Not much to share

  I really don't have a lot of news to give.  On Wednesday, neurology came in and told us they were not going to okay an MRI of Bailey's brain.  Understandably this was frustrating.  Bailey had not been able to eat all day and we had been told everything had been okayed to do the MRI.  They waited until 4:30 to come and tell us they were not going to let it happen.  Their solution was to send her home and wait until she had stoke like symptoms again. They told us we would need to get her to the hospital as fast as possible to get an EEG the moment she got to TCH.  The problem with this is that we have taken an ambulance the last 2 times and she has had an EEG when we got here that showed slow brain activity.  In other words it was inconclusive as well.  Dustin, Bailey and I respectfully disagreed with the team of neurologists.  It doesn't seem to make sense to tell our 14 year old daughter to go back to Jr. High and wait for her to have this happen again in front of all of her classmates.  After hearing it from first Dustin, then me and finally Bailey the team left looking a little stunned by our reaction to their decision.  They came back after a few moments and said that after discussing it they were ready to go forward with the MRI. 
SO . . . it was too late Wednesday to do it and one of the stipulations was that our cardiologist had to be present during the entire test.  Our cardiologist had clinic all day yesterday so the MRI couldn't be scheduled until today.  We are currently waiting to go downstairs and I actually see the radiology team outside our door.  I will update as soon as I know something.
Thanks for the prayers!
Jackie

Back Again

     Well it has been exactly one month since my last post and unfortunately we are back at TCH.  Bailey has done fantastic over the last month.  She has been attending school regularly and has been a typical 14 year old girl.  Yesterday at about 11:15 I received a phone call from her school's AP saying that Bailey was back in the nurses office.  She couldn't see and had numbness.  They had to take her out of class by wheelchair.  The AP asked me if I wanted her to call an ambulance and I told her to let me get there first and assess the situation.  At that time she was coherent and verbal.  Less than 5 minutes later they called me back and said Bailey had taken a turn and they had to call 911.  When I got there she was being loaded into an ambulance.  Her eyes were open and she was trying to talk but could only make noises.  I rode in the front of the ambulance and Dustin followed behind us.  On our way to TCH the paramedic believed Bailey was having a seizure and sedated her but to no avail.  She was nonverbal, convulsing and not lucid for several hours yesterday.  We spent about 9 hours in the ER and were moved to the PCU at around 9. 
     The good news and bad news is that so far everything has come back normal.  We are relieved they haven't found anything major but at the same time we are still not clear about what is happening to our girl.  We have spoke before about the need for an MRI  but Bailey is not a candidate for one. She has a pacemaker which makes her a high risk for having a procedure with a very strong magnet because the pacemaker and St. Jude's valve are both metallic.  However, the doctors here feel like it is time to do what needs to be done in order to get a brain MRI.  So we are on the schedule sometime today to have an MRI done on her brain to hopefully get some answers.  The doctors have given us some other ideas about what might possibly be causing these symptoms but I will blog more about that option after we get the results from the MRI.  They feel like what might possibly be happening is that she could have some residual damage from her previous strokes which could cause her to keep having mini-strokes.  She does seem to be back to normal today and that is a blessing. 
Yesterday was a difficult day and Dustin and I didn't get to bed until after 2 in the morning.  I hear a lot from people about our strength.  I'm hear to tell you yesterday was a true test of my faith and strength.  I know logically that God is in control but honestly sometimes you just want to say, "SERIOUSLY, God?"  I hope I don't offend any readers by that statement but I am just being honest.  The funny thing is what I am learning is God is probably up in Heaven looking down on me going, "SERIOUSLY, Jackie?"  Sometimes I am hard headed about lessons he is trying to lead me through and I am blessed to have a fatherwho loves me so much that he keeps leading me to bigger blessings.  Dustin and I are in the process of trying to work through some big things that I would have never thought possible and I know these ideas are little nudges from his spirit saying, "Look what I have in store for you.  Don't give up!"  Please keep Bailey in your prayers as well as Maddie.  Dustin and I could sure use some prayers of strength and discernment to make sure we are following his good and perfect will. 
Love to you all,
Jackie

Going Home and Dance Mom

     I apologize for the break in the blogs.  I last blogged on Thursday and Friday I went home with Maddie to go with her to her first dance competition.  So I have been without the laptop for the last several days. 
    
     Friday Bailey's INR was 2.1 so we were getting closer but we all projected Sunday or Monday before we were in therapeutic range.  It is funny how God works.  One of the things about working with doctors is that a lot of time they are very intimidating and often times you blindly trust them because they are so much more educated than you.  When Dustin and I had Bailey, I was 19 and he was 21.  We were barely old enough to take care of ourselves so whenever a doctor said something, we would have never thought to question it.  14 years later, some of that intimidation has worn off.  See, Dustin and I know something that none of these doctors know.  We know our daughter.  We know what is normal for her and we know what kind of kid she is.  Bailey is not one who likes the attention of the hospital.  She is not a kid who fakes things for attention and she is not a complainer.  You could ask any PE coach Bailey has ever had.  They will all tell you she never complains about what is asked of her and you will definitely never hear her use her heart as an excuse.  I say all that because in this last visit it felt like when the doctors didn't find what they would expect to cause Bailey's symptoms, they were quick to say Bailey's symptoms were more likely caused by stress.  We all agreed that once Bailey got in the hospital, she was under a great deal of stress but not before.  Anyways, I say all of this to get to the point that God really used this visit to show us to listen to Bailey and also to give Bailey the opportunity to gain her own voice.  Friday we got the opportunity to watch our girl turn into this well-spoken, brave young lady.  Bailey addressed a team of about 7 doctors at one time to tell them what she thought, what tests she wanted ran and to express to them that she knows they are very smart but only she really knows what it feels like to experience what is happening inside her own body.  And guess what?  They listened to her!!  This was important because it gave Bailey some control in her own health care which is so important in chronically ill teenagers.  They often feel like they have no control and all decisions are made without them. 
    
     So as many of you know by now, we got released on Saturday!!  Bailey's INR was 2.5 and the doctors said it was time to get out!!  It was a beautiful day to get out and we were home by 4 o'clock!!  We even had some visitors right as we were leaving that brightened Bailey's day even more!!  There is something about a group of 8th grade girls that make her day happier than any other visitor could provide:)

Getting on the elevator to go home!!

     I know this blog is about Bailey's heart, but I would like to give some attention to Maddie.  While I was at the hospital I met a mom of a 14 year old quadriplegic on a ventilator.  Her daughter was in a car accident when she was 3 and has needed around the clock care ever since.  We started by talking about our girls but our conversation quickly moved to our other children.  Often times when you have a chronically ill child, your other child gets pushed aside really out of necessity.  I know it must be done, but it is hard to explain and reason with your healthy child.  It was nice to talk with another mom who experiences the guilt that comes with this.  I am so blessed to have so many great people in my life who love Maddie and want to help with her, but it is hard not to worry about her feeling somewhat abandoned by her mom and dad.  Maddie has been a trooper, but I can't imagine what it is like to have your security pulled right out from underneath you for weeks at a time when your sister gets sick. 

     This weekend was Maddie's first dance competition.  She has been attending hours of practice every week since July preparing for competition and something she has been very excited about.  I heard from family members that Maddie was really worried that nobody would be able to come to her competition because they would need to be with Bailey.  She would never tell me and Dustin this, because she wouldn't want us to worry, but I knew this was a real fear for her.  This is why it was so important for me to leave the hospital on Friday to go support her.  She did fantastic and I was so proud.  I don't know how many of you have ever been involved with competitive dance teams but I had no idea what was in store for me this past weekend.  Maddie's 4-6 grade ensemble had to perform at 10:30 PM Friday night in Kingwood and then we had to be back at 8 AM the next morning.  They danced again at 10:40 AM and we did not finish the dance awards until 12:30AM.  I think we crawled in bed at 2:00 AM.  It was worth the wait!  Maddie's ensemble took 1st and 3rd place in their age group.  We even got to bring daddy and Bailey for some of the evening events and they got to see her get her awards.  All in all, it was an exhausting but blessing filled day.  Thanks for indulging me in Maddie some of the spotlight:)

This one was taken at 12:30ish.  This would be why she looks so tired!!

     So, I don't know that I will be blogging too much more unless something comes up.  I am planning for Bailey to go back to school on Thursday.  I have to take her back downtown over the next few days for clinic appointments, but I think we will all be glad to get back to a normal schedule.  Thank you again for all your thoughts and know that the Gist's are eternally thankful for you.

In Christ,

Jackie

Family Night

     Every time I sit  down to write this blog I always have a scripture that pops in my mind about the people who might be reading it.  It comes from Philippians chapter 1:

I thank my God upon every remembrance of you, always in every prayer

 of mine making request for you all with joy, for your fellowship in the gospel

 from the first day until now, being confident of this very thing,

that He who has begun a good work in you will

complete it until the day of Jesus Christ.

     I feel so inept to express how gracious and completely humbled by the enormity of people who have prayed and cared for us.  We have been encouraged physically, emotionally, financially, spiritually and in many more ways I know I am not recalling right now.  Dustin the girls and I have without a doubt had the most difficult past year of our lives.  Satan has waged a full scale attack on our family.  I know that is not something a lot of people talk about but I am really trying to be less concerned with being comfortable and more concerned on letting God and his spirit move me.  Satan has attacked our marriage, our children, our financial security and basically has tried everything in his power to take our family.  No matter how big satan attacks, our God is bigger.  God has revived our marriage, provided a new job for Dustin that he loves, worked in Bailey's health, provided us with a church family that loves us and cares for us, financially taken care of us, provided us numerous angels in the friends we have to minister to us,  and most of all has given us new eyes to see how God is transforming us everyday.  We have had people reach out to us in complete sorrow with awful situations in their own life but yet still have taken the time to reach out to us.  I am so in awe of our Savior. 

     Last night, Dustin and Maddie came up after Maddie's dance practice to visit. My motherly instinct was very practical and thought this was not a good idea because Wednesday is Maddie's late night and they don't get done until 8:30. Then it took almost an hour to get down here which put them arriving at 9:30 on a school night. I'm glad I didn't protest too much because it was the first time in 2 weeks that all four of us have been together. It was so sweet to see the girls love on each other. We had Maddie tears when it was time to go (at 11 PM!!) but got her to go reluctantly with the promise of coming back tomorrow. She has been a champ when it comes to dealing with all this Chaos. I even took pictures for proof!!

     Here is the latest on our situation here at Texas Children's.  Bailey's INR is 1.9 today.  That is a bit disappointing but the Dr's have a plan to increase her coumadin dose.  The team of doctor's that are following us had a discussion with me this morning about the possibility of transferring Bailey to a place called Healthbridge.  It is supposed to be more relaxed atmosphere that is easier to navigate and where her coumadin can be followed.  I'm not sure at this moment what we are going to do but at this moment it seems like a lot of work to move facilities when she is pretty content here with all the activities Texas Children's has to offer.  I am waiting for the doctors to come by to get more information before we make the final decision. 

     We continue to spend time everyday catching up on homework, reading some good books a good friend brought us, watching Lost (of course:),  and taking walks around the hospital.  The transformation in Bailey's health over the last few weeks has been nothing short of a gift from our Heavenly Father.  Thank you for approaching his throne on our behalf.  You are in our prayers daily as well and will continue to be. 

In Christ,

Jackie

Thank you David PTO for your sweet and humbling gifts!  Maddie couldn't wait to help me and Bailey open the cards!  I am so grateful to all of you:)

Moving Day and Freedom

     Sorry I didn't get to the blog yesterday:)  We got the opportunity to move rooms.  Bailey has been on the 7th floor which is a step up from ICU but more restrictive than a regular room.  They wouldn't let her move to a new room because she is receiving a medication called heparin through an IV.  Dustin and I talked with the doctors yesterday and discussed how much Bailey needed to be able to go to different floors so she could have the freedom to get out of her room some.  They gave Bailey the choice to take the heparin off but if she did that she would have to get two shots a day.  She said she would do the shots if it meant she could have a little more freedom:)  SO . . . we are now on the 15th floor which is the cardiac floor and she is wire free!  We have a humongous window with a much better view to see outside:)  We were able to take her to the cafeteria yesterday for a snack, we took her to the fourth floor to the outdoor garden and she spent 2 hours last night on the 16th floor playing bingo and being a d.j. on Radio Lollipop!  It was the best day we have had in 2 weeks.  She was even able to work on some homework. 
     On the medical side, she is really doing fantastic.  She said for the first time in 15 days yesterday that she had no pain.  The only thing keeping us here is the INR.  We need it to get to 2.5-3.5.  Saturday and Sunday it was 1.3 and Monday and Tuesday it was 1.5.  It is crawling!!  Once we get in a theraputic range we can take her home.  We have been here 15 days and Dustin had to leave last night to go back to work today.  This weekend is Maddie's first dance competition and we are all hoping to be there to support her.  Hopefully, we can get her out of here soon.  Thank you again for all the support and encouragement.  We are so humbled.
In Christ,
Jackie

Sometimes it's fun to be a rule breaker;-)

     So yesterday we had a pretty good day.  I had a visit from one of my great friends through high school.  I practically lived at her house 9th-12th grade.  Julie Brashears and her two beautiful girls came to visit us in the hospital:)  I hadn't seen her in about 10 years!!  She was just as crazy and fun as she was back in high school.  It wasn't long after she got here that we decided to get into a little trouble (sorry mom, dad and Mr. and Mrs. Brashears) .  Julie had bought a brand new chihuahua puppy the day before and it just happened to be small enough to fit in my purse.  What 14 year old girl wouldn't what an adorable puppy to visit her in the hospital, right?  I am sure there is an argument for the validity of a pet's healing power!! So we brought the dog up in my purse and Bailey had about 2 hours of smiles while cuddling this adorable puppy!!

Bailey also had Nick come by and visit.  Unfortunately, she wasn't feeling great but still got to hang out a bit with him:) 

     I feel like Bailey is over the worst as far as medical issues but is really struggling with coming to grip with her illness.  We have been blessed with having several people in our life that know of ways to contact other teenagers with CHD (congenital heart defects).  We are actually talking about attending the It's My Heart 5k that is sponsored by TCH on February 18th.  It is supposed to be a lot of fun and an opportunity for Bailey to see thousands of people come out and support her cause.  I feel like Dustin and I have had 14 years to come to terms with Bailey's diagnosis but for Bailey it is like she is just learning about it.  The good news is we are in one of the best places in the world for a kiddo with a heart defect.

     Today was also a good day for me.  My sweet husband came up with the idea of letting me get out of the hospital to go surprise Maddie for lunch.  She was super excited when she saw me in the cafeteria and I had to fight back tears at her joy:)  I was also able to stop by Bailey's school and pick up some work for her as well as talk about the best way to tackle all the absences this year.  We ended our evening with a visit from old friends from when Dustin worked at Champions.  The Killoughs came to see us and Bailey was really happy to catch up with a friend, Elizabeth, who was her partner in crime since about the age of 6.  She just said, "I forgot how much I love talking to Elizabeth.  She makes me happy."  It doesn't get much better than that!!

     Hopefully, tomorrow I can talk about moving day.  Dustin and I are trying finagle our way off the 7th floor.  If we can get to a different floor then she might be able to go to the teen room, Radio Lollipop and maybe even outside.  We feel like these things might be a real help for the hospital blues.  Thanks again for all your words, prayers, cards, gifts and visits.  We are blessed:)

In Christ,

Jackie



Lazy Saturdays:)

     Friday was one of the longest days ever!! I know I fell asleep around 9:30 and didn't wake up until 10:30 the next morning.  We spent the day in our pajamas and laid around and watched movies all day.  It was a quiet day with no visitors and we just relaxed.
Basically the problem in Bailey's heart boiled down to a small leak in a spot that was allowing the blue blood (unoxygenated) and the red blood (oxygenated) to mix.  This made her more vulnerable to clots that could then shoot up  to her brain.  We will continue to pray that this fix will get her back to her healthy self.  The last two days have really been a blessing with seeing her just back to her old self.  She is more relaxed and generally just happy.  Her oxygen saturations have improved and she just generally feels better.  She has also been anxiety attack free since Thursday!!
     So the next question is how much longer are we here.  Well that is a sticky question.  If you live close to us you know that the longest part of most of our hospital stays boil down to the coumadin.  Before we can go home, Bailey's blood has to be coagulated by a medicine called Coumadin.  She takes this everyday at home but when we go to the hospital they put her on an IV drug called heparin.  The reason for this is it works much faster and is easier to adjust.  Now we have to work on weaning her off the IV medicine to the oral medication.  This is measured by something called INR.  Bailey's INR has to be between 2.5-3.5.  This is a long process sometimes.  Right now her INR is 1.3 and we started back on the Coumadin  yesterday.  I am guessing we should be discharged by Wednesday or Thursday but we will see:)
     We had some happy visits today and a surprise for Bailey, but I will save that for tomorrow's blog post.  Thank you again for all your prayers.  It is amazing how many people are praying for us (even so many that don't even know us).  How do some people believe that God is not alive and working?  I know he has been in this hospital with us without fail.
In Christ,
Jackie