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!

Tuesday, November 16, 2010

My new life....

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!

Monday, November 1, 2010

What now?

So the doc's told me they are trying to POSSIBLY get us discharged by the end of this week or early next week. Now before you run out and buy welcome home banners, cake and balloons you should know that I'm actually not excited about this. In fact it scares the crap out of me. I guess some part of me was under some delusion that we would go home when Ayzac would have perfect blood levels, be fat and pink and I really wouldn't have to worry about much till we come back. So not the case.

Just today Ayzac's potassium shot up to 6.8 (normal: 3.5-5.5), his hemoglobin dropped to 74 (95-135), his PH is 7.0 (7.35-7.45) and his lactate shot to 17.6 (0.5-2.2) among other things that went out of wack for no apparent reason. Some of these results can cause very serious problems if they are even 0.05 out of range. So today he got put on a bolus dose of IV fluids and had an ecg and a Kayexelate invasion where the sun doesn't shine.

So here's the scary part. Doctor's have changed NOTHING in the last few days. So you then ask "Why is his system so unstable when they have him on treatments?" Well I'm glad you asked. The doctors don't have a  CLUE whats causing these symptoms to disappear and reappear with no warning signs. They said, and I quote "We are naive to think we are the ones keeping him stable simply by treating things for which we don't know the underlying cause."

So basically it boils down to this. He has a handful of life threatening symptoms which can also cause all sorts of organ dysfunction or failure (not to mention deafness is already crossed off the list) and there is nothing more that can be done for him here. Everything they are doing can be continued at home and we get to sit around and cross our fingers that he makes it long enough for some sort of answers or diagnosis. I'm sorry but I just can't get excited about that. But what other choice is there? Sit in a hospital forever or make do with what we are given. If anyone wants to help us out, now is the time. We are going to need tons of underwear and laundry soap while we sit around crapping our drawers for the next few months! And yes...we will be back here in roughly 3 months. We could be back earlier, this of course depends on several things...if he needs emergency critical care again, if his dietary needs change dramatically or if they get good test results or need to continue with different tests altogether. He may have a muscle biopsy and a lumbar puncture in his near future.

So this week I get to practice inserting the NG, run through medications again, run through the formula prep again, talk to medical distributors and cry while I watch the bank account drain when I go to buy the massive list of supplies we need.......AAAHHHHHHH!!!!! See, just crapped my pants in one post....gonna go change now.