Jason did a fabulous job of keeping everyone updated last night while I was at the hospital with Ali. Although we were kind of hoping that we’d be discharged today it appears that I’ll be sleeping in a chair again tonight since Ali hasn’t been discharged. She’s being kept on an observation ward for post surgical patients because there aren’t beds anywhere else and this ward doesn’t have beds for parents, just big “comfy chairs” which are not so comfy overnight!!!
Everything is going well. The feeding is improving and we have been able to control her pain with Tylenol today which is great because she pulled out her IV this morning. If she needed morphine they’d have to put it back in. She’s been smiling and kicking her feet a bit too, it’s so nice to see her feeling more comfortable.
So where do we go from here? We go home with a temporary G-tube in place. It’s rather large as Jason mentioned in his update. We need to be extremely careful with it for the first two weeks and then until it’s been in place for three months we’ll have to take some precautions. The key is not to pull it out or to let her pull it out because apparently in the first three months that would be an emergency. We also have to watch for infections and granulation tissue and make sure that it’s healing in place. In three months Ali will be admitted to the hospital for a second procedure. She’ll be getting anesthetic again and the temporary G-tube will be removed and a more permanent “flat” G-tube that looks like a beach ball plug will be inserted. Then we’re done!
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!
