In This Together ~ The Craigs

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 ...

Dear friends and family, We met with Marisa's surgeon on Tuesday for the first time since she was discharged.  Below is the update on the items that many of you have been asking about.  We are grateful for your care and prayer! Tuesday at Johns Hopkins. Surgical report: In addition to Marisa's thyroid,  58 lymph nodes were removed with 15 of them being cancerous.   The surgeon again confirmed that he was able to remove all cancer known to him.   The incision is healing well. Vocal folds (cords): The doctor examined Marisa’s vocal folds with a camera, and he showed us their paralyzed position resting partially open (and partially closed).  [The vocal folds are designed to meet in the middle of the larynx and be able to fully open and close.]  He thinks they look slightly better than just after surgery.    This partially closed position explains Marisa's airway restriction.   At this point the surgeo...

Dear friends and family, Thank you again for your care and attention around Marisa's recovery.  We feel blessed in the midst of these challenging times.   Marisa has been feeling nauseous throughout this last week.  This made it more difficult to keep her medication down but she has been able to stay on schedule.  This weekend there was some improvement with the nausea but it is still lingering. On Tuesday, Marisa will have her first follow up appointment with the surgeon since being discharged from the hospital.  The time between the surgery and the follow up appointment is meant to allow initial healing to take place and swelling to lessen.  We look forward to this appointment as further testing will likely provide more information on Marisa's vocal fold (cord) paralysis and hampered airway.   In the meantime, Marisa began  speech therapy this week.  It was helpful to launch this series of therapy sessions, however fu...

Tuesday night I brought Marisa home after being discharged from the hospital!  In her last day there her calcium level held steady, and even slightly increased for 24 hours straight.  The kids are happy to have Marisa back home.   It is amazing to have pictures of Marisa sitting up and out of bed, eating, and smiling.  They are a stark contrast to the pain and immobilization she was experiencing just a few days ago.  Just before we departed the hospital yesterday, one of the doctors who was assisting with her surgery came by to check on Marisa.  He sat at the end of her bed and as he shared details about her surgery, reminder Marisa a couple of times how worried they were for her just after the operation: labored breathing, paralyzed vocal cords, and difficulty waking up from anesthesia.  We were told on multiple occasions that this could have easily gone in a different, more perilous, direction.  We now feel particularly close t...

Dear friends and family, Thank you again for your prayers and well wishes for Marisa.  We are also grateful for all of the ways you have cared for our family: sending cards, lawn mowing, mulching, meals, visits, and many other unique ways.  Update... With the assistance of IV calcium, Marisa's levels hit a high of 9 points yesterday.  (Healthy range is 9-12).  With now being off of the IV since 4pm yesterday, her calcium levels are slowly dropping again.  The doctors are going to "wait and see" if boosting the amount of oral calcium will help.  Marisa will remain in the hospital until her levels normalize.    Breathing treatments are also continuing multiple times a day.  Her left ear and the left side of her face to her mouth are numb, which is causing her smile to be a little crooked.  She is not bothered by those things, though, and it could return to normal with time.   Marisa has had the ability to eat, but the opti...

Dear friends and family, Thank you everyone for being on our journey with us this far. Receiving all of your love and feeling covered by your prayers has been providing me with continual encouragement. This surgery has been much more involved and has taken some unexpected turns, and I am so thankful to be on the other side of the most difficult part of it. Below, Matt will explain those ups and downs. I just want you to know you all mean so much to me. I love and adore my family and friends, and I thank you for reaching out to me. I would write back to each one of you individually if I could, but this blog will have to do that for me for now. Love, Marisa ----- The past thirty-six hours has been a bit of a roller coaster.  Marisa has made much progress with her breathing.  She continues to receive nebulizer treatments and uses a mask for humidified air.  She has been more awake and alert and able to walk on her own a little more than yesterday. The medical team ...

Dear friends and family, This has been a tough, and at points scary, recovery from the surgery.  The surgical team operated longer than they first expected due to complexities with the nerves in Marisa's neck.  She has had difficulty with her breathing and both vocal cords at this point are paralyzed.  The paralysis and swelling in her airway made breathing difficult and she was admitted to the ICU last night.  She has had moments when it is hard for her to get enough air and she was wheezing most of the time through the night.   Marisa had  a Nurse Practitioner, RN, and a Nurse Anesthetist working on and observing her full time during this nine hour timeframe before being admitted.  Throughout this entire time, just prior to being admitted, there were at least two of these staffers sitting with us by her bedside at all times.  Of course, there were several visiting doctors throughout the night trying to get a handle on her breathing is...