It seems like it should have been an easy day, but I think in general when you’re in the hospital, no day is an easy day. Last night, baby Z was poked every 2 hours for blood sugar. They just prick the fingers (or in his case, the toes), like you see on the commercials for diabetes. He was so exhausted from getting the IV and getting his blood drawn yesterday, that he actually slept through the pokes during the night. But, he was up at 2 a.m. for a feeding (which may become our new normal because he’ll need to eat more often on this diet).
Today though, his IV came out, so they had to put another back in, and they needed another vial of blood too. At least the nurses learned from yesterday that he really is a hard stick, so they called the transport team to come do it. Even they had a hard time, but they finally got it in, and they actually listened when I told them NOT to pull pressure to draw the blood, so they let it drip into the vial and that worked much better.
Baby Z took the whole thing well. In fact, he took it too “well”. He didn’t cry when they put the band around his arm before the poke, nor did he cry during the actual poke, and she had to push the needle in, pull it partially out, re-push it in, pull it out, over and over, and still didn’t get the IV in. So then her partner found another spot and did the same thing, but they finally got it. But, baby Z didn’t cry during any of it. It was actually quite depressing, because it was like he lost the will to cry because he couldn’t control the situation, he couldn’t get away, and his own mother wouldn’t help him. UGH. My poor, sweet baby. I try to tell him over and over how I am trying to help him, and that I’m so sorry when they poke him. I wish he could understand just how much I love him and want to help him. But, all he knows is that *I* am the one who is always here when bad stuff happens to him. He won’t even look at me after. 😦 But, I just try to snuggle and hold him and talk to him about what is going on, and tell him over and over how much I love him.
Even though he didn’t cry during the blood work, he had a rough day. He cried a lot. A LOT. He didn’t want his food, his paci, or anything. But, he did want to be held a lot, so that’s what we did most of the day.
The neurologist told us that he is having less clinical seizures (the ones we can see) and is having more sub-clinical seizures (the ones that aren’t noticeable). He is still showing hypsarrhythmia in the background of the EEG. But, the neuro said it is moving in the right direction. So, I guess that’s something.
As far as the diet, today he started having more of the ketogenic formula than the regular formula. He’s still not making ketones, but maybe in a day or two. His blood sugar checks and specific gravity have been fine. Tomorrow afternoon he’ll transition to all ketogenic formula, and we’ll learn when and how to prepare real food at a 3:1 ratio. We’ll also get a list of approved products to use for pain/fever medicine, teething medicine, lotion, shampoo, toothpaste, etc. His real food will consist of 3 parts fat (butter, cream, etc) to 1 part protein+carbs, so it should make for some unique recipes. It requires a very precise digital scale, not just to 1 gram, but to 0.1 grams. I ordered it from the Charlie Foundation, per the recommendation of our dietitian. If you need one, look for it half way down the page here: http://www.charliefoundation.org/resources.html
Abby and Joel came by tonight, and it was good to see them both. I wish we could see them more, but it’s just so hard to get Abby enough sleep coming down here each night, with Joel in traffic to get home, pick her up and then head all the way into the city, stay a bit, then head home. She’s been through a lot, and I’m not sure if it’s the stress, the new daycare, having a really busy weekend, or just being in school (or all of the above), but I’m crossing fingers that she stays healthy, because tonight she was complaining about her ear hurting, and she sounds a little congested. Joel really needs to be at his “new” job, but obviously I can’t take her to the Dr., so hopefully she stays healthy and kicks whatever she’s getting. Needless to say, I didn’t let her hug and kiss on her brother, which is really hard for her, but at least she understands!
Here’s our less than homey digs. lol