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Bobby’s Story

Lil Bobby was born on April 18th, 2009 weighing in at 5 pounds 4 ounces.  He was born with a heart defect known as Pulmonary Atresia with Ventricular Septal Defect (VSD).  In Pulmonary Atresia there is no pulmonary valve, so blood can not flow from the right ventricle(pumping chamber) through the pulmonary artery to the lungs.  There is a large hole in the wall that separates the two ventricles. (VSD) This allows oxygen-poor blood to flow into the left ventricle and go out the aorta to the body.  The only blood flow to the lungs may come from a patent ductus arteriosus (PDA) a vessel between the pulmonary artery and the aorta or multiple collateral arteries and the aorta or other arteries to the pulmonary artery.  The PDA was the only source of blood flow to the lungs in which Lil Bobby was given prostaglandins a drug to keep the PDA open, with out this drug the PDA would close causing no blood flow to the lungs.  With this being said a baby with this condition needs immediate treatment. Hours after Bobby was born he started to decline without knowing what was the cause the Decorah hospital transferred him to St. Mary's with the neonatal unit coming.  Upon arrival to the neonatal unit on April 19th he received an Echo of his heart and we were told the news of the defect and that he would need to have open heart surgery, letting him get stable enough for surgery would last the next few days, with surgery on April 22nd which they put in a Blalock- Taussig Shunt (BT shunt) and closed off the PDA.  After a week of recovery he was discharged and we have had many check ups and echo's in the last 5 months. 

With this they think that it is time for the next procedure, which will take place at St. Mary's on September 29th, Lil Bobby will be admitted on the 28th.  With the procedure that he is having done they are going to do a complete repair of the VSD and put in a conduit in place of the shunt that connects the pulmonary artery to the lungs this conduit will last 2-3 years.  I will continue to post his progress.  Please pray for Lil Bobby and my family. 

Bobby's 2nd OHS was a success and he recovered well.  We have been monitoring a cyst on his cerebellum since he was 6 days old, neurology referred up to opthomology to check his optic nerve for pressure, while they were went to check the optic nerve they were unable to see back into eyes due to cataracts, Bobby then ended up having surgery to remove these and implant artificial lenses May 2010.  Bobby now has glasses and his eye sight is continuing to get better. Bobby has also underwent a Cath procedure to place a stent in his pulmonary artery conduit.  Bobby also underwent brain surgery in Nov. 2010 to drain the cyst on his cerebellum that was causing pressure on his brain stem and causing projectile vomiting, this surgery was also a success, you can read his journal for more on recoveries of surgeries.  Also in 2010-2011 the opthomoligist noticed a change in his left eye and Bobby underwent a sedated eye exam and it was found that his left retina had became detached so another surgery was planned, fast forward to now Jan. 2012 Bobby has had three surgeries to repair his retina and will have little to no vision in that eye, he does react to light, Bobby has now had 9 surgeries all before the age of three.  Now in 2012 Bobby will be facing another eye surgery to remove the oil bubble from his left eye and to check the buckle to make sure it isn't causing any constrictions to the eye.  Bobby will also be having another heart surgery, we find out the surgery date on January 3rd it is suppose to be sometime this coming Spring.  I update CaringBridge often to let everyone know how Bobby is doing on a weekly basis.  Bobby did reach one amazing accomplishment right before Christmas 2011 he starting WALKING on his own!!  Thorough everything that he is been through he always seems to amaze us!!  As of the end of 2012 Bobby has had a total of 12 surgeries these include more eye surgeries, for his left retina, we are now focused of keeping the eye healthy since we now know that he will not have vision in this eye, we will continue to monitor with sedated eye exams.  Bobby had his 4th heart procudere done April 23rd, 2012 this was also his 3rd OHS and was a great sucess with a quick recovery.  Bobby remains on heart failure meds as well as asprin as a blood thinner.  We see his cardiolosgist every 6 months with echo's and chest x-rays.  Bobby's special heart is healthy!

 

 

Latest Journal Update

Busy Bobby

Bobby has been busy and working hard at school.  He is now making more sounds and communicating more in is him own way.  He does enjoy school and daycare although he has a little bit of a hard time seeing me in the hallway. 

He enjoys time with his peers and his daycare teacher is one of his favorite people which makes things work out great.  I can not say enough good things about Bobby's teachers and support staff they are remarkable!

Speech Therapy still isn't his thing, he just isn't interested in doing things that aren't his way, he is starting to learn that this is for his benefit but doesn't like it.  As I said before we will be taking a break from this. 

Bobby works well with his teachers with progress being made so that is always great to hear. 

Bobby has been enjoying going to his sister Madison's Volleyball games after school.  I think he is their biggest fan and enjoys cheering them on!!  All of the girls are great with him and enjoy his enthusiasm for their games!

Bobby has a birthday coming up on April 18th has going to be 5!!! Where has all the time gone!!

We are planning a party at the house with our close friends and family which is always a great time. 

Bobby doesn't have any appointments coming up for a few months, this is completely different to his first few years and we are enjoying just playing at home!!

Lots of Love and Heart Hugs,

Kayla  

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1 Comentario

Leslie Salerno
By Leslie Salerno
Love and heart hugs back to you, Kayla! And to your whole family.