Well, tomorrow….actually, in just a few hours we are scheduled to be at Dell Children’s Hospital, and naturally I can’t sleep.
Thankfully, Braxton is not having any invasive procedures or major surgery, but he will be under anesthesia and anytime that’s necessary I’m more than worried.
Before we had a diagnosis, we saw our neurologist who decided Braxton needed an updated MRI of the brain and an EEG. He originally schedule the EEG in office, but they decided it would be easier to do both procedures at once and turned it over to the hospital.
Then, we had our appointment with the geneticist which gave us a diagnosis. At that appointment we discussed somewhat “the next steps.” We discussed some of the signs and symptoms that are common to Rubinstein-Taybi that had not yet been found in Braxton. One such symptom was a tethered cord or other abnormality of the spine. From previous visits with our Orthopedist, we knew Braxton had a mild form of scoliosis, but the doctor was unable to tell if there were any vertebrae missing or pieces of vertebrae missing. An x-ray also does not show the actual spinal cord to see if it was abnormal. Therefore, the geneticist told me I should call and let the orthopedist know our new diagnosis and that Braxton may be at risk for these things. Our Orthopedist decided to err on the side of caution and said an MRI of the full spine was necessary. Thankfully, we were able to get that scheduled at the same time as the EEG and Brain MRI.
I also called our Ophthalmologist, because she mentioned that if Braxton happened to go in for any imaging or procedures, that she could possibly check his tear ducts again to see if they have grown enough for her to be able to probe them or insert silicone tubes (NOT the glass tubes I mentioned recently). She was also able to coordinate her schedule and will be seeing Braxton tomorrow after his MRIs are done. It’s a very quick procedure and he may have some discomfort after, but he did ok the last time he had this done, so I anticipate no complications.
So, why can’t you sleep, mom? Well, because I’m a mom. And we worry. All the time. Seriously. All the time.
Also, because I have strict guidelines to follow regarding feeding times. Since Braxton has to be under anesthesia, I have to cut off food and liquids at a specific time so he doesn’t have any reaction to the anesthesia or throw up while he is under. I’ve already given him his last formula feed for the night. He is allowed clear liquids until 3 am so I’m staying up to give him some Pedialyte so he won’t be dehydrated from not being able to eat until sometime tomorrow afternoon. If I fall asleep, there’s no waking me up in 2 hours and then I’ll feel terrible about it in the morning. Then we have to be up at 5 to be at the hospital by 6. I figure that I will be sitting around waiting for 4 hours tomorrow, I can sleep then. Ha! Who am I kidding, I won’t sleep at the hospital either. For now, I’ll watch my little man as he sleeps ever so peacefully. I will definitely update again tomorrow (later today) as we work through all the different procedures.