So today we had Noah's first visit to trach clinic. Before he was going to Aero-Digestive Clinic which I have been told is for kids on the fast track to decannulation. Noah is becoming increasingly complex so they have switched him over to Trach Clinic to monitor and check on him more frequently. Not a huge change. Same team of doctors and specialists just different physicians that see him. It went pretty well today and I actually got my way with some of his feeding stuff which I am pretty excited about. Okay so here's what went down today....
Feeding Stuff:
Noah weighs 25.1 lbs (over 98th percentile) and is 28 in long (85th percentile). He is a big kid. His dietitian cut back his formula to 5oz per feed instead of 6. They are also on board with me giving him solids. I make his baby food from fresh fruits and veggies and it's kind of become a fun little hobby for me. Things I've made so far: avocado, green beans, yellow squash, zucchini, butternut squash, spinach, peas, peaches, apples, sweet potatoes, bananas, and blueberries. I also give him yogurt once a day with his morning puree. They didn't give my nurses an order for it so I'm still in charge but honestly, it's better that way. I can control what I give him and how much he gets. Right now he usually gets between 2-3oz, 3 times a day on top of his formula intake. What can I say, kid loves to eat! We are also going to try him on a continuous feeding overnight to hopefully let him sleep through without waking from hunger. The feed will infuse from 10pm to 7am at a slow rate of about 2oz an hour. Since they cut back on his formula I was really concerned that he would be waking up starving during the night. Sleep is the #1 priority when it comes to Noah so whatever we have to do to get him to sleep through, I'm gonna try. We will see how that goes but I'm crossing my fingers that it works!
Pulmonary Stuff:
Noah is going to continue getting his breathing treatments like he is now but with a higher strength of one of his meds. Since he had RSV not too long ago, we want to make sure that he is able to get all of the gunk out of his lungs to get him back to healthy. His doctor said that it can be months of recovery regardless of having a trach or not so we still have awhile till his lungs are sounding clear and normal again. He has been off oxygen for over a week now -YAY!!- so he is doing amazingly better. He also has a sleep study scheduled for March 13th and I am praying for good results or we might have to put him on a ventilator at night. They are worried about hypo-ventilation and/or CO2 retention. Basically that means that when he's sleeping he may not be able to adequately inflate his lungs causing a slight lack of oxygen and/or too much carbon dioxide staying in his body. At night you typically have less tone in your body so kids with low tone already sometimes have trouble with this. It might also be neurologically related but it's hard to tell. I am really hoping we don't need the vent because if we do, Noah will have to be inpatient at Dell until we learn the mechanics of the vent. Not a super long stay but still not very convenient or fun. I will update again after the sleep study but keep us in your prayers that everything goes well and we won't need a stinky vent!
That was basically all the big, important stuff from clinic today but we have a few appointments coming up within the next month so we will be pretty busy. Noah also has an MRI for his brain coming up on the 27th and then a follow up with the neurologist on the 4th. Not really sure what we will see but so far all of his genetic testing has come back normal. That means no diagnosis which is sometimes harder not knowing what to expect. He also has another eye appointment on the 26th of March to get a second opinion from another doctor. I'm secretly hoping he needs glasses because how stinkin' cute would my chunky little monkey look with glasses?!?!
Anyway, there's the update and I am loving this whole blog thing.
Love and hugs,
Devyn and the boys
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