Nap Time

Stockton had a rough day yesterday morning but he had a wonderful night. He slept from 9pm to 4:30am without complaining about his stomach. He was complaining until about 8:30am but then perked back up after Daddy made Mickey Mouse pancakes. His daily nap has been a struggle because his stomach wakes him up. He is currently taking his nap and has been sleeping for 2.5 hours! He so desperately needs this rest.

He is currently on Enalapril, Zantac, Miralax, Fiber, aspirin and Zyrtec. We are hoping this new diet change starts helping soon. He wants a string cheese so bad! Thanks for all your prayers and we hope his pain stops all together very soon.

As of lately

My sweet Baby Stockton has been struggling the past few weeks. It started 4 weeks ago when he was diagnosed with strep throat. He was on antibiotics for 10 days then he felt great. 2 weeks ago he started having abdominal pain. We went back to the doctor to make sure the strep was gone. Luckily, he was negative. His abdominal pain continued where we ended up in the instacare a few days later. We ruled out a UTI and strep again. He started to complain more at night and not sleeping well. He has a history of constipation but since he was potty trained he has been doing great in that department. This whole time he has had no fever, no vomiting, no diarrhea and no signs of a viral illness. When he is not having these episodes of abdominal pain he is so fun. When his ab pain begins he arches his back or curls into a ball. We try to comfort him as much as we can but it is heart wrenching. Last week we ended up back at the doctor and we did a chest x-ray to check the size of his heart and rule out pneumonia. He was negative. We were sent home after another negative UTI and the abdominal pain continued. On Thursday we ended up at Primary Children's because the pain just got too severe. He had an abdominal ultrasound to rule out constipation and appendicitis. We also did some blood work. The blood work came back clean and the ultrasound was normal. We were stumped. My little guy is suffering and it is heart breaking. On Friday he still had the ab pain but he had a break for a couple hours. The only thing that helps is a shower. He holds the faucet on his stomach. He has fallen asleep like this many times. Last night the pain was severe again and he could not sleep. We took him to Primary Children's ER last night and we stayed the night up there. His urine came back normal, again, and they ran some tests. They ruled out kidney stones and a few other things. The ER physician discovered that Stockton may have GERD or an ulcer that he is battling. He had reflux when he was a baby and he was on Prevacid for the first 10 months of his life. The doctor put him on Zantac and wants us to do a 48 hour trial. We have also been dairy free the past two days and we will continue that. This whole time his heart has looked great. We are suppose to return to Primary's on Tuesday if this new regimen doesn't work. Stockton doesn't seem to have relief from this change in diet or new medication. He is still cramping and still in pain. We are asking that all of you pray for him and think positive thoughts. We hope we can find an answer soon. 

Heart Camp

We attended Heart Camp the first weekend in August. It was amazing to meet so many families that have HLHS. It gave me so much hope. It was hard to keep a dry eye. I met some amazing mothers who brought me so much comfort. Being a heart Mom is a tough job. No one knows what I go through on a daily basis but these women do. We all loved the camp and can't wait until next year.

Stockton turns 3!

The summer quickly passed by and our little guy celebrated his 3rd birthday. He is obsessed with dinosaurs. We spent the day at the Dinosaur Museum and then we celebrated Dino-Style. I can't believe how much time has passed since the chaotic day he was born. We literally enjoy each moment we have with him. His vocabulary has just soared and he is getting so smart. He can count on his hands to 5 and knows all of his colors. He had a check up at few weeks ago and he weighs 27 pounds. We love watching him grow and explore the world.

More Opinions

I have been fortunate enough to have a Mom who has taught me to resource. She has taught me to succeed in all things that I do. I truly have been taught to never give up. I have found that one great quality that I have is persistence. This has become very handy with Stockton's condition. I have spent countless hours doing research and speaking with different doctors. When it comes to my children's care I won't accept anything but the best. I take a lot of pride in picking my children's doctors and I always get a second opinion, if not a third. We are fortunate to live near a great children's hospital in Utah. Even though we have lived here over a year I can't call that hospital home. After we were blown away by the postponing of Stockton's next surgery I started to ask more questions and get into contact with more doctors. That is the only way I can be a parent. I am trying to do my best and have everything covered so I can look back with no regrets regarding Stockton's care. 

Dr. Chris Petit was with us at the birth of my son, Stockton. He carried us through the first few weeks of his life. He is amazing. He is very positive and was always willing to answer questions. He performed Stockton's first heart cath procedure and we left the hospital the next day! Dr. Petit left Texas Children's during our interphase stage. (Between the Norwood and Glenn) He leads the cardiologists in Atlanta, Georgia now. After e-mailing him I got a response the same day. You can read the e-mails below.

Dr. Petit,

My son Stockton Watson was born 07/30/11. We met you at Texas Children's Hospital the day he was born. He has HLHS. You performed his first and only heart cath. We saw you through the single ventricle clinic until he had his Glenn. You were of great help to us and we always loved the advice you gave. When you left TCH you gave me your e-mail in case we ever had questions. Stockton is now 2 1/2 and we moved to Salt Lake City last year. He is doing phenomenal and has had no problems. I just wanted to get a second opinion about the timing of his Fontan. We continue care through Dr. Elena Ocampo and travel to Texas for appointments. We see Dr. James Hoffman in Utah if we have any questions or need immediate care. Stockton was scheduled to have his cath this month and his Fontan this August. We recently were contacted and TCH postponed Stockton's Fontan to Fall 2015. Dr. McKenzie is our surgeon and we trust his judgement but we are also concerned. Primary Children's in Utah wants us to have our Fontan soon. They do the Fontan a lot earlier here in Utah. We are not in a hurry nor do I need a response right away. We just want to do the best thing for him. I have attached his last medical visit below and a picture of him, of course.

Thanks,

Brittany Watson, RN

RESPONSE:

Hi Brittany,

So nice to hear from you!  Wow, Stockton is a handsome boy.  That's a beautiful photo of him.

I reviewed all of his information that you sent.  I understand that different centers have different protocols or tendencies when it comes to the various stages of single ventricle surgery.  What was done at TCH is obviously different than in some other centers.

After a lot of reading of studies, and doing some of our own research into this topic, I have come to recommend the following for patients like Stockton:  

1.  So long as his oxygen saturations are reasonable (above 80% most of the time) I prefer to wait until the patient is > 4 years of age.  Definitely have it done before Kindergarten -- kids at that age want to be so active, and becoming cyanotic and short of breath could become socially isolating.  

2.  There seems to be some evidence that earlier Fontans don't do quite as well.  I trained at CHOP, where we were regularly having Fontans done at 18 months of age.  Effusions, length of stay after the operation....those plagued the patients.  Elijah Bolin, a TCH fellow, and I did some research also which showed better results when kids were at least 4 years old at time of Fontan.

3.  If his saturations are low, or he is becoming symptomatic, I wouldn't hesitate to have the Fontan done sooner.  

4.  If I were in your shoes, I would stick with Dr. McKenzie as well.  He's a fantastic, talented surgeon.  Worth traveling for!

I hope that helps.  Thanks again for the email, and for the photo of your handsome boy!

-Chris Petit

Christopher J. Petit MD

Children's Healthcare of Atlanta

Emory University School of Medicine

2835 Brandywine Rd Ste 300

Atlanta GA 30341

I guess I feel great about pushing back Stockton's OHS. We are continually monitoring him and his activity. We feel so blessed to be surrounded by amazing doctors and staff. I feel so much better.

To Fontan or not to Fontan?

Our sweet baby boy goes through so much and we try to do the best that we know how. At our visit in December our cardiologist said we should plan for open heart surgery late summer of 2014. This actually was the whole purpose we decided to have another baby so quickly. We wanted Merrick to be old enough to stay with family and we didn't want to be pregnant this summer. Well, I called Texas Children's Hospital yesterday to schedule Stockton's heart cath this April. We have been anticipating to spend a lot of money on lodging and getting ready for this trip. We were moving to Texas in August for at least a month and we were going to home school our daughter, Tylee, for the first part of the school year. Planning is something heart families thrive on yet something always throws us for a loop. Dr. McKenzie, our surgeon, had his office contact us today and tell us  that they want to put Stockton's surgery on hold. I was thinking maybe a couple months but then they told us they wanted to wait another year! They want to wait until after he turns four and try for September 2015?! I was at a loss for words, which doesn't happen often, then the anxiety sank in. Before I even told my husband I called my go-to heart Mom, Jessica. She was shocked to. When I asked them why they wanted to wait they said that he is doing so well that his heart pressures will be more stable the more weight he gains and the older he gets. I immediately called Dr. Ocampo and asked her why they went this route. I had so many questions for her and because Stockton is healthy they felt like it would benefit him if we waited. Seth and I never felt comfortable about making this huge decision and we are glad the doctors have made this decision for us. We just have to rearrange our lives, again, so we can accommodate our sweet boy. I don't want anyone to think that I am not grateful for Stockton, but when health issues arise out of the blue we become very concerned. I have dreams about Stockton having emergency surgery and we are stuck in Utah and we have to take an angel flight to Texas. Utah has great medicine but nothing compared to Texas. They are an elite facility and they have saved our baby boy's life so many times. So yes, Stockton is healthy and he is trucking along. So what now? Well, we are in the process of getting a second opinion and maybe even a third. We have lifelines through Atlanta Children's and Cincinnati Children's that we are going to explore. We want to see what these facilities have to say about Stockton and get their input. For now we are still in the waiting game. We will just keep on loving him and praying that his heart stays strong.

2013 Update!

Stockton sure has grown since my last post.

Our babies!

The Watson Family 2013

As you can see it has been over a year since my last update. I have to say that so much has happened in these last 18 months. I have noticed lately that we are getting a lot of hits on this blog, almost 3,000, and I am sure it is because other HLHS  parents are looking to connect with other families. I have realized that part of my own therapy and dealing with Stockton's health issues I have to start writing in this blog more. There are too many nights that I fall asleep crying or sleep in his room because I need to hear him breathe. It helps to connect with other parents and read their stories. I have wanted to post for quite some time now but raising three kids isn't easy.

Yes, I said three kids. Stockton became an older brother in March of this year. His little brother is named Merrick. Merrick is heart healthy just like his big sister, Tylee. Stockton is such a wonderful big brother. Stockton is constantly playing with his siblings. Sometimes he can be quite naughty by pulling Tylee's hair, knocking baby M down or taking their toys. Most of the time he is giving kisses, playing trains with the baby or doing anything that involves Mickey Mouse. Another big change since my last post is our big move last year. We no longer live in Houston. We decided to move back to Utah to be closer to our families. We went through so much in Houston and it was so hard to be away from those that care about us the most. Fortunately, my husband is able to run his business from Utah. We are so grateful that things have worked out.

The main reason for this update is to give you a little info about Stockton. We have had visits with cardiology every 6 months. We just had our third check up on December 17th. We also have been seeing cardiologists at Primary Children's Medical Center (PCMC) and continue to follow up with Dr. Ocampo at Texas Children's (TCH). Our visit this week was to TCH. Stockton had an EEG, an ECHO, and a 24 hour Holter. We also had blood pressures and O2 Sats checkes. We usually have an x-ray but we have had those every 6 months in Utah. We met with Dr. Ocampo and we discussed Stocky's future. Usually they plan to do the third open heart surgery when the child is 3 1/2 to 4 years old. Stockton is growing really quickly so it looks like it would be around 3 1/2 years of age. If you click back through this blog then you may remember that Stockton caught RSV when he was suppose to have his Glenn surgery. We postponed the surgery a few weeks so that he could get healthy. Stockton turns 3 1/2 in January of 2015. This is the peak of RSV season and we really don't want to do his surgery during the Winter months. Especially, because Utah winters are the worst and RSV is crazy out here. We spoke with Dr. Ocampo and we suggested maybe doing the Fontan surgery after he turns 3. She was open to the idea and said that there was no reason to wait because Stockton was growing well and quickly that she feels he would be ready at his third birthday. Stockton turns 3 on July 30, 2014 and we are looking at the Fontan surgery in August or September of that year. We are making an appointment with TCH in April and we will have to be admitted to the hospital for him to have his heart cath procedure. From this procedure we will have our case looked over by our cardiology team and Dr. McKenzie (our heart surgeon) will evaluate our plan. Dr. Ocampo is really open to all of our suggestions and she has really guided us through this process. Dr. Ocampo said that Stockton's ECHO and EEG looked great. His tricuspid regurgitation has remained the same and not progressively worse. We talked about what type of Fontan surgery Stockton would have and TCH's method of choice is the extra-cardiac Fontan without fenestration. We discussed our options in great detail and we will know a lot more when we have our cath visit in April. Stockton has been growing really well and weighs 27.5 pounds. I need to find his height chart. His arteries looked good, his heart is pumping well and his oxygen saturation remains the same at about 85%. (We were worried about this when we moved to Utah but the elevation has not phased him one bit.) We are waiting for our Holter monitor results and we will get those in about a week. We are still on the same medication. We take 0.5mg of Enalapril twice a day and 40.5mg of Aspirin once a day. Dr. Ocampo is thrilled with Stockton's progress and so are we.

Now we are letting the anxiety set in. With the Fontan in the near future we are starting to make plans for April, the summer and the school year. We have had this surgery linger over our heads for years. I honestly have prayed so many times that we would have Stockton stay in our lives. I worry about him every day. We are so blessed to have such wonderful family and friends in our lives. Sometimes our lives are so consumed in helping Stockton to be healthy that we forget to take care of ourselves. Stockton has tackled HLHS like a champ. We hug him a little tighter, we kiss him a little more and we definitely talk about him a lot. We appreciate all the prayers and we continue to ask for them. We love our Stocky Boy! ♥ LOVES