Updates on Ryan's Progress

Ryan's is 16!!! Wow, where has the time gone? Below are the updates including doctor visits, procedures done as well as upcoming challenges that are ahead for Ryan and the people that love him. When times get tough, we try to remember what a true miracle he is and that everything happens for a reason... Ryan is a special soul. He never complains or questions his medical issues. He understands that his heart needs continued maintenance to keep it working properly. Ryan is an inspiration to us all.

June 2016 Ryan Had an amazing 1st year running Cross Country and Track. He earned his Varsity letter in both sports and was awarded "Freshman MVP" for XC and the "Distance Coaches Award" for Track.

In late June Ryan went in for his physical and was then referred to Dr. McCantra, an Electrophysiologist, to check on his Sinus Node Dysfunction. He had an Echocardiogram and EKG and Dr. McCantra said Ryan's heart was in the best shape he had ever seen it in! The year of running was good for him! He was 100% cleared to run Cross Country and Track again for his Sophomore year at Pacifica with no limitations! We will go back in January to check his stents. Because of his growth spurts there is a possibility he will need another cardiac cath to blow them up, or surgery to replace them. So far the stents are holding up just fine for his size. Ryan is 5'2" and weighs 87 pounds. He is enjoying life and excited for the upcoming XC season!

May 2015 What started out as routine physicals to get Ryan cleared to run Cross Country for Pacifica this summer, turned into cardiology appointments, CHOC appointments and many tests. We found out that Ryan has Sinus Node Dysfunction. Ryanís heart rate is in the 50s normally. This is very low. Itís always been a concern. For the last several years heís had a junctional rhythm issue. There has always been the possibility that he will need a pacemaker because of these issues. It appeared that Ryan was only utilizing 60% of his heart during exercise. The goal is that he uses 85% during exercise, or he isnít cleared for running competitively. His cardiologist, Dr. Linda Muhonen put him through 2 echocardiograms, and EKG and the final was the stress echocardiogram. The results ultimately showed that Ryan peaked at 77% capacity, which is much better than the 60% we thought at first. After extensive testing, Ryan was finally cleared to run Cross Country and Track at Pacifica for his Freshman year! He is not allowed to bench presses and we need to keep an eye on his energy level while he's funning. He's excited to be able to run with Jake!

January 2015 Ryan is still doing well. He is enjoying 8th grade with no issues regarding his heart. :) He is still playing Friday Night Lights Football in the Spring.

August 2014 Ryan weighs 75 pounds and is almost 4'10" tall. He is physically doing well and no longer needs to be seen by his cardiologist for 2 years! From 6 month visits, to 1 year and now 2 years! That's progress! Ryan is still on the honor roll, and got his 6 minute mile shirt at Bell Jr. High. He loves to run! He is still playing Friday Night Lights Football in the Spring and Fall.

August 2013 Ryan weighs 68 pounds and is 56 inches tall. He just finished his amazing 6th grade of school, enjoying the perks of being a 6th grader. He loved Science Camp! He started playing Friday Night Lights Flag Football in the spring and he is really enjoying it. He will be starting Jr. High in September. He had his annual check up and is doing just fine.

August 2012 Ryan is doing well. He is 59 lbs and almost 55 inches tall. He continues to have no heart issues. He is an honor roll student and an all around great kid with a positive, happy attitude.

August 30, 2011 Ryan was examined by Dr. Mike (Rebolledo) (seen yearly now) and had his yearly echo and had to wear a Holter Monitor for 24 hours. The results showed that he need to have another right and left heart catheterization stent angioplasty on his pulmonary arteries. The right PA stent was expanded to the highest pressure for Ryan's size again. Although he is older now (11 years old) and laying still after the procedure was very tough for him, everything went well and for the first time, he was outpatient and got to go home a few hours later. When he finally stood up he almost fell over because he said his legs felt like Jell-O. lol

August 2009 Ryan is 48 1/2 inches tall, weighs 45 pounds and is doing well physically. He played baseball this past season and really enjoyed it. He wore a chest protector just to be safe. We recently got the Standardized Testing & Reporting (STAR) test results back from the end of his 2nd grade year. Ryan only got 2 questions wrong on the entire 2 week long, timed test. Almost a perfect score! We are so proud of him!!!


2008

August 2008 Ryan had an echo and a Holter Monitor 24 hour test in August of 2008. The results came back that everything with Ryan's heart is the same. He doesn't need a pacemaker at this time (which is always our hope). He is examined every 6 months. (Still keeping an eye on Ryan's arteries and low heart rate.)

June 2008 Ryan was examined by Dr. Mike (Rebolledo) and he is doing very well. He weighs 40 pounds and is 47 1/4 inches tall. We are going to schedule an echo and another Holter Monitor for 24 hours as soon as school is out. (Just keeping an eye on Ryan's arteries and low heart rate.)

May, 2008 Ryan's eczema has really been getting bad... We visited Dr. Melissa (Rosin)and he was given a steroid cream. After months of bad outbreaks in his skin, finally it looks normal again! Yeah!

January - April, 2008 Ryan was tested for GATE (Gifted and Talented Education) and scored 97% higher than all kids tested. He is excelling in school. He is friends with everyone and always giving more than he takes.


2007

September - December, 2007 Ryan started 1st Grade in September! Once again he was honored as "Student of the Month" but this time for September. He was on the honor roll for all three trimesters of school. He was awarded the "Principal's Achedemic Excellence Award" as well. He is an excellent reader now. He is very smart, friendly and happy. Everyone that knows Ryan considers him a friend.


2006

September-December, 2006 Ryan has now lost 2 teeth and has another loose. He is in Kindergarten this year and was honored as "Student of the Month" for November. He was on the honor roll for all three trimesters of school. He was awarded the "Principal's Achedemic Excellence Award" as well. He is learning to read and is thrilled to go to school everyday.

August 16, 2006 Ryan got his first loose tooth! He is very excited about it too!!! He will also be starting Kindergarten on September 7th... :)

June & July, 2006 Ryan saw Dr. Rebolledo for a routing check-up in June. His low heart rate is still an issue of course. So he had an EKG in the office and from those results we set a later date for Ryan to wear a 24 Holter Monitor again and then have an echocardiogram.


2005

October 4, 2005 Ryan had yet another heart cath and angioplasty. The angioplasty went well and the pressure in his arteries is now more regulated. His left pulmonary artery is much smaller than normal and the right is much larger than normal due to the fact that the right is overcompensating for the pressure being uneven. The arteries were not formed correctly from birth, so this isn't news to us... it just makes his heart work harder than it should have to.

He also had his left and right pulmonary artery stents re-dilated. They run a balloon through the catheter starting at his groin and going into his pulmonary arteries. Once the balloon is inside of the stent (which is like an expandable mesh tube ) the balloon is inflated to a certain pressure, which causes the stent to open up and stay open. Ryan's left PA stent burst the balloon 2 times before the stent was able to be expanded. There appears to be something sharp inside the left PA causing the balloon to burst. It may just be a calcium deposit or scar tissue which isn't a problem AT THIS POINT. BUT there is no change in that stent's size. The right PA stent was expanded to the highest pressure for Ryan's size. That stent should not need to be re-dilated until Ryan is close to 10 years old. That's awesome news!

Ryan spent the night in the Pediatric ICU (PICU) just for observation. He asked his daddy to stay with him. He was feeling sad and missed his brothers. He just wanted them to take his IV out and the lead wires off of him. He had a leg brace on keeping his right leg from bending (they did the cath through that side) and he hated the brace. During evening rounds we saw many of Ryan's old doctors, nurses and a respatory therapist Ryan had long ago... everyone was shocked at how big "Baby Ryan" is now... it was neat to see so many old faces...

August 2, 2005 Ryan saw Dr. Mike Rebolledo and another cardiologist for his 6 month check up. He weighed in at 31 pounds and was 39 inches tall. His heart rate was still very low. His heart also has a junctional rhythm... meaning his heart's natural pacemaker malfunctions making his heart rate very irregular and skipping almost every 3rd beat. Another cardiac cath is scheduled for Tuesday, October 4th. He appears to have a leaky aortic valve as well, which we have always known is a complication of the Arterial Switch Operation (ASO) he had when he was born.

February 16 & 17, 2005 Ryan saw Dr. Mike Rebolledo (Cardiologist) for a routine check up. Once again Ryan's heart rate was alarmingly low. An EKG was performed in the office indicating the need for Ryan to wear a Holter Monitor for 24 hours (again). The Holter measured Ryan's resting heart rate which was the main concern. The following day Ryan also had an Echo done for further testing of his low heart rate. After all of the tests results were reviewed Dr. Rebolledo and Dr. Berjdis collectively decided that Ryan will need another cardiac catheterization, but we could probably wait another year. We were told to keep the possiblity of Ryan needing a pacemaker in the future in the back of our minds as well. Ryan seems happy, active and perfectly healthy weighing just over 32 pounds.


2004

June 8, 2004 Ryan was admitted back into CHOC again for a couple of days for another cardiac catheterization, angioplasty and stent placed in his LEFT pulmonary artery this time. His right PA stent that was placed last year looked great and didn't need to be re-dilated. It seems to be quite a struggle for Ryan to be healthy on the exact day a procedure is to take place... he often has coughs or eczema flair ups. Because of this, we had to cancel this procedure twice earlier in the year. The procedure went very well and was a success, although Ryan struggled quite a bit with the pain of getting the IV, recovery and just wanting to go home. At his age, he is very aware of what is going on around him, making it understandably scary for him. Dr. Berdjis and Dr. Rebolledo don't anticipate Ryan needing either of the stents dilated until he is around 6 or 7 years old. Ryan was very happy to hear that. (Ryan's weight was 28.6 pounds he was 37 inches tall.)

Late 2003 - June 2004 Ryan has been diagnosed with Eczema... (Skin that becomes scratchy, itchy, red, and dry -- even cracked, blistery, leathery). Similar to last year when Ryan had his RIGHT PA stented, he now needs to have his LEFT pulmonary artery stented due to his low heart rate and pulmonary stenosis. Ryan's chronic eczema has proved to be a challenge in itself. His skin needs to be clear of scratches and open wounds for the procedure to be possible. Staph infection is a constant fear he is facing regarding the eczema. We have recently been seeing a CHOC specialist referred to us by Dr. Berdjis and Ryan's skin is almost eczema free now. (more information on ECZEMA)


2003

April 23rd, 2003 Ryan was admitted back into CHOC for a couple of days where he had a cardiac catheterization, angioplasty and a stent placed in his right pulmonary artery. He continues to have a low heart rate and pulmonary stenosis (narrowing of the pulmonary arteries).


2002

August 1st - 28th, 2002 Ryan turned 2 years old On August 23rd. At his August 1st doctor's appointment he weighed 24 pounds. He had been showing signs of being more tired than usual in July, so we had a checkup with Dr. Rebolledo and an EKG and an Echocardiogram done at CHOC shortstay on August 1st. August 2nd Ryan was asked to go back to CHOC to have a Holter Monitor placed on him for 24 hours. The Holter Monitor was needed because Ryan's heart rate seemed lower than it should be. On August 28th we met with Dr. Perry, a specialist, regarding the results of the Holter Monitor. Dr. Perry told us that Ryan did not need a pacemaker and that we should just keep an eye on his heart rate. That was wonderful news since we anticipated the pacemaker being needed. Ryan's ECHO and EKG also showed that his pulmonary stenosis in his pulmonary artery was back. Not severe enough to need treatment right away though. There is speculation on whether the low heart rate is caused by the pulmonary stenosis, or if the pulmonary stenosis is causing the lower heart rate.


2001

October 23, 2001 Ryan was admitted to St. Joseph's hospital for his second open heart surgery to repair his pulmonary stenosis weighing 19 pounds. The surgery was expected to take up to six hours. They suspected 3 hours just to get Ryan hooked up to the heart/lung bypass machine and 2 hours for the repair and 1 hour to close up. We were elated when we were told just 1 and 1/2 hours into the surgery that Ryan was already on bypass and just 20 minutes later that the repair was made!!! His surgery was less than 3 hours and very successful! Dr. Gates and Dr. Rebolledo called it a "surgical slam dunk". Dr. Gates used donated pericardium tissue to lengthen the pulmonary artery and also to make a patch (big enough to grow in to) strengthening the artery. Ryan spent 3 nights in CHOC's PICU Cardiac Unit and was released on the 4th day weighing 20 pounds. His recovery was miraculously fast. He recovered nicely at home and is doing very well. He was put back on Lasix (.4 mm 3 times a day) for six weeks and Tylenol for pain. He is truly inspirational.

October 11, 2001 Ryan was scheduled for a pre-op cardiac cath to coil the collateral vessels that were present since before his first surgery. The cath and coiling went very well. It took a total of three coils to close off the large collateral vessel that was leaking oxygen. Ryan went home just 10 hours later.

Friday, September 28th, 2001 the results of the echo showed that Ryan's pulmonary artery had grown in the last 6 months from 3mm to 5mm. Placing a large enough stent THROUGH the cardiac cath could be a problem. Although the artery had grown in width, it had not grown much in length do to the fact that it was lengthened in the first surgery without real pericardium tissue. The Stenosis was too close to the pulmonary valve to attempt the stent placement without possibly causing damage to the pulmonary valve. After Dr. Rebolledo met with Dr. Gates (heart surgeon) and the rest of his cardiology staff they decided that open heart surgery to lengthen and strengthen the pulmonary artery would be Ryan's best chance.

September 26, 2001 Ryan saw Dr. Rebolledo (cardiologist) and was 19 pounds, 29 1/2 inches tall. He also had an echocardiogram done, to check to see if a cardiac cathetorization and a stent placement in his pulmonary artery was necessary asap due to his Pulmonary Stenosis or if it could wait another 6 months.

August 24, 2001 Ryan had his 1 year check up with Dr. Kritz (ped.) weighing in at 19 pounds and 29 inches tall. He received his normal 1 year vaccinations. Dr. Kritz told us that he was doing very well.

June 27, 2001Ryan saw Dr. Rebolledo, his cardiologist, and Dr. Kritz, his Pediatrician, on Wednesday, June 27th. He weighed in at 17 1/2 pounds and was 27 3/4 inches tall. Ryan had an EKG done and we were told that he is thriving and doing very well. We were hoping to maybe have Ryan tken off his last heart medication, but instead, Dr. Rebolledo upped the dosage of Lasix to .7, due to Ryan's weight gain. We were scheduled for another check up in late September and at that time would discuss the cardiac cathetorization, angioplasty and stent placement.

Ryan spent the night in CHOC's PICU with his mommy in a chair next to his crib. Dr. Rebolledo told us that other than the narrowing pulmenary artery, Ryan's heart looked perfect! He weighed 15 1/2 pounds and was just over 26 inches long. He was taken off of the Aldactone and was taking Lasix 1 time a day and Reglan 4 times a day. Two weeks later Ryan was also off of the Reglan. Ryan was finally ONLY taking Lasix once a day...

Early on the morning of March 9th, my mom passed away. Ryan was still in the hospital, but I felt a sense of peace at the thought that now Ryan had my mom as his own guardian angel to watch over and take care of him . . . ~ ~ ~

Ryan went back into St. Joseph's Hospital to try to repair the Pulmonary Stenosis by having a Cardiac Cathetorization and angioplasty performed by Dr. Rebolledo and Dr. Berjis. The plan was to enter the femal artery and place a balloon into the narrowing Pulmenary Artery to help stretch it back out. Although the balloon did stretch the artery, it wasn't able to stretch it enough. Ryan will possibly have to go back in for another Cathetorization at 1 year old and probably have a stent placed into his pulmenary artery to help hold it open.

March 8th, 2001 Ryan was diagnosed with Pulmonary Stenosis, which we knew was a possible complication of the Arterial Switch Operation (ASO)... (click links for more on Arterial Switch Operation and PS.)


2000

November 22nd, 2000 we took Ryan back to Dr. Rebolledo, Cardiologist and Dr. Idries, Gastroenterology & Nutritian. Dr. Idries took his PEG tube out. She also took him off of Zantac but kept him on Reglan, Lasix and Aldactone. Dr. Rebolledo gave us some great news... Because Ryan had done so well with his feedings and was about 10 pounds now, he could start feeding on demand instead of every 3 hours. He can also have as much as he'll drink, instead of limiting his intake. That was good news to hear since Ryan seems to be extra hungry these all of the time! On November 22nd, Ryan weighed in at just under 10 pounds and 23 inches long. We are so proud of his progress!

November 16th, 2000 Ryan went to see Dr. Kritz, Pediatrician. He weighed 10 pounds and was 23 inches long. He was given his first immunizations including Polio, DTP, HIB and Hepatitis B. Dr. Kritz said Ryan was doing very well. He seemed to be right on target for babies his age physically and mentally.

November 14th, 2000 we took Ryan back to see Karin Mitchell, Speech Language Pathologist. She released him from her care and said he was eating fine on his own now. =)

October 25th, 2000 we saw Dr. Rebolledo, Cardiologist. He upped Ryan's cc level to 70 from 55. We also saw Dr. Idries, Gastroenterology & Nutritian regarding the PEG tube. Together they decided that Ryan needed 30 calerie formula, rather than just the normal 20 calerie. We began mixing 10 caleries of Good Start with the 20 caleries of Similac. Dr. Idries also told us if Ryan didn't need to eat through the tube for 6 weeks it could come out! Yeah! Things were looking up, by the end of October Ryan was over 8 pounds

Ryan went home on October 11th, 2000 (almost 8 weeks after he was born on Aug. 23rd) with a Peg Tube in his stomach because he still wasn't eating enough from the bottle. Along with the PEG he was also taking several medications which included Methadone (to be slowly weaned off of), Reglan, Zantac, Iron, Lasix, Aldactone, Antibiotics and Tylenol several times a day. We were faced with new challenges, taking care of a heart baby as well as learning to give medications through a PEG tube...

Once Ryan got home, he refused to eat or be fed through the Peg-tube for the first week. It was a scary time, watching his progress regress... we talked to several doctors and, of course, Karin Mitchell regarding his feeding issues. Not only was he not eating, but he was crying constantly. We were told he had colic on top of everything else... but we couldn't help but think, "at least it's a NORMAL baby problem for a change!" We tried switching from breast milk to Similac formula to see if it made a difference on October 17th. Ryan's "colic" crying stopped with the formula switch. OVERNIGHT he started feeding again, but this time better than ever. A week later he was taking almost every feed from the bottle and not just the 55 required.






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