Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, May 20, 2013

Alex's cardiology and May's well check!

Sometimes I become complacent. I always know Alex has a sick heart but I try not to worry all the time. A while ago I told Alex he was going to have a card appointment. He still gets upset over some of the little things. Tell him he has to have a shot and he cowboys up and takes it without a tear. Tell him he has to have EKG leads on and he breaks down. At this appointment he had an EKG,EEG, and an echo. The echo showed that his heart isn't functioning as well as it had been a year ago. He has been puffy in the eyes and face. His tricuspid is leaking quite a bit again. His liver is enlarged and lower in his abdomen. To try and resolve some of these issues we are tweaking medications. He will up his Enalipril and then restart his LASIK. Instead of waiting an entire year, we will make a trip back to see Dr. Su in six months. In the mean time we will watch him and hope for the meds to work. We will continue to teach him and play. Let life move forward.... On that same day, May had her 4 month well check.. Three shots, rotavirus oral, and stickers all around we headed home to try and find the medications we needed. I tried the RX by our Peds office and they didn't have one, then I tried SAMs and they didn't have it... I got smart and had them call around till I found it at Target. It took me two hours to wrap that meds business up. Between Gator and May we have quite the mix of meds. I tease sometimes that I could be a pharmaceutical technician after all the meds I have given and learned about. The math required would just about make me crazy. Weight to mg/ml based on strength, math is way to big for my brain. I can administer via oral, picc, g-tube, bottoms, air chambers and shots. Not too shabby for just a mommy.

May is growing, she is weighing in at 14 pounds 8 ounces that is the 52%. She is 25.5 inches tall which is in the 84%. She is a rolly polly and sweet as can be. She can roll and has found her voice and hands. I just happen to be her favorite person. She is a real momma's girl. Probably because I am her meal ticket. She wasn't able to have her MRI because of he oxygen usage. It will be this Friday. I am not really planning on it because it can change so easily. I already posted about my feelings on that business. Her Hemangioma is changing rapidly. It does not have any open sores and so we just have to watch it. She has been a little cranky this week and I think it has to due with all those shots. She fevered for two days after and one shot really bruised her leg. I am hoping she turns back into her sweet little person this week.

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