Wow, we had a busy week! Kyle traveled for work, Grandpa Mike was up Wednesday through Sunday when he took Scout and Dolce down to their new homes, Grandpa Corky stopped by Friday, Early Intervention and Eye Check on Wednesday and Pulmonary visit on Thursday.
Eye Exam Results & Plan
Not surprisingly, the Ophthalmologist confirmed Owen’s eyes are crossed (Strabismus is the medical term). Essentially eye crossing is caused by the brain not properly communicating with the eye muscles. His eyes are healthy and his vision is exactly what is expected in a baby his age, so crossing is not effecting his ability to see or use his eyes. Crossed eyes are very common in children who have PVL (the type of brain damage that Owen has) and the doctor feels confident that the injury is the root cause.
Sometimes, if a child has crossed eyes and very impaired vision, glasses may be the first tool used to try to correct eye crossing – theory is these people are crossing their eyes in effort to focus. However, because Owen’s vision is not impaired, glasses are not in his plan. Eye patching is sometimes used for mild cases of eye crossing. Owen’s wouldn’t currently qualify as mild. Therefore, the ophthalmologist suspects an eye surgery is in Owen’s future.
Typically, when an infant is diagnosed with crossed eyes, surgery is performed pretty quickly following diagnosis. However, in children with PVL many doctors like to watch and wait before performing the surgery. I’ll spend a lot more time explaining PVL tomorrow, but essentially PVL is associated with development delays. Those delays also apply to the eye, so Owen’s eye crossing still may improve or worsen and they don’t want to correct until they understand where he’s going to land. The best estimate is eye surgery in 6-12 months, but it could be as much as several years if it appears his eyes are still changing. Our next check in with the Ophthalmologist is in September.
Pulmonary Visit Update
We also saw Owen’s Pulmonary doctor last week. Overall the visit was positive. Besides listening to Owen’s lungs and watching how he breathes, the best indicators of lung health to her are growth and development. Growth, both weight and height, tells her that Owen’s body is not using up all its energy breathing. Also, the best way to get healthier lungs is to grow taller because lungs grow as you lengthen, and this new lung tissue should be healthy tissue. We saw last week that Owen’s had quite the development surge lately which indicates that he’s got some lung reserve beyond breathing and growing.
Now that we are back to a healthier place, the plan is to start working towards Owen doing his breathing without support. He currently get’s both oxygen support and drug support, via diuretics. On oxygen settings as low as Owen’s, of the two forms of support, diuretics have more potential negative side effects than the oxygen. Therefore, before trying to reduce his oxygen any further, we will first work at weaning Owen off the diuretics. That plan means we aren’t looking at a close in plan to lose the tank and cords (boo), but by losing the diuretics, we lose three prescriptions that are each given twice a day which is a nice mid-term goal to look forward to. It’s three prescriptions because Owen has to have some good supplements put back into his body to replace the ones the diuretics have him pee out. The doctor wants to give a couple more weeks to let him settle out from his last hospitalization, so the plan is to start lowering his dosages in early June. Fingers crossed!
Pet Free House
Grandpa Mike made the long drive from Springfield, IL to take Scout and Dolce to their new homes. The house doesn’t feel the same and we are heavy-hearted. Scout figured out something was up over the weekend and it was hard to see her so sad. We know she’ll adjust and be well-loved, but this week, that doesn’t make it easier. It’s not an easy decision, but it’s worth it all in effort to give Owen healthy lungs.
PS – Thanks Grandpa Mike and Grandma Roxie for rearranging your schedules to leave a day earlier. Making a 8 AM doctor appointment at Amplatz would have been a challenge had I also had to get Kellen to school. It was so nice for Grandpa to finally be able to visit when Owen wasn’t in either the NICU or PICU. They had some nice bonding time and Kellen always loves Grandpa days at the Mall of America.