Jarod's Joy

Ok, I know it's a little early (well, not really) to start thinking about Christmas. While it is more important to remember the true reason for the season, we as a family would still like to participate in gift giving but a little different than in years past. Every year we continue to try to decrease the amount of gifts as we have all we ever really need and, if we want something, we go out and buy it ourselves. Each and every year, it gets harder and harder to buy for loved ones because, like us, they have everything they need. As a family, we have decided that Jarod has been so blessed by so many people in our community that we would like to "pay it forward" somehow.  As we sat together last Christmas, we talked about it and what we would love to happen is that we "adopt" a family within the community and give them a Christmas that they might not be able to have without a little extra help.

Christmas is one of Jarod's favorite times of the year, and not for the receiving, but for the giving which is why we will call this Jarod's Joy. He has such a generous heart and loves it when he can do something for someone else. This will be our first year to try this and we hope it becomes a yearly tradition. Those of you who would like to join in with us, please feel free to contact us to either make a donation of a new, unwrapped toy or outfit, or make a donation to "Jarod's Joy" through the donation button below.


Love and Blessings,



Steph

Jarod's ALS Ice Bucket Challenge

I know there are many views on the ALS Ice Bucket Challenge phenomenon, mine included, but we can all agree to disagree on this.  I know many love seeing the videos, many others cringe when they see just one more on their "newsfeed". My personal feeling is that my donation is more important than dumping ice water on my head and there are also some health issues I have that I am not willing to make worse by doing such, so I made a donation to ALS. I say KUDOS for how much awareness this campaign has brought ALS and how much money it has raised in hopes of a cure, PHENOMENAL! I know that I would love to live in a world that was free of ALL diseases, hoping and praying for a cure for each and every devastating disease out there.

Whether you find the challenge fun to do, or just want your 15 minutes of fame, or you do the challenge and donate, or do the challenge in order to get out of donation, it's your choice. We all have a choice and certainly shouldn't be put down for participating or not participating.  Do your research and follow your heart.

While CHD Awareness and the hope that there will someday be a cure for congenital heart defects (CHD's) and not just a "temporary fix" is most near and dear to my heart for obvious reasons, I am allowed to step out and support others as I choose. There are millions of people in the world fighting their own battle and hoping and praying for a cure someday as well. I honestly wish I could help every single organization out there trying to find a cure and each year I try to choose something different in addition to CHD Awareness. These have included The Children's Heart Foundation,  The American Heart Association, United Cerebral Palsy, Crohn's and Colitis Foundation, St. Judes, Children's Miracle Network,  Make-A-Wish, Relay for Life, etc.  I also give to personal donation pages when I am able but, once again, I just have to follow my heart. Again, I would say do your research and do whatever you want despite what others might think.

Jarod was challenged and I gave him the option.  After all, he is 16 years old and can make that decision.  While he had very little ice because of multiple takes, he wanted to do the challenge and did so to the best of his ability. He wanted to donate to ALS as well as Mended Little Hearts of the Shenandoah Valley and I am super proud of him. He is always wanting to help others and, while his donations may not be much, they were his choice and his money. Together, we can all make a difference.

https://www.facebook.com/photo.php?v=706507362719381&l=1515780254325252721

Love and Blessings,


Steph

8/27/14 Update:  I know in this post I stated that I was not going to do the actual ALS Ice Bucket Challenge due to my own personal reasons and just donated money. I must now retract that statement.  I mean seriously, how can I resist when my miracle, Jarod, "nudged" me by telling me to stop being a "whiney hiney", so I just went for it.  Thanks, Jarod, for always giving me that extra nudge I need no matter what the circumstance is.  You are truly my hero <3

What a Difference a Year Makes

For all of our family and friends, I want to thank you for all of your love, prayers and support. I know this is long overdue but I also know that each and every one of you that are a part of our lives, know how much we love and appreciate you, and we wouldn't be where we are today without the love, support and prayers. It has been some time since I have blogged, well actually some time would be an understatement, and I apologize for that. There are so many people over the years who have supported us in this journey with Jarod and like to keep up with how he is doing.

Prior to Jarod's last surgery, a very risky surgery due to a rare complication of his hypoplastic left heart syndrome, we were sent to Children's Hospital of Philadelphia (CHOP). Once the plan was in motion, our amazing church family and friends graciously volunteered to do a fundraiser to help offset the cost of travel, lodging and meals while in Philadelphia. We will be forever indebted to our family at Bethel Presbyterian Church as well as the members of Redeemer Lutheran Church who made a very generous donation because they love Jarod as much as we all do. We are also extremely grateful to Vesuvius Baptist Church who selected Jarod as their recipient of their yearly 5K to help once again offset the cost of his medical expenses. We are truly grateful to have so much love and support in our community, a community that loves Jarod nearly as much as we love him.

For those of you who know a little about Jarod's congenital heart defect (CHD), he was born with hypoplastic left heart syndrome (HLHS for short) which leaves him with a single ventricle, essentially half a heart. After having his three staged "repair" by age two, he was doing so well from a cardiac standpoint that sometimes I would actually forget there was anything wrong with his heart, knowing all too well that the surgery is only a temporary fix, not a cure. We always knew transplant could be a possibility.

We left Virginia on 6/25 because they had to do Jarod's pre-op on 6/26/13. As soon as we walked in to that hospital, everyone made us feel at ease and Jarod seemed very calm considering what was about to happen.  The pre-op went well and this is when we went over all they had come up with as a team during their case conferences about Jarod. They would do an aortic valve/root replacement, they would NOT be able to remove the stent in his left pulmonary artery that compresses on his left bronchus, and they would try to revise his Fontan from a lateral tunnel Fontan to an extracardiac Fontan to "optimize" this surgery and his overall cardiac function.

6/27/13 - First day, the morning of surgery, Jarod was getting ready for surgery and was able to make his own decisions about certain things. He chose to have his IV placed while awake, asked all the questions he had and then basically told us we could leave even without any "giggle juice". I know there are many approaches on how we as parents prepare our warriors for surgery and Jarod went in to this surgery as informed as he could possibly be and felt at ease on the morning of surgery. As we gave hugs and kisses and told him we loved him, they wheeled him down the hall and walked us up to the surgeon's office. We met with Dr. Spray as they had taken Jarod to the OR and we felt very confident that we were in the right place. Dr. Spray certainly seemed confident which is extremely important since this was the very first time we had met him. He promised to take care of him and they would keep us posted as surgery proceeded.

I must say, CHOP is a wonderful place where you can feel at ease even in the worst of situations.  There were several other families there going through the same thing we were...the pacing, the waiting, and everything in between just to pass the time. There is a wonderful lounge sponsored by the Ronald McDonald House where you can wait as a family where there were plenty of snacks, coffee, books, games, etc. to keep yourself as occupied as you could possibly be while waiting for updates. Needless to say, there wasn't a lot of game playing or book reading done while we waited.  We were blessed to be able to have my Mom, Dad and JW there with us for this surgery as in past years, it was so important for JW to have as normal a routine as possible when he was younger so he stayed with my parents which was a lifesaver for us during those early years.

As we waited, we got brief updates over the next few hours such as Jarod was on bypass, valve is in (went from his own which was over 40 mm to a 25 mm St. Jude valve), still on bypass, starting to warm him up, should start closing in 1/2 hour if Dr. Spray is okay with everything, off bypass and should get to talk to Dr. Spray in about a 1/2 hour, etc. The next update got us really scared when they said there was a slight delay. They said he was "ok" cardiac wise but they tried taking the breathing tube out while in the OR and he was not ready for that so it had to go back in. It took them longer to do the surgery than expected but it wasn't until afterwards that we knew the true extent of what actually happened.

Still not knowing all the details, we got to talk with Dr. Spray who didn't seem quite as confident as when he sat down with us earlier that morning.  He said that they were very surprised to see just how sick his heart was and that had we waited much longer, transplant would have been his only option. He said "Jarod is one sick little boy". This is when we found out that as soon as the first skin incision was made, Jarod went into v-fib so they immediately did cutdown to get him on bypass and replaced the valve so they could get things under control. Needless to say, they were not able to revise his Fontan.  It was actually almost time for us to be discharged when we learned just how close we came to losing Jarod.  We knew about the rhythm issue which occurred with just the skin incision requiring an immediate cutdown in his leg to get him on bypass.  What we learned later was that with this rhythm, they had to do CPR, use the paddles and do cardiac massage for 5 minutes while they got him on bypass.

It wasn't long before they were getting him settled in the Cardiac Intensive Care Unit (CICU). I must say that open heart surgery on a 2 year old is much different than a 15 year old. While I knew what to expect, I was nowhere near prepared for what I saw that first time walking in the CICU. CHOP has such amazing team members and were so wise to put all the strong, male nurses with Jarod while in the CICU. That child has strength that is almost superhuman at times. The CICU was a buzz with numerous doctors, physician assistants, nurse practitioners and nurses getting him stabilized and getting all the monitors hooked up. We were fortunate to be in the room but there were times I honestly wanted to just run out the door. As they were getting him settled, he was quite restless so they added a paralytic. Even with the paralytic, he was trying to wake up and pull out his breathing tube. There were so many quick actions they had to take and we never had time to leave the room while they worked on him, we just had time to step out of the way. There were even times we had to use the code call. He also had a fever since leaving the OR but it spiked to 103 so they had to add a cooling blanket. Once the cooling blanket and paralytic started working their magic, Jarod wasn't fighting all the tubes and wires anymore. As much as they like to remove the breathing tube while still in the OR, this just wasn't the course with Jarod and he would need it for an extra day or two as they slowly tweaked meds to figure out why he kept going into a "junctional rhythm". During the stay in the CICU, the team did their best to get him off as many meds as they could safely do so, in a timely manner. With this surgery, Jarod was just going at his own pace and had to have the breathing tube in longer than anticipated which was the hardest part for me. I could see the fear in his eyes, the look he would give me as if to say "why won't you help me?". I couldn't even get close enough to touch him because I feared I would cause him to become agitated again and I couldn't bear to see that look in his eyes. At this age, he was even more of a fighter which is what we wanted, but also harder to watch as he fought everything they were doing to try to help him to start the recovery process. To see him lying there so helpless made me feel helpless and a fear took over that I never thought I would feel.  Because of that fear I was feeling, the disconnect I felt while he was hooked up to all the monitors, still to this day leaves me with a feeling of guilt that I don't think I can ever get past.

We watched while they pushed pain meds, again and again, and when they added paralytics Jarod would still fight and try to sit up. The above picture is three full IV poles of medications being pumped into his body just to get him stabilized. I can't explain the feeling other than being kicked in the gut over and over again while I watched him lay there hooked up to so many machines, monitors and IV's. I would have done anything to take his place yet I knew he was the stronger one and was going to get through this. The first night in the CICU was a rough one and the nurse was great. He did have to tell us that he was required to let us know that only one parent could stay in the CICU overnight. Considering how critical things were that first night, neither John nor I were leaving and just sat up, back to back, taking turns getting a little sleep. There were a couple of rough days and nights in the CICU with wonderful care but some scary times too. There were many times that even though Jarod had paralytics on board, he would still sit up and fight. He was fighting the breathing tube and the wires in his heart. There were times we would look at him, know he was paralyzed, but his eyes were open. That was when the nurses taped his eyes closed.  He continued to fight and try to sit up with the wires in his heart but he just didn't understand how serious this was. There was actually a time when we told the nurses that they may need to use restraints with him. While this isn't common practice, they saw how much of a fighter Jarod was and used restraints for a little while so they could make sure the wires would not be pulled out.

6/28/13 - Second day, we were still in the CICU but Jarod continued to push forward, just in baby steps. Several meds were stopped and more were added including the dreaded Coumadin for life because of the mechanical heart valve. Finally, it was time to try to take the breathing tube out. This is what I needed most for Jarod. It was killing me inside to see him look at me the way he was and not be able to talk. Although I know this is a challenge to do at times, especially on a child with special needs, they brought in the crash cart just in case and had several docs at bedside. The doctor that would remove the tube talked to Jarod and explained what was going to happen and then removed the tube. Once the tube was removed, Jarod just said "that's okay"! At that point, the tears were rolling (and not just mine) and I actually knew he was "okay". All he asked for was a sip of water which he couldn't quite have at the time.

Later in the day, they noticed Jarod's right leg was very firm and swollen where they had to do an emergent cutdown to get him on bypass. They were concerned that he might have had a DVT but fortunately the ultrasound for DVT was negative. They kept him sedated for the day because he still had two chest tubes and a pacing wire in his heart. Once again, they were smart to put the strong, male nurses with him. He had required a lot of "muscle" these last couple of days. Later in the evening, his O2 sats dipped down in the 80's and he was having a lot of pain due to a lot of fluid buildup. The fluid buildup continued and he couldn't even sip water without his O2 sats dropping on high flow oxygen so they increased sedation and had to take away his water. The good news for the night was that we were able to get a Sleep Room for the night so John and I took turns to get a few hours of restful sleep.

6/29/13 - Third day in CICU, Jarod still had 2 wires in his heart that should come out soon which is HUGE because the wires in his heart make it extremely dangerous for Jarod to even sit up in bed. He still didn't like having the chest tubes but they were just a nuisance, not as dangerous as the heart wires. After the wires were removed, Jarod was able to spend about 6 hours sitting in the chair, dozing most of the time.

He was having more rhythm issues related to electrolyte imbalance so they added potassium and magnesium and hoped to wean him off nitrous oxide throughout the night and into the morning and hopefully remove the two chest tubes.  And then, there it is, just like clock work, day 3 of any hospital stay is when Jarod starts fighting the oxygen mask; off, on, off, on, off...it was a very long night.  This was also the night we felt comfortable enough for one of us to return to the hotel so John would go at night to sleep and I would go in morning and sleep during the day. I think we made a pretty awesome team during this difficult time and I don't know what I would have done without him there the entire time.

6/30/13 - Fourth day in CICU was more for tweaks. After talking about the oxygen issues, they showed us this amazing headset for blow by oxygen...who would have thunk it! We didn't have to fight him to keep this on, it's great and every single child who needs to wear oxygen should have this option.

7/1/13 - Fifth day in CICU and Jarod was making huge strides in his recovery. Rounds were done and at the rate he was going, he should be able to go to the CCU tomorrow. He was still on 6 liters of oxygen which was his next big hurdle. The chest tubes were removed and the arterial line will hopefully come out later. He was still having a lot of pain but they were doing a great job keeping one step ahead of him and keeping that pain under control. He had a quiet day in the CICU so that we could transition out of CICU.

7/2/13 - Sixth day in CICU, we soon got to go to the CCU which is one step closer to home, YAY!

He was up and moving, went to the playroom and his sats were staying stable with little to no oxygen. CHOP also requires CPR training and since I just re-certified, I got a pass but John did his recap at 11:00 that morning. We were definitely getting closer to discharge. We did get moved to the CCU so this is when we as parents have to do everything for Jarod unless we track down a nurse.  Basically, they came in and got their required set of vitals, gave meds and that was about it unless we specifically asked for something.

7/3/13 - Seventh day was a relatively quiet day. Jarod was able to go to playroom and not be hooked up to IV's and oxygen, rested a lot and we were given a lot of information prior to anticipated discharge. Hematology came in to give us the run down on Coumadin and gave us all our prescriptions to get filled prior to leaving.

7/4/13 - Eighth day was our final day. Jarod had done so well once he turned the corner in the CICU that he was ready to leave. There were of course the tons of paperwork, prescriptions to fill but thankfully, this being July 4th, the pharmacy was open so we could fill all his meds. The doctors actually wanted us to stay an extra day until his INR was therapeutic but we planned to stay in Philly an extra night just to be close in case something changed and promised to come by the lab the morning we left for a repeat INR before leaving.

7/5/13 - HOMEWARD BOUND. We can't thank everyone enough for all of your love, support and prayers during this very difficult part of his journey. As we all know, we recover so much better at home so I leave you with this pic, less than a month after getting home from major open heart surgery:

On a side note, going through an event like this can leave you a changed person. PTSD is quite common for parents after this and I will admit that I went through it. I sought counseling and encourage anyone who struggles with symptoms to seek help. I still have days where I dwell on the "what if's" but I try my best not to think about the past and enjoy what our future holds. Each day, I think of two words to get me through: PUSH and FROG - Pray~Until~Something~Happens and then Fully~Rely~On~God.


Love and Blessings,


The Davis Family

Instincts

This particular post has been very hard to muster up.  The fear I feel each and every day regarding Jarod and what has been going on has me beyond distracted so this is to recap the last two weeks.

Instinct: How can such a small word, described as "something you know without learning it or thinking about it" (Merriam-Webster) bring so much turmoil and emotional distress? That answer is easy...when it comes to someone you love with all your heart, especially one of your children, a child who struggles each and every day to push forward despite feeling his absolute worse, you will do whatever it takes.  I don't hate much, but I do HATE CHD's! I must say that it has been years, over 14 years, when I last felt this gut wrenching fear related to Jarod's CHD, Hypoplastic Left Heart Syndrome. 

It all started at about 11 PM on Saturday night, 5/12/13. I could tell earlier in the day that Jarod wasn't feeling quite himself. Later that night, he actually asked for a nebulizer treatment because he couldn't breathe. We did what we always do and started the nebulizer treatments for his asthma. He was able to rest that night but the next day he just wasn't himself. I noticed that his belly was big and this concerned me somewhat so I actually called our local urgent care to ask if there was a doctor that would be comfortable seeing him. The very nice receptionist checked for me but advised me to take him to the ER because of his cardiac history. I had decided to employ "watch and wait" as long as he didn't get worse. He rested throughout the day on Sunday and he seemed okay so we rode it out. The next morning he was feeling bad, though he would never admit it, so I called in to work so that I could be with him and take him to the pediatrician. I must say that I work with an AMAZING group of people who would drop anything, anytime of day, to help me out. 


We were seen by the pediatrician, not his regular one, but one who knows him well. She too felt this was his asthma and started the standard, dreaded 60 mg of prednisone a day for 5 days. This high dose is usually the only thing that helps, especially since last Fall when we found out the stent placed in July in his pulmonary artery is compressing on his left bronchus. We already had a regular medication follow up for Thursday regarding his anxiety of upcoming surgery with our regular pediatrician, so the doc asked that we come back in for re-evaluation. As the days went by, Jarod continued with his normal course but I did notice he was more short of breath this time, more fatigued and that his oxygen level was normal which is not the norm when it comes to his asthma. His belly continued to get bigger, actually so much bigger that he couldn't wear his regular pants, and had to wear shorts with an elastic waistband.

We followed up on Thursday and saw his regular pediatrician. He is always very up front about his concerns. He listened to Jarod's heart and lungs for an extra long time and also noted that he had a more than 4 pound weight gain just since Monday. He was concerned enough about congestive heart failure that he sent us over for a STAT chest x-ray and labs. He called me later that evening and said that the labs didn't suggest congestive heart failure and to continue the nebs and follow up with cardiology as already scheduled on 5/30.


Friday came along and Jarod seemed a little worse so, just for my peace of mind, I called cardiology. As I said earlier, it has been years since I called with concerns about Jarod's heart. In the near 15 years since he was born, this is only the second time I felt the need to call cardiology. The down side is that we are once again starting with a new cardiologist who doesn't know us. I spoke to the nurse and she felt that it was urgent that we come in for a clinic visit, a repeat chest x-ray and echo so we went to UVA that afternoon. We saw the on-call cardiologist who was concerned about his increase in weight and the swelling in the abdomen. He started Jarod on Lasix 20 mg twice daily in hopes of getting some of the fluid off and asked me to follow up by phone on Monday. 

When Monday came around, there was little improvement and Jarod was even having to sleep sitting upright over the weekend. I relayed this info to the cardiologist and he had us double the Lasix to 40 mg twice daily and to follow up by phone Wednesday because, if this did not work, the plan would be to admit Jarod for IV Lasix. During this time I have kept a close eye on his weight and his breathing. Watching closely, when I checked on him Tuesday night, I noticed that he was sweating profusely. I am talking clothes and bedding soaked with the AC on sweating which shouldn't come from the Lasix. By Wednesday morning, I was relieved that the swelling in his belly had gone down, not completely but noticeably less, and he was losing weight. 


Deep down, I worry that this might be Jarod's liver, this is what my gut instinct is telling me. Because Jarod has a Fontan circulation, there is always the potential for liver problems as well as lung and GI problems. We had seen the cardiologist at CHOP who feels that he already has fibrosis of the liver so this is always in the back of my mind. There have been many days these past two weeks where I am actually afraid to wake up in the morning to check on Jarod, fearing the worst! 

On Wednesday morning, I had to call the cardiology nurse to report how Jarod was doing. I did mention to her about the sweating and it was brushed off, she said "it was hot last night" even though I told her the AC was on and no one else was uncomfortable. When I mentioned my concern about his liver, and requested she ask the doctor about liver imaging, she advised me that imaging is not necessary and that the concern they have with post-Fontan kids is heart failure or protein losing enteropathy (PLE) and that I need to keep the 5/30 appointment because they want to monitor him closely since surgery is getting close. By this time, I am feeling overwhelmed and defeated. I am talking to a cardiac nurse who may be a great cardiac nurse, but who has absolutely no idea who I am or who my child is because we are starting with yet another new cardiologist. 


On Wednesday night, Jarod had another night of sweating profusely. By this time, I am really concerned and trying to figure out what is going on. I look up the medications he has been prescribed recently and there is a "moderate interaction" for prednisone and Risperdal and then Lasix and Risperdal so why didn't the pharmacy point this out??...not really sure but I did my own research and read some scary stuff so on Thursday, I had decided I had to have some peace of mind so I called Jarod's pediatrician to discuss the sweating and the cardiology visit. He was very patient and as always, wanting to help in any way he could. We talked things out and he really wasn't sure what to make of it but certainly didn't want to cause any worsening heart failure. Yes, I hear from the pediatrician that they feel it is heart failure, not cardiology. Not really knowing what to make of this, he did admit that it was a "shot in the dark" but that maybe Jarod's thyroid stimulating hormone (TSH) was high so he had me hold his Synthroid that evening. Low and behold, there wasn't any sweating! He asked me to call and let him know since he was just grasping at straws so when I called on Friday to report this, once again he wanted STAT labs. Fortunately, I was able to reach JW and he picked Jarod up from school to take him to the lab. The pediatrician called later on to let me know that yes, his TSH was a lot higher so he decreased the Synthroid dose but also that his liver profile was higher than it was just a week ago bringing me back to the instinct that this is his liver. 

As the days go by, my gut tells me something is very wrong. Because he is in no distress, I will wait until that 5/30 appointment with cardiology, the new transplant cardiologist that we were specifically assigned to when Jarod's last cardiologist left.  I will have many questions for him and I am going to insist on a liver ultrasound. Jarod is scheduled for a very risky aortic valve/root replacement on 6/27 at CHOP and I don't want them to miss anything.  One question I will absolutely be asking is, "if this was your child, what would you want?".

Thanks for taking the time to read and I will update when I know more.  

Keeping The Emotions In Check

Where oh where do I start? This waiting game is proving to be a very tough time for us. Jarod continues to act out and have an attitude towards many things these days, especially when it comes to school. Teachers are calling and e-mailing about his behavior and downright defiance when it comes to day to day school activities which we are seeing as well with home activities. While some teachers have been very patient and phenomenal with Jarod, some get mad and just don't get the impact and fear of what an upcoming open heart surgery entails for a 14 year old with cerebral palsy. I can tell you if it were me, I would be a little on edge too!

We have always been as honest as we can with Jarod in terms that he understands but this time is all new territory for us. Although Jarod has been in the hospital at least yearly, every single year of his life but one, this upcoming surgery is big. His last open heart surgery was nearly 13 years ago at the age of 2 years old and he just doesn't remember it. While some parents choose a different approach, this is the course we have chose and one I prefer for our family. I want Jarod to be able to advocate for himself and understand as much as possible when it comes to his heart and his overall health and to understand that all of this is done to help him feel better. 

Now that we actually have a date for surgery, things have escalated to say the least. Back in March, I asked if we could try some medication to see if this might help his anxiety. As much as I didn't want to add yet another med, I felt this was important for Jarod's well being. He was started on a low dose of Zoloft by one of the pediatricians familiar with him, also at the recommendation of the developmental pediatrician at Kluge. We had to follow up a month later to see how he was doing. We followed up a month later and when telling the pediatrician the Zoloft wasn't really helping much, he did say that normally he would not treat for something like this but he sees just how much the fear and anxiety is impacting his life so he agreed to continue and he increased the dose. That first night was like a light had been switched on in Jarod and not in a good way either. Behavior was getting much worse and Jarod was doing things at school that were so out of character for him. While I won't go into detail about his actions, he actually got in enough trouble to get suspended on a Friday. At this point, I called the pediatrician's office and the nurse took down my concerns but the doctor would not be in until Monday. The following Monday, the doctor called and I explained what was going on and asked for a week or two off from school to see if this would help. I must say, we have some of the best pediatricians around who are so supportive and know that we as parents actually know what is best for our kids. He explained that sometimes kids can have a "paradoxical effect" to the Zoloft and we should stop it right away. We immediately stopped the Zoloft and had an appointment the following morning to get in with his counselor.

Jarod went to see his counselor but had not seen her in awhile.  She had been helping him work through some bullying issues that were happening at school and has not needed to talk until now. As soon as she saw him, she knew this was not the same Jarod and, along with the pediatricians recommendation, we were scheduled with a psychiatrist that Thursday in hopes of some help and answers.

Thursday arrived and we saw the psychiatrist. He spent a good amount of time getting to know Jarod and explained that sometimes Zoloft and other similar SSRI's will uncover an "underlying mania" so now the work up begins to see if Jarod is bipolar. At this point, my heart is broken, broken because I just want Jarod to catch a break.  I mean really, how many more diagnoses and specialists do we need to add to the list??? While I know this is no one's fault, the guilt I feel for requesting the Zoloft is literally eating away at me night and day. On the other hand, I feel fortunate to have found out this information now when Jarod weighs only 75 pounds and not later when he is at 200 pounds and could physically hurt me or anyone else. As mentioned before, behavior was out of control and he was doing things he never would have done like picking up knives, grabbing medication bottles, etc. so this was some scary stuff.

As of now, the plan is to get Jarod's mood stabilized so Risperdal was added and then increased at the second visit. The psychiatrist will monitor him closely and the hope is to get his mood stabilized and then add medication for his ADHD.   He has had the diagnosis of ADHD since 2009 but after trying two medications that both caused chest pain and palpitations, we chose to put this on the back burner. Now that he is older, it is time to re-address this and the psychiatrist will try Jarod on Strattera, which is a non-stimulant, in the next few visits. One thing the psychiatrist was really interested in was when exactly the anxiety started. We really noticed a difference after our visit to CHOP in November. Jarod is old enough to be a part of the discussions with all of his doctors and asks his own questions. It was after that visit, we started to notice more anxiety. Later, after talking with Jarod about his fears and concerns, we found out that he was interpreting CHOP as "hi ya", like a karate chop. One of the first concerns from the psychiatrist was using the word "CHOP" with kids. While Jarod is old enough to understand a lot, he did not understand that CHOP was just an abbreviation so we are very careful of this now and if we say CHOP, we remind him just what it stands for.

As I write this, Jarod does seem to be getting back to himself.  He doesn't look and seem as "lost" as he was though he is extremely tired and will fall asleep at the  drop of a hat.  A lot of this is his heart but add to that his medication and this just makes him exhausted.  I hope as the days and weeks go by, we will have our sweet Jarod back to his normal self once again.

Weekly Medication Reminder

It's Sunday evening, and Jarod reminds me "it's time to get my medicine ready".  To me, this is bittersweet.  A boy his age should not have this on his mind but yet every Sunday evening, this is what he thinks about.  I am so proud that he has taken a proactive part in his health and well being.  Since birth, Jarod has been on medications for his heart.  In the beginning, it was very easy to just slip them through his feeding tube.  After the feeding tube, we resorted to crushing them in applesauce or pudding which worked well for years.  Despite Jarod's cerebral palsy, he is one smart cookie.  There was one particular hospital admission when the nurse was going over all of his medications with me.  Out of nowhere, Jarod blurts out "I don't take any medicines!".  It was then that I got the look, the look from the nurse no mom wants, that look where you want to turn around to see who she is actually looking at but you realize she is looking at you, waiting on an explanation.

From that moment on, Jarod has learned what each pill is for, what it looks like, why he takes it and when he takes it.  This list now includes meds for his heart, asthma, thyroid and anxiety plus inhalers so this is quite the feat for him but he knows his stuff! There have even been times in the hospital where he has asked me if it was okay to take because it looked different.  This is another important lesson that we learned early on.  During one admission, he was only 6 months old, and I did not recognize the pill.  I was told it was a different brand of aspirin but I made her check.  It turns out, it was a 325 mg aspirin and Jarod was to only get 1/4 of a baby aspirin.  It NEVER hurts to check because while our nurses are great, they are human too.  Learn as much as you can and never be afraid to question anyone who is taking care of your child.

Just for reference, Jarod takes: lisinopril 10 mg, 81 mg aspirin, levothyroxine 112 mcg, Singulair 10 mg, sertraline 25 mg, multivitamin, Flovent inhaler daily and uses his Proventil inhaler and DuoNeb nebulizer treatments as needed.  Because of his thyroid, he is due to have blood drawn too.

Our Personal Introduction To Hypoplastic Left Heart Syndrome

When we first found out we were going to have a second child, we were thrilled. Our oldest son, JW, was 3 years old and we just knew the timing was right. It wasn't long though before our lives would be changed forever. At a routine ultrasound, my OB was spending a really long time on a particular area and then went out to get another doctor to get his opinion.  They took a look together and their silence spoke volumes. I of course was a nervous wreck while my OB tried to assure me that it was just precaution to be referred to UVA for a fetal echo. It was on that spring day in March of 1998 that has lead us down the path we have been living for the past 15 years. The pediatric cardiologist confirmed the hunch my OB had which was yes, our unborn son had Hypoplastic Left Heart Syndrome (HLHS), a complex congenital heart defect (CHD), fatal if left untreated.


At this time we met with a surgeon, met with a second OB who offered to terminate the pregnancy even though we were at 22 weeks (never an option for "us") and we talked more with the pediatric cardiologist. We were given the options of 1) Transplant but newborn hearts are hard to come by; 2) The Norwood Procedure, the first part of the 3 stage surgical repair; or 3) comfort care which is to take him home to pass away at home. We took in as much information on the defect as we could and went home to research more on the internet. I don't think I stopped crying for a week but vividly remember JW holding my hand and telling me "don't worry mommy, the doctor's will fix his heart".

As the months went by, and after much research and a second opinion at MCV, we decided that MCV would be the best place for Jarod to have his surgery. We had close, weekly follow up visits with my local OB until Memorial Day weekend of 1998 when we made the drive to Richmond to be admitted for induction. It was a long labor and finally, at 3:30 in the morning on 6/2/98, Jarod arrived into the world very quiet.  He was whisked away just as fast as he came into the world.  We barely got a glimpse of him before he was taken to the NICU, it all happened so fast that they didn't even take time to get an arm band on him.

As the hours went by, we had a lot of doctors and nurses in and out of the room with updates, concerns and even thinking that surgery couldn't be performed because he only weighed 5 pounds, 4 ounces. After the surgeon evaluated Jarod, he felt he could proceed and surgery was scheduled for 2 days later. Jarod sailed through the surgery and was home in less than 2 weeks but did have to come home with a feeding tube which lasted about 3 months.

We settled into our routine, and were now used to the multiple doctor appointments and the dreaded feeding tube and all the stares and whispers that come with that.  It was not long before we learned that the surgeon was moving to Texas and we knew the second stage of the procedure was done around 6 months old. Near that time, Jarod started having more symptoms and was working really hard to breathe. Not sure what to do, our cardiology team at MCV had trained with Dr. Norwood when he was at CHOP so they called him for a consult and on 12/27/98 we were at A.I DuPont Hospital for Children for Dr. Norwood to perform the hemi-Fontan. Jarod sailed through that surgery and was home in 5 days! Unfortunately, soon after getting home, Jarod came down with a respiratory infection which landed him in our local hospital for a week, testing positive for RSV, which lead to his asthma.

Once again, we settle back into a routine but in this time we notice that Jarod isn't hitting those milestones that he should be so our pediatrician ordered a brain MRI which showed that he had cerebral palsy.  With this, I was absolutely crushed.  To me, this was more devastating than the heart defect because at least they were working to "fix" the heart but the CP was something that would never get better. Once again we were faced with another obstacle and more specialist appointments and just didn't know what the future was going to hold for Jarod. There were some doctors that said he would never walk or talk but sometimes the doctors just need to step back and realize that they are talking to a parent who will go to the end of the earth and back for their child. We ended up going to Kluge Rehab Center for Jarod to be fitted for a wheelchair and as I watched him, it broke my heart. I just couldn't commit to a wheelchair because I felt that if I put him in the wheelchair, that would be where he stayed. It wasn't long before he pushed his walker aside and started walking. Though his speech still needs a lot of work, he is talking and goes to regular school.

Ahhh, things are starting to seem really normal with the doctor appointments becoming fewer and fewer and all continues to go well. We had a year without any procedures but at a routine follow up and meeting with the new surgeon at MCV, he told me that "I think I can fix this if we wait a year". My medical and mom radar was going wild and I insisted the results be sent back to Dr. Norwood so he could complete the repair which we did in 6/00. Once again, Jarod sailed through the surgery but he ended up developing an infection in his incision that went into his bloodstream, landing us almost 6 weeks in the hospital for IV antibiotics.  I think this was the hardest part, having to be so far from home, missing JW's kindergarten orientation, his first lost tooth and so much more.

Now, that the repair has been completed, we sit back and look on in amazement at how Jarod continues to inspire so many people. He has this severe heart defect that required 3 major surgeries before 2 years old, asthma, cerebral palsy, probable Celiac disease, thyroid problems and ADHD but he always wakes up every morning with a big smile and a go get em attitude! I only wish I had half his courage and bravery.

Although Jarod's repair is complete, during a cath last summer, it was found that he has a rare complication of both a severe leaking and enlarged aortic valve which now needs to be replaced. Jarod is scheduled for an aortic valve/root replacement on 6/20/13 at Children's Hospital of Philadelphia by Dr. Spray. At that time, it will be decided if they will remove the stent that was placed in his left pulmonary artery but now compressing on his left bronchus.  We will be using this blog to update how Jarod is doing during and after surgery in Philadelphia.

Thanks for taking the time to learn about Jarod's Heart. Please feel free to e-mail me with any questions you may have at heartkdzrck@comcast.net.  

The photo below is a "normal" EKG for Jarod :)