Tuesday we headed back to Primary Children's Hosptial. We had an appointment with Dr. Such Neibar at 10:00. I had given him Clonadine for the drive because he isn't comfortable being strapped in his carseat. I think it has something to do with the angle it sits him in or the straps pushing on his tube. Terry Such-Neibar was excited about the way things are going although she was disappointed she wasn’t able to see him awake.
Highlights of the visit:
- Because he is calmer we have permission to adjust his medication times to fit our schedules and start decreasing meds according to his tolerance (although we are not supposed to take him off of seizure meds or reflux meds yet). Instructions to wean off of Tranxene first and then move on to Neurontin and report back in August. Laxatives and suppositories can be given just as needed instead of daily.
- We should follow up with the Neurologist in 6-12 months to see about coming off Phenobarbital and Keppra if he doesn’t have any more seizures and check in with Dr. Brockmeyer in the next 3 months to check out his shunt.
- His ankles appear a little too stiff for Terry's liking so she wants us to wear the ankle braces more often. And he head is favoring the right side again so more neck stretches.
- Now he is 1 year he should be doing standing exercises to increase the bone density and keep the hips in joint since a normal one year old should be standing. Standing also helps with digestion. She wants us to start by holding him in a standing position for a few minutes and slowly work up to one hour a day. One of the therapists will see about letting us borrow a stander like he used in the hospital. She also ordered a hip x-ray as a baseline so we can compare his hip joints and density later on.
Most of my questions revolved around feeding which was deferred to Dr. Jackson who we met with at 2:30.
Dr. Jackson appointment:
Luckily, Charlie had received his Tranxene and Neurontin at 2:00 so he was pretty sleepy during the appointment. The nurse put a numbing cream around the g-tube and let it sit for 20-30 min and we also gave him Ativan. Dr. Jackson came in and explained the procedure and said it is pretty uncomfortable but is really brief so they don’t feel like it is necessary to do anesthesia. The old tube was cut and the yanked out of his stomach. It was NOT gentle in the least. Sort of like tearing off a bandaid with one big yank. Surprisingly Coop didn’t cry at all but it did wake him out of his deep sleep. Dr. Jackson was an hour late for surgery by this time so I didn’t get a chance to ask everything but I did tell him that I think Charlie was still having reflux issues despite being on Prevacid. When we discussed the dose he said it was far too low for his weight and tripled his current dose to start out with. He said our regular Pediatrician could follow up with the other issues such as consolidating Charlie’s feedings, testing for stomach acid, monitoring weight fluctuations, etc. So unless we have problems with the g-tube or it needs to be converted to a G-J tube then we won't ever see him again. The Mic-key button is low-profile so isn't as likely to pull it out. It is also easier to dress him without the bulky tube. Dr. Jackson said his hole looked really well healed and he didn't see any granulation tissue (excessive scar tissue). Yea!
Because Coop had done so well with his appointments we went to see all of his girlfriends and Dave at the neurotrauma unit. It was so fun to see everyone again and made me miss them even more. By this time the numbing cream was wearing off so Charlie is letting us know that his tummy hurts.
Update on Outpatient Therapies-
VISION- :) A vision therapist (from the school of the deaf and blind) evaluated Coop on Monday. I told her that I have noticed a change in the way he is moving his eyes around although it doesn't seem consistently purposeful. After assessing him she felt that he has "vision awareness" to large black and white contrasting designs but he does not "attend" to anything yet. From what I gather he senses something in his visual field but does not focus on it or follow it when it moves. When the pattern was placed where he was looking he blinked a lot and his eyes widened. He got tired after working with her for about 15 minutes. I was so excited about this news because it gives us somthing to work with. She will bring specific toys next time and a light box to encourage his awareness and hopefully progress to focusing and following. We need to start exposing him to more visually contrasting objects with few details. She even gave him a touch quilt that is black on one side so when an object is in front of it the background of the house is not distracting.
HEARING- Coops implant has been re-programmed and we are looking for clues for if he is hearing anything. This is way harder than I thought it would be. The only clues he gives are being mad or content. When he is mad there are so many other things it could be than loud noises. So far I haven't seen anything consistent in his behavior to make me think he is hearing but Terry said that it may be one reason that he is calmer since we have been home because it is "white noise" even if he isn't processing. The implant is on and sending impulses on the nerves to the brain but his brain may not know what to do with that information or I may not know his behavioral clues yet. I meet with the audiologist once a month to re-program the device so I can try different things and look for clues. He said to plan on it taking a year to work through everything. Also we are having difficulty keeping the device on his head while he lays down because he moves his head from side to side but we are trying to be more vigilant. We also had a hearing therapist (Paula) from the school for the deaf and blind come and is teaching us how to give tactile signals to Charlie to start communication. We are each supposed to choose a touch signal to let him know who is going to touch him (like introducing yourself) because he can't hear of see well enough to know who it is. For example the hearing therapist takes his hand in hers and squeezes 3 times so he will know who it is that is going to be messing with him.Paula gathered up a tumbleform chair for Charlie to use. It helps to sit up at different angles. Thanks Taylor for giving it up so we could use it ;) It sits on wheels and has a strap to pull so Britt tells Charlie that he is taking him on a ride like they have at Disneyland.
PT/OT- We went to our second PT(Lisa) session today (it took quite a while to get evaluated and set up) but have been several times to OT (Roxanne). I think things are going well. Coop is still working on a lot of the same things as when he was in the hospital. Head control, transitioning from different positions without getting upset, flexibility, bicycling his legs, initiating some movement with rolling. My goal this weekend is to write out a therapy program so we can make sure to get all the practice that he needs everyday.
Speech Therapy-(this is really all about feeding right now)- we have worked with Carey to keep his mouth muscles working even though he isn't using them very much. We are also giving him tastes of pudding and baby food. He seems to chew and swallow when it is placed in his mouth but doesn't open his mouth or lean forward to get more so it may be more of a reflex. He still likes when we put flavored chapstick on his lips and will suck on his lip a little. He likes to chew on our fingers but only occasionally likes to chew on a binky. We still think he may eat through his mouth down the road but like everything else it takes a long time. We are supposed to start doing oral therapy 3 times a day around meal times so he get used to it at different times. She also told me that Charlie's reflux medicine should be taken on an empty stomach or it is ineffective. So it probably hasn't been working the whole time because I haven't been doing that.