Hi all - the culture from Abby's line had no growth as of this morning so we are HOME!!  She is tired, but very glad to be here.  More tomorrow - its been a long day.  Just wanted to let you know we made it home.  Thanks for the prayers!
Love, Lauren

When we were in Cleveland in December and heard the doctors' recommendation to have the C tube placed, it was a rough day.  Many tears were shed by both Abby and I.  Our family has learned that a sense of humor is invaluable....and we are surrounded by folks who feel the same way.  Abby has a great sense of humor, and that evening in Cleveland when we left the doctors' office and returned to the car, she said that she had something that would "put it all into perspective."  She searched You Tube on her phone and played the video below from one of her favorite shows - "Scrubs."  We laughed and laughed, and hope you will join us in a laugh too, and give us a little latitude here by accepting it in the spirit of fun in which it was intended  - Below the video is a list of FAQ's compiled by Abby and answers to the questions.  Enjoy :)

Wow - I am feeling like I can finally take a deep breath and that we may be a bit closer to home...like we may even get there on Wednesday!  Abby and I both are feeling pretty homesick now.  Physically, she is doing so much better.  She does suffer from what she has dubbed as "HAM Fog...."  an acronym for Hydrocodone (pain medicine), Anesthesia and Mito fog, but her sense of humor is back (obvious by the HAM fog....:), she is stronger everyday, and the site is less painful each day.
We have used the C tube over the weekend and both of us have become more comfortable with it.  All of this was made very worth it on Friday and on Saturday when Abby realized how much it can help her and how much control she has over when and where and how its used. ... And that it doesn't hurt!  When that hit home, the smile on her face could have lit up all of Cleveland! She even commented yesterday that "maybe she wouldn't have as many unplanned hospital stays now."  The skin around the tube is very raw and irritated but it should go away as the site heals.  (Thanks, Lacey, for the recipe for the compound to put on A's skin...it worked wonders!)

We met with Dr. Chelimsky this morning.  My sister met her for the first time and she can now understand why we come to Cleveland for Abby's care.  She is such a kind and compassionate person as well as a gifted physician!  I discovered over the weekend that there were many questions that I didn't ask about the C tube that I should have - questions that only come up when you try and actually USE it, as well as things you always think about later.  She was able to answer so many of our questions today.  She was concerned about the intermittent fever that Abby is still running (and really so am I ), so she sent us to the hospital for line (port) cultures as well as another blood test to check for infection.  The good news is that her wbc count was lower today than it was on Friday.  The cultures to check for the line infection take 48 hours to finish growing, but we will call the doctor on Wed. morning before our flight to be sure they aren't growing anything yet.  If they aren't, then we will head back to GA; if they are, well, we will need to move to plan B.

So, now we wait until Wednesday, pray for no line infection and hopefully will be able to wake up at home in Woodstock on Thursday morning.  We have pictures of a few of the  "lighter" moments that we have had on this leg of the Journey, but the connection is way too slow here to upload them....We will add them when we can.

We miss Seth and Kevin so much (and Scruffy!)  Thanks to all who have helped out in Georgia while we have been away,  It means a great deal.

L









...

Abby was discharged to the apartment on Friday night.  She has had intermittent fevers over the weekend and is very tired, but in great spirits.  We have had to flush the tube throughout the weekend and she is getting more and more used to it, and I am getting less nervous about accessing it and using it too.  We will see the GI doctor this morning at her office and will know more about what to expect with the C tube after that appointment. S

The area around her tube is very irritated and raw.  Its painful and I am not sure if its supposed to be that way or not, until it heals.  We are hoping to be able to go home to Georgia on Wednesday, but we will have to see how she is doing.  She really wants to go back to school....and was upset when I told her that it wouldn't be full days for awhile.  We finally agreed to let Dr. Mrs. C. decide this morning :)

Thanks so much for the calls, emails, thoughts and prayers.  More later - Thanks again!

Abby was very uncomfortable on Tuesday night as they continued to try and prep her for surgery.  Dawn being here has helped so very much - she is the voice of reason in the midst of my emotion and her 20+ years of nursing and critical care experience has been a huge help.

Abby was looking forward to getting surgery over with yesterday morning... and definitely to eating again!   When we got to the pre op area, things got a little crazy.  Dr. Mrs. C. was supposed to meet us there for her part of the procedure, which was the upper GI and colonoscopy.  Instead, her colleague came and told us that Mrs. Dr. C. had a death in the family and she would be handling the scope and colonoscopy.  Also, somehow the protocol for Abby in case of emergency, as well as anesthesia/OR protocol never made it to the anesthesia or surgical team...  But, it all worked out; everyone ended up on the same page and Abby went back to surgery.  Dr. Parry, the surgeon, is wonderful - Abby really like him and is very comfortable with him.

She was in surgery for about 2 3/4 hours - when we went to meet her in Post Op they told us that it wasn't possible to do the scopes - it was too much.  Guess this is fine as I really wanted Dr. Mrs. C. to do them anyway.   They did place the C tube (its called a chait trapdoor - very flush to the skin, which is good) and removed the gallbladder.

Abby was asleep in post op and we talked about pain control with the surgeon - then Abby began almost whimpering sporatically in her sleep  -  they gave her more medicine; then her skin became very red and blotchy but it would come and go...they changed her pain med to Dilaudid, but she continued to wake up agitated.  When we got up to the room they gave her more pain meds....and she screamed that it hurt.  We looked down at her port and it had infiltrated - in other words the needle had come out part way and all of the fluids and pain meds went into the tissue, not into the vein.  She had about a 8" in diameter circle filled with fluid and swollen in the chest.  Needless to say, we had to pull the needle without flushing the line  - when the needle came out and the fluid started flowing out of the hole, Abby said "I don't think the medicine really went into my vein...."  Anyway, we were afraid we would lose the port since we couldn't flush it.  And we had a hard time then getting on top of the pain.  

Today they tried to access her port to flush it but the nurse couldn't get it and Abby is very sore, so when they push the needle into the port it hurts.  Good news is that they were able to access later today and THANK GOODNESS, there was a blood return and we could flush.  So, at least we don't need to replace the port!

We are now trying to wean her off iv pain meds - tomorrow we will try and use the C tube and then hopefully by tomorrow afternoon we can be discharged to the apartment here.

We so appreciate your prayers and thoughts.  Abby has been incredibly brave.  She continues to amaze us.  Having Dawn here has been a huge source of support and help - Abby has her own private nurse :)  Kevin left this afternoon and my sister, Julie, flew in later today.  Dawn will leave on Saturday and Julie will be here until we leave.

Abby has walked to the bathroom and back a couple of times this afternoon, and has decided to get up every two hours to try and get her strength up so that she can go home.  

We will keep you posted as we can.  Thanks again for your love and support.

Love, Lauren





 

Abby and I landed yesterday afternoon and Abby was admitted to Rainbow Babies late yesterday.  She had her IVIG infusion on Saturday and Sunday thanks in no small part to Julie, Abby's awesome nurse who left to go back to the 9-5 clinical setting last September.  The home health co. was not able to provide a nurse and all docs felt like she needed her infusion before surgery.  Julie was so kind to give up her weekend to us and it was great to see her.  She is like part of the family and we have missed her.

Today has become more difficult as the day has gone on.  A KUB this morning showed that we had not made much progress in cleaning  out Abby's colon to ready her for surgery.  They have been very aggressive today in treating her and it is extremely painful for Abby because of the state of her GI tract.  What would be uncomfortable for most is excruciating to her.  Tonight was rough, and she is very tired and wiped out.  We will need to see what the GI doc and surgeon say in the morning about going ahead with the surgery.  As of tonight she is not prepped to move forward.

Our friend Dawn flew in from Georgia to be with us for a few days.  She has been a welcome relief, diversion and shoulder for me.  I am so very grateful that she is here.  Dawn, her husband David and their kids were one of the first families we met after moving to Georgia in 1991.  They have weathered many a storm with us, always filled with laughter through tears - - - Abby is loving hanging out with Dawn and playing with all of her "gadgets" - She has a pretty cool laptop AND a Kindle!

Kevin flew in this afternoon and will be here until Thursday.  It is the first time that he has been to Cleveland with us and we are very glad he was able to get here.  The nurses, doctors and staff here continue to amaze me - they are wonderful.  Its a mixed blessing - this is where we feel like we need to be and where Abby is best cared for, yet its so hard to be this far from home and our friends and family.

We continue to be overwhelmed and humbled by the outpouring of kindness and well wishes, and consider ourselves so fortunate to be surrounded by the friends and family who are there for us at every turn.

Thanks for all the phone calls and texts and emails - It means a great deal and I am sorry that we haven't been able to get back to so many of you.  Just wanted you to know that we appreciate each of you and your thoughts and prayers.  Please  continue to keep Abby in your prayers - she is very anxious, in a good deal of discomfort and is in fear of the surgery and what changes it will bring with it.  I wish with all my heart that I could take it away for her - I wish I had a way - I just pray that this will help and that she can go back to being a 7th grader with a few less worries, a lot less pain, and much relief.

We will keep you posted.  Thanks so much again.
Love, Lauren

Wanted to post and let everyone know that we arrived back home safe and sound at about 8 last night.  We saw some friends last night who we hadn't seen in a couple of years and had a good time catching up.  Abby had fun and then we went to church this morning.  She was ok there but at home was off by herself and then tonight had a rough one again.  She is understandably frightened over the C tube and angry that we have decided to take the doctor's recommendation and move forward with it.  We spent a couple of hours tonight trying to ease some of her fears, but she cried herself to sleep.  This is so, so hard.  I pray that we are making the right decision for her - she feels like nothing ever works so why try this.  Seems like it is a no win situation.

We appreciate all the calls and emails - sorry that I haven't gotten back to many of you yet.  We are just really tired and trying to catch up!  Please pray for Abby as she comes to mind - she needs some peace and rest right now.  we started the new medicine tonight and will let you know about surgery as soon as we have firm dates.

Thanks so much for everything -
Love, Lauren

Hi all - thanks so much for all of the messages, emails and voicemails.  We really appreciate them.
It has been a very long day and honestly am not sure how uplifting a post I can make this.  Not too many ways to sugar coat what has turned out to be a very emotional day all the way around.
Many of you if not most of you know of Dr. Patty, who has been Abby's pediatrician since she was born, and Jack's before that.  When Jack's medical issues became more involved, and Abby was just a few months old, Patty asked one day if we had family here or a support system.  She invited us to church in 1997 with she and her husband, Jose.  From that invitation grew not only a treasured friendship with Patty and Jose, but close to 90% of the community that has become our family over the years.  Patty was diagnosed with breast cancer a couple of years ago.  She tackled the diagnosis like she did every other area of her life - with everything she had in her.  She fought courageously with Jose by her side, along with her two beautiful daughters.  At about 11 last night, this world lost a wonderful, gifted friend, mother, wife and physician, and heaven gained one.  Jose called last Saturday morning and asked if I would like to go up to their home and say goodbye.  I am so very grateful for that opportunity.  I got to see her and tell her how much she has impacted my life and the lives of my kids; how much Jack loved her and how she taught Abby to fight; to speak up and tell her doctors how she feels, what is going on and to take part in her care.  What a gift we as a family have been given to have Patty care for them for so many years - she loved our children and was vested in them.  She walked with me through some very dark times; and was there for some really incredible ones.  She was the first phone call we made when we got back to our hotel room after picking up Seth to bring him home forever.  She bought me my first bible, was a constant source of encouragement.  To say that I will miss her seems such an understatement.  Our thoughts and prayers tonight are with Jose, Cristina, Rachel, Kathy and Bonnie and with all those that Patty's life has deeply touched. 

Abby and I woke up in Cleveland to a colder day than yesterday...didn't think it was possible, but it sure was!  We were at the hospital from noon today until close to 7 tonight.  We met with the surgeon, Dr. Parry, and then with Dr. Gisela (who is the GI side of the autonomic team) and then Dr. Thomas (the neuro side of the autonomic team, who happens to be Dr. Gisela's husband).  We got a tremendous amount of information, and it was a very hard day for Abby, to say the least.   I will try and give the abbreviated version....

We both were glad to see Dr. Parry again - he was so patient, and is such a kind man.  From a surgical standpoint, the gallbladder isn't working and the risk involved in taking it out is far less than what could be gained by doing it, so he votes to have it removed.  This is what I love about surgeons - most everything fits into a box.  Its all based on risk vs. benefit, a decision is made and you move on.  Wish all areas of medicine could be so easily tackled...

Our appointment with Dr. Gisela and Dr. Thomas had several areas that had to be dealt with - the major ones being the gallbladder and why it is the way it is, because its not typical; the once again full colon and Ab's inability to tolerate anything that can help to empty it; the significant weight loss in a short period of time; the up and down sugar levels; and of course the never ending nausea, along with increased unexplained fevers and flushing and finally the relatively new tremendous fatigue.  It has really impacted the quality of her life and has been very new and different to what she has experienced before.

Between the motility testing results that Dr. Gisela revisited before we got there, along with several of the testing results we had been waiting on, it was determined that she has in some areas an exagerated response to anything in her GI tract, and it seems to be worsening.  This is not just medication but food as well.  So, Abby ends up measuring everything that she eats, drinks or takes as medication in her mind with what the result could be, which causes obviously a great deal of anxiety for her, not to mention weight loss, poor nutrition, etc.  It has a name and it begins with an A and for the life of me I can't remember it.  But, regardless, without going into too much of the details, the plan is this:

We have doubled her sodium to 4000 mgs a day to help with POTS issues of the flushing, POTS related nausea, blood pressure ups and downs (which were significant today when she was tested) and the weakness from standing, etc.

We have added Doxepin and will titrate up over the next couple of weeks in the hopes that it will increase her pain threshold.  We are to follow up with Dr. Vidya and look more closely at her sugar levels and how to monitor them properly.

Finally, and the reason for the understandable emotion of the day - we will come back between the 1st and 2nd week of January.  Abby will have surgery, and while under anesthesia have an upper endoscopy, the gallbladder (and most probably the appendix) removed and then have a c tube placed permanently in her lower abdomen.  We will be able to use the tube to help keep her colon empty.  Because of her documented response to anything going into her stomach, a G or J tube for feeding are not an option today.  Hopefully she will be able to not only eat enough but her body will be able to absorb enough to maintain nutritional levels.  Additional blood tests were ordered today to determine a bit better what she is absorbing (not only nutritionally but medicinally as well - to try and determine what meds are actually working).  She will be monitored closely and then it will be determined over the next few months whether or not we need to begin partial TPN feeding (this is nutrition through the veins).

Abby wants desperately to be "like everyone else" as she put it today.  She is frightened of the c tube causing pain when its put in and when its used.  She is frightened of the surgery overall.  She is afraid of the changes and the way she is feeling.  Tonight she told me that sometimes she just wants to stop it all - all the meds, the infusions, the whole thing, and just let the disease take its course so she can be like everyone else. She also said that she watched all the doctors in the hospital today - she wants to be one someday - she wants to help other kids and she knows that she is smart enough, but she wonders if she will ever be able to keep it together physically to maintain what it takes to do it.  And she wonders if she will be here long enough to have the chance. 

Although a great portion of the day has been very emotional and exhausting, we have together agreed that we have had an opportunity today that not many other moms and daughters have.  Through fear and pain and sadness, we could talk about things that really matter.  I saw firsthand how she copes with these things that no 12 year old should have to deal with and it hurt so much.  It hurts more to know that I can't fix it for her.  In fact, it truly just pisses me off.  Our friend Kristy called tonight and Abby is very close to her.  As Abby talked with her, she made it sound like she was fine, everything was just hunky dory and no big deal.  At dinner tonight I asked her about it - she was and has been upset for a great part of the day, but when she spoke with Kristy she put on her happy face.  She told me that people tell her all the time that she is strong and brave and she doesn't want to let them down.  We had the chance to talk about how being strong and brave doesn't mean wearing a happy mask when you are not, but truly what people see in her, or at least what I see in her, is her ability to say that its hard, that she is scared, that she doesn't always feel so great, and having the courage to walk through it anyway with a transparency that draws people to her, wanting to walk through it with her too.  I love my daughter so very much - but I truly like her too.  If she wasn't my daughter, if she was just someone I had met along the way, I would want to know her and spend time with her.  But, she is my daughter, and I have been reminded all day long of the gift I have been given.  A timely reminder, given the season. 

I must say that she and I do deal with things in similar ways.  Lest you think the day was all gloom and doom, when we got in the car at the hospital tonight to leave and were emotionally tired from crying (I HATE that feeling...) Abby said that she had something to make us both feel better.  Thank goodness for that Iphone, Uncle Mike, Tracy and Herb ( :) - she pulled up a video on You tube from one of her favorite shows - Scrubs.  Its a video with the cast singing about poop and the digestive tract and it was hysterical.  I told her I was going to upload it to the website (as soon as I can figure out how :)  We laughed so hard - !!!  Then tonight in the hotel she said in a really quiet, weepy voice "Mom, can I sleep with you tonight?"  I asked her if she was doing ok.  She breaks out laughing and tells me that she ate a bagel in bed this morning and her sheets are covered in crumbs and what she would REALLY like is for me to sleep in the crumby bed and she will just take mine.  Brat.  But, I love her anyway.

If you got to the bottom of this, God Bless you.  It sure has ranked up there with some of my better nonsensical ramblings.  Thank you all for your love and support.  It means so much to us.  And to those Skypers who shall remain nameless (to protect the innocent..)  - those Skype sessions have meant the world to Abby - we have both cracked up at the antics of trying to communicate without any idea whatsoever of what we were doing!  Thanks for taking the time out to do that when there were many other things I know you could have been doing!

Give your kids an extra hug tonight and remember to tell those people that matter in your life that they do.  Life is more fragile today than it was yesterday.

Love, Lauren

Happy Thanksgiving to each of you.  We are so grateful to have you in our lives and feel truly blessed to be part of an incredible community of family and friends!

I have tried to post an update for a long time.  For awhile it seemed like it was just more of the same.....then life became really crazy and so much was happening it was an overwhelming thought to try and post.  Our dear friend, Odalie, told me the other day, in essence, to just do it...so here goes!

Life has seen many changes - lots of ups and downs, and I have struggled to keep up!  Have never done well with change... preferring instead to have some kind of routine and a semblance of control (illusion or not!)

In May, our insurance plan changed.  By July it was obvious that the impact financially was going to be more than we could handle. That combined with a downturn in the economy, prompted us to move Action Automotive home, and Kevin was hired by Lockheed Martin in September.  He works evenings (4 p.m. to 1 a.m.) at Lockheed and does auto repair during the day.  The insurance plan is much more affordable than what we had, and we are in the process of changing.  His benefits become effective January 1, and we are hoping to see a huge difference in coverages and out of pockets.  We are very grateful for the new plan, but the change is requiring a HUGE amount of coordination.  Unfortunately, of all the meds and treatments Abby receives, approximately 80% of it is what is considered "non formulary" - the biggest of which are her Zofran for nausea and her IVIG treatments.  We have to get all of it approved again through the new company, and that requires doctors letters, forms, more forms and more forms.....the good news is that so far, even though we are not "officially" part of the new plan, the Lockheed Martin HR dept. and the new insurance company have been responsive and helpful.

It was a long summer - I think that we survived the spring and the hospital stays and Abby's deterioration medically by pure adrenaline, and the fallout hit about the end of July.  I didn't realize how much I was affected until the sun started to peek through again....The kids started school in August.  Abby is thriving in middle school - she absolutely loves it.  Seth didn't warm quite so quickly to first grade, but has definitely settled in and is doing so well now!

The teachers and team at Dean Rusk, Abby's middle school, have been nothing short of amazing.  Our dear friend, Whitney, (who happens to be Abby's Sunday School teacher as well) is one of the AVP there, and that has been great in helping "mom" transition to middle school (Abby has done just fine...its me that doesn't do change well!!!). 

The disease still sucks and I seem to despise it more and more each day, especially as Abby gets older and I see how the symptoms impact her daily, and as she becomes more aware of the impact and deals with it.  We are at the time of the year (seems to be a pattern...) where the build up of activity begins to take its toll, and she starts to have more issues.  She is more fatigued than I have ever seen her and she is frustrated by that.  She said a couple weeks ago that "there is so much that she wants to do and she is so tired..."  She doesn't want to miss anything, most especially school so she tries to pack it all in.  Making constant modifications to school work to adjust for how she feels on a given day overwhelms her and she feels the need to not give herself a break when it comes to school work - she doesn't want others to think she is "getting away" with anything by doing 10 problems instead of 20, etc.  And there is a definite transition occuring in middle school, preparing the kids for high school and being responsible and more independent with their assignments and planning, so there isn't as much parent involvement with time management and assignments, etc. 

As far as how she is feeling, she continues to have nausea.  the severe episodes of pain and nausea are better, finally.  The "other" nausea, that she feels after she eats, and throughout the day, continues.  But, she has learned to live with it.  She has a determination and strength that truly is an inspiration to me.  We have discovered in the last 2 weeks that her gallbladder is only functioning at 11%, but she isn't having typical gb symptoms.  Since its unusual for a 12 yo to have gb disease, and since there arent' typical symptoms, the docs are looking further for causes.  Additionally, she has been having difficulty with low sugar levels, which make her feel pretty bad.  we are trying to maintain her levels with diet, but haven't gotten a grip yet.  We have met with a surgeon and with GI here in Atlanta and spoken with the docs in Cleveland.  We had additional tests done on Monday, along with a KUB to see how her colon is doing.  Abby and I will travel to Cleveland on 12/9 and meet with the docs there on 12/10, including surgery.  It is likely that she will have surgery there, as other procedures will need to be done that the Cleveland docs need to handle, but we will know more on the 10th.  They are looking much more closely at her liver for various reasons.

Guess that is enough to inundate you with for now!!  We continue to be amazed at the friendship, prayers and support.  We appreciate it so very much.  We have been asked what folks can do for us and we would ask that you keep Abby in your prayers with respect to the Cleveland trip and some answers, and also with respect to the IVIG approval with the new insurance company.  Abby has said that the infusion is the only thing that makes her feel "normal."  I am hoping that it will be a smooth transition with approval by the new company.

Happy Thanksgiving - we love you all.

Lauren