We arrived in the city on the 27th so that we didn’t have to leave home at 3 am. Instead, we went to bed at about 10 at the hotel, and Ali decided that she didn’t want to sleep. Yay!
We had the alarm set for midnight as she was not allowed any feed past then. We didn’t need the alarm as we were still up. Then she decided to get fussy, and at 5 we got ready for the hospital.
We arrived and were taken in quickly, and at around 07:30h I left her in the capable hands of the surgery team, and was told to wait and we would be notified when she was done. It was supposed to take about 20-30 minutes. Well, 8, 8:15, and 8:30 went by with no news. Hmmmmmmmmmm, could be late a few minutes. 8:45, 9. Holy crap. Not good. Jill looks like she is going to pass out. I go check at the nursing station to find out that Ali was long gone to the recovery ward on level 5. No-one told us! Cripes. Bunch of %$#@&*%$^*$#@$%$#%$#, what are they trying to do to us!!!
We took off upstairs to find a very sleepy sweet little baby with a large tube sticking out of the middle of her. Thats one big tube! I’m sure we could plant her in the garden out front and use her as a lawn ornament! I think it would really save on diapers if she could relieve herself in the garden, but I’m sure Jill won’t agree. Somehow my brilliant ideas seem to go unappreciated at my house. Too many women there. I’m sorely outnumbered. Oh yeah, back to the baby.
Well, she seems tired, and sore. Her nose was finally clear for most of the day. By the end it started to get stuffed up, and she still was throwing up some, but the gagging was much better so far. There is still some, and her feeds are not going great, but we are working on it. I’m sure Jill will post much more pertinent information tomorrow, although it will not be as entertaining.
So we now have a better idea of what is going on with Ali’s vision.
She either has “delayed visual maturation” or “cortical visual impairment”. I guess either way right now it doesn’t make much difference. The treatment is the same and the outcome could be the same.
Delayed visual maturation would mean that Ali’s eyes haven’t reached the level of development required to see well (this is common in children with Costello Syndrome). CVI would mean that her eyes are fine but that there is damage to her brain and the visual information isn’t processed properly. Either way she needs to practice using her eyes and hopefully we will see improvement.
The therapists at the CNIB were able to give us lots of ideas and suggestions of how to help Ali see better so hopefully there will be some improvement in the next few years.
We are in the city for right now for another group of appointments.
Yesterday we had a consult with Anesthesiology (I have no idea how to spell that). It was pretty uneventful. They have decided to move Ali’s surgery to the morning because she is high risk and they don’t do high risk cases in the afternoon. That worked out well for us. So the surgery is a go for June 28th first thing in the morning.
Today we had an appointment with the Neuroopthamologist. He very quickly came to the conclusion that Ali CAN SEE!! She doesn’t see particularly well but she can track objects to some extent. Her optic nerves are underdeveloped and damaged, they are also lacking proper pigmentation but the jury is out on how that will affect her vision. He also noted that the muscles that cause her eyes to dilate and contract when light intensity changes are hypotonic and so her pupils are always pretty much the same size. This can lead to light sensitivity and she is extremely light sensitive. So for now we don’t know how well she can see but we do know that she can see. She may not end up with good functional vision in the long run but things sure sound a lot more positive now then they did after our first Opthalmology appointment. I am so happy to know that my baby can see me smiling at her. It means the world to me to know that when she smiles back at me she is interacting with me and that she knows that her mommy was smiling and making funny faces at her. I’ve always felt that she could see but her previous test results had me wondering if I was seeing things through rose coloured glasses (I think I do that sometimes).
Tomorrow we are heading downtown to the CNIB for a full assessment and to hear what their recommendations are in regards to Ali’s vision.
Right now I am off to make funny faces at my baby!
We traveled into the city on Thursday for another round of appointments with Ali and for once there was no bad news! We kind of go into these appointments expecting to hear something bad. I actually expect to end up crying on the way home but Thursday was a good day.
We started our day off bright and early meeting with Ali’s feeding team which consists of a nurse, a nutritionist and a feeding therapist (OT). Ali hasn’t gained any weight this week but she is still in the 50th percentile weight wise. Although she did grow a bit lengthwise she has slipped below the 50th percentile for length but she is still above the 25th percentile. Generally babies with Costello Syndrome are around the 3rd percentile for height and length by Ali’s age so in terms of her syndrome she is absolutely huge!!! Imagine how big she’d be if we could get her to stop spitting up. As a group we decided that Ali is never going to bottle feed. We were given permission to start giving Ali tastes of solid food. We are just putting little tastes onto her lips and she licks it off. So far she’s tried apple sauce and peach yogurt. We give her such small amounts that we don’t have to worry about the “rules” for starting solids and we’re just supposed to give her whatever we’re having. The tastes of solids didn’t make a huge impression. She gagged once but other then that she just licks her lips and looks totally neutral. I guess it’s better then screaming her head off.
We also had an appointment with cardiology on Thursday. Ali had an echocardiogram and an ECG. She was pretty squirmy for the echo so the pictures of her heart were suboptimal but the cardiologist was pretty sure that her heart defects were not getting any worse. She held totally still for her ECG so it was of great quality and it also showed no change from her previous ECGs. Children with Costello Syndrome often suffer from hypertrophic cardiomyopathy (can cause heart failure) so the fact that her defects seem to be stable is fabulous news!!!
We also had the opportunity to meet with the hospital administration in regards to Ali’s overdose and Jason and I were both very happy with the recommendations that the hospital made and has implemented because of what happened to Ali when she was in their care. They have done a lot of investigating and put a lot of work into their recommendations. I will elaborate when I get my written copy in the mail.
