Well, it's Thursday! I guess I can finally update on my appointments from Tuesday. I had 3. I was at the hospital from 10:45 A.M. until 3:30 P.M. Such a long day!
First off was my neurology appointment. Dr. Nicholas said that I had been diagnosed correctly in 2006, I do in fact have Arnold Chiari malformation of the brain. He had a medical student with him, she first did my physical exam and told him that everything was "normal". He freaked out on her. "No way! There is NO way!" He went through the physical exam again himself. I have sensory loss in both my hands and feet. By that I mean, I can't tell how cold or hot something is, or how painful or dull something is, or the texture really (if it's hard or soft like cotton). I can tell if I'm looking at it, but not when my eyes are closed. He also used a tuning fork to test if I could feel the vibration. I told him it had stopped well before it actually had. Ryan said it was vibrating so much, the doctor's finger was moving, and I had thought it had stopped completely. This happened in both hands and feet. He tried to check for balance, but with me being so pregnant, he couldn't really tell if I was off balance due to my brain, or my huge belly. haha. My eyes look fine, and my mental aptitude was great. I'm on the upper scale of people that can spell things backwards, remember sequences, and do math in my head. SHEW! That was relieving! He kept saying he's never seen someone like me. He has 2 patients that have Arnold Chiari that he treats. One does medication to relieve the headaches from it, and one had surgery. He said he doesn't know what to do with me because I do have diabetes. The symptoms like sensory loss could be from either my brain or my diabetes. He actually used Google and PubMed websites to try and find a case study like me. NOTHING came up. So his words of advice were-- to have a c-section. The kicker is that I'm not allowed to have an epidural or spinal block. I'll have to have my cesarean section under general anesthesia. This bothers me because I won't be able to see Max until I wake up, and depending on the doctor Ryan may not be permitted to be in the operating room with me. These two things plague me. I know it's better than my alternative... which could be paralyzation from the spinal block, epidural, or pushing for vaginal birth. So, it's my only option but that doesn't make it any easier to deal with. His other words of wisdom were to monitor my symptoms closely if anything changes call him immediately or go the ER, and if there is any trauma or injury to my neck or back to go straight to the hospital as well. The smallest thing could make my brain descend further and then I'll need surgery. He also referred me to a neuro surgeon to get a 2nd opinion on having surgery to correct it. He said no need for surgery now, but he can't make the decision by himself. So, now I'm waiting on THAT appointment. I'm hoping they'll say the same, if I can deal with my symptoms, then I don't need brain surgery right now. That was about it, I think... My favorite quote from him was, "we can't pretend you're normal...you're far from that..."
2nd appointment was the regular, weekly appointment at the High Risk Clinic. My blood sugars have been insanely low @ 3 a.m. Last week they were concerned because my morning blood sugars were 80-100, and they want me to wake up at 60! So they increased my bedtime insulin dosage. Well, that caused me to be low at 3 A.M. I know it was the cause because in the weeks prior I didn't have the lows. Two nights it was so low my machine wouldn't read it, it just read "LO", and the rest of the nights they were 22-35. But, they couldn't make a mistake you know. The team of doctors came in and said it wasn't the insulin, and they would not take it back down. Apparently I'm not taking as much insulin as I should be considering how much I weigh and how far along I am in pregnancy. Well, who are they judging me against? This isn't my "technical" body weight. I'm not normally this big! And it's apparent I'm taking TOO MUCH insulin for MY body because I have at least 2+ lows a day. So, anyway they blamed my diet. I need more protein. hah. At bed time they want me to eat a whole meat sandwich. I don't like meat, and when I said that Dr. Evans said, "Well, I don't care what you don't like, it's what you're going to have to do." Awesome right? Then, because I kept saying I eat as much protein as I can get in due to the fact that I'm not a meat eater, I was forced to talk to a dietitian AGAIN. And again she said, I don't know why they keep telling me talk to you, you have a very well-balanced diet considering your food allergies and lack meat eating. So she told me just to eat more high-fiber carbs as a replacement to adding more protein. Anyways, I did none of that, I went back to my old dose of insulin at bedtime, and that fixed it. So, I'm still upset that nothing I say ever gets heard, and what they say is basically retarded. But, that's a whole different story... BUT, my blood pressure was back down again! Ryan and I were so relieved! I'm currently waiting results from my 24-hr urine collection, and blood work on my liver, kidneys, and CBCs.
3rd appointment was a Biophysical ultrasound to see how Monster Max is growing. He's doing great! Very active! He's in the 47th percentile as far as his growth. He's a little over 3lbs now. He has mommy's plump lips! and daddy's penis! hahaha. His lips are HUGE. He looks very much like a monkey. And he kept moving them, already a talker! So, they have no qualms about him and his growth. He's a piece of perfection!
That's all the info I got from Tuesday. I'm sure I missed some stuff here and there but I was on information overload. I'm still trying to sort through it all myself. I have an NST and appointment with the anesthesiologist tomorrow. Wish me luck!
Until next time...
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