saturation and he was satting at 97% so I was thrilled about that. And, when Dr. Van Gundy listened to his lungs, he said everything sounded pretty clear but just to be sure, he ordered a chest x-ray. We had an appointment scheduled for Friday with Caden's pulmonologist and Dr. Van Gundy wanted us to be able to take a copy of the films to his office with us for him to review.

In addition to the regular exam, we talked about the heart catheterization coming up. While I was on vacation, Dr. Van Gundy's office scheduled a heart cath for Caden for Monday, July 6. It is diagnostic to check the anatomy and verify the pulmonary pressures. Echos can do some of this, but the only accurate way to get this information is to do a cath. Poor baby. This procedure is scheduled for 8:30 am at UD Davis Medical Center in Sacramento. We're supposed to get more details about the cath and what will be happening at our pre-cath appointment tomorrow.

We got the x-rays taken Thursday afternoon and then on Friday, we went to see the pulmonologist. He reviewed the films and compared them with the previous x-rays of Caden's lungs and said he didn't see much change. In terms of being sick, that was good. But it also means that his lung volume isn't growing, which is what we had been (and still are) hoping for. The pulmonologist also listened to his lungs and said they sounded clear to him. More good news. We talked about aspirating and I told him the swallow study determined he wasn't aspirating anymore. He ordered a broncoscopy to check out Caden's vocal cords and I don't know what else. That is scheduled for Monday, July 13 at 10:00 am at Sutter Memorial Hospital in Sacramento. They have to put him under general anesthesia for the procedure. :(

Also, that same Friday, Caden's feeding therapist came to the house to work on feeding. She asked how things were going and I told her that he is highly offended when we try to put anything in his mouth besides his pacifier. He doesn't like the taste of milk whether we dip his pacifier in it or if it comes out of a bottle. She said she had expected him to progress more by now and since he hasn't, she said she doesn't think he will ever drink from a bottle. But we are continuing with therapy because all the oral stimulation we are doing is helping to pave the way for introducing solid foods at some point, and eventually a cup. It is kind of disappointing to know that we will have the feeding tube in much longer. But we will do what we have to do. And, of course, we have learned that Caden does things in his own timeframe!

Then, this last Monday, I took Caden to his pediatrician for a check-up. Also wanted him to listen to his lungs and see what he thought. Caden has continued to cough a fair amount and it really scares me. But, again, Dr. Wang said everything sounded really good. And, the even better news is that he weighs 13 lb, 11 oz and is 24 inches long. This puts him in the 10th percentile for height, weight and head circumference! Such fantastic news! Dr. Wang was especially happy that the head circumference percentile was increasing and so was I.

Yesterday, the infant development specialist came out to meet with Caden. She comes out 2-3 times/month. He is doing so many more things than the last time she was here. He's actually starting to reach for toys and bring them to his mouth. Of course, if he gets them to his mouth, he makes a face and pulls them away. He doesn't really want anything in his mouth... :) And, he is starting to try to roll over. He gets about halfway over either to the left or the right and can't quite make it all the way. But he seems to really like being on his side. It's been so much fun to finally see him doing these things. He is definitely delayed in his development but we are hoping that he will be able to catch up over time.

Anyway, tomorrow we have our pre-cath appointment and then the cath is next Monday. If anything inportant comes up in our appointment tomorrow, I'll try to post something before Monday. Otherwise, I will try to update after the cath is over. Thank you for your prayers. We know God is in control and we are trusting him with our precious son.