I can not say enough great things about the nurses in this clinic. They were amazing with Levi. They refused to swaddle or restrain him to put the wires on, which is how the wires for his EEGs were placed in the past. The nurses would put up to 5 wires on Levi and he would turn his head and they would all fall off. The nurses just started again. It took 3 nurses and starting over 3 times to get it all on Levi. No tears from Levi or Mommy!
While laying there after he fell asleep, I listened to the beeps and such of the equipment. At some point, I think it was around 2 am or so, I had this feeling that something was going to be found during this test. I just knew it.
A few days later I get a call from Indy saying that Levi's results are in. He is diagnosed with Moderate-Severe Obstructive Sleep Apnea (OSA) with Moderate Hypoventilation. The Hypoventilation basically means that he is not exhaling as much as he is inhaling, so his CO2 levels are pretty high. He was referred to Pulmonary and we went there with the assumption that he was probably looking at having his tonsils and adenoids out as that seems to be the standard cause of OSA. However, the Dr looked at Levi's tonsils and said it was normal but could not see his adenoids and referred him for an x-ray. She also talked with me about the results of the sleep study and voiced concerns that if his adenoids were normal, it may be that his low muscle tone (Hypotonia) is affecting his lungs and causing him to struggle to breathe in his sleep. She said if his adenoids came back normal, we would be looking at a CPAP for Levi. I voiced concerns that it may be difficult to get him to wear it. She then says our last resort will be a trach if he will not wear the CPAP at night. She said that if we had waited another year or two, he would probably have been really bad and it was good we got him in for the sleep study when we did. Looking back now, I think she knew it was probably not his adenoids causing the issue but she wanted to be certain.
So, we had the x-ray and on Friday we got the result. Adenoids are normal. However, a calcification was seen near his hyoid bone (in his neck area) and we needed to have it checked. So, while at the Children's Hospital in Indy for Feeding Therapy, we went ahead and had the ultrasound of his neck done. Levi did amazingly well! I wouldn't have liked that pushing against my neck over and over again, but he tolerated it well. The tech got all the pictures and then said she wanted to see if the Radiologist also wanted to have a "real time" look at his neck. I couldn't decide if this was a good thing or not. The Radiologist came in and was very nice. Levi liked him. He said that the x-ray we had done previously had something that they were unsure of and they wanted the ultrasound done so they could have a better picture. He then checked Levi's neck with the ultrasound well and then turned to me and said everything looked fine. Sometimes things look like something on the x-ray but when they get a better look, either it is no longer there or it isn't really an issue. I was so happy to hear Levi didn't have something else challenging going on with him right now.
After we got home, Pulmonary called me with the ultrasound results (which I already knew) and then told me the plan for Levi. They will be submitting an order for an autoPAP machine. Basically this is a type of CPAP machine that will automatically adjust depending on Levi's breathing while asleep. This is more beneficial since his breathing may fluctuate from night to night, a CPAP would have the same pressure no matter what which could make Levi aversive if it is trying to push a higher pressure and he really doesn't need that every night. We should get a call in the next week or so from a Home Health Company to get the machine. Levi is suppose to wear it a minimum of 4 hours during the night. (Hopefully it will be the whole time he's asleep). It will have a "chip" in it that we will take to his next appointment and they can pull it up on their computer system and see how it is working for him. I'm told that the Home Health Company will also be able to see the data while we are using it and notify us and his Dr if they see any issues/red flags.
I have so many unanswered questions. If it is Levi's hypotonia (low muscle tone) that is affecting his lungs and breathing, is there a chance his lungs could get better or worse as he gets older? Will he be on a CPAP type machine the rest of his life? I've asked these questions somewhat already, but I am getting the feeling they will have to see what his results are at his next sleep study in a few months to have a better idea and something to compare to his sleep study we just had done.
So, now we are on this new path of our journey. I'm trying to keep up and hold on to what I am being told and what I am researching to continue to help Levi the best I can to keep progressing.
