Medical Mystery
Dear friends and family,
After a two week lull between appointments, Marisa and I were back at Johns Hopkins on Tuesday for another post-surgical examination. The good news is that Marisa's calcium level has consistently remained at a normal level! Her parathyroid glands are beginning to function well on their own. (These are the glands that produce calcium, and they are often damaged in this type of surgery.) We are grateful for this improvement as low calcium was one of the problems that kept Marisa in the hospital longer than expected.
In the last few days we have been hearing a flicker of phonation, just above her whisper, on a more consistent basis. At first, this was encouraging to us. However, the medical team does not know yet if this indicates good or bad news. Throughout the appointment the surgeon and speech therapist reminded us several times that Marisa's double vocal cord paralysis is a "medical mystery." In fact, the speech therapist said, "Marisa, you are in the .001%" of patients who come out of this surgery with paralysis on both sides of the vocal folds and "we are all guessing" on the solution.
As Marisa's nerves wake up there can be various muscle responses and effects on the vocal folds. Best case, Marisa has about a 33% chance of a full vocal recovery as the vocal folds can improve significantly even from one day to the next. Worst case, is what the medical team referred to as "synkinetic recovery," meaning the muscles that push the vocal folds closed could overpower the muscles that open her vocal folds. If these muscles continue to grow stronger than the others, her ability to breathe will deteriorate. These patients are typically treated with a tracheotomy. At this point, after being examined extensively with a camera, Marisa is showing the "beginning signs" of this synkinetic recovery.
This came as a surprise to us as Marisa already narrowly escaped a tracheotomy during the complications after surgery. We thought this was behind us. At the same time though, the speech therapist and surgeon remain cautiously optimistic as vocal fold recovery can be a bit unpredictable. The medical team does not have a viable solution for prevention at this point, so we will continue to wait and pray. Marisa's case will continue to be used in the international study that is working toward solving this medical mystery.
Please join us in praying for Marisa's full vocal recovery and open airway. She is missing most her ability to sing and to more easily speak to our children, family, and friends. With everything going on, I can tell you that Marisa has not lost her positive attitude. It is pretty amazing to witness. Of course she has moments of frustration, but she is focusing on the things for which she is grateful. I see her holding firm to this promise from God: "Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go" (James 1:9).
We will return to speech therapy in three weeks. At about that same time we will also meet with the endocrinologist who will orchestrate the radioactive iodine treatment plan. The results from that treatment will let us know if cancer has spread anywhere else in her body.
After a two week lull between appointments, Marisa and I were back at Johns Hopkins on Tuesday for another post-surgical examination. The good news is that Marisa's calcium level has consistently remained at a normal level! Her parathyroid glands are beginning to function well on their own. (These are the glands that produce calcium, and they are often damaged in this type of surgery.) We are grateful for this improvement as low calcium was one of the problems that kept Marisa in the hospital longer than expected.
In the last few days we have been hearing a flicker of phonation, just above her whisper, on a more consistent basis. At first, this was encouraging to us. However, the medical team does not know yet if this indicates good or bad news. Throughout the appointment the surgeon and speech therapist reminded us several times that Marisa's double vocal cord paralysis is a "medical mystery." In fact, the speech therapist said, "Marisa, you are in the .001%" of patients who come out of this surgery with paralysis on both sides of the vocal folds and "we are all guessing" on the solution.
As Marisa's nerves wake up there can be various muscle responses and effects on the vocal folds. Best case, Marisa has about a 33% chance of a full vocal recovery as the vocal folds can improve significantly even from one day to the next. Worst case, is what the medical team referred to as "synkinetic recovery," meaning the muscles that push the vocal folds closed could overpower the muscles that open her vocal folds. If these muscles continue to grow stronger than the others, her ability to breathe will deteriorate. These patients are typically treated with a tracheotomy. At this point, after being examined extensively with a camera, Marisa is showing the "beginning signs" of this synkinetic recovery.
This came as a surprise to us as Marisa already narrowly escaped a tracheotomy during the complications after surgery. We thought this was behind us. At the same time though, the speech therapist and surgeon remain cautiously optimistic as vocal fold recovery can be a bit unpredictable. The medical team does not have a viable solution for prevention at this point, so we will continue to wait and pray. Marisa's case will continue to be used in the international study that is working toward solving this medical mystery.
Please join us in praying for Marisa's full vocal recovery and open airway. She is missing most her ability to sing and to more easily speak to our children, family, and friends. With everything going on, I can tell you that Marisa has not lost her positive attitude. It is pretty amazing to witness. Of course she has moments of frustration, but she is focusing on the things for which she is grateful. I see her holding firm to this promise from God: "Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go" (James 1:9).
We will return to speech therapy in three weeks. At about that same time we will also meet with the endocrinologist who will orchestrate the radioactive iodine treatment plan. The results from that treatment will let us know if cancer has spread anywhere else in her body.
Thank you again for your prayers and support. We are incredibly grateful for you!
Love,
Matt & Marisa
Thankful for your sharing this courageous journey and testament. The prayers will continue that this medical mystery will become a miraculous recovery that God can be shown as the designer of it.Much love to all.
ReplyDeleteI really thankful to get this update, to no how I can continue to pray.
ReplyDeleteGood Morning dear friends. We expect to go to Wyndridge on Sun. 7/15. I'll text you with
ReplyDeletethe time after we see the weather. Hope you might join us and it will be good to hear an update?
We have not forgotten to pray.