Winter is known for sickness. Being medically fragile, a ‘typical’ winter illness for any other kiddo could easily land Ryker in the hospital. We own stock in Clorox, Lysol wipes, hand sanitizer and face masks around our house! If you want to be around Ryker, you need to be fully vaccinated and scrubbed up, no exceptions when it comes to protecting him! Part of our winter preparations recently included a mirage of hospital visits as a “tune-up” for sickness season. Last week, Ryker had 7 appointments at A.I. DuPont, along with X-rays and bloodwork. He also had his 1-year regularly scheduled check-up and vaccinations. Any hospital day-trip is a LONG day. It is very taxing on Ryker to be awake that long- especially for a baby who is hypersomnolent. On a normal day, staying away for several hours is all it takes for Ryker to need a two hour power nap. On hospital days, he is constantly woken up for each appointment so he can understandably be a little irritable and ready to collapse by the end of the day.
Several of his appointments were more of a ‘check-in’ for him that didn’t require a lot of heavy lifting. He had another repeat EEG, which he generally has every 3 months to monitor for potential seizure-activity. He even put his legs down and bore a little bit of his own weight when showing off for the neurologist! He also had his first eye appointment. He wasn’t too thrilled with the dilation drops, but he recovered quickly when he saw the cool toys the doctor had for him to look at. While he does have some nystagmus and eye-jiggling, his depth perception is within normal limits for his age and because the issues aren’t prominent to the naked eye, we are going to continue to monitor it but do not expect any increase in the issue as it is most likely related to his PURA Syndrome. He has already had an MRI when he was just a few days old, so the doctor does not see a need to repeat it. The X-rays of his spine were for a new patient appointment with orthopedics. PURA kiddos like Ryker are at risk for scoliosis and hip dysplasia, especially since he is not weight-bearing. We’ve recently noticed a sharp outward curve in his lower back whenever he is in a sitting position. He also does not want to drop his legs when held upright, preferring to keep them in the ‘frog’ position. We were worried this might be a permanent problem for him, but the orthopedic doctor felt the kyphosis (an outward curve similar to scoliosis- which is side to side) was postural in nature and he would be able to grow out of it as his core and back got stronger.
Several of his doctors stressed the importance of gaining momentum to push him towards his goals of sitting and standing. Tummy time, much to his displeasure, is paramount to strengthen his back muscles. Sitting with his lower back supported, supine lumbar stretches, and oblique work on his medicine ball will be very helpful to build core/back muscles. These are things that are now officially “Doctors Orders” to occur as many times a day as possible within his wake/feed-free periods. The hypersomnolence and his prolonged feed times are a roadblock to this on some days, making it all the more important to capitalize on the available times to help him reach his full potential. He very much so wants to sit up and gets very excited when we help him sit, or place him in the corner of the chair to sit. We think he likes sitting like a ‘big boy’, especially when his big brother is around!
Staying on top of Ryker’s equipment settings and monitoring him for the early signs of any illness are paramount for him. He’s gotten so much stronger throughout the year. As such, it’s becoming easier to spot the early signs of illness. If his oxygen level starts dropping more towards the lower 90’s than the upper 90’s, that’s usually the first sign. His heart rate generally stays well below the ‘normal’ range for a baby his age, and any increases in it typically signal that he may be working harder to feel well. Coughing or sneezing normally elicits an automatic ‘oh crap!’
Handling any illness at home generally involves remaining in close contact with his pulmonologist and the entire pulmonology staff at A.I., increases in his vent settings at home, the addition of supplemental oxygen, nebulizer treatments, suctioning his nose and lots of snuggles. Even after all of that, there ultimately comes a point where the decision may be made to ‘abandon ship’ for the hospital if his treatment needs require more support. We think we’ve gotten pretty good at knowing when the time has come that we should ‘abandon ship’ and when we think we can successfully ride it out at home. We are hopeful his progress this year means he will be stronger to handle illnesses at home.
Ryker recently had what we believe to be a cold (compounded with massive amounts of teething). With a few more nebulizer treatments, he recovered successfully at home! He was very proud of himself for being able to help administer his treatments.