Tuesday, July 14, 2009

Another monitor download

My mom was visiting for a few days in order to pick some accessories for new cabinets to be installed in our family cabin in Minnesota. It was great to have the extra hands. This morning she and I ventured back to OSF to the sleep lab to have both Adam & Sara's monitors downloaded in preparation for their pediatrician appointment tomorrow morning. What were my expectations? I thought Sara would do awesome as usual. And Adam? Well, we knew that his recent apnea struggles were due to reflux issues. Prior to his last download I stopped nursing and increased the rice in his bottles and it paid off with only 1 apnea. So we used the past 2 weeks as experimentation time. I started nursing him again a few times a day and we cut back on the rice. So I was completely prepared that he had another increase in apneas. The technician was surprised I already had the monitors out of the carrying case and unplugged, ready for her to download the data. I told her that I would like the results read by tomorrow if possible so we could discuss next steps with the doctor. She headed to the back to make sure the data transferred and came back out with preliminary results! So back to Adam...he had 1 short apnea and 1 short bradycardia in the past 2 weeks. I was shocked! My boy did such an awesome job with the challenge we gave him. It is such a nice feeling to see him progressing. Going from 10-15 "As & Bs" a day in the NICU to 1 or 2 in the past few weeks...what an accomplishment! Dr. Neese is out of the country on a mission trip so we will see Dr. McCarthy tomorrow for a weight check. We are hoping she agrees and Sara comes home monitor free. She has now had 2 months with no episodes.

I am a little concerned about Adam over the past few days. He has not been eating like he normally does. Taking 1/2 his feeding volume and spitting most of it up, breathing heavier. I wonder in the back of my mind if he is going through his round of anemia that he never had while in the hospital. At that time, his body was not able to kick in and make red blood cells so he had a blood transfusion both times he got anemic. Dr. Clark told us during discharge to expect that he would have a bout of it while we were home but he should be big enough to muscle through it. Just look for symptoms of being pale, more tired & irritable, not eating as well, etc. I'll definitely check into that with the Dr. McCarthy. Also a question to check in about Sara's gas pains. Seriously, she just writhes in bed sometimes almost screaming out just trying to pass gas. There has to be some other way we can help her.

More news tomorrow after the doctor visit...

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