So Tre` had a well visit today and we have a lot of following up to do. We should schedule an appointment for neurosurgery. He’d like them to investigate the flatness of his head. During his hospital stay, he spent most of his time on his back. Poor guy. His doctor “expected” his head to have rounded by now. As of now it has rounded because he’s a lot more mobile. He spoke of a possible helmet but we’d cross that bridge when we get to it.
His doctor also recommended a pediatric surgeon for inguinal hernia and hydrocele. These returned shortly after his initial surgery and I don’t know why. I have heard of the possibility but not to this degree. It’s not grossly enlarged or appear to be uncomfortable but it’s there and noticeable.
Periodically Tre` would cross his eyes when he’s excited. I don’t know if it’s shunt related or his nervous system. We’re going to have his ophthalmologist take a look.
He has four teeth at the bottom and four up top. They all came in discolored. It’s a green yellow tinge. On one hand it’s a possibility of prematurity. Another hand shows medication side effect. And hovering over us is possible reflux. In the end we’d have to see a dentist. This is going to be interesting. This child of mine HATES for someone to be in his mouth.
Growth
Weight
27.2 lbs.
75 percentile
Height
30"
10 percentile
Head Circumference
48.5cm
80 percentile
Today he wore a BRAND NEW 24mo outfit. Today will be the last of 24mo. I'm on a hunt for 2T now. Goodies, he's just getting bigger and bigger. I guess kids are supposed to do that, huh. I mean COME ON, an 18mo shirt makes him look like a brown Pooh Bear. Oh bother!
So, Tre` had his six month review for an Early Intervention Progress Summary. He has been receiving Developmental Intervention (DI) and Physical Therapy (PT). DI and PT have been sharing the responsibilities of Speech Therapy (ST) but he hasn’t been provided with the services until now. I didn’t like the idea but they felt as though they were equipped enough to do the job. With our efforts he has been tolerating oral stimulation and up to 30mls of baby food. Tre` can stick out his tongue, do raspberries, make clicking noises with his tongue, and babbles. Now, this may not impress he average mom with a 16 month old but it would to a mom with half the issues my son has.
He still fights and gag with food but it’s a lot better it was when he first got home. I’ve been giving him Gerber Graduates, lollipops, and using a Z-vibe religiously. He’s getting better and better at it. At times he’d just pay with it. I’m not sure if he gets the concept of food as of yet, though. HoWeVeR!!!! Last week we were all hanging out in his room watching TV when I wanted a Drake’s Devil Dog. I put it in his face and he OF COURSE frowned when it touched his lips…but he didn’t gag. I put it to his mouth again and he licked it, then he opened his mouth a little for it. This lasted for some time.
We’re also clapping when asked. Yay!!! We’d say, “Tre`…clap clap.” First he’d most likely smile or blush (yes, guess who decided to be shy overnight) then he’d clap. He’s very consistent with it, too. I’m working o getting him to wave, now. Tre` has mastered the "No" syndrome. Whenever, he doesn’t want something or refuses, there is no hesitation. Note to self: teach Tre` yes.
Area of Development
Communication 6 months with scatters to 10 months
Cognitive Development 9 months
Gross Motor Development 3 to 5 months
Fine Motor Development 9 months
Social/ Emotional Development 9 months
Adaptive/ Self-Help Development Unknown...for now
It appears that the therapist would like to blame his trach for the most part of his delays. It makes since because he's attached to a vent and unable to explore as much as a child his age should.
We made it to an appointment on time. Yay!!!When I set his appointments I put them in Microsoft Outlook’s calendar.Well since we have such a hard time getting to our appointments, I put his appointment in for an hour prior to the actual scheduled time.As luck may have it we arrived to ENT (Otolaryngology) a half hour early!He had a bronc (laryngoscopy) done and ENT found some laryngomalacia.This was expected and common.She couldn’t tell the extent if any tracheomalacia because the tracheostomy was in the way.She did find vocal movement, however the left vocal cord may not be fully mobile.He does make sounds around his trach without a speech valve.Even though ENT was unable to make a conclusive diagnosis, because she couldn’t see above the vocal cords and below the trach, he was given an 8 out of 10.10 being great.We’re going to do a follow up appointment in about six month (or when he’s off the ventilator) where they do a more invasive bronc, called a bronchoscopy, whereas, he’d be sedated.
While we were visiting ENT, he also had a hearing screening done.We are aware that Tre` does hear (the child is NOSY and NOTHING gets past him). However, the person administering the test, felt as though he may have possible fluid built up, which is common for ventilated kids.It was heartbreaking to hear and walking up that hallway to the soundproof room seemed so hard to do.He was extremely moody and didn’t want to participate in anything.He was tired and having a bronc was not his most favorite events.He fought the entire time.She didn’t think it was far to him so were going to reschedule that appointment as well.If it’s done on the same day where going to do the hearing screen first.
My thoughts:I know he can hear.Again, he’s very nosy and certain frequencies even scare him.It’s just a little nerve wrecking to hear yet another problem (possible) has been found.
So, Tre’s pulmonologist wrote an order for him to sprint him twice a day. He is supposed to sprint once for an hour and the second time is a half hour. These orders were written two weeks ago. Well he has been doing incredible!!! Other than increased secretions; which are typical for a beginning sprinter, he’s been handling it better than expected. We are supposed to make changes every week. I am supposed to call pulmonary and give them a progress report and discuss possible changes, appointments, etc.
One day out the blue (last Thurs.), I was home doing a second sprint and wanted to increase it to 45 minutes. He aced it. I was so proud of him and he knew it! We were even more ready to push him because Tre` decided that he wanted to start to play with his trach tubing. Believe it or not but he never bother it before. Now I find myself jumping when he grabs at it. There are so things that can go wrong with him doing this. In addition the ventilator, he’s also has a heater humidifier. Basically, it adds moisture to his airway…and where there’s mist there’s condensation. Sometimes there’s a significant amount of water in his tubing so when he swings the tubing or lifts it over his head the waters has but one place to go. The water goes straight down his trachea/ throat. Then we have aspiration!!! It’s happened once. I try to give him something else but he’ll ignore my pleas or take what I have and eventually toss it and turn his attention back to the tubing. Uuuugh!!! While playing with the tubing he also begins to cough/ choke sometimes until he vomits. Did I say uuuugh?
This past Saturday, Victor and I wanted to watch the Mayweather/ De La Hoya fight (Yup, I’m a boxing fan) and we wanted to take him in our room while he sprinted. Victor, Tre`, and I laid in the bed with his pulse oximeter. As his hour approached, I was pleased yet again that I wanted “to see what he can do.” I checked him out and he was happy, comfortable, and not too junkie. I wanted to give him a little nudge. I exceeded his sprinting time and we had him off the vent for 2 HOURS!!! Victor wanted to put him back on because it was past his bedtime and he felt he was off long enough. He was right. I didn’t want to overdo it but in all honesty the temptation was there. Victor and I agree that he’s making great progress with this and he might kick the vent by the end of the summer!
And now the bad news! In my opinion, Bayada (our nursing agency), are a bunch of incompetents!!! There I said it. I can never get reliable nurses and coverage. I’m almost at my wit end with them. At this point I’m trying to be cordial...I NEED to be Dwana. We went from having a pretty good schedule with about five or six nurses. Then the person that is SUPPOSED to assign nurses up and stopped leaving us high and dry. Each call was one excuse after another. We had two nurses after that. One wasn’t reliable. She was either unsanitary or wasn’t confident in her care. She’d literally scream for help if he had a wet burp. I remember banging my knee on the doorway to run for him. Then there’s the last nurse. She’s mentally unstable, whereas though she becomes extremely emotional on any given Sunday. Every few days I’m fortunate to hear about how she wants to commit suicide. Great, I just need this with everything else going on. Thank you ma’am! Can I have another?
Now with the nursing care as it has been, I made sure I notified pulmonary. They are going to try to help us either switch our agency or receive better care and attention; maybe both. Without this, pulmonary will make smaller strides. They would feel more comfortable if I had nursing care (or a second pair of hands) during these changes. Victor can do but so much because he works far from home and by the time he gets home, the day is gone. They wouldn't OK more than 2 hours twice a day.
