Good Evening Everyone,

I’m not sure how many people are still following this site, but now is a good time to update it. Its been a while since I written anything down about Kelsey and all she has been going through lately, so this may be a little rough.

Most of you know that we have had a rather mild, at least by Kelsey’s standards, summer. The monitor she has been on has continues to serve as a reminder that we are no where near finished with this. We are alarmed anywhere from 10 to 50 times a night that her oxygen and/or heart rate is still dropping. We started a test program with LifeWatch about 3 months ago with a monitor they think will help. It tracks her heart rate and if there is a significant drop that last for a prolonged period, it will alarm at the monitoring company and they will dispatch an ambulance. So far, we have not had an ambulance show up unexpectedly.

There have been instances over the summer that caused concern, but it seems so long ago that I honestly can’t remember all of the details. But over the last 6 weeks we have seen notable changes in Kelsey’s condition. Her rates have been getting dangerously low, 50’s for the heart and a few times I’ve seen her oxygen in the low 80’s even high 70’s. The specialist we have been seeing really do not know what to do at this point. They all say, “Well, if her rates drop to ‘XX’ then we’ll do something.” What, what exactly will we do? That seems to be the million dollar question. She had an MRI two weeks ago that showed no signs of bone regrowth or any other forms of compression, but by the symptoms, something is going on. We are scheduled to meet with a specialist in Maryland on November 12th that will tell us if she has Ehlers Danlos syndrome and tethered cord. If she tests positive for one or both of these, then we will have a new direction. Until then, we are at a stand still.

Last Wednesday, the 15th, Kelsey and I were sitting on the couch downloading her monitor, well, I was downloading it, she was supervising. All of sudden, she sat up and said, “Dad, feel my heart, its doing it again.” I put my hand over her heart and it felt like she had butterflies in her breast pocket. Her heart was beating very erratically. Then she grabbed her throat, started crying and fell on the floor, trying desperately to take a breath. I was able to calm her, and Nicole, long enough to move her to our bed and lay her down comfortably. Her pupils were rapidly changing sizes, from needle size to marble size, very erratically. She badly wanted to go to sleep, and as I was trying to keep her awake, her eyes began to roll back in her head. I told Nicole to call 911 and by the time police and First Responder showed up, she was coming back to normal. As the ambulance showed up, she had pretty much gotten back to normal Kelsey status, like nothing had ever happened.

Nicole and I decided that we would draft a letter to all the pulmanologist in the South East and shotgun them out, hoping someone has seen this before and could offer a fresh perspective. So far we have had two responses, one from Orlando and one from Augusta. Nicole left tonight for Orlando to meet with that specialist on Wednesday the 21st. Hopefully they will be able to treat her secondary problems while we figure out what is causing the primary problem.

That is a very condensed version of what Kelsey has been experiencing lately and I plan to start up documenting her journey once again. Please continue to keep Kelsey and Nicole in your prayers.

In Christ,
A

Good evening everyone,

It has been quite some time since I have updated, so this one has the potential to be rather lengthy.  I have actually been embarrassed about my lack of attention to this site and that has led to my delayed postings.

While there is plenty of information for me to write about, tonights postings is of a urgent nature.  Nicole and the girls went to New York last Tuesday, the 23rd, for a routine check up with Dr. Feldstein.  That visit went well, or at least as well as could have gone, but I will talk more about that later.  They were scheduled to fly back home to Savannah today, but that was postponed.

While they were in the terminal, at the gate, Kelsey had some type of abdominal attack.  I had just spoken to her on the phone and explained I was out of town on business and would not see her until Saturday.  She was pretty upset as she gave the phone back to Nicole.  About 15 minutes later, Nicole called to say Kelsey was doubled over in pain and that an airport EMT had called an ambulance.  They took Kelsey to the emergency room at Beth Israel Medical Center in Newark.  Nicole is there by herself, I am in St. Louis on a business trip.  Our cousin,  Shannon, contacted her church and two members gladly volunteered to go the hospital to help Nicole with the girls.  Thanks Jorge and Anna!

They have done an ultra sound, a CT scan and an X-ray of her abdominal area, but as of 9:00 pm I have not heard any news as to the results.  At around 4:00 pm the doctor told Nicole he had ruled any type of viral infection and that it was either apendecisitis (sp), some type of issue causing her intestines to knot her an anuerisum (sp).  Kelsey is going through periods of extreme pain then periods of no pain at all.  We do not know what is going on with her and are asking that we all pray that God continues to show Kelsey favor and mercy.

Now for the Chiari related update:

Since her last surgery, we have seen times of great pleasure and great turmoil.  Kelsey has had week long periods of extreme headaches, not being able to sit, stand or lay down due to the pain.  Then there have been week long periods when we barley see any type of symptoms at all.  Through continued visits with the cardiologist, we found that there is still no type of monitor made that will give us (and the doctor) the readings we need.  Nicole contacted a research team in PA that specializes in building specialty medical devices in hopes they would be able to build something that help us.  While they are familiar with Chiari, they were unable to build the monitor we need.  Therefore, we are back to square one on the monitoring.

Through all of Nicole’s research, she has more and more links between Ehlers Danlos syndrome and Chiari Malformation.  All this information was given to the cardiologist and nuerologist, both of which suggested we meet with a geneticists.  Nicole and Kelsey met with a specialist in Jacksonville, who was very eager to help but had not seen this type of case before and told us she needs more time to research on her own and would follow up with us later.  There are two genetic specialist in the Northeast that we are trying to get appointments with that have more experience with the Ehlers-Chiari link.  We are hoping to see them soon.

Kelsey had her 6 month MRI scheduled for September 8th, but that was very unsuccesful.  Kelsey was stuck 6 times in an attempt to start an IV.  But with her fear of hospitals and the lack of a oral sedative, the nursing staff was unable to get the IV to work.  We rescheduled for the 17th and were able to finally have the test done.  This brings us to this latest trip to NY.

They met with Dr. Feldstein on Wednesday the 24th and he gave her a relatively decent report.  He said that the Chiari looks to be under control and he does not feel like she should have any complications related to the malformation.  While that is very promising news, it did not explain why she is still experiencing the heart pauses and the other symptoms we have seen.  If you remember a few days after the March surgery, I mentioned the possibility of a complication with her spinal cord.  Dr. Feldstein said that the scan should what appeared to be some type of abnormal formation the cord, he would not know if it was significant until after the surgery.  That time is now.  The MRI scans from this month showed him that there is some type of issue with the spinal cord, but he does not feel it requires surgery at this time.  He recommended we continue on the same path we are on, and continue to monitor her as closely as possible.

I appreciate all of you that have continued to check this site, and please accept my apology for not doing a better job at updating.  We are still praying that God will completely heal Kelsey and she will lead a normal life.  With all of the loving comments and compassionate gestures from our friends, family and church, I know that you all are praying for the same thing.  I had a lot more to say, but given the events of today, I’m just not in a real talkative mood.  I had forgotten how good this feels to write out our journey, so over the next few days, I will add more as it come to mind.

In Christ,

A.

Good Evening to all of you faithful ones that are still checking this blog, although I haven’t posted in a little while.  Even though I have not updated, this does not mean that we have not had developments and I truly apologize for not writing in a while.

Kelsey is doing okay, but she has had quite a continuation to her journey since we got home and tried to carry on with normal life.  Since there have been so many things happen that I want to talk about, please allow me to return home, check my notes against Nicole’s and I will post Sunday night.

Thank you all for the continued prayers,

A.

Good Evening All,

It has been quite a while since my last post and I admit that I am very embarrassed for not putting anything up here sooner.  With that, where do I begin?  First of all, I would like to say that Kelsey is doing very well.  There are still issues that we deal with, headaches, balance, the invisible but ever present heart pause, but all things considered she is doing very well.  Secondly, since my last post, our adorable little Kelsey had a birthday and is now 3!!  I truly understand what the more mature community means when they say, “Before you know it, she’ll be grown and moving out.”  I can believe that, where has 3 years gone.  I digress.

Anyway, since the last post we have met with the heart specialist twice and the neurologist once.  Dr. Long, the cardiologist, first told us that he needed to do whatever he could to monitor her situation and that he was very concerned.  I told you that.  He is still very concerned, but there is nothing we can do to monitor her the way we need to.  We are still using the puls-ox at night, but now down to only maybe 3-4 times per week.   Each of our specialist have agreed that her heart is pausing, there is no denying that.  What they are saying is that the duration of the pause is not long enough to cause any problems, at least not at this point, and trying to constrain her by a monitor 24-7 would only add more problems.  Those of you who know Nicole well and/or have spoken to her for more than 3 minutes about Kelsey know that she spends an enourmous amount of time researching Chiari and trying to find answers.  What she has found at this point, that seems the most relevant to Kelsey is an condition known as Ehlers-Dannloss, (please forgive the spelling, I spelled it like it sounds).  This is primarily a connective tissue disorder, but is linked very closely to Chiari patients.  I’ll be honest and say that I understand the link, but not well enough to verbalize to you guys.  Just know that the neurologist is looking into and we hope to have an answer in the next few weeks.  Nicole and Kelsey are traveling to Jacksonville for an appointment with a geneictsist (again forgive the spelling) to set up a test for Ehler’s-Danlosds,  I think towards the end of June.  Until then, we were life should proceed as normal, and to watch for any abnormal behavior and document it.  If she passes out, faints or vomits, then we know we have a problem and are to go straight the emergency room.  Aside from that, let her be 3!    And we try, but at the same time it is hard not to be overly protective, we are just working on finding the right balance.

As for the family, we have had changes all around.  Kelsey’s grandfather, the famous “Icky” she is so proud of, recently graduated from John Marshall law school in Atlanta.  What a testament to dedication and perseverance.  He worked a full time job during the day and almost carried a full class load at night.  Congratulations Eric!   Callie has moved up to level 3 on her gymnastics team, and she is so very proud of herself, as she should be.  She remains the solid rock of this family.  Not trying to be all poetic  and “deep”, but she is like the tides. You can bet the tide will come in and go out again, without fail.  Well, with Callie, you can bet she will be lovable and angelic, no matter the circumstances.

Nicole and Cambrie are still in a power struggle, trying to determine who is in charge.  Cambrie is waking up at least 2-3 times per night, screaming like she is in severe pain.  We have done this twice before, so we have an idea when they are spoiled and when something is wrong, and at this point, something is wrong we just can’t figure out what.  But, this too shall pass.  As for me, I have left Yancey Bros. and the Caterpillar organization and moved on to AG Edwards/Wachovia Securities as a financial advisor.

To keep with my theme of (or least attempt at a theme), I will end with a praise.  You hear a lot of times people say, “I’ll be sure to add your daughter to our prayer list”?  Well you know it happens, but if you are not part of the church or list, or if you are out of state, you may never meet the “list”.  The Friday after I started my new job, one of the ladies walked into my office and said, “I apologize, but I had  no idea who you were.”  Of course, my reputation precedes  me, so at this point I was wondering if this was good or bad (thats a joke).   She said, “We have been praying for your daughter since March, and never realized you were her father.”  That proves the true  nature of God’s people, period.

A.

Good Morning All,

It has been quite some time since the last update, there has been little to write about.  Until today.  We are meeting with our cardiologist this morning to discuss some things that Nicole has found while some additional research.  She has been reading about a condition called dysatonium, excuse the spelling.  At this point, I cannot really tell you a lot about what the condition is, I am still unclear on the details.  All I know is that the heart pauses could be linked to this, not neccesarily the Chiari.  I am remaining very optimistic that once Kelsey’s 4-6 month healing period is behind us, her symptoms will clear and we can hopefully close this chapter.  We will know more in the days ahead, and I will do my best to update those of you visting this site.

As for the rest of the band, all is well.  Cambrie is growing and coming along very well.  She and I will sit in the floor each evening playing with her toys.  She can’t sit up from a laying position, but if you sit her up, she has great balance.  I had forgotten just how amazing it is to watch a baby learn new things!

Callie is doing well also.  She is preparing to move up to level 3 on her gymnastics team, and she is so very proud of herself, as am I.  We are about to break for the summer with her homeschooling, hopefully that will ease a little pressure on Nicole.

As for Nicole, she is researching Kelsey’s conditions more now than ever before.  Not a day goes by that she has not turned up some new information or made a new contact that shares the struggles that we are going through.  This is a further testiment to what a strong and tremedous mother she really is.

That’s about all for now, but I will be back later with a report from the doctor visit.

A.

Good Afternoon All,

Nicole and I met with Dr. Long this morning to discuss the implanted loop recorder I mentioned last night.  After he spoke to Nicole yesterday he continued to research the ILR and learned that it is designed to begin recording anytime there is change in normal activity.  This means that it will only begin recording when her rate drops below the preset parameters or when it pauses.  What it will not do is record an entire days events.  Therefore, this type of monitor will only show us half of what we want to see.  Dr. Long is hypothesizing that the pauses are a result of the lowering heart rate.  He believes that as the brain begins to recognize that it is not under pressure any longer and her rate comes back into a normal range, the pauses will decrease in frequency and length.  Since the implanted monitor will not show what is going on every minute of the day, he does not feel it is worth the surgery to implant it, at least not for now. 

So, we are basically back at square one.  For me, trying to remain as the eternal optimist, I feel this is one more item that we have ruled out as an option.  In trying to solve a problem you can attack from several angles.  For me, marking off things that will not work is just one way of solving this problem.  We still do not know what WILL work as a monitoring system, but at least we know what WILL NOT work.  We spoke about the Polar training monitor that Kels has been on for a few days, and he told us not to use it.  First of all, it is designed to be used by teens to adult aged people, primarily during exercise.  We knew this, but we had to try it, as it was our most viable option at the time.  Since it is susceptible to many different types of interference, it is very hard to tell what is a heart pause or what is just white noise.  The halter monitor that we used after our first meeting with Dr. Long is not an option either because it has to be downloaded in their office after every 24 hours, and there is some much data it would be like looking for a needle in a hay stack.

Now what?  You tell me, becaue we don’t know.  I do know that Dr. Long is working very hard on finding a solution and even after only a few conversations with him, I trust his ability. 

I’m at work now trying to update the site, so I feel I may have left out some details.  When I get home later I will re-read this and most likely edit it to make the picture more clear.  Thanks for checking on Kelsey, I’ll let her know you stopped by.

A.

Hello and good evening,

Just a quick update to let everyone know of a development from this afternoon. As you may have read, we have had Kelsey on an athletic type heart monitor for the past few days. It is the type worn by athletes for cross training or long distance training, to monitor their change in heart rate as they condition themselves. What it does NOT do is give an EKG read out, and therefore the “pauses” or flat lines do not appear as vividly as we would like. We, Nicole more than anyone, has been studying the data in the reports from the monitor trying to find a pattern or something that we can definitively say is her heart pausing. So far, she has had very little luck.

While all this has been going on, our cardiologist here has been doing his own research, as well as consulting with other cardiologists, literally around the country, trying to determine what the best monitor would be. He, along with the other specialist he has spoken with, has determined that an implanted loop recorded (ILR) be “installed”. This is a small device that will have to be surgically implanted into Kelsey’s chest and will record the information needed to insure we are treating her properly.

We meet with the Dr. in the morning at 9:00 to discuss the procedure and the best time to do it. It will most likely happen quickly, since he feels she is too vulnerable without a 24 monitor of some type. Do you know just how badly we do not want to put her through another surgery? Granted, this one will be very minor compared to the decompression last month, and it is a lot better than the alternative, but we were just starting to get her calmed back down.

I have been trying for the past 4-5 minutes to put down on e-paper what I am feeling and I seem to be having a hard time verbalizing it. God’s time is, well it is just plain weird sometimes. I don’t mean that in a questioning manner, but I can’t help but wonder, “Why now?” Why another surgery, regardless of the magnitude, why does she need to go through the trauma of hospitals and needles and all that goes along with it? As I am typing this, I am thinking of my neighbor who is recovering from Leukemia. He had one of his hips replaced today and I bet he didn’t ask, “Why now?” , he just did it because he knew he had to.

I’m frustrated, the more I think about Kelsey in a hospital the more irritated I get and the more I seem to be rambling on. I will update tomorrow after we know more.

Good night and, please, all say a prayer for John Micheal that he is up and walking on his new hip very soon.

In Christ,
A.

Tink..Tink..Tink…

Thats me knocking on the monitor to see if any of you are still out there. I have not updated this site in almost 10 days and I aplogize for that. In all honesty, there really is not much to report, which I guess is a good thing.

Kelsey seems to be doing very well. Her heart rate at night is staying up, over 100 for the majority of the night. Her oxygen is staying up as well. This in conjunction with the elevated heart rate tells me that she is not having the severe apnea events like she was. We are, or at least attempting to, monitor her constantly throughout the day, thanks Icky. We have her on a Polar RS800 heart rate monitor that takes a recording every second. We looked at the data a couple nights ago and there were 8,300+ heart beats recorded. That is a lot of date to go through, so I understand now why the cardio team did not want her on the constant loop. Nicole and I will go blind trying to find one or two 5-8 second pauses in 8500 beats. Additionaly, these type of monitors are designed for teen to adult aged people, so we are in a trail period. I hope this works like we hope, Ick went to a lot of trouble and expense to help us out.

As for Nicole and the rest of my pack, things are pretty good. Nicole is still not resting very well, primarily because the other two girls won’t let her. Cambrie has started getting used to her crib and will sleep there most of the night. Thats a good thing. I have gone in our room during the middle of the night to find Cambrie as sleep against Nicole’s chest with Kelsey sandwiching her from behind. That can’t be comfortable. That’s why I have moved to the couch for a while, to give them enough real estate to stretch out.

Callie had a warm up gymnastics meet last weekend (warm up for the State meet) and did very well. She scored a 35.75, I was very proud! We go to Dawsonville this weekend for the State meet, which will be a big deal for her. She missed qualifying for Nationals by just a few points, but maybe next year.

Oh, by the way, last Saturday night we went to Sylvania to a rodeo, the first we have been to since we have lived in Georgia. For all of you who knew Nicole before we were married, you will appreciate this. They we having a calf scramble for the kids as a fund raiser. This is where they tie a ribbon on a calfs tail and have all the kids try to pull the ribbon off. Well, someone thought it would be good idea to have the ladies 18 and older try. Guess who was the first person to jump the fence and volunteer? Of course, she had to. She did not catch it, but had a good time trying. I especially had a good time watching. Trust me, there we pictures and they will be posted here on this site.

Like I said, not much to report medically for Kelsey, but as you can tell, life is slowing coming back to normal. My plans are to continuw this site indefinitely, so please check periodically.

In Christ,
A.

Did you all think I forgot about you? Well, I haven’t
Since the girls have been home, we have tried vigorously to get life back to normal. And what a task that has proven to be. I have said before that Kelsey does not do well the days and weeks following surgery. Why should this time be any different? I know why, now we add a 5 month old baby into the fold and see what happens.

Enough philosophy, lets get to the point. While we have many indicators to gauge Kels’s improvement, we have seen a slight improvement in her resting heart rate. Over the past few nights, I have gone into their bedroom and seen the monitor above 100, somewhere in the 115-122 range. This would be around 3:00-4:00 am, when you know she is in a very deep sleep. That is tremendous by some standards, given that only 4 weeks ago her rate was around 73-77, dipping into the 60’s. From that alone, I at least, can see somewhat of an immediate effect from the surgery. On the other hand, before we dash from crowded forest to the mine laden field, this does not mean she is complete and we can count this journey complete. We were fore warned and highly anticipated these types of results. The brain and stem and have been under such an enormous amount of pressure, any release at all will cause a change. What we do not know is how constant this change will be. Dr. Feldstein told us not to expect to see any type of permanent change for at least 3 months. Basically the brain is trying out it’s new settings and may find that it is not happy with them.

On Friday April, 4th we met with Dr. Long, a pediatric cardiologist here in Savannah. He was recommended by a Dr. in Atlanta who is friends with Dr. Bohney from Columbia Presbyterian in NY. Did I tell you that the cardiologist in NY was named William H. Bohney, aka Billy the Kid. I pointed that out, but he did not find nearly as amusing as I did. Anyway, Dr. Long made a few comments that made us relaxed and let us know he is taking an interest in Kelsey’s case. First of all, he told us as he was reading her chart he saw some big names in the pediatric cardio field and he knew better be on his “A” game. Secondly he told us her heart condition is rare in children her age, but not totally unheard of. The problem is how do you correct it. Before we discuss a solution, let me identify the problem. First, lets imagine driving a fine German automobile, say a Mercedes. Imagine driving that car on an endless freeway with varying speed limits. Now imagine driving that car with one foot on the gas and one on the brake, the entire time. As you approach the higher speed zones, you press harder on the gas and less on the brake. But then you enter a lower speed zone, so you press slightly harder on the brake and apply less to the gas. This scenario goes on all day and all night with the heart. The brain raises and lowers the heart rate constantly throughout the day, always maintaining an even, gradual transition from low to high back to low back to high. You probably never feel it, unless you are startled, scared or experience any other type of emotion. With Kelsey, her brain will be driving fine with the gas all the way down, the the brain STOMPS on the brake. Then it JUMPS on the gas and the rate goes back up. What is not happening, is that the brake is never released, allowing the heart rate to go up to what would be a normal rate for her age group. As we all know, and we were told in NY, the body’s natural pace maker is the sinus node. Think of that as a battery. For that battery to be malfunctioning in a child Kelsey’s age is very, very. very. very. very (I think Dr. Long used 9 “very’s”) unlikely. Therefore, the problem has to be coming from the brain. We left there Friday morning with a 24 hour loop monitor. It recorded her activity for a full 24 hours and we hope to see a clear picture of what is going on. The downside to this, and this is what I was meaning before, is that the brain is still relearning its parameters. There is a good chance the monitor will show some abnormalities, and there is just as good a chance that it will not. This process, I’m sure, will have to be repeated a few time to get a real clear picture.

Other than that, Kelsey seems to be doing well. She is still on restriction from her scooter and other outside toys, but that comes off in about 2 weeks. Her whinning is still there, but that is normal with a 2 yr olf after surgery. Sunday morning during the church she was being a little loud, not quite disruptive but almost. Then she had to go the bathroom. While we were out someone walked by and asked how she was doing. I was actually very glad to say, “She is doing well enough that we have to have a talk about how to behave during the sermon.”

The pictures above are from this past Sunday. It was baby dedication day at Grace, so we had both Kelsey and Cambrie dedicated.

Nicole had an appointment with the pulmanologist today, and I am still trying to understand how that went. After I figure out what she wants to do, I will post another comment. I know I haven’t posted in a while, but please don’t give up on me.

God Bless,

A.

Good Evening Everyone,

 It has been a few days since my last post and once again I apologize.  The girls came home on Wednesday the 26th, and since that time it has been pretty chaotic around here.

Kelsey is doing very well so far, considering where we have been.  She is trying to be a normal 2 year old, but we are having to limit her activity, doctors orders.  We were told that we have about 3 more weeks before the danger of the patch leaking is behind us.  That is great, but that is a lot easier said than done.  Most of you that know Kels personally know that she cannot really sit still for very long.   But, we are all making sacrifices to work toward a common goal.  Callie is not flipping-twirling-dancing around like she normally does, which helps.  I am not picking her up and throwing her around, as she likes.  Nicole is trying to play more games that involve cognitive thought rather than physical exertion.  

As for Nicole, she is still beyond exhausted.  It has been such a long road and it is finally catching up to her.  Thursday after they got home, Nicole started to feel more sick than she had the past couple days.  Her stomach was turning and she had a head cold.  That night, it really hit her hard.  We had a cardiologist appointment scheduled for Friday morning, but I canceled it because Nicole needed the rest. That has been rescheduled to next Friday or first cancellation, which ever comes first.  She (Nicole) needs a lot of rest right now, and I am not sure how to provide that to her.  The older girls are fine playing with me, but Cambrie only wants Nicole.  Cam still cannot sleep by herself.  She thinks if someone is not holding her, her world will end, or at least she cries like her world is ending.  Tracy, one of Nicole’s good friend, offered for us to bring Cambrie out, let her watch her while we did other things for a few hours.  She (Tracy) can handle a crying baby, so that would help break her of some a bad habit.  I am somewhere in the middle on this one.  While I do find it rather difficult to listen to my child scream and cry, begging for attention, I know that she only knows one form of communicating right now and she also knows the louder she cries the quicker she is picked up.  Tough call, very tough call.

Anyway, the plan for now is to continue as we are, watching Kels closely until we can decide on  the monitoring equipment we will be using.  We have the first of a series of cardiologist visits next Friday, followed by a second a third opinion in Atlanta and Jacksonville at a date yet to be set.  

Please continue to pray for rest and healing.  More so for the adults than the child of need!  Also pray for clarity as we speak to these doctors, so much information can be overwhelming.  As always, I will be updating as more things happen.

 In Christ,

A.