December 3, 2014: TCH Visit

We flew to Texas late Tuesday night. Stockton and I flew together as Seth flew earlier to get some work done. We started our appointment in the ECHO lab. At the age of 3 the lab no longer requires sedation. I believe we have had sedation twice for his ECHO due to the fact that he wouldn't sit still. All the other times we have been fortunate to avoid it. My little boy is so strong and just laid in the hospital bed like such a big boy. We watched Monster's Inc. and he wanted pictures on his iPad. The ECHO only took about 20 minutes then we headed to the waiting room for our cardiology visit with Dr. Ocampo. Ocampo's office was able to squeeze us in about 45 minutes early. We were thrilled because we have been at TCH sometimes 6 hours just waiting for all of our appointments. Immediately, Stockton had his EKG and we did 4 blood pressures. (Both arms and both legs) Ocampo came in and gave Stockton a hi five. She immediately noticed the coloring in his finger tips. They have always been a purple color but this time she noticed slight clubbing in his hands. I can actually see it in his toes as well. Without getting us too alarmed she stated that his ECHO and EKG looked great. His normal oxygen saturations are 85/86 and he is still retaining that. However, she thinks his body is making too many red blood cells from the lack of oxygen he receives so he will be a candidate for surgery next summer. We scheduled a heart Cath in March 2015. This test will allow them to have a better look at his heart before having open heart surgery. It will test pressures and see how urgent the next surgery might be. We have to schedule a visit with our surgeon, Dr. McKenzie after the cath is done. We will have surgery June, July or August. (Crossing our fingers for a summer date.) All of these dates are only scheduled tentatively.  Stocky was taken off Enalapril and we raised his dose of Aspirin to 81mg. He will only be taking that now! Hurray! After taking medications up to 8 times a day we are only left with taking Aspirin once a day! Stockton had a Holter monitor on when we flew home and we sent that back yesterday. We are nervous but yet anxious to have this next surgery. We go through so many emotions when Stockton is scheduled. I hate seeing him so vulnerable and I wish I could fix it. I don't think I will ever come to terms with his condition. It is a constant inner battle his Dad and I go through. Stockton is such a warrior. I am blessed to have him in my life and so many of yours. Please continue to pray for him and that the doctors have some guidance in the direction they will take. We are grateful  for all of you and the help we receive with our other children. 

We are going home!

Yes, that was a quick surgery and we are happy to get out of here! 

He is out!

The surgery went well and quick. We are thrilled to see him. He is not a happy camper at the moment.

Urology Surgery Update 1

Stockton was just taken back. They pulled him through the doors in a big wagon. He actually was really happy because they let him have an iPad. We hope to have an update soon.

Urology Surgery

We are here at Primary Children's for Stockton's urology surgery. They say the surgery shouldn't last long. They have told us that it is a simple surgery but with Stockton nothing is ever simple. He will be taken back in an hour or so. My heart breaks for him because he is so attached to us. I hate when they wheel him away and he screams. Keep him in your prayers!

Urology Surgery

Recently, we were told that Stockton needed to have a minor urology surgery. This will happen later this month at Primary Children's. I feel that sometimes Stockton can't catch a break. Every time he is wheeled off to surgery or has some type of invasive procedure I look at his sad face. Sometimes he screams and yells, "Mommy, please, Mommy!" Other times he is so relaxed because this is his normal. Those are the moments I dread. Those are the moments that I wish I could take his place. Those are the moments that I fall to my knees and ask, "Why?" This strong boy of mine is such a miracle. If you could hear him talk and run around you could feel the spiritual energy that this boy carries. I hate having him go through this life unhealthy and I hate that the things he goes through have to be done for him to survive. I don't think that this will ever get easier. I don't think that my prayers will ever end without tears streaming down my face. Every night I place my hand on his chest, just before I go to bed, and feel him take a few deep breaths. I walk around to my other children's rooms and do the same thing to them. Somehow each day I grow a little bit stronger and each day my love for my children grows. I wish that no parent had to watch their child suffer and no one had to lose a child. This minor surgery coming up is scary for us because he has to be put under sedation, again. The cardiac team has to be there and they will keep us posted. As this approaches I can't stop thinking about next year when he has his 3rd open heart surgery. I don't want it to come. I don't want him to scream and cry and wonder why his Mommy left him. I don't want him to think that I am abandoning him. The other surgeries he doesn't remember, this one he will. I am scared to death about losing any of my children. Stockton's body may not be too strong but with the Armour of God he will do great things.

Much Better

Last Monday Stockton was not doing well. He slept most of the day and complained about his tummy hurting. I thought we would end up in the ER again. After he woke up he felt much better. He usually has a few hours of relief  during random parts of the day. Tuesday he woke up at 4:30am complaining about his tummy again. He was in pain for a few hours then it went away again. I worked the night shift Tuesday and I broke down to one of my co-workers. We just weren't getting answers and I just couldn't watch him be in pain any longer. That evening I decided to do a 24 hour fast. (No food or drink) I got home later that night and Seth said Stockton stayed asleep. I slept next to Stockton that night and he only woke up to use the bathroom. On Wednesday afternoon he said, "Mom, My tum tum all betta." (My tummy all better) I fasted until later that night praying he would continue to be pain free. I don't want to jinx it but he has not had any abdominal pain since the moment I started fasting. Call it a coincidence, an act of God or whatever you want but he is no longer hurting. He has not complained one time and he tells me everyday that his tum tum feels better. We are still dairy free, however, he had some cheese on Friday night. (We are really trying to be careful.) He has been wonderful and felt good enough to play with friends on Friday and get honored during a high school half time show. We pray daily for this boy and we know a lot of you do too. Thank you! I truly believe in fasting and I hope that this is inspiring. Stockton is such a trooper and I am ever grateful to be his Mommy.

On the mend?

Stockton slept through the night for the first time in weeks! He did wake up to use the bathroom but went right back to sleep. We have been sleeping right by him so that he would feel comforted. We are starting a probiotic today and we hope to continue to be on the mend. We still don't know the true cause of his stomach pain but it could be related to the antibiotics we used for strep. We will continue to be dairy free for the next little while and continue the Zantac. Thanks for your prayers. 

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.