After nearly two months without occurring Elias began another series of Apnea episodes. Thankfully as the posting of this update we seem to have reached the end of this round. He had 10 - 12 episodes this time around with nine of the ten from 6am – 6pm Friday. It was, as they typically are, very stressful with some of the episodes lasting several minutes before we could get Elias breathing on his own again. Half the time he would recover after a few minutes and start playing as if nothing happened. Other times he would just fall asleep because it had wiped him out. After each time we would just hover over him and anticipate the next episode to happen and we usually did not have to wait long. The first half of the day there was only one or two time Elias would need oxygen. Even then we had him weaned off within 10-15 minutes. However, towards the end of the day he was needing oxygen longer. He was actually on 1/4 to 1/8th of a liter from about 530pm until roughly 930pm just to give him some extra help and allow his body to not have to work so hard.
We are not exactly sure why, but we both had been getting a feeling inside that this was coming, but neither of us wanted to say anything not wanting to jinx it into happening. On Thursday while in the elevator at the hospital going to our Aural Rehab appointment I gave Elias a very concerning and focused look. It was apparent by the look on my face there was a serious concern because everyone asked me what was wrong. Elias had “That Look” he gets when he stops breathing. My heart stopped and was focused on watching his chest for movement. At that moment he was breathing so the face was a coincidence. During his nap after AR we noted how shallow his breathing seemed.
That night we became concerned further when we put him to bed. Shortly before falling asleep, around 1130pm he had a coughing fit while on the vent and he dropped his SPO2 sats, but he was breathing over the vent setting which means he was breathing on his own. There was not anymore issue until 6am. It is difficult to tell when he his on the vent for certain when he stops breathing on his own, but if he drops below 12 breaths per minute (BPM) the vent will take a breath for him. He was registering and we were counting 12-13 BPM and his SPO2 sats were into the 70’s. anything below 92% is considered low for Elias. We increased the rate from 12 – 15 BPM and that helped him get his SPO2 sats back to an acceptable range. This is the second time we have had do to this over the past several months when these occur so that will need to be addressed by the Pulmonary doctor.
To address what is causing this, there still are no concrete answers. Pulmonary strongly believes that everything points to this being Central related, meaning when this happens the brain is not telling the body to breath. The question to that is why are they so random, spaced apart and inconsistent? We have never tested Elias for specific allergen issues and we have recently found a reliable source for what allergens are active as well as their levels daily. So we will be notating this to find similarities. Neurology is considering doing an MRI to evaluate again for the potential of seizures or other evidence in the central lobe area of the brain. The Hematology/Bone Marrow Doctors are not keen on this. There is discussion between them about the clinical value of the MRI versus the risk. While the radiation exposure is one concern as you always want to limit FA patients exposure, the greater concern is a fear from them that Elias may end up being admitted after the procedure. He would be sedated and MRI’s can take a lengthy amount of time. You never know how Elias is going to react under sedation and that is the concern. As many FA FAmilies know risk versus reward is ALWAYS a paramount issue considered in a care plan. So as we have been ,we just continue to stress through these episodes and pray that Elias remains safe and without the need for more serious intervention. As Katharine said, “repeatedly saving your child’s life drains you. But the alternative is not worth thinking about.” We appreciate all the thoughts and prayers as we are pleased to report Elias doing better today. It is always an adventure with our little man. He finds ways to make sure things are never dull around here.