Still just adjusting I guess. I thought we were going home but obviously we are still here. This is just the way it's going to be. When we do get to go home it will only be for a short while and we will be back so I am learning to get used to it. I really miss my kids...the crappy weather is rolling in and it's going to be harder to travel for them to come visit. I see my house is getting renovated in order for Ayzac to go home...hard to watch from a distance being the ridiculous control freak that I am but I am very grateful!
I am starting to panic a little about all the expenses involved in caring for little man when we get home. His vitamin therapy is not covered by anyone. We are going to apply for a grant through Variety Club to help pay for them for a bit so I'm crossing my fingers. We (and by we I mean my social worker and myself) are applying to a couple of different charities to help cover expenses...the scale I need for his food and meds alone is 500 to 1000 bucks. Yeesh. If you heard a funny sound that was my butt clenching. Cross your fingers everyone that we get approved for something. There really isn't a lot of support through charities for kids like Ayzac...funding is really geared towards cancer and other common diseases that people have actually heard of...they get all sorts of cool stuff! In the entire hospital everyone has to pay 11 bucks a day for cable, Balding for dollars pays the cable for the whole oncology ward! Time to spread some awareness everyone!!! I think it's great that they get what they do but it makes me mad that all of the children and their families aren't treated equally.
Ayzac has had a rough week or so. All of his blood work looks okay but he has been acting funny. We think he might be having absent seizures. These are just as dangerous as convulsing types of seizures but they present in a different way. He goes still and just blanks out completely for a few seconds or more. It's creepy really. Other than that he hasn't been eating well and we are giving him a lot of formula through his tube. He throws up a few times a day and gets especially cranky, which is unusual for him. He is usually super calm and alert, a very happy boy most days considering...
This week he is getting a VAD (Vascular Access Device) and the PICC line will be removed. This is for long term use and Ayzac will have it permanently. It is similar to the PICC, the VAD is a little top hat looking button thing that gets inserted under his skin above the muscle just under the collar bone on the right side. It has a catheter attached on the inside that leads into a major vein towards the heart. When he needs blood work or IV or medication they can put a needle through the skin into this button and it is direct access to the veins.
Ayzac will also be getting a muscle biopsy at the same time. For Mitochondrial testing they need to try and test the affected tissue. Since they cannot just biopsy the brain or kidneys they are hoping the muscle is affected enough to give them some answers. We know his muscle is affected some because he is Atonic, this means his muscles are weak and develop poorly. That is why Ayzac cannot hold his own head up very well or roll over like most babies can do well by this age.
I had to learn a lot last week about his diet. Ayzac is on what is called a Ketogenic diet. All of his food has to be a 1 to 1 ratio of fat to everything else. It actually surprised me how tricky this is going to be. There is a calculator on-line that gives me tools to create specialized recipes and have them verified with the dietitian and nutritionist here. Its called a Ketocalculator. I have to mix his cereals and baby foods (and all foods after that) with a certain amount of fat to meet his ratio requirements. So instead of making rice cereal with formula or breast milk or water like you normally would, I have to mix it with just the right amounts of fatty foods like heavy whipping cream or butter and things like that. I have to use this calculator on-line to make sure my 'recipes' have the right amount of fat, calories, protein and carbs while maintaining a 1 to 1 ratio! It's A LOT to learn and this on-line calculator is going to be my food bible for Ayzac! If I ate like he has to eat I'd look like the Michelin man! But this is what his body needs to survive. It's crazy!
So it will be an interesting week. I am praying that everything goes smoothly and we might be able to go home for Christmas! Well that's all the new news I really have. I wish I had more. Another night on my cot...another night at BCCH. This is now our second home. We will be what they call 'lifers' here. Next time I am going to bring a throw rug and some wall hangings...lol!