MRI & Neurology Appointment

Noah had another MRI today in Birmingham. Let me start by saying that it was at Children's South on Acton Road and this was our first time to ever go there... not such a pleasant experience. I'm actually considering calling Children's Hospital to complain, it was that bad. They brought Noah back to do all the routine stuff (weight check, temp, blood pressure, pulse, etc.) and during this I asked if they had the orders to draw blood while he was sedated. Dr. Valero and I had discussed this last week when he called me to give us the biopsy results. I wanted to make sure that it happened because I didn't want to have to make ANOTHER trip to B'ham just for blood... plus, Dr. V and I wanted it to be done while he was asleep so it would be painless. They told me that they didn't have the orders and acted like it was a big inconvenience to have to draw blood. I asked if they could call Dr. Valero's nurse to double-check and explained that with us being out of town, it would be inconvenient to have to come back at a later date just for blood work. They blew me off, and basically gave me the impression that they didn't have time to call Dr. V's office. Okkkkayyyy... so I just took matters into my own hands and called his office myself. I'm on hold with his receptionist when the anesthiologist comes in to discuss Noah's procedure. She asks (as they always do), her: "who this" me: "Noah Brink", her: "what's he having done today" me: "MRI" her: "why?" me: "b/c he's developementally delayed" and then she says, "and because he has a large head?"... ummm, no. She then says to me"you really need to get off the phone because we need to discuss what's going on today". I explained that I was on hold with Noah's neurologist b/c I wanted to check on the orders for the blood work and she said, "well you can hang up on them, because I've already paged Dr. Valero." It was just the way she said everything... so freakin rude! Jamie's eyes were as big as saucers and I was biting my tongue to keep from saying anything to her. She then began talking bad about Dr. Valero and that he "makes promises that we aren't able to fulfill all the time" blah blah blah. (how unprofessional!) Turns out, Dr. Valero did intend for them to do the blood work while Noah was sedated so they got the orders faxed over and everything was good to go.

They take Noah back to the MRI room and for the next 20+ minutes I can hear my little boy SCREAMING his head off! Keep in mind, we are down the hall, in a pre-op room, while he's behind a closed door, there's a movie playing loudly in the hall way and CT machine off to the side that makes a very loud constant racket... and I could hear Noah screaming over all of this. I was fighting back tears and if the room he was in didn't have a keypad on it, I would have gone in to see what the heck was going on! Finally, the nurse comes out and tells me that he is very hard to stick and they had to stick him 5 times to get his IV started and to draw the blood and that he was scared to death. WHAT?! The WHOLE point was for them to draw the blood while he was sedated so that it would be painless! And if they intended on drawing blood BEFORE they put him to sleep, then why didn't they let me go back there and hold him so that he wouldn't be so terrified!? By this point, he's sedated and they've begun the MRI. After another 30 minutes, they bring Noah out and he's doing fine, just really groggy. They said if he can stomach some juice we would be good to go, but it was like they were literally pushing us out the door... in fact, the anesthiologist didn't even come back in to talk to us (like has been done in the past) she left to go home. We have had alot of different procedures done at Children's during the past 2 years and have always felt like Noah was in the BEST of hands and they always been so great but today was awful.

Afterwards, we drove downtown to Children's Hospital to see Dr. Valero. By the time we got there, he had already seen the MRI and told us that it looked good. I'm going to try to explain this so bare with me... Noah's last MRI was done in Sept '08 (at 17 months old) and structurally the brain looked normal but he had "delayed myelination". Myelination is what allows the neurons in the brain to connect (which allows babies to develop, learn new things, and do new things). A 7 year old's brain has much more myelination than a 1 year old's brain. By it being delayed it just meant that he didn't have the myelination of a typical 17 month old. So he chose to do this MRI so that he could compare it to the last one and make sure his brain is progressing. His myelination has increased, meaning that his brain is developing and progressing (GREAT NEWS). Obviously, it's not the brain of a typical and normal developing 2 year old but the fact that it is developing and myelinating is awesome news. I really get the impression that Dr. Valero believes Noah will overcome his delays but obviously, only time will tell. What stinks is that Dr. Valero is leaving Children's and going to Vanderbilt to begin working on the research side of things. I'm sad that we're losing him but praying that our new neurologist will be just as great as he is. He wants us to continue coming in every 6 months and he even told me that he wants to see Noah in 2 - 3 years because he thinks we'll have a completely different kid on our hands. So overall, great neuro appointment! Thank you all for your continued prayers for Noah. God is obviously hearing them because he continues to answer them. I'm just so grateful that all of these recent tests have come back normal and it just reaffirms my belief that Noah is going to overcome his delays and be fine!