Author Topic: Chlesea update  (Read 5971 times)

chelsmom

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Re: Chlesea update
« Reply #30 on: June 28, 2009, 11:19:20 am »
Good Morning Everyone,

Thank you all for the support, warm thoughts, and much appreciated prayers for Chelsea. 

I'm sorry I've been a slacker about updating on her progress.  I'm not sure if I had reported earlier that besides Chelsea's situation, my mom was diagnosed with kidney cancer and had surgery to remove her kidney a week after Chelsea's surgery.  So, I've been busy playing the smiley face, upbeat nurse for both of them.  When I seem the least bit tired or preoccupied they both start worrying about me and not focusing on their own recovery.  I don't want that and especially because I'm fine.  I just need to get out more ofter and go walking to burn off some of that pent-up energy/stress.  My husband has been a great nurse to Chelsea also.  He is a teacher and therefore has the summer off which allows him to give her all the attention she needs.  My mom is at her own house and a couple of my siblings have stepped up to take care of most of her needs.

As far as Chelsea goes.  She was released from the hospital on June 17th.  This was a lot shorter stay (just under 3 weeks) than the last surgery (3 months) in the summer of 2006.  Her facial nerve has been affected on her right side.  Her eye closes but does not blink as often as the left eye therefore we keep it moist and covered.  Her vision is blurry so keeping it covered helps her see better.  Her swallow is good enough that they removed the feeding tube in her nose on the Friday before she was released.  The doctor really was not comfortable with going this route as he wanted her to have the peg-tube (feeding tube in her stomach) and wait until she passed the swallow test with flying colors.  She put up a stink and said she was not going to do that again-and won.  So far so good.  She just has to be careful.
She had been so sick prior to surgery that she had lost a lot of weight.  The tumor was pressing on the area that caused her to be constantly nauseated.  When she left the hospital she weighed only 107 lbs and is 5' 91/2".  She has gained about 8 lbs back and is loving the fact that she can eat whatever goes down and not have to worry about weight gain.  She has been eating tons of potatoes and gravy with slow cooked pot roast and about a whole banana cream pie a day.  I'm a little jealous. 

Because of her facial paralysis her speech is difficult to understand, although getting a little better.  We all know that the nerves will take time to heal and if they don't recover with time then we'll have to check into other options.  Her balance is off and she will be starting vestibular physical therapy soon.  I think she'll do well once she gets stronger and gains some weight.  Overall, I think she is doing great considering what she has been through over the last few years.  Her spirits are up and she just wants to get back to normal by the end of summer so she can head back to school.  She is aware that if things haven't improved by then that she can either take a semester off or tackle it as best as she can.  Time will tell.

Thank you all again for the support.  I will try to be better about updating. 

Have a great day.
Michelle 




robynabc

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Re: Chlesea update
« Reply #31 on: June 28, 2009, 03:46:33 pm »
Hi Michelle,

Thank you so much for the update.  I am well aware of how hard it is to balance the care taking of a post surgical patient.  And the time it takes.  I didn't update on Eric until a month after his surgery.  I was having such a hard time with it.  So,  I appreciate your taking the time to do that. Sorry about your mom too.   I told Eric about Chelsea and he was wondering how she was too.  As you know the swallowing issue is not as common as a long term effect so they have this in common.   Eric lost 30 pounds during his ordeal also.  The first couple of months he only ate pudding and soup.  Then went on to sandwiches and that kind of thing.  He still has some trouble sometimes with certain things but about a month ago he told me he had popcorn at the movie theater.  I flipped and was not happy about it but he said he was fine.  I still watch over him on this stuff and forget that he is careful but I am worried about things like popcorn.  Eric still coughs everyday when he eats. He just does not have the bad ones as much.  I always look at him when he coughs and he holds up the thumbs up to let me know it is not a bad one.  The bad ones only occur every few months so that is progress.  I am sure that the facial nerve was a disappointment especially at this age,  but it does take time to heal.   Eric also remembers having to take time off from school.  Sometimes I think too bad we don't live closer.  They could be a great support for each other.  

Tell her that Eric says hi or I know he will when he gets home from work and I tell him she is doing okay.  If you need any support we are here.

Robyn  
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.

MCLARKE46319

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Re: Chlesea update
« Reply #32 on: June 29, 2009, 02:05:11 pm »
So glad to hear Chelsea is back at home.  Chelsea and her family are in my prayers. 

Pembo

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Re: Chlesea update
« Reply #33 on: June 30, 2009, 07:17:49 pm »
I'm glad to hear Chelsea is doing fairly well. I had the vision problems as well. They cleared up within only a few months. My tumor also made me nauseated and I enjoyed eating after surgery. You go girl......:)
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

wendysig

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Re: Chlesea update
« Reply #34 on: July 01, 2009, 07:32:51 am »
Robyn,

I'm glad to hear Chelsea is doing so much better.  I'm also sorry to hear about your mom, but glad to hear she is doing well too.  It sounds like your husband is doing his share and it's only fair that your siblings help out, when you are so busy, after all, she is their mom too.  Remember to make time for yourself before you collapse. 

Best wishes to all,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

chrissmom

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Re: Chlesea update
« Reply #35 on: July 10, 2009, 09:29:45 am »
Michelle,
Thanks for the update.  i think about Chelsea alot.  It's interesting that both you and Robyn mention the swallowing issue   Chris had  problems with liquids and the feeding tube was the low point he reached that summer.  Like Robyn, I look at him every time he coughs when eating and remember.

About the eye:  After the 2nd surgery for the rest of the tumor (summer 2006) Chris was told that he had facial paralysis.  We didn't see anything different, even an opthalmology resident said he looked fine.  However, his doctor said that was just "tone" and common in young people.  He had the gold weight put in just days after the surgery.  It was worth it.  The procedure is reversible and modifiable. It helped him close his eye and blink better.  It isn't noticeable and he refused to wear a patch and a moisture chamber. 

Unfortunately, Chris still had dry eye problems.  He returned to college and studied more, used the computer more and our cold, dry winters here all affected his eye and he had to have eye surgery to bring up the lower lid.  Again, it's not noticeable.  He still uses moisture drops daily.

Just thought you might want this information, especially when Chelsea returns to school.

Rita

Sue

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Re: Chlesea update
« Reply #36 on: July 17, 2009, 08:34:15 pm »
Keeping Chelsea and Chris, our Magnificent Duo, in my thoughts and prayers.  AND the Moms and families....parents of Magnificent Duo's are in a league of their own.

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode