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Tuesday Update at 8:54 pm CT

There have been a lot of things take place today, so I will try and remember everything. The feeding tube was removed this morning before they took Heather down for her swallow test evaluation. She was able to pass the swallow test, but with restrictions!!!!!! However, she is on a strict diet of soft foods only and any liquid form has to be thickened. Her swallow has definitely been affected since the surgery. Though the feeding tube is removed and she has been given the okay to eat, it will still be a cautious road with eating and drinking until her swallow is corrected. There are still great concerns for proper nutrition and dehydration possibilities. Also, she can still aspirate very easily which could lead to serious complications as well.

Dr. Neimat had given us the final report from her MRI that she had last Friday. In the report it is evident that Heather had a stroke on the left hemisphere, but he said he anticipated that being a possibility. While he was in surgery, he said he had no choice but to compromise an important blood vessel in order to complete the disconnection in this area of the brain. However, the stroke was left sided and no damage was shown to the right hemisphere. Everything else in the MRI looked as he imagined it would look. There were no signs of anything else that would show cause for alarm. Heather seems to have done well since the removal of the Brain EVD (drain). She has not shown any symptoms that would indicate that her brain shunt, from her surgery in 1996, isn't doing the job of draining the excess fluid. The main purpose for the MRI was to see if there was any enlargement of the ventricles after a 24 hour period since they had clamped the EVD, and everything appeared normal giving them the assurance that the EVD could be removed.

Heather is getting closer to going to a Rehabilitation facility, but there are still a few issues to resolve before we feel she is medically ready for aggressive therapy. We were told this morning that if she passed the swallow test that she would possibly go to rehab this afternoon. We feel that this is too soon, and though she has improved greatly, there are still some issues that need to be addressed. We have been greatly concerned about her voice and asked for an ENT (Ear, Nose, and Throat) Specialist to evaluate her. So, this afternoon an attending resident of ENT did a procedure and ran a scope down her throat to see if there was any damage to her vocal chords. The attending physician reviewed the video from the resident, but he wanted to repeat the procedure himself to get a better look. He even asked Pastor Cape to look into the scope as he explained what he saw. What they found was that Heather's left vocal chord is not moving, which means it is paralyzed. In order to get sound from your vocal chords, both of them move together and that vibration is what gives us our sound. If one of the vocal chords is compromised, your voice can't get above a whisper. It affects your swallow especially for liquids and you lose a lot of air making it very tiring to speak. He doesn't really know what has caused the paralysis, whether it was the surgery, or from being intubated, or from 16 years of constant stimulation of the Vagus Nerve. Now we have some answers to problems with her swallow, and her voice that can't get above a whisper. The good news is that she can have a minor operation to inject some medication into that left vocal chord that will cause it to move over to meet the vocal chord on the right. This will give the vocal chord time to recover. It will immediately improve her swallow and it will also improve the sound of her voice. He explained that because the left vocal chord is paralyzed, air is escaping every time she speaks and that is why it takes such an effort for her and she gets short of breath. The medicine will wear off in about 6 months and if the left vocal chord hasn't recovered by that time, other options will be discussed. This is probably the reason why she has been very quiet and hasn't had much to say unless you ask her a question!

The ENT doctor will be speaking with Neuro Surgery to discuss doing this operation as soon as possible. He doesn't think we should wait to see if the vocal chord will recover on its own, especially since Heather has had trouble with her swallow as well as her voice and breathing problems. We will let you know what they decide. The ENT doctor wants it taken care of quickly because he said it would interfere with her ability to even do rehab if air is escaping because of a paralyzed vocal chord. This would cause her to be breathy and unable to perform like she needs to in order to recover. Dr. Khalil is back in town and came by to discuss decreasing some of her seizure medications and what we need to do to transition from IV meds, to those that can be crushed and put into her food until her swallow returns. He assured us that he would be accessible and still making decisions regarding her neurological care even when she transfers to rehab. She has just received her first official foods for supper and she's excited, chopped turkey and dressing with veggies and thickened orange juice!! Yum!!!

One of the things that we have learned through twenty years of seeking medical help for our daughter, is that we must be actively involved in helping to advocate for our loved ones, especially if they have physical or mental challenges. Since Heather's surgery, my husband and I, as well as our daughter, Hannah, have each been actively involved in Heather's care this time as well. We have been very pleased with the professionalism and overall care that has been given to our daughter here at Vanderbilt. However, several of the medical personnel have commented that they appreciate being able to speak to us in medical terms and not just in general terms. They have told us repeatedly that no one knows Heather better than the ones that have sought to care for her throughout the years. With that in mind, my husband and I both agreed to again ask more questions about Heather's inability to swallow and speak as was previously mentioned. We believed that something was being missed or overlooked, so we asked more questions. Many things can be overlooked or misdiagnosed when assumptions are made without properly investigating the problem. Had we not asked for the ENT Specialist, we would not have found out that Heather's left vocal chord is paralyzed, which again is contributing to her swallowing difficulties and her voice and breathing problems. Had we gone to rehab without this knowledge, she could have faced more issues and setbacks. My husband has said, "Just as the Lord has given us wisdom in the past, He still desires to give us His wisdom today. That kind of wisdom comes because we ask for it, as James 1:5 says, "If any of you lack wisdom, let him ask of God, . . ." Praise the Lord for the Wisdom He provides! Thank you for continuing to pray for Heather and for our family in this area.

"If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him." James 1:5

(Dad has been with Heather during many different procedures through the years)

( Heather's room wallpapered with cards of encouragement)


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