After 2 blown veins in his arms, 4 different nurses and 1.5 hours of crying they finally got Oliver's IV in and drew blood for lab work. It took us a half hour to calm him down and they came back and told us that the blood they drew had clotted and they needed to draw it again! Thankfully they could just use the IV port, or so we thought, but it didn't work! So they then had to stick him again and draw from his other hand. He's going to be bruised for weeks.
We're not sure what's happening next but they're doing a surgical consult for the Gtube but it looks like the OR schedule is booked solid and they won't be able to fit Ollie in. One Dr is really trying to convince us (in a not so friendly way) about different things that "need to be tried" first. Like an NG tube(through the nose for nutrition) No, I'm sorry, but that's unnecessary. I am my child's advocate, and during the past 3 months I have learned A LOT about this disease and NG tubes are not the path for Ollie. We don't need to put him through the trauma and pain of an NG placement, we know he needs a Gtube. The trouble with MLD is that it's so rare, that we usually find that we know much more about the disease than most of the Drs he sees(other than his neurologist) We may only consider an NG if they really can't get his surgery done for a week and he doesn't do well on his swallow study and upper GI series he'll do tomorrow. (more about that tomorrow) But not with a "hey let's try this" medically invasive procedure attitude. Geez, he's 2 and very sick, let's not put him through anything we don't have to.
I'm sorry if this post sounds angry, but I really am angry, at one point today there were 6 Drs in the room and it was just too much, we were like a freak show and the one Dr. wasn't asking direct questions, she was saying "Tell us about why you're here." well, where do we start... We have repeated the same case history over and over and over during our 6 visits here over the past 3 months. I'm not joking, over 20 times. Read his history for goodness sake! It's very painful for us emotionally to have to retell how he slowly lost his ability to walk, crawl, sit up, talk and eat to different people every time we're here and multiple times per visit too. To retell about his seizures, previous MRIs, and medicines. Today when the fourth person asked me "what medicine is he currently taking? in the span of 30 minutes I actually laughed out loud! I said "I'm sorry, I didn't mean to laugh, but you're the fourth person to ask us that, it's a little crazy." She was very nice and I felt bad for laughing, but really, too much. I have definitely found my voice though, anyone that knows me personally knows that I'm usually pretty timid about talking to people I don't know or worse, asking people for things, I hate talking on the phone(I don't even like to call for pizza) but when it comes to taking care of Ollie I don't mess around. For example, the nurses usually come in every 4 hours to check vitals(heart rate, blood pressure etc), including 10pm, 2am and 6am. He was dehydrated, and he's doing much better now, we don't need his vitals every 4 hours and waking him up at 2am and taking 2 hours to fall back asleep only to have more vitals 2 hours later. So I told them not to come in while he's sleeping, just like that, and the nurse said "Okay, no problem." I didn't know I could do that! Haha, I wish I had asked at our 2 other overnight stays. So they checked him at 8pm and they aren't checking him again until he wakes up. Now I'm going to sleep. I apologize for the grammar and angry Katie that has run amuck through out this post. It's been a tough day.