Hope for Life

The silence here at night is deafening. Once in awhile a child screams out in pain and I am numb to it. There was a time I would have cringed at that sound, my heart would have ached for them. Not now. Now I think 'thank god that child has the strength to scream, the energy is there, they are alive.' Alive...not well, but alive. I took too much for granted, now I need hope for life. Stay strong little man...you are my hero.

Thursday, November 25, 2010

Extra! Extra! Read all about it!!!

So I will start with last week since I haven't been able to post lately. The only major thing that happened last week is that Ayzac had his first few major seizures. The unmistakable kind. He completely passed out on me then would twitch and wake up then he'd want to sleep all day. Neurology finally took things a little more seriously and started him on Clobazam. This is an anti-epileptic medication used to control seizures.After about 4 days on this medication I started to see a huge difference in him! He has started to smile and try to coo. His eyes are not deviating or going crossed as often and he has started to try and hold his head up! He's like a whole different baby! Physio is working with him daily to help strengthen his body and he loves to be in the tumble form. Its like a foamy car seat but it is made to support the body so he only has to focus on head and neck control. He will stay on an anti-epileptic medication for the rest of his life now but as long as it works I'm happy.

On Wednesday morning around 1am Ayzac started his prep for surgery. He went NPO (which means no food) and was hooked up to IV lipids and TPN. He was miserable all night and I stayed up bum patting and crying with him while we both suffered from lack of sleep and hunger. He went in to the OR at around 10:30am. The orthopedic surgeon was done the muscle biopsy in about 30 minutes. It went well and they managed to get all the muscle needed to do a variety of testing. They took a 2" by 2" chunk out of his right upper thigh. The incision is about 2 inches long but the scar will get bigger and bigger as he gets older because of how the muscle will need to regrow. The VAD was supposed to take 45 minutes to an hour but I guess they had some trouble with the machines so he was not out of surgery until about 2:30. I sat in the waiting room like I was told until 4:00pm freaking out until a nurse finally came to tell me he was transfered to ICU an hour earlier. So it was a long 5.5 hours for me worrying and staring at the wall. I went over to ICU and had a bit of a reunion with some of the staff that remembered Ayzac from 2 months ago when he was really sick.

He did great and his blood work still looks great this morning! We joked that all he needs to control his lactate is a little surgery! It was 1.7 post-op and 2.2 this morning. That is the best it has been in 2 months! Everyone was very well prepared for the worst, they even put an IV in his hand as back-up. The only scary part of the day was when they pulled the IV out of his hand. I was holding him, swaddled in a massive hospital blanket, and reached around him to feel wetness. I looked at my hand and it was soaked with blood. It was a very good IV placement apparently because it bled profusely! I yelled, "Oh no! His hemoglobin is 64, he doesn't have blood to lose! Put it back! Put it back!" Other than that he was vomiting from the anesthesia and his throat was hoarse from being intubated: so we fed him through the NG tube by pump all night to be safe. He had his PICC removed this morning and I think I might keep it as a souvenir since he lived with it for a long time and it helped save his veins. No one expected him to do so amazing but he tends to surprise me everyday whether good or bad. It's just how he rolls!

So the plan starting Monday is to change around some of his medications. The doctors are going to test some hypothesis they have about his kidney and adrenal function. This could and hopefully go really well for him, it could also be a major setback that would put our return home until after Christmas. All I can do is wait and hope and pray that Ayzac decides to stick with the pleasant surprises!


  1. I'm so glad things are going well. I have been reading your blog and I live in Vancouver area. I'm praying you can go home before Christmas.

  2. I sure hope that the little man sticks with the good program. I was glad to hear that he smiled and cooed at you. He is a beautiful baby. I sure hope he makes it home for the holidays and you do too. Thinking of you all and am loving what a great mom you are. Julie(friend of your mom's)