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