Thursday, May 31, 2012

Cardinal Hill Day 2

Compared to my Brother Lee’s death in 92, today was the second worst emotional day of my life.  While overall Jordan did well on her first day of evaluations with physical, occupational, and speech therapy, she had many emotional moments.  It was so hard to hold my baby girl’s hand while she cried over things she wasn’t able to do today but could a week agoL  I feel so helpless, because I can’t fix things for her!!!  As a Mom that is all I want to do and so during this process I MIGHT finally learn some patience!!  I explained to her that she is not even a week out of MAJOR surgery, but as all of you out there with teenagers know, they want things to happen yesterday! I did learn today that she will be evaluated for the first 72hrs, and then her case will be discussed in conference on Monday, with all disciplines involved in her care. After that we will know the exact amount of time she will be hanging out @ CH.

Jordan misses not being able to do the things that she should be doing during her summer break: Hang out with family/friends, hang out @ the lake, work her job @ Stein Mart, read books, & help with Special Olympics summer games!!! I explained that there were a lot more healthier summers in her future!! So when you see her she will have that beautiful smile she is known for, with a positive attitude, and a No, I am OK!!

We thank everyone for the continued prayers/thoughts.  PRAY FOR JORDAN

Wednesday, May 30, 2012

Out of UK & on to Cardinal Hill

Hard to believe that 5 days ago Jordan walked into UK for brain surgery and here it is 5 days later & she is walking out with me assisting her!  AMAZING :)  We arrived to Cardinal Hill late this afternoon after a late lunch @ Qdoba !  Jordan said it was so nice to be able to sit outside & to do something “normal.” We arrived during shift change, so she didn’t do much today.  The PT that she will have did come in for a short visit today. We also learned that Cardinal Hill is big on the primary caregiver being very hands on during her stay, so I will be staying with her to learn how to properly help her with things!  Jordan & I are very relieved about this because we were both very unsure about her being here by herself! She is in for some HARD work but she is ready to get to work & walk again!!!! 

Now, Jordan wanted everyone to know that she can also accept visitors, mail, or flowers!!!  The address for her is Jordan Chapman, Stroke Unit, Cardinal Hill, 2050 Versailles Rd, Lexington, KY  40504. We are unsure of what exactly her therapy schedule will be so visiting hours will be between 4 & 8.   Thanks again for all the thoughts/prayers/phone calls/emails/text messages. God is a miracle worker & I see his work every day I look into her eyes!  PRAY FOR JORDAN :)

Tuesday, May 29, 2012

Post Surgery day 4

It was a week ago today that we found out that surgery would be moved up.  What a week it has been!
Today has been a pretty good day for Jordan!  The right side continues to get stronger but is still very weak!  The left side of the face even shows some improvement today :):)  The eyes still not much progress but she is now going to alternate wearing a patch on the eyes for awhile.  So, as all of you know the patch has come full circle with the girls since Taylor wore one forever when they were younger!  She came off all the heart monitors today and so we got to move to another room!  This final room that we are in is like a penthouse suite!!!  Tomorrow she will make the big move to Cardinal Hill for at least a 2 wk stay. She understand that she will have some HARD work ahead of her but she is ready for the challenge!!!!
I thank God for giving me this 2nd life with Jordan!  He is a wonderful God!  PRAY FOR JORDAN :)

Monday, May 28, 2012

Post Surgery Day 3

The early hours of this day didn't start out so great.  This was the first night that the cath was out and she was up/down every hour.  So sleep was not to be for either of us.  One good thing about this is she was up walking every hour :)  Sleep finally came for her about 4am then she was up about 0740 wanting a shower!!!  I must say she LOVED the shower :)  she said it felt so good to just have some hot water running over her!  PT/OT also came today and they really gave her a workout & gave us homework to work on :) Trust me Taylor will make sure that Jordan has a chance to try things FIRST before she receives help from us.  The workout also brought pain her way and today is the first day she had something besides Tylenol during the day for pain. Today she also learned that  she would be off to Cardinal Hill for 2-3 weeks for some intense rehab.  Why she understands the need for this, she was very emotional about it.  In Jordan's words "can't I just fast forward and be done with all this shit?  I am so ready to just be home!" Today also has been the first day that Taylor has got to spent the whole day with her.  There have been lots of tears from both of the girls and Taylor was very excited to get her first "real" hug from Jordi today.  We finally made it out of ICU this afternoon and are in a progressive care unit.  Jordan feels very vulnerable at this time & does not to wish to have visitors. Jordan is very independent and this has been a very emotional transition having to ask for help from others :(  She appreciates all the thoughts/prayers from everyone!!!
Now the physical update~Jordan's right side continues to get the feeling back a little each day, balance is also an issue, the left side of her face is still very weak, and her eyes/vision are still double.  Jordan continues to have that big smile of hers despite the long road ahead.  The moment of sadness that she has I keep reminding her the goal that she is working towards! 
Today as I type this update my girls are both asleep, one in bed, one in a chair, & holding hands.
I am thankful God has given us this second chance with Jordan.  Miracles can happen!  PRAY FOR JORDAN

Sunday, May 27, 2012

Post Surgery Day 2

Today there has been LOTS of progress!!!  She had 2 main IV lines come out, catheter came out, & she has been up walking with assistance today :):)  A post surgical MRI was also done today for a new baseline for Dr. Fraser to have something to compare to in 3months. Now, for her physical update!!! The right side is showing improvement in strength, the left side of her face is still weak, and she still has double vision in both eyes. She understands that both of these may resolve with time. Jordan loves showing everyone her lopsided smile :)  We are still in ICU but she will hopefully get moved tomorrow to a regular bed :) We had a talk today that it was going to be one step at a time, with a long road ahead. So, we set a goal to work towards.  Jordan's goal is to be back @ MSU this fall to start nursing school!!!  I think she is going to meet that goal!!!!
As a Mom this whole experience has been very emotional. The tears are flowing like a water faucet as I sit here and type this update why watching her sleep.  It is like watching your baby girl say her first words, take her first steps, and it brings back so many memories of when  Jordan & Taylor were little and doing all of those things together.  Is it so emotional to watch the youngest twin, Taylor, be the strong one for the oldest twin, Jordan. When they were little the roles were reversed.  Their bond is only going to be stronger because of this experience.
I also want to recognize some of the other special people in Jordan's life :)  Jordan  has a pretty awesome boyfriend named Cory, AKA Cor Cor to the girls. This young man has really stepped up to the plate and has not left her side.  Not only has he been strong for Jordan, he has also been there emotionally for Taylor & Trevor(younger brother). Sara, a friend since kindergarten, has also been here every step of the way! We love you Nana & Sara! Mornissa, Jordan's college roommate was here also & it meant to world to Jordan.   I want to also thank my wonderful husband Derek for all that he does for me & our family.  Jordan loves you D & can't wait to rescue that new puppy you promised her :):)
Jordan has no idea @ this moment what a HUGE support system of family & friends she has!  Please continue to keep her in your thoughts/prayers!!  PRAY FOR JORDAN!!!!

Saturday, May 26, 2012

Post Surgery Day 1

It is about 0940 and Jordan has been off the ventilator about one hour.  She has been ready to get that tube out of her throat since about 0400!!!  Her first words were "one thing or another" because she immediately was put on a oxygen cannula. She will stay in the ICU for another 24 hours before she is moved to a regular room.  Her spirits are good and she is cracking the nurse up this am with her humor!  On the down side her right side is weaker than the left,still issues with her vision/eyes, she has some swelling this morning, & nausea/vomiting.  Thankfully, she doesn't seem to be complaining of much pain.  This morning Dr. Fraser said she has a rough 12-16 weeks ahead of her but she is young, healthy, positive attitude, and a wonderful support system. 
I can't thank everyone enough for all the phone calls, text messages, emails, thoughts, and the most important thing of all the PRAYERS!!!  God has truly answered some for her & our family!! 

Friday, May 25, 2012

The GREAT surgery update!!!

After 10 LONG hours we finally received word that Jordan had come through surgery wonderfully!!!!  Dr. Fraser removed not 1 but 2 angiomas that were side by side!!! He also did a C1 laminectomy to correct the Chiari I malformation.  She was stable during the whole procedure :):)   The cranial nerves were at baseline after surgery & the CT after surgery looked great!!!He is expecting her to have some facial weakness, right arm/hand weakness, and is unsure how the eyes will be.  All of these things can be corrected by physical therapy or with eye surgery later on.  God does answer prayers!!!!  We are all so thankful for all the prayer warriors that have been praying faithfully!!!    So, now I am anxiously awaiting to see her and get to kiss that pretty face!!!  Please continue to PRAY FOR JORDAN for a speedy recovery!!!

Today is surgery day.....

Well, after a major haircut, that is ADORABLE :), an MRI to have markers placed on the back of her head for surgery, visits with family & friends, she is ready for today.  As a parent words can't describe what emotions I am feeling @ this moment. I can't imagine what Jordan is feeling but trust me that SMILE is always present :) Her strength continues to amaze me!  Surgery is expected to last 4-12 hours.  I will post an update after surgery is over and she is settled into the ICU.  I thank everyone that has put her on Prayer list, for the phone calls/emails/texts/post here.  Jordan is one lucky girl to have so many people praying for her & God will take care of her!!  Please continue to PRAY FOR JORDAN!

Tuesday, May 22, 2012

Surgery date has changed!!!!

Over the past 72 hrs I have watched Jordan's eye's get worse.  It is not only the left eye that is effected now :(  It is both eye's.  Today I called Dr. Fraser's office to just give them a run down of what was going on.  As a Mom I felt like I might be overreacting but the medical side of me had big RED flags up!!!  She had taken steroids over the past 24 hrs that were prescribed by Dr. Fraser & there had been NO change.  This was the biggest red flag of all.  So, his office called me back & off to the ER we went.  She was scanned and luckily there was no big change!!  YEAH some good news, we will take any at this point!  Dr. Fraser came and spoke with us & per his guidance surgery will now be this Friday, May 25. Surgery will be done @ UK.
Everyone has had questions as to what the "exact" surgery/ how long recovery will be so I am going to try and explain it.  The surgery is called a craniotomy(brain surgery). There will be an incision  in the back of her head, they will cut thru the skull, spread the cerebellum apart, and remove the angioma from the pons.During the whole surgery she will be monitored by a special machine that will keep tabs on all of the 12 cranial nerves.  The surgery will be anywhere from 4-12 hours. Jordan will then go to ICU for at least 2 days.  She will more than likely have a tube down her throat and hooked to a machine for at least 24hrs after surgery.The tube will then be removed(pending that she can breath on her own with no problem) and the healing process will start. Now, what will the deficits be after surgery?  That is the million dollar question. We will not know really how long recovery or rehab will be until she is awake.  This is the scariest of all for Jordan & our family. We have faith in Dr. Fraser & in God.  Please continue to pray for Jordan & our family! 

Monday, May 21, 2012

Where is that damn magic wand???

I wished I had a damn magic wand today!!  Jordan has had a pretty rough weekend when it comes to her left eye :( the dilopia & vision has gotten worse to the point that she says NO more driving!  You know it is bad when your 19 year old says, I am done with driving.  As a Mom I feel totally helpless :(  I am supposed to be able to make everything all better for my kids but I can't fix this:(  Hating CA's today and the feeling of being helpless  PRAY FOR JORDAN

Thursday, May 17, 2012

One of the hardest things....

As a parent you never think you are going to have a talk to your child about life or death issues pertaining to them.  Today Jordan & I had to have that talk. When you are 19yrs old you shouldn't have to be filling out a living will much less trying to decide which choice to choose!  As a parent you should never have to have that talk with your child :(  We also filed her Power of Attorney today.  Should we be doing these things?  As a parent I want to say NO!!!!!  As a health care worker, I know it is good to have these things done:(  I am very hopeful that I will not have to use either one!!!!  PRAY FOR JORDAN :)

Wednesday, May 16, 2012

WOW is all I can say for the great response to the blog!  We thank all of you for the kind words, thoughts, & prayers!!  Jordan has LOTS of prayer warriors out there looking out for her!!!

Tuesday, May 15, 2012

Preparing for surgery....

Well last night Jordan's original surgery date was changed from 5/29/12 to 6/5/12. She will  have preop visits the week before and a MRI on 6/4 to map out the neurological pathways for Dr. Fraser. I am thankful to have another week with her before surgery but worry that it will be 6 wks out from the hemorrhage, making surgery that more difficult.  Angioma's suck and as much as I tell my patients everyday @ work, I do not listen to my own advice.  Only read from reliable sources because if you aren't scared enough by this diagnosis after you  go to google and start researching & reading you will be SCARED to death!.

The start of our Angioma Journey

In July 2005 Jordan woke up on a Thursday am complaining of her left eye hurting. It being summertime in KY I blew it off as allergies.  Over the weekend the complaints turned to double vision and she was unable to turn the left eye to the outside. Jordan also had headaches. Jordan had been experiencing headaches for years and she became "used" to them.  So first thing Monday am I was calling the eye MD for an appt.  We saw him on Tuesday.  After doing his exam he kept asking if she had been sick or had any trauma.  After repeatedly telling him no a MRI of her head was scheduled for the next day. Little did we know that our world as we knew it was getting ready to change dramatically.
We were there bright & early for her MRI.  What I knew should only be about an hour long process ended up being about 2 1/2 hours.  As a parent words can't describe what a feeling it is to sit in a chair why your child is laying in that MRI.  After the scan  we immediately went to her PCP's office. There we were told we would see a neurosurgeon that afternoon to explain all the details.   So, here I was trying to be strong for my child but falling apart inside. 
That afternoon we received the diagnosis of Cavernous Angioma located in the pons.  I had lots of questions and was not impressed by the first neurosurgeon we saw.  So, as someone that works in the medical field  & a Mom that wanted nothing but the best for my child, I immediately picked up the phone and started networking.  We ended up @ Rainbow Children's Hospital in Cleveland, OH seeing Dr. Alan Cohen.  Our first visit with him was late August.  He gave us the news that Jordan's angioma was inoperable due to the location in the pons.   As a parent this was very hard to hear & accept:(  Your child has something that basically, is a ticking time bomb in her brain and nothing can be done!  So he followed her every 3 months for the first year.  She did regain control of her left eye again & the double vision improved over time.  Our visits with Dr. Cohen over time also became further spaced apart. We last saw him April 2011 and he said we didn't have to seem him for 2 years!  We were thrilled :) We felt like Jordan was doing great and that the angioma was not going to be symptomatic again. This was not to be :(  The angioma showed its ugly head again on April 26, 2012. 
Jordan again awoke on a Thursday with double vision and unable to turn her eye to the outside. She was away @ college.  Jordan being the resilient & headstrong child that she is, knew what had caused it and just went on about her normal routine. She didn't tell me until Sunday.  That Monday morning I was faced with new set of challenges because there had been a change in insurance & we couldn't see Dr. Cohen.  I immediately contacted NS @ UK and got her into see a PA that afternoon.  We loved her and had a MRI/MD appt set up for that Thursday.  I was on pins and needles waiting for for all of this to happen while Jordan was going back and forth to college!  Thursday came and the scan showed what we had known for a week, there had been another hemorrhage.  This time she had new symptoms beside the vision/eye issues. Jordan's right arm was numb.  The new NS we saw, Dr. Justin Fraser, was very nice & had a great bedside manner!!  He spent about 1 hour with us explaining why he was giving us the options and answering all of our questions.  The next step was we sent everything to Dr. Cohen to review & to Dr. Spetzler to review.  I knew that insurance wouldn't cover either of them but I needed to have 2 other opions.  One coming from the only NS that we had ever seen and the other coming from one of the best in the country.  They both also recommended surgery @ this time.  After much thought & prayer, Jordan has chose to do the surgery.
Jordan & our family have been very blessed with wonderful friends & family that have given us support during the good & bad times.  We thank you.
So as the next chapter gets ready to begin the unknown is very scary.  With our faith in God and our positive attitudes we are ready to face any challenges that she will face in the future.....Jordan would say because " WE ARE GOOD STRONG WOMEN" and yes she is very strong and her strength AMAZES me daily!