February 11th we made another trek to Driscoll Children’s Hospital in Corpus Christi to see Dr. Wang, Clay’s neurologist. He is amazed that someone with so little muscle is still walking on his own. Clay weighed in at 65lbs and was 64.5 inches tall making his BMI 11%. Dr. Wang said that he has NEVER seen anyone with such a low BMI. He has ordered another round of test to get a molecular diagnosis, we are still trying to understand what type of Congenital Muscular Dystrophy Clay has. He put in the order but like the last time we expect Medicaid will deny the testing. If that happens we will have to figure out how to pay for it ourselves or go without and see what else we can do. Right now we are just in the holding pattern until we hear back from them. Dr. Wang wants to start seeing us every 6 months versus once a year.
February 25th We returned to Corpus Christi and The Driscoll Children's Hospital to see Dr. Nolan our favorite Pulmonologist. He called me yesterday to let me know that he got the results back from the latest sleep study. Clay now has a couple of new diagnosis. On top of it all he also has Obstructive Sleep Apnea Hypopnea and Central Sleep Apnea.
Clay will be using a BIPAP Ventilator every night. The BiPAP must be approved by Medicaid before we will have it. Until then Every night Clay sleeps he is at risk of brain damage caused by the lack of oxygen getting to his brain.
This was the good news. The bad news is that Clay now has Atelectasis of the right lung. Meaning in his case that the lower lobe of his right lung has collapsed from the fluid buildup. There is really nothing to be done for it that we aren’t already doing. Dr. Nolan now wants to see us every 4 months instead of every six. Now we wait for Medicaid to approve the BiPAP.
March 2nd, In spite of all of the new complications Clay competed at the Weimar Fast Relays. Weimar Fast Relays is a track and field meet that is put on by Weimar FFA for Special Athletes. Athletes of all ages and abilities get to participate in running events (with and without walkers), wheelchair races, softball throwing, tennis ball throwing, and long jump. Clay competed in the 25m and 50m running race, and tennis ball throw. Metaling in all events. Most importantly having a wonderful time!
On March 4th we got the call that Medicaid approved the BiPap and we would be picking up the machine on the following Monday. We finally get to sleep! Clay is sleeping through the night and waking rested for the first time in a long time! We are still waiting to hear about approval for the testing but we are hopeful.
(Obstructive sleep apnea-hypopnea syndrome (OSAHS) is characterized by repetitive episodes of airflow reduction (hypopnea) or cessation (apnea) due to upper airway collapse during sleep. 1
(Bilevel positive airway pressure (BiPAP), commonly referred to by the trademarked names BiPAP and BIPAP, is a form of non-invasive mechanical pressure support ventilation that uses a time-cycled or flow-cycled change between two different applied levels of positive airway pressure. It generates inspiratory (IPAP) and expiratory (EPAP) pressure gradients that complement the patient's own respiratory cycle, optimizing the lungs' efficiency and reducing the work of breathing. BPAP has been shown to be an effective management tool for chronic obstructive pulmonary disease and acute and chronic respiratory failure.)2
(Atelectasis (at-uh-LEK-tuh-sis) — a complete or partial collapse of a lung or lobe of a lung — develops when the tiny air sacs (alveoli) within the lung become deflated. It's a breathing (respiratory) complication after surgery. Atelectasis is also a possible complication of other respiratory problems, including cystic fibrosis, inhaled foreign objects, lung tumors, fluid in the lung, respiratory weakness and chest injuries. The amount of lung tissue involved in atelectasis is variable, depending on the cause. Atelectasis can make breathing difficult and lower oxygen particularly if lung disease is already present. Treatment depends on the cause and severity of the collapse)3
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