Continuing with our theme of Dr appointments, today we had Skye's 3 month visit to the ENT Doctor, which is never a big deal, he just checks she's doing good and has a quick look down the trach. Everything looked fine as usual so he will see her again early May and we can then schedule another bronchoscopy with (again) a view to removing the trach if all looks ok. He reminded us that she looked really tight last time but he's hoping the dilation he did to her trachea at the time will have helped widen it.... we will see. When she cries, I can still hear a kind of 'stridor' noise when she inhales which was how this all started so who knows....
Tomorrow (you will all be shocked) we are taking Henley to see a pre-school!!! He is seriously bored at home and he just needs play more/run around etc to release some of his crazy energy so although I have a lot of reservations about this, I've started to investigate our options. The babies have had their flu shots, are still getting synagis and I would wait another month to enroll him so that the worst of the cold/flu season will be done with. The hours are only 3 hours a day twice a week, but I think it will be enough for him!!!
....Feeding Update........... Since my last post, things went downhill for a few days and Skye decided she didnt like the whole eating deal anymore. The last 2 days I have done something new and so far so good. I let her mess around and play eat in the mornings (which is what she usually does) i.e she puts food in her own mouth and lets it fall out or chews it then spits it out, but in the afternoon I skip her 3pm tube feed then I feed her by mouth at 6pm. So far she has been genuinely hungry by then so she has been eating. I also spoon feed her easy foods like mash/mashed sweet potatoes not letting her pick up and mess with the food. She has also been drinking pediasure if I squirt it into her mouth and she seems to like it. Afterwards I feed her half of her scheduled tube feed and then throughout the evening and till I go to bed, I just keep putting another 60mls through her tube (I only feed using a syringe, never a pump) untill she has meade up the feeds I witheld earlier in the day, so she's not losing any calories. its a work in progress....
I think my jaw literally hit the floor when I read about the possibility of Henley going to preschool. LOL Good for Henley. I absolutely LOVE sending Ava to school!!!! I look forward to it. I get PEACE! She does not get sick...but she is also not a multiple or a preemie...and she is 3. :-)
ReplyDeleteWhen I used to get Jacob to eat I had to do the same thing. I had to hold his feed to get him to eat. If I was not so worried about his lungs right now and his aspiration adventures I bet I could still get him to eat by mouth. I was usually success full with the AM PO feeds and then the rest of the day it was hit or miss. I hope after the reflux issues are done and we are over this horrible ordeal with his respiratory issues! We can work on PO feeds again.
Whoa! I am totally shocked about preschool!!! But you're right, it will be really good for and he's been so healthy that I think his immune system can handle it.
ReplyDeleteHopefully Skye will continue to pick up the pace on her feeds, I know you're working really hard on this! Did you end up having the ST consult?