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We are back at the Dewey apartment!

Home Tomorrow!

More good news! Mandy has been cleared by the speech pathologist, occupational therapist, and Dr. Martuza. She only needs to see the physical therapist in the morning, and then the hope is to be out of the hospital tomorrow and back home to Deerfield.

She had the weight put into her eyelid and that procedure was fairly painless. The stitches will dissolve on their own, but for now, her eye is pretty swollen from the procedure as well as the aggravated facial nerve on the right side.

Keep up the positive thinking, prayers, and good energy. It is still a very long road ahead, but we are thankful for the opportunity to be out of the hospital sooner than expected.

A Strong Day 3

Day 3 has been a day of significant improvement for Mandy. She has been up and walking around the hospital floor several times and is able to sit up in a chair and have a conversation. She seems more like herself today and her pain and nausea are down and she has been able to eat a little more. The doctors still feel good about her progress and if she is cleared by the physical therapist, she will be able to go home on Saturday.

Mandy will go to Mass Eye and Ear for the weight on her eyelid later today- it should be a very simple procedure.

So, all is well here. Feels like summer time in Boston today.

If anyone is thinking about visiting, we are in the Lunder building, room 736. She is well enough to have visitors today and tomorrow.

Cheers,

Dave

day 2

Day number 2 of recovery continues to move along slowly but positively. Mandy has been moved to a regular neuro floor and out of the ICU. It’s nice to have a bright, quiet room with a city view and less machinery and space-ship like technology of the neuro ICU. She is resting comfortably now, though she has some pain in the incision area. She was able to eat a bit or turkey for lunch and has seen the physical therapist who gave her some exercises to help with her eye movement recovery. She is supposed to see someone from Mass Eye and Ear later today about the possibility of putting in a small weight in her eyelid to help her close it all the way in order to protect her eye. As her facial nerve begins to recover over the next weeks and months, she should gain increased ability to control eye closure on her own.

One of Dr. Martuza’s residents came in last night and said that her post-op MRI looked good, and the hope is to have Mandy out of the hospital by the weekend.

Mandy looks good today. She is able to talk a bit and is completely “with it,” though still very tired. She remains in positive spirits. That’s the news from MGH.

-Dave

A Collective Sigh of Relief.

I am happy to report that Mandy’s second surgery was another successful one. It took eleven hours, but the end result was a resection of nearly all of the tumor. Because Mandy’s facial nerve was so intertwined with the tumor, Dr. Martuza opted to leave a small piece of tumor in order to save the facial nerve. They will watch the tumor for regrowth with MRI follow-ups every six months or so and there is a chance that they might be able to just leave it alone forever (if it doesn’t grow back) or perhaps treat it with radiation at a later time. Either way, this small piece of beningn tumor is something that will not affect Mandy’s day to day life, and given all of the options, we are confident that the doctors made the right choice for Mandy’s long term quality of life. Given the state of her other cranial nerves after the surgery, the doctors are optimistic that Mandy’s balance, swallowing, and eye movement will all get back to normal over a relatively short period of time, but it is too early to be 100% sure of anything at this point. Because the facial nerve was aggrviated by the tumor resection, Mandy will have and does currently have some facial weakness on her right side. It is not savere, and we should learn more over the next few days about what to expect in terms of facial movement long term. My now sophmoric understanding of the ins and outs of acoustic neuroma surgery is that we should be thankful that the doctors were able to save that nerve at all. Given the size and location of Mandy’s tumor, there was a very realistic chance (about 20%) that she would permanently lose movement on the right side of her face and that the surgeon would have to sever the nerve in order to resect the tumor. We have kept those cards close to our hearts over the past several months, so it is a tremendous feeling of relief to know that Mandy has a very good chance of making significant progress and even perhaps a full recovery of facial movement.

Mandy is recovering well and sleeping a lot this morning. She will see the physical therapist and speech therapist today so that they can evaluate when she will be able to leave the ICU, but things seem to be moving along nicely so far. We will do out best to keep everyone up-dated as we know more, but for now, I think we can all unite around what a long journey this has been for Mandy, and we should all be extremelly grateful to everyone here at MGH for their thoughtful, expert, and skillful care.

Onward!

Seek the Joy,

Dave

Round 2

My Mother is visiting Deerfield. We have had three relaxing days exploring campus and cooking good meals, but now it is time to head back to MGH. Thankfully, Dave’s parents are able to drive us to Boston this afternoon. We will stay at the John Jeffries House. It is a motel maintained by Boston Eye and Ear and located walking distance from the hospital. We will stay there tonight and head to surgery tomorrow at 5:30 a.m. My Mother will stay in the city until Friday morning. Dave is currently in Florida with the baseball team, but he will be flying back to Boston tomorrow. I am sure he will be updating the blog as soon as he arrives!

I really appreciate all the kind words and positive thinking!

 

Stitches

We went to MGH yesterday to get my stitches removed and collect all of the orders for next Wednesday. I will have more blood work, a CT scan, and another, wait for it, my absolute fav, yes ….  MRI. Even though I’m not a huge fan of holding still in a plastic tube and head cage for 45 minutes, having ice-cold contrast dye injected into my veins, and being subjected to very loud noises and vibrations, the new MRI will give the doctors a ‘better road map’ of my new brain/tumor landscape for the upcoming surgery.

Our doctor told me he usually removes the center of an older person’s acoustic neuroma, but doesn’t complete the second stage of the surgery because they are such slow growing tumors. My age makes me a candidate for regrowth, so I have to have the second, more delicate surgery. The tumor has been described to us as an orange. The doctors have removed the pulp. Now they need to remove the ‘peel’. The issue with the second surgery is that the peel is intertwined with my cranial nerves. Once a doctor declares his specialty the other doctors must force him to select a metaphor to use when talking to patients.  One doctor compares my brain to an orange the other an engine, but they never seem to change the item of comparison.

Bottom line: I am feeling much better today. I am still pretty nervous about the second surgery, but I am thankful and hopeful. It feels amazing to have clean-ish hair and to be thinking about the future. Again, thank you all for your support.  

Steady as She Goes

We're celebrating the one week anniversary of Mandy's surgery and it is truly remarkable to think how far along she is in her recovery. Today, Mandy walked on a treadmill for 20 minutes and her pain level is down overall. We go in to MGH get the stitches out on Thursday. Still a long road ahead, but we're thankful and amazed at how things have progressed thus far. The Deerfield community continues to be a strong support network for us as we transition back to campus life.

Deerfield

We are back in the Dewey apartment. It feels amazing to be wearing my own clothes and be siting in my own bed.

Thank you so much for all of your support.

More Good News

Mandy is having a great second full day of recovery. She went out and walked the hallway with the physical therapist and has no balance problems. Dr. Martuza visited with us this morning to let us know that he was happy with how her MRI looked yesterday and that he expects she will be able to go home tomorrow. We have two follow-up appointments scheduled for March 8th and March 14th in preparation for the 2nd surgery.

Mandy has been able to eat some soup and ice cream today and her neck pain is much more tolerable than yesterday. Her vision is a little blurry, but nothing worrisome according to the doctors. She also has a bit of numbness on the right side of her mouth, but that has been improving over the course of the today.

She has been 'unplugged' from all of the vitals monitoring, and it's been nice to visit her with less equipment on today.

The consistent message from everyone continues to be that the surgery and recovery have been a tremendous success and that she can now focus on healing well and gaining strength for part 2.

We are still waiting for an open bed on a regular floor so that she can be moved out of the ICU. Maybe it will include a view of the River Chuck...