Saw a Neuro Opthamologist (the one Andrea saw in Lansing before surgery – we were told by U of M it would be June until we could see one there and I did not want to wait) today – not much to tell. They did a 2 hour long exam then we waited for 1 1/2 hours for doctor and he evaluated her for about a 1/2 hour and we were out of there. He said not to loose hope that there is a 1 in 10 chance of her sight returning in her right eye, but that it would not be like it was before surgery.He said to wear her reading glasses during school and computer work and to obtain a pair of safety glasses when outside to protect the left eye. Other than that he said Andrea is a trooper to keep getting better and see him in 3 months. Now this morning I receive a call from Andreas Neurosurgeon doc office at U of M and they have scheduled a Neuro Opthamologist appt for Thursday the 8th of may at U of M. Then15 minutes later I receive a call from them again canceling that appt because Andreas Neuro Surgeon docwants her to see a different Neuro Opthomologist so we will wait to hear when that appt will be. Andrea is continuing to progress everyday – although she seems to have a lot of swelling in her right eye today. She is really moving along on her school work and wants to return to school next week – she will try going for two classes in the morning and see how tired she gets. Her mind has alot of things it wants to do, but her body doesn’t agree yet. Thanks for continuing to check in on Andrea – we plan to keep the blog going…
Archive for April, 2009
Tuesday 4-28-09
Categories: Andrea | April 28th, 2009 | by diane | no comments
Andreas appt for today has been changed to the 11th of May so that we can combine the appt with the Oncologist. We will learn all about radiation on the 11thand have a recheck with Dr.. Her fluid and pain are getting less everyday, but she gets tired very quickly – tomorrow it will be 3 weeks since the surgery. Some of her stitches are coming out now and it is looking real good. She is starting home bound school work, so we are now noticing blurred vision in her left eye. Not sure what to make of it, may be the right eye trying to see something (she is right eye dominate) – will see if Dr. wants her to see the neuro opthamologist. Other than that everything is improving day by day.
Benefit Success
Categories: Andrea | April 27th, 2009 | by diane | no comments
First of all a big HUG and THANK YOU to Angie, Amanda & family, Carol, Lauren & Gil for having this benefit for Andrea and our family – words are not enough to show them how greatful we are to have such loving friends in our life. They worked very hard and everything was so wonderful and a huge success. The food was great and I have never seen so many delicious desserts. Also a big HUG and THANK YOU to all the behind the scenes people who worked so hard: like Sye, Kevin, Nan, family, friends, neighbors and the list goes on and on and an especially big hug to Grammy & Grandpa. We know everyone worked together to make this possible for us and I have been all weekend trying to put into words how to express how grateful we are. I do not want to leave anyone out, but know I cannot list everyone. Then of course a huge THANK YOU to everyone who attended the benefit like family, friends, neighbors, co-workers, customers, school staff, 4-H family, scouting friends, and community – you made it such a big success and a great time. As I look over the guest book I am reading some names of people I did not get a chance to see or talk with and I am sorry for that – we are estimating that we had over 200 people attend and many more that could not attend that donated auction items, money and/or desserts. Setting aside the reason for the benefit it was a very enjoyable evening and Andrea truly had a fun time. It was great seeing her talk, laugh and smile with everyone and get her mind off from her pain. We also need to thank all of our family, friends, community & businesses who donated food and auction items to make this benefit a possible. In closing this journey for Andrea & our family has been made much easier with all of the support from our family, friends & community The benefit has given us a happy memory to add to this long journey and we truly could not have gotten through it without all of you… Photos will be added soon.
BENEFIT
Categories: Andrea | April 24th, 2009 | by diane | no comments
The plan so far is to allow Andrea to pay a short visit at the benefit Saturday . She is maintaining at a grade 7 in pain on her current meds, but the swelling and her overall recovery is improving a lot. We do not know how long she will be able to stay, due to her hearing sensitivity and getting tired quickly – but she really would like to be there and see everyone. I must ask that we save hugs and kisses for another time, it is still painful for her to be touched on both sides from the surgery. Hope to see you all there. We can’t thank everyone enough for your love and support of Andrea and our family, to my two best friends for organizing the benefit and all the people who have donated, helped out and to everyone who is attending – your love and support is amazing.
City of Sanibel Florida
Categories: Andrea | April 22nd, 2009 | by todd | no comments
We would like to thank everyone at the City of Sanibel for the generous gift and wonderful card full of well wishes, Andrea read each one and will add the card to her scrapbook. She feels very special that you care and we appreciate your generosity.
Thank you to AIS
Categories: Andrea | April 22nd, 2009 | by todd | no comments
Many Thanks to the people at AIS for the cookie bouquet that was sent to Andrea. She loved it and the card. Big smiles and of course the cookie’s were delicious.
Tuesday 4-21-09 Appt.
Categories: Andrea | April 21st, 2009 | by diane | no comments
Today was our 1:00 appt with the neurosurgeon to discuss Andreas slow progress #7 pain and remaining swelling on her forehead, right temporal lobe and her continued shoulder pain and hyper sensitive skin. It went well and she is actually smiling and laughing again (day two), despite the pain. She continues to have numbness on her right forehead and temporal lobe but he is optimistic that it will return soon. On the other hand he is pessimistic that the sight will not return in her right eye – she continues to see decrease in light when shined in her eye, he said today he had to cut very deep into the 6th optical nerve – that is where the tumor began growing. Andrea is accepting it (not that she has a choice), but wishes it were not so and still hopes her sight will come back. When asked if we will pursue surgery with a neuro opthamologist – he said it may be a risk to the left eye and he suggests leaving it alone. He also said we would begin our many appts. with the oncologist next week and we will also have our 2 week (after discharge) appt with him next week. She actually did very well today – yesterday she slept for 6 hours from noon to dinner, today she even attended an awards event at her school – I think looking forward to the awards event is what kept her going today. We will see how this big day affects her tomorrow. Thanks for checking in Andrea today.
Surgery Procedure
Categories: Andrea | April 20th, 2009 | by diane | no comments
Alot of people have been asking how the actual surgery was performed – although I do not know a lot of the technical words they used (it is a lot to absorb) I can explain the basic technique, leaving out the gory stuff. They of course began by the obvious sedation with 3 IV lines, they marked the right side of her head with an M (Andrea had requested an S) so not to operate on the wrong side. They made a cut (beginning at 9:20 am) starting at the middle of her head, about where a center part of your hair would be and cut along the hair line in a C shape to the bottom front of her ear lobe. They began peeling the layers, cutting through the nerves, muscles, etc. as they went. When the skull was exposed they made several pilot holes in the temperal area of her skull so they could use a saw to cut an egg shaped piece of skull away to get at the interior of the head. Moving the brain, arteries, etc. out of the way they were able to see the surprise that it was inside the cavernous sinus, carefully opening the cavernous sinus they then got the second surprise it was a schwannoma. So the actual work began and the doc said it came out in tiny pieces. He was very careful to work around the artery to avoid paralyzing her and to preserve the optical nerves involved. He said he had to leave some of the tumor on the artery and the 6th optical nerve that will be radiated in several months. This kind of tumor loves nerves and it actually began inside her sixth optical nerve, that is why she may end up with some sight problems in the right eye – too early to tell. As you know he operated all day and began closing around 9:30pm, which took an hour and a half to put everything back and only about 50 stitches. When putting the skull piece back they attached it with titanium plates and screws, which when the swelling goes down in her head he said she will be able to feel the heads of the screws. We have to listen so closely to everything he is saying, I have not asked how large the skull piece was or how many plates or screws – maybe Andrea will ask at our real checkup appt on the 28th of April at 1:45. So hope that helps answer a few questions – In closing it was a long day for everyone. It went kinda like this…We arrived at the hospital at 6:00 am began the check in process – was able to stay with family until about 7:00, then Andrea, Todd and I went into surgery prep where they put her in a beautiful hospital gown, drew blood, started one of three IV’s, gave her happy drugs, introduced us to 1/2 the team and wheeled her away at 7:40am to finish the prep and we joined our family and friends for the long wait. At 9:20am we were told they had begun cutting and every 2 hours after that they updated us telling us everything was fine and the plan was to be done at 5:00pm. At 4:00 pm they told us it would be 6:00pm and continued extended one hour at a time until they told us they would begin to close at 9:30pm which should take 1 1/2 hours and then a one hour MRI and then Todd and I could join Andrea in recovery. Around 11:00pm or so Doc came to us in the waiting room and explained about the two surprises and that everything went well. Family went to there hotels, friends drove all the way home and we waited to be called to recovery. She seemed very alert and does remember us in recovery, we then were put in ICU-1 and I stayed with her while Todd went to Ronald McDonald House around 1:00am. Andrea and I talked until about 4:00am and she finally went to sleep, we sleeped until 6:30 when the docs came in and examined her. I will spare all of the other details of the next days, but they are long and full of docs, pokes, alarms and sleeplessness.
MONDAY 4-20-09
Categories: Andrea | April 20th, 2009 | by diane | no comments
Just heard from the doc ofc and we will return to Ann Arbor for a 1:00 appt and possible testing on Tuesday 4-21-09. Will post what we find out. Had a nice weekend, but pain is still a 7. The seizure meds and continued pain meds seem to be keeping it from getting worse. Your continued emails, phone calls, cards/gifts and prayers are very appreciated – her laugh and smile when receiving them are amazing. Thank you
Thursday 4-16-09
Categories: Andrea | April 17th, 2009 | by diane | no comments
Hated to bother Andreas Neurosurgeon, but glad I did. Gave his office a call this morning requesting Doc call me regarding Andreas increased pain and inform him of the ER visit. He called back within the hour and also seemed very concerned and assured me it was not a bother and to call anytime. So, he wanted to evaluate Andrea and he wanted to do it asap – so we called Grammy and hit the road and Andrea was being examined by Doc at 2:40. He said her shoulder is for sure very painful and should be – he feels that not only is she feeling muscle and bone pain from being propped up for over 14 hours but that possibly a main nerve that runs down her neck into her shoulder was pinched off that entire time. He prescribed her some seizure meds that will hopeflly help calm the nerve, along with the muscle relaxant. He also wants her to continue the pain meds to try and get below a 7. He said she is progressing slower than he would like, but we have to consider the length of the surgery. She still has a lot of fluid in her forehead and right side of her head, but her face swelling is almost all gone and she smiled more yesterday (happy pills). Her right eye still sees nothing and he said there will be a point when we won’t wait for anymore improvement and talk about our options, if any. But we are very hopeful, she does see some lite from his examination lite. He showed us the MRI that was done after the surgery – and the artery and optical nerve that was involved. He is an amazing surgeon and did a very good job without paralyzing her. The radiologist report even said no tumor fragments were found – but Doc said he knows there are some in there, he saw them, he left them – because it was to risky to remove anymore of the tumor from the artery and optical nerve. So months from now will be radiation. The report came back from pathology and IT IS NOT cancer. We will go back for an appt next week – doc told us on Tuesday, but his assistant said he has surgery that day – we will have to wait for a call to know for sure. But if her swelling is not gone, she will have a CT that day also. It is still a road of wait and see and we do not know how long of a road yet. We just want Andrea to be without pain. She so badley wants to attend 3 upcoming inportant events – but she has very sensitive hearing right now and cannot handle much sound. Her attempts to do school work have failed and she worries getting behind. Today we are going to try very hard NOTto talk about Tumors, docs, pain etc. and get our minds somewhere else. If nice weather with no wind we will take a walk outside. We are getting a new roof on house, barn and shed and she had picked out the color one day prior to surgery – it looks very nice. We are very lucky our home insurance policy was a good one. Back in December a big wind storm ripped through our neighborhood and did a lot of shingle damage – so it was deemed a disaster area and insurance is paying for 100 percent replacement, 3 other neighbors may also be getting new roofs. Well, that is all for today.
ER
Categories: Andrea | April 15th, 2009 | by diane | no comments
Well, home 48 hours and already a visit to the ER. Her pain had increased to a 7 and she could not sleep. Her left neck, shoulder, chest and arm became hyper sensitive and burned when even her hair touched it – she could not take the pain any longer. So a call to the Neurosurgeon resident at U of M at midnight was made and they wanted her to go to the ER for blood work (which turned out fine) and IV pain meds. The Neurosurgeon explained that the hyper sensitive to her skin was pain out of control and only a strong IV med would decrease it. Our ER visit couldn’t have went better and they worked closely with U of M on what to give Andrea. Her pain went down to a low 6 and we were sent home with a script for muscle relaxant (this will make her not care about her pain, and easier for her to heal) – and we now have orders to go back to the every 2 hour pain managment for atleast a couple days and see if we have made it over the pain hill. We are supposed to be pain free by her two week checkup – something we all are looking forward to, especially Andrea. We returned home at 4:30am and Andrea is still sleeping. I will wake her at 10:00 and access how she is feeling. It has to get better soon. Hope everyone checking up on Andrea has a great day….
Tuesday 4-14-09
Categories: Andrea | April 14th, 2009 | by diane | no comments
An end to a long first nite at home. Adjustments to not having 4 different meds, plus pain management pills every two hours. We now only have pain management pills every 4 hours, Andrea is ready for them within 2 hours. Her pain has increased from a 4 to a 6 as of Saturday nite and last nite to a 6.5. A call to the neurosurgeon resident at 4:45am this morning went well, but said it will just take more time to control the pain. Both ears have pressure now, jaw still hurts and off course her front and back of her head. She has had continued shoulder and neck pain, due to position during surgery. Hoping she gets some relief soon. We cannot receive visitors yet, but phone calls help jaw movement and emails help too. Thanks for caring.
RELEASED 4-13-09
Categories: Andrea | April 13th, 2009 | by diane | no comments
You won’t believe it, we have been released and are now home 7:30 pm. Will add more on Tuesday.
MONDAY 4-13-09
Categories: Andrea | April 13th, 2009 | by todd | no comments
A restful nite, but rude awakening. At 7:10 Andreas doc and staff came in and within 5 minutes woke Andrea, took off her head bandage, shined lite in her right eye (which by the way she can now see if the lite is on or off, but it is pink and no dilation or sight yet) and answered 2 questions for me and were gone. They have a busy case load today. Our plans are to walk 5 times, increase breathing treatments by 5 and do an activity. Grammy is helping us alot and we hope we can go home soon. All staff tells us that healing goes faster at home.
BUNNY DAY
Categories: Andrea | April 13th, 2009 | by todd | no comments
Today was a busy day: a visit from aunt/uncle/grampa and we kept grammy, 3 phone calls, 3 emails, 3 short walks, 2 naps. The swelling has decreased a lot over Saturday nite, which was long and not very restful. Our new roommate and friend is from Africa and only speaks french – she had surgery also and is in a lot of pain, but does not want to take her medicine. Andrea has learned some french to help her to take her pills. Andreas pain has increased from 4 to a 6 and her jaw and right ear continue to be very painful, phone calls from friends really help Andreas spirit and movement of her jaw – for a faster recovery. Her hearing is very sensitive. A family that was at Ronald McDonald house for 2 months/ 2 years ago made a huge turkey dinner for everyone, so todd fixed to go boxes for Andrea and I – it tasted so good. That is about all for today, Monday we will see our doctor. Today Todd has to leave to return to work so that we can keep our much needed insurance and paycheck. We miss him very much, but will talk on the phone often. Thank you for continuing to check in on Andrea – we are very thankful you care so much.