Such a nice feeling, being home. Friday night, we came home to a sick boy. Brandon has been fighting high fevers and strep throat while we were away. Yesterday since he was still spiking a high fever, we decided to have him tested for the flu. He tested negative and will start a new antibiotic today. After a year of strep and tonsillitis it is definitely time to say good-bye to his tonsils.
The last two days in Chicago were informative, yet still left us with many unanswered questions. There was good news concerning the report of the two new encephaloceles. Dr. Bowman does not exactly agree with this report, instead she feels that the areas that the radiologist is calling encephaloceles are diseased sinuses. She can not completely rule out the encephalocele diagnosis, but for now would just continue to monitor this area regardless. She feels that they may have over called this as a precaution not to miss anything. Understandable with Wes being under a microscope and he does have a rather “unique” unknown head.
With this positive thought came another concern. Wes head is very unique from front to back, which may be causing some pressure/compression on his brain stem and the flow of spinal fluid around his brain stem and spinal cord. Not that this is easily understood, it does help to have this as a reference for myself. He has platybasia, tonsillar ectopia, hypoplastic cluivus, and a very unique layout... The brainstem compression is the reason she originally placed restrictions on Wes' activities, no trampolines, contact sports, gymnastics... This area was briefly mentioned initially, as an area that would have no prefect fix or surgery, if it became an issue. At that point there were no immediate concerns. Her description always begins with Wes has a very “unique” head.
The portion of the appointment that caught me off guard was her feeling that Wes needs to be taught as a visually impaired child who needs to learn braille. She does not feel that Wes vision will improve and will likely get worse. I did not ask if this is what she anticipates or where she feels he presently is visually, I was shocked. We discussed his vision in depth as she did an assessment of his vision and development at the beginning of the appointment, but after reviewing the MRI she shared this thought. He does get therapy, but is presently not learning braille. Those of you who know Wes, know how well he does visually. The smaller the little guys are the more intrigued he is.
The pituitary cyst that was not seen on this report was again identified. Dr. Bowman compared last years’ scan and she feels it is unchanged.
Dr. Bowman would like to see Wes back in 6 months for another MRI and CT scan. He will have extension and flexion during these scans. She will look at his brain stem, neck, and again the sinus in question at that time.
We also followed up with the plastic surgeon who did Wes' initial palate repair. Dr. Vicari felt that Wes would benefit from a nasoendoscopic evaluation, regardless of where we have surgery for his VPI. Apparently one of Wes' original encephaloceles was bulging where his palate should be hitting for closure, which could have caused muscle defects. The ENT, Dr. Rasttater, who preformed the nasoendscopic was a bit concerned when he looked into Wes' airway. He has begun to snore lately, but nothing significant. I have seen extreme and Wes' breathing has never been completely peaceful, so it is difficult for me to judge. He would like a sleep study before deciding on a palate surgery.
With Wes' anatomy the ENT is also concerned about how his jugular veins run, which would be a concern with his VPI surgery, also a rubbery nodule in his neck. He will look at both during his next MRI and will schedule a broncoscopy while he is sedated.
Beyond all the medical info, Wes’ nasoendoscopy was quite an experience for all involved. Basically the Dr. Rasttater inserted a scope with a camera on the end. Wes is then suppose to say specific sounds, apple, baby, pepper, suzy…instead Wes cried and scream. Eventually when it looked as though all hope was lost, the speech therapist just went with him and had Wes start yelling, “take it out” then she was able to squeeze in a few of those key words. The results showed that Wes’ palate and pharyngeal walls (throat) are not moving enough to close of his nose.
For now there remain many questions, as I imagine will be the case for a long time. Now I face the challenge of balancing and not letting these questions and fears over run today.