Surgery went well!

Lydia had a muscle biopsy, skin biopsy, spinal tap, blood and urine tests this morning. We arrived at 7:00, and we were pleasantly surprised that the procedure had been moved up to 8:00. We are so proud of our little trooper! The doctor warned that she might be extremely cranky and irritable after the anesthesia....well, not our little Lydia! We had to stay 2 hours after the procedure for them to monitor her temperature, oxygen saturation, blood pressure and heart rate...she was sacked out the entire time! In fact, we tried to get her to eat before we left, and we only got her to take about 1/4 ounce...she was not ready to wake up. She continued to sleep on our way to the pharmacy to fill her Tylenol with codeine...we even ate in a little cafe in the hospital next to the pharmacy...didn't phase her one bit. I told her that I was going to get worried if she slept any longer than that....she was listening...she woke up as soon as we pulled back into the Ronald McDonald House. She ate 4 oz...then played happily...she's probably excited that Mommy's not allowed to do any therapy with her today...the nurse said to allow her to rest...no strenuous exercise...she deserves a break! Now she is back at rest. They told us that the incision on her thigh is about 1 1/2 inches long...so she has a 2 inch bandage over it. We were told to keep the bandage on and dry until we see Dr Wood for a follow-up in 7-10 days...we scheduled an appt with him for next Friday. Lydia also has a bandaid over her spinal tap puncture spot and a bandage over the IV spot on her foot. Dr Schoffner ordered for them to administer the anesthesia in an IV because one of the disorders that he is testing for causes many complications with anesthesia through a gas mask...since we don't know yet if she has this type of problem, they take those precautions. The nurse felt sure that she probably doesn't have that complication because she has had general anesthesia with the gas mask twice before...thank God!! That could have really caused problems for her when she had her MRI and EGD, and the dr's who performed them probably wouldn't have known why...Thank God for small miracles, too!

I was relieved to find out that we will be able to complete her RMR tomorrow morning...I can stop beating myself up about forgetting that. I was also relieved to find out that she only has to fast for 2 hours instead of 12 like the paperwork stated. That is scheduled for 10:00 tomorrow morning. Our plane leaves at 4:30 to come back home.

A few more things from her exam yesterday....(It is so hard to remember everything...it comes back to me in phases):
-Her visual tracking is significantly delayed (which we already sort of knew)...Dr Schoffner said that it is not a matter of interest...we sort of thought that she prefers to look at faces and people instead of rattles and toys...not true according to Dr Schoffner. He said that babies do not differentiate what they do or do not like to look at. They just follow lights and objects as a reflex. She did not track at all for him yesterday....although we have seen her do it a little more than that.
-Weight-bearing: I was under the impression that Lydia did tolerate some weight while she is held up on her feet. Dr Schoffner found that she was locking her knees to hold her weight...when he unlocked her knees, she was not able to bear any weight at all. In fact, he said that if he wasn't holding her so tightly around her chest, she would have slipped right through his fingers.
-I asked if he thought her tone seemed low...most dr's and therapists have said "no"....more like the low end of normal. He said that she has axial hypotonia (sp?) From what I understand, it means that her core muscles have low tone...her limbs are pretty stiff. Maybe some therapists reading this can elaborate or correct me....Like I've said before, it's all pretty confusing to me...I'm just a lowly mommy! :)
-Dr Schoffner questioned Lydia's caloric intake...I know exactly how many ounces she takes in each day, but I do not have an accurate measure of the amount of calories she takes in. He suggested that I always keep track of that, and that it should be an ongoing conversation between me and Lydia's pediatrician and GI doctor. I plan to call the nutritionist that we saw at the Lake to see if she can help me to figure it out...it is tricky because we add powderized oatmeal to her bottles and she doesn't always finish all of the baby food and cereal by spoon. Hopefully, I can get a good account for keeping up with it so that I can open the discussion with her dr's. I am trying to schedule an appt with Dr Alberty for next week. Dr Schoffner suggests that we should be in discussion about a feeding tube (G-tube, which is surgically inserted into the stomach). He says that children with mitochondrial disorders often have intermittent feeding problems, and her caloric intake is crucial at this age...so a feeding tube would eliminate some of the worries that she is getting enough nutrition...we shouldn't be satisfied with her getting the minimum. He said that he was not suggesting that we run out and get a G-tube tomorrow, he just wants us to be in discussion about it with our dr's, so that we could make an informed decision about whether or not it is necessary for Lydia.

Thank you again for all of your continued prayers, support, and encouragement! Lydia is doing well!!