JW Medical Update

Lot's of info about JW. Probably more than you want.

In May, JW had a follow up appointment with the eye physician/surgeon that examined him for ROP while still in the NICU. I thought it was going to be another invasive ROP exam and was not looking forward to it at all. Thankfully, it wasn't. The doc just looked in JW's eyes with lots of different magnifying glasses and who know what else all the while holding up toys and making silly noises to get JW's attention. It was pretty entertaining. Then he dilated JW's eyes and made more noises. I have absolutely no idea how he diagnosed anything from all that playing and noise making, but he did. Right now JW is slightly near sighted, babies his age are usually far sighted. He has a slight astigmatism and he favors his left eye. What are we doing about it? Nothing for now. Ok, not nothing. Close observation. JW has another appointment in August. He may at some point need glasses or we may have to patch his left eye to force him to use his right, but for now none of that.

Last Wednesday, JW had another appointment with the pulmonologist. We tried him off oxygen again. Within five minutes his sats were in the mid 60s. No fun. So the pulmonologist order an echo cardiogram for JW to check for pulmonary hypertension. He said if that came back negative and JW was still requiring O2 come September then we would have to do a whole slue of tests to see what's up. But he is really thinking pulmonary hypertension is the culprit, especially since JW did great without any O2 for several hours a day while we were in San Diego. Elevation affects pulmonary hypertension. Who knew? I called that afternoon to schedule the echo and amazingly there were several openings on Friday. So off we went to the hospital on Friday afternoon for JW's echo. The tech who did it told me the on call pediatric cardiologist would read it and the doctors (JW's pediatrician and pulmonologist) would get the results in a few days. Monday afternoon the pulmonologist's office called and said his pressures were slightly elevated and to make sure and keep him on the same flow of O2 he's been getting. That's it? Of course, in I never have questions until after I'm off the phone.


Today was JW's 9 month well baby visit. Whew! I know I've never had as many questions for her during an appointment as I did today. But first off, he weighs 14 lbs 9.5 oz. I think he's slowed down a little with his growth since we lowered his O2 flow back in March, but the pedi was happy with his weight gain. He's in the 10th percentile for a 6 month old. Obviously not even on the charts for a 9 month old. She said he's gaining steady. His length shot up a little. He is currently 25.5 inches which is 25% for 6 months. Again, not on the charts for 9. Now, lately I've been thinking his head is getting huge. Sure enough, 44 cm head circumference. Big jump in size there. Don't know what percent that makes him for 6 months, but he's actually on the chart for 9 months with that measurement. His head size is 28th percentile! Big headed boy!


Developmentally, he's exactly where he should be for a 6 month old. The pediatrician is very happy with him (so is his Early Intervention Specialist). No need for physical therapy at this time. He's so close to sitting up on his own. He loves to stand. Just discovered his feet. We do need to work on getting him to roll from back to tummy, but he hates being on his tummy. I put him on his tummy and within seconds he's on his back. So really, he has no reason to roll from his back to his tummy. He does roll onto his side though. So, yeah, developmentally on track. Not behind, thank God, not ahead. I can deal with that.


I asked the pedi about his pulmonary hypertension. She hasn't gotten the echo results yet. Maybe they forgot to send them to her even though they said they would. Oh well, anyway, she said that pulmonology and cardiology are closely related but since cardio hasn't seen JW since his NICU days she would go ahead and give us a referral to see a pediatric cardiologist. I forgot to make the appointment this afternoon. I'll call tomorrow and hopefully we won't have to wait too long.


No shots for the little bugger today. But he did have to have his finger pricked to see if he's anemic. She also ordered a thyroid test just to make sure it's functioning right and not hindering growth. Poor little guy is a bleeder. They pricked his finger and he bled and bled and bled. It was pretty messy. At least they didn't have to squeeze his finger like they did the girls'. Forgot to ask how long before those results come back. I suppose I can call tomorrow and ask. The pedi wants me to start giving him vitamins, but I have to wait until the labs come back before we start that because I have to know if he needs the regular vitamins or the ones with iron. (The ones with iron smell AWFUL. He got that in the NICU.)


Whew! I think I covered everything. If you made it to the end of this book, give yourself a pat on the back!