chris - The Latest

[chrissmom]

Hi All,
We're still here in Pittsburgh.  We have been here all summer.  Chris has had quite the journey. just when you think you take one step forware, you get two steps back.

1.  After the first tumor surgery to get the pressure  off the brain stem, Chris deveoped an infection and what appeared to me to be a spinal fluid leak.  We ended up coming back in for an emergency operation on the incision area to clear the infection out.

2.  Then after that, the shunt began to fail and he developed hydrocephalus again.  The tumor was still too large and he wasn't draining the csf well.  Another emergency surgery to remove the shunt and put in a drain.  Then the csf became infected but they caught it right away with antibiotics.  He was kept in the neuroICU for 2 weeks until the latest surgery.

3.  Tumor Surgery Part II-  They got the monster 5 cm + tumor and it took 14 hours.  Chris says 16 hours considering pre-op and recovery room. It had impacted every nook and cranny of the brain stem and they got as much as possibe.  The tumor wasn't too vascular, it was more fibrous. In moving him to the ICU, the drain accidently came out, so we have  to get CT Scans frequently and MRI's.

4.  Current Status:
  In Neuro-ICU,  he has a fast heart rate but that has been a problem thru all these surgeries.  He has high blood pressure too- we didn't have any of this before.
He is extremely tired, but wakes up easily and has al cognitive functions.  He is currently running a slight fever, they have had him on several antibiotics and continue to do so.  He has a helmet (pressure bandage over the ear) and a patch over the eye (moisture chamber)...ARGGG....He stood up today and promptly went back to bed.  I don't know if he can swallow yet, still has n/g tube. I dind't think the facial expression looked bad the first day but with the swelling, his face is drooping a little.  This may recover in time.  We still have alot of hurdles to jump and much to discover but the monster tumor is gone!

[Taylor]

I would like to meet him.

[Taylor]

No one my age knows what it's like

[Larry]

Chrissmom,

Hang in ther. Chris has had to endure an awful process but he appears to be a fighter. We are all with you.


Laz

[Larry]

Taylor,

Try not to be too concerned that people your age don't understand what you have gone through and what you are going through. Age doesn't seem to make a difference. I'm approaching 50 and a lot of people still don't understand nor are they willing to accept the impact that AN surgery leaves you with. Unfortunately ignorance and prejudice are all too prevelant in our society.

It certainly is harder for you as a teenager because of the peer pressure bit. Just try and be yourself where you can and when you can't participate in something then you do something different.

Laz

[chelsmom]

Hi Rita, Chris and Family,

I'm so sorry that Chris has had to go through so much.  It is amazing that Chris, Taylor and Chelsea all had such large AN's and have had to endure so many complications.  I know everything seems daunting but time is going to be the best cure for all of them.  I keep telling Chelsea that every little step forward is a hugh stride for her recovery.

Tonight the surgeons came in to check on her and plugged the trach which allowed her to be able to squeeze out words that faintly sounded like her voice.  We were all thrilled.  It has elevated her spirits and she once again feels like progress is being made.  She can also feel a little bit of a swallow.  She is still very weak though.  It's really hard for her to do the physical therapy because she is so tired but they push her and I know it is best for her in the long run. 

Here is what we have experienced on the heart rate front.  One neurosurgeon said that it was a sign of dehydration and that she needed more fluids. Just after that she went  to rehab which is under a different attending doctor and he didn't think that was the problem.  After a week of no explinations for her heart rate climbing the cardio docs put her on more fluids and now it has come down from the 140's to the low 100's.  Then they took her off the fluids as it messes up the sodium levels which can bring on other problems.  But tonight the surgeron ordered her back on the fluids with an adjustment of sodium and that will be nightly for a while.  It seems to work for her.  The cardio docs think the low 100's are still too high and are wanting her on a mild beta blocker to slow down the heart.  Because her blood pressure was really low after Friday's surgery they put it on hold for now as the medication also lowers the blood pressure.  Another thing the cardio doc said was that when she was admitted her heart rate was in the high 40's to low 50's.  Everyone thought this was great and due to the fact that she was a soccer player in good condition.  But it turns out that when one has all the pressure on the brain due the the fluid build-up that it forces the heart rate down.  Once the pressure is released by the shunt the heart rate climbs as the pressure goes down.  He said that it takes time for this to level out.  I don't know if any of this would be of any help but it's what we have experinced so far. 

Hang in there.  Summer is not over yet.  Hopefully it will only get better from here. I feel that since I had no control over the fact that Chelsea was inflicted with this tumor that this is one of the best summers I could ask for because she has made it through the surgeries and is still here with us.  H*** would have been to go on without her.  This is a life changing event and I'm sure anyone that has had to endure this becomes stronger and will appreciate every day more than they ever thought possible. 

My e-mail is salyer_ryder@yahoo.com if you ever want to write or discuss their progress. 

You are in my thoughts,
Michelle

 

[Battyp]

Wow, such hurdles for all!

I know for me and hoping this provides some answers...I never had problems with my blood pressure and was put on 4 different meds while in recovery to get my heart rate and blood pressure under control.  That was in August and by Decemeber I was tapered off all blood pressure meds!  Sounds like something that just might go along with the surgery with brain stem involvement?  Would be nice if it was that simple 

Taylor I truly love your new picture, you are such a lovely girl!  I know this is tough as it's tough with my peers and their understanding what I'm going through.  I keep praying for all that we can overcome all our hurdles and find peace and passion with life again!

[Sue]

Michelle and Rita you are the best thing that could have happened to two lucky children. You are truly an inspiration. Maybe, Taylor, when Chelsea and Chris are back on their feet, you guys can all e-mail each other and have your own support group for the teen-young adult AN patients. Perhaps this could be a subject that the ANA newsletter could address sometime - the impact AN's have on younger patients. 

Still wishing you all, all the best...

Sue in Vancouver

[amymeri]

When I am feeling pretty sorry for myself I think of the mom's out there who are holding vigils over their children and I am thankful that I don't have to watch my children go through this.  I know the mothers would trade places with their children to spare them the experience, and I know equally, that their children are so, so, so lucky to have their mothers watching over them.  Even at 38 I needed my mothe--who came and cared for me and my family for 8 weeks.  I guess you never outgrow being mothered!

My heart and prayers go out to the mothers (and fathers) who are watching over their children.  And my prayers go out for Chelsea and Chris and Taylor who are too young to have to face such a burden and so amazing for their strength.

Amy

[Sefra22]

My husband and I have been reading all the updates on Chris and Chelsea since I found this forum a month ago. We think about them and their families alot. We check daily for news and updates on their conditions. They sound like great kids who have had more than their share of suffering, and we hope things will turn out o.k. in the long run.

You are right, Amy, we never outgrow our mothers. On Tuesday, my mother  (age 64)was taken by ambulance to the ER for heat exhaustion. It is scary to think that had she been alone, she could have died. While we were in the hospital, she told me she had been praying that she could have my tumor instead of me, so that I wouldn't have to go through the surgery et al. I couldn't believe it!  (Who else but your mother could love you that much. I told her that I could handle it, and I will be fine, so stop trying to make yourself sick.) Thankfully, once they pumped the fluids into her she was fine.

[chrissmom]

Michelle,

I know what you mean and I know how you feel.  When Chris opens an eye or stays awake or even the smallest thing...we simply rejoice.  I feel that we are all stonger for this.  Yet, i wouldn't want anyone else to go thru what we have been thru this summer. We are so grateful to all his caregivers .  These youngsters have truly suffered.  Yet they are all amazingly strong.  i hope everything works out well for all of them.  it's day by day but I'm beginning to see the light at the end of the tunnel...he's getting better.

Rita

[ppearl214]

Rita, Michelle, Chris, Chelsea and Taylor...

I know all you have been through so much and are still going through it. Having not walked in your shoes, I cannot possibly fully understand the feelings and emotions that you all have had and continue to have, but please know that I stand with you and will continue to keep you all in my thoughts and prayers. All of you are so strong and inspiring...

Bruce

Bruce,

I could not have stated it better myself! Thank you!
Huggles to all!
Phyl

[Captain Deb]

Big Swashbucklin' Pirate hugs to Taylor, Chris, Chelsea and all their amazing Moms for having such strength and endurance to go through this AN experience.  You are  our Heros!! You absolutely humble us all.
Capt Deb