Pediatric Grand Rounds 2:4

This has been a very sobering week. A prolific and very much admired blogger, Flea, was unmasked in a very public way during his malpractice trial. There is a lot of talk going around on the medical and law blogs about this, most people agree that blogging about an ongoing trial is not a great idea no matter how anonymous you think you are. To me the saddest part of the whole thing is that there are two grieving parents who have a dead son and there is a Dr. Rob who could possibly loose his practice because he made a mistake (a definite blogging mistake and a possible medical mistake). It just does not seem fair to me that the lawyers are the only winners in this whole thing, they get to collect their paychecks and go on with life as usual.

The loss of Flea is a huge loss to the medical blogging community. He wrote out many evidence based posts on things that were being widely discussed about children's health. His series of posts on vaccinations are treasures that may never be replaced. His looks at alternative therapies and possible causes for Autism were also reoccurring themes in his blog. I especially loved how tried to empower parents by teaching them to take care of simple illnesses at home, keeping sick kids out of the doctor's office. I will never look at Neosporin the same way again.

Flea, you are gone and very much missed. Dr. Rob, I hope that you and your family are able to recover from this and hope that some day, some how we will be able to hear more from you.

Now on to Pediatric Grand Rounds!

Editor's picks

First off we have a new submitter, Dr Mike who blogs some but also has a great podcast called Pediacast that he produces weekly. He takes a critical look at some of the latest research and also answers listener questions. He gives us some summer water safety tips in Swimming: Fun Exercise or Dangerous Diversion? You decide!

Bryan Vartabedian at Parenting Solved tells of one of the many lengths that parents will go to to help a child with colic sleep,The Colic Kabuki Dance.

Ben Goldacre at Bad Science gives us a chilling tale of how television shows are really not all that into scientific facts and prefer to just scare people with mumbo jumbo. Here is a very simple diagram of the problem at hand.

The best of the rest

Judy tells us about a code she attended. It is sobering example of why drinking and teenagers do not mix, IV Therapy Escapades - Part V.

The Midlife Midwife gives us a story of a pregnant teenager that is not quite ready to fall into the teenage mother stereotype, I'm not stupid.

Is everything the way it appears to be when you are trying to diagnose a patient? Not all the time, as Clark Bartram points out in On Judging Book Covers.....

Flu does not always work alone, sometimes there are other diseases helping to kill patients. This is one reason why getting a flu shot is important. When Children Die From the Flu.

Dr Scott faces difficult choices where the treatment should be simple, Easy or Hard?. You decide.

Bigger is better when it comes to some things like the NICU. Dr. Gwen discuses the new findings, Having a baby? Think big.

Medgaget has an article about a child that went through treatment to help with his sensory processing dysfunction, Hacking My Kid's Brain: A Report at Wired . It truly is amazing how the brain is so very plastic in young children.

Laura discusses some of the down sides to letting older siblings into the NICU, good-bye and hello again. Also included is a little story about why children of people working in the medical field might not want to press for too many details of what that parents is doing while at work.

Autism is a a hot topic in pediatric medicine. It has now escalated to a new level, parents of children with Autism are heading to the courts to attempt to get some compensation for the "vaccine injury" caused by the mercury in vaccines. Orc goes over the details of the case in The mercury militia go to court.

Do'C (Dad of Cameron) dissects an article that was put out by an "Autism expert" written in response to an article in Slate magazine about the trial mentioned above. You Got Nothing

Advocates of chelation therapy are starting to change their tune as more parents become wise to their spurious claims. Prometheus wonders how parents can get the help they need with out being taken advantage of by quacks, The Next Revolution.

The HPV vaccine is another hot topic in the news. Arthur Allen shows how some groups are trying to find harm where there was none, Vaers and Veritas

Sandy Szwarc busts some ancient myths about sugar,Science of sweets . I must admit I had my mind blown when I read this one, it goes to show that the vast majority of the dieting gurus have no idea what the heck they are talking about. She follows up the post with some simple advice let your kid be a kid, Remembering what it’s like to be a child. She also has some great thoughts about the state of oral health. Some people are claiming that parents are rotting kid's teeth out by giving them too many sweet foods, the science says otherwise: It will rot your teeth out!

Shinga (with out whom this PGR would have been impossible) has a link to some animated educational videos about BrainPOP and Educational Films About Asthma, Allergies and the Immune System. She also searches for decent coverage of allergies in the media, R4's Allergic Reactions Was Spotty and Irritating in Parts.

Adding in because I completely forgot to put this one in: Sarah gives an interesting account of her son's surgery to have his squinty eye repaired. Eyes Right

That does it for this edition of PGR. I want to thank all those that submitted articles. PGR 2:5 will be hosted by Mousetrapper at Med Journal Watch. Submit here:

http://medjournalwatch.blogspot.com/2007/06/pediatric-grand-rounds-call-for.html

Clark is looking for hosts for future editions of PGR so come on and step up to the plate. The only way that this can continue to be as great as it has been in the past is if we all help out.

Pediatric Grand Rounds

The latest edition of Pediatric Grand Rounds is up. The next edition will be the first anniversary edition hosted at Unintelligent Design and will be a best of edition so no submissions are being solicited.

What now?

We are now over six months past Evan's last heart surgery. I find myself at loose ends. All of Evan's life there has been a surgery hanging over our heads, looming in the not so distant future. Now? There is nothing planned, nothing to plan for, we just wait. We wait to see if things change if, some how, despite expectations things get bad.

The number of doctor's visits are rapidly decreasing. This was Evan's last winter on Synagis. Next winter we will not have to visit the pediatrician monthly, in fact we may be able to go the entire year between well visits with out seeing him (stranger things have happened). Evan is only seeing his cardiologist as often as he is because he flat out refuses to let me use the equipment to monitor his pacemaker over the phone, so they have to do it in the office.

All of these wonderful things mean that suddenly Evan can start just being a kid now. The intrusions into his life are shrinking leaving only his physical therapy which to him is like having an adult come over to just play with him. I think I am going to have to come up with a new hobby or something.

Pediatric Grand Rounds

Another fine edition of Pediatric Grand Rounds is up at Musings of a Distractible Mind. There is even a post about how to entertain a child post heart surgery. I added my two cents in comments on that one you can be sure after all I have become something of an expert.

The next edition will be hosted by by Flea, who is one of my favorite pediatric medicine bloggers.

Pediatric Grand Rounds

It is time for another edition of Pediatric Grand Rounds. This time around it was split into Pediatrician and Parent sections. My personal favorite from the Pediatrician side was this post about poop. A notable parent submission was this touching post about the ups and downs of having a child with health issues.

Pediatric+Grand+Rounds

Pediatric Grand Rounds

The latest edition of Pediatric Grand Rounds is up. There are a lot of great submissions including this one exploring the ethics of alternative treatments for children.

Pediatric Grand Rounds 1:22

Thanks to Hallmark and other card and candy companies February 14th has been turned into a manufactured holiday that is supposed to evoke feelings of love towards a romantic partner or feelings of depression when one does not have a romantic partner. The symbol of this holiday is the heart. It was only natural that when the Congenital Heart Defect community was looking for a way to increase awareness Valentine's Day was a natural fit.

Heart defects are near and dear to my heart because my eldest son Evan (who is not actually pictured in this post because of a recent reluctance to have his picture taken) was born with a very complex heart defect which requires a series of three surgeries so that he could live a fairly normal life. Previous to his birth I was not even aware of the prevalence of heart defects. The media hypes up the rarer birth defects but is not so enamored of the more common yet still fascinating heart defects.

According to the American Heart Association %1 of all children born have a heart defect of some kind. They are the most common type birth defects but are sometimes not detected until it is too late. There are a variety of factors that can result in a heart defect and they happen long before a woman even knows that she is pregnant since the heart is one of the first organs to form. There is often no strong genetic tie to many heart defects but many genetic syndromes such as Down's syndrome include the possibility of a heart defect occurring. Sandy Szwarc at Junkfood Science gives a great account of some of the myths that surround birth defects. Take heart parents! Often they do not happen because of something that you did or did not do while pregnant.

In his latest addition to The Not So Normal Newborn Nursery Clark Bartram discusses a heart defect that has a much clearer cause. He is looking for a heartbeat.

In ancient times the heart was seen the place where thinking and feeling took place. The brain was seen as filler to keep your head from caving in. We still use references in modern times that hint that we still see the heart as the place where feelings happen which is how Valentine's day became associated with hearts.

My own submission helps others know that when talking with a parent in the midst of a child's health crisis often all that is needed is A Kind Heart and listening ears, no guilt required.

Pediatric Grand Rounds is getting a bit of link love over in India. Dr Sidharth Sethi at pediatricsinfo.com submits this link to an article written by him for a pediatrics publication in India. It is good to know the word is getting out about great medical blogging going on.

Student Nurse Jack talks about following her heart in Bull. Shit. by not allowing her daughter to be a guinea pig for a new vaccine. Her reasons are very well thought out and may give other parents of girls something important to think about.

VitaminKMD listens to her heart which is telling her that there is something not quite right with her adorable little patient in Other than that, Mrs. Lincoln, how was the play? Her heart hurts when she later discovers that she was right but that the child was sick with a life-threatening illness.

Kim from Emergiblog recounts a heart stopping moment she had as a parent in Call 911, He's Dead! The love she had for her son temporarily overwhelmed her abilities as a seasoned nurse.

Does the American Academy of Pediatrics love their little patients more than market share? Flea explores the issue in Because We Care... About Market Share.

The NICU is filled with broken hearts (both figuratively and literally). Neonatal Doc shares the heartbreaking story of some of the ups and downs that can happen with premature babies in Bungee.

Some parents think that they are showing love for their children by filling their schedules with many different enriching activities which are supposed to keep them from the alternative which could be sitting around and watching tv all afternoon. They carefully monitor their child's diet. Shinga points out in The Duvet Diet that a good night's sleep might do more towards children's health than many other medical or dietetic interventions.

Vahid Chaychi discusses the long road of childhood cancer and some of the heartbreaking moments that can happen during treatment in Detecting Cancer in Children and After. It is a great guide for parents that may have just had a child diagnosed with cancer.

That concludes this edition of pediatric Grand Rounds. It sure was a fun challenge putting this together. A big thank you goes out to all the participants. I would like to give thanks to Shinga for her help with this edition of Pediatric Grand Rounds. The next edition of PGR will be hosted by Dr. Lourdes de Asis at Allergy and Asthma Source. Clark is looking for more hosts of Pediatric Grand Rounds. The schedule can be found here.

Here are a few links about heart defects that I have discovered in my online wandering. Enjoy!

• This is a website about the first operation done on babies to help relieve some of the effects of the cyanotic heart defects.
• CHIN is a great place for parents and health care professionals to get information, support and education about heart defects.
• The American Heart Association while often associated with adult acquired heart disease also has a wonderful section for children with heart defects.
• Another link that gives a brief history of heart surgery.
  
  

Pediatric Grand Rounds

Pediatric Grand Rounds is up at Parenting Solved. I particularly enjoyed the posts submitted by Sandy Szwarc who has a blog called Junkfood Science. It reminds us all to be a bit more critical of what read in the news.

Pediatric Grand Rounds

Pediatric Grand Rounds is up over at Breath Spa for Kids. Shinga has put up another wonderful edition. Something worth checking out is Dr. Flea's series of posts on the diseases kids are currently vaccinated for. It sure makes you glad for modern medicine.

Do you have any questions?

Harry had his 1 year well baby check up today. He is average for weight (22 pounds) and below average for height (I forgot what it was and I am too lazy to even get up and look) but he is keeping up with his growth curves.

After being quizzed about various things, it turns out that Harry is drinking the proper amount of formula (which will soon be changed to whole milk once this can of formula is gone). I am doing good by not giving him juice and I should try and make sure that the meat Harry eats is white meat instead of red. I am not too sure how I feel about the last one but let it pass.

My least favorite part of a doctor's appointment is at the end after all the quizzing. The dreaded "So, do you have any questions?". I feel like I should have something to ask. Often times I don't, especially at run of the mill pediatrician's appointments. Generally if I want to know something I will look it up online or ask someone in my family. I really do not involve my pediatrician in things like how to discipline my child or what I should be teaching them and when. I think of those things as none of your business areas, although I know people who involve their pediatricians in things like that. I figure I have a brain and I know how to use it. That is why so often when the question comes up I have nothing to ask about.

Maybe I should just ask the questions that I really would like to know. Do you have a blog? Are you going to write about us if you do indeed have a blog? Can I read your blog? Would you like to read my blog? Do you think I am a nut case mom, or do you actually like us as patients? I have to admit that the last question is not one that weighs too heavily on my mind since the instant Evan saw the pediatrician enter the room he ran up to him and hugged him. I doubt that anyone could resist that.

The coumadin nightmare

Last night I kept waiting and waiting for the expected does of Coumadin for Evan. He was getting tired and I wanted to give it to him before he went to bed. I talked to his nurse to see what was going on. Apparently it had been ordered as a one time dose. After assuring her that I knew for a fact that Evan was going back on his Coumadin the nurse went to talk to the night doctor. Apparently this doctor got a bit snippy with the nurse saying that Cardiology wrote it and so they obviously wanted it that way. The nurse fought the good fight and got the doctor to look into the issue.

Then Pharmacy decided to throws fits about it. They did not want to send it up because Evan had not recently had his anti coagulation levels checked. A call had to be made to Evan's surgeon about the issue and he finally got everything smoothed out and around midnight Evan finally got the dose of Coumadin that he was supposed to get at 8 p.m.

This sort of thing is pretty much par for the course when you get up to the pediatric floor of this hospital. Communication seemingly flys out the window. Before we even went up to the floor Evan's surgeon and cardiologist made sure that I was clear on what should be happening over the weekend. They are all too familiar with these sorts of goings on. I have noted this time and time again when I get the inevitable customer satisfaction survey. I have even talked to people on the phone about it and yet nothing seems to have changed. I shudder to think of what could be happening if I was not so vigilant and constantly there all the time. If his INR had dropped low enough Evan could have formed another blood clot which could also cause another stroke.

I have to say that while the PICU is super loud, I prefer it to having to deal with this crap all the time. I know all the nurses there. You get to spend more than five seconds talking to the doctor. I also have a good reputation there. They know that I am an involved parent that is willing to assist in my son's care. They will take into account the things I say and not treat me like I am a moron.

I actually got suggestions yesterday morning from one of the doctors on the peds floor about what to feed Evan so that he will not loose too much weight. Like I have not been doing that all his life. Like I don't know what he will eat and what he will turn his nose up at. Yeah, I had given him fruit for breakfast but I had wanted to give him something easy to digest for his first meal of solids. The doctor did not even think to ask me why I did what I did. I am counting down the days until we can get home.

Bad

Evan had rotten teeth. His front teeth have cavities on them to be more precise. I am feeling like a horrible mother because I put off taking him to the dentist for so long. Because of his age he will have to be sedated. Because of his heart it will have to be general anesthesia and he will have to be carefully monitored. That means that the fillings will have to be done at a major hospital. *sigh* This whole thing turned out to be a much bigger ordeal than I had anticipated.

I am not sure when or where even this all will take place. Evan's heart surgery is taking top billing. I am definitely being a bigger meanie about brushing. I am not letting him get away with a few half hearted swipes because he is throwing a temper tantrum. Mean mommy is in da house.

How long?

When Evan had his stroke the neurologist told me that he should be a normal little boy by one year post stroke. He would of course need physical therapy but with a little work you would not be able to tell him from any other child his age. I totally bought into that idea because I wanted Evan to as normal as he could be.

Evan is now roughly a year and a half post stroke and is still very visibly affected by it. The untrained eye might not see anything but it is not too hard for anyone that pays the slightest bit of attention to notice that he does not use his left arm. Evan is also much more prone to tripping and falling because of his left sided weakness. He has a peculiar gate that is especially noticeable when he is trying to hurry.

I have been struggling for some time with all of this. It is so hard to know when I should help him or when I should let him attempt to do something on his own. I worry that he will fail but sometimes he will surprise me by doing things in unexpected ways, succeeding where I had thought he would not.

When should I stop hoping that he will snap out of it and start using his hand? How long should I keep trying to encouraging him to keep trying? When should the focus of physical therapy change from regaining use to adaptive behaviors?

The prevailing wisdom is that if something has not improved by one year post stroke then it is very likely that it will not get any better. I can't really disagree with this, Evan's biggest gains came very quickly. His stubborn little hand is still there hanging off of his arm, seemingly unnoticed. Occasionally he will take the forgotten hand and use his good hand to make it touch something that particularly excites him. Today I saw him actually steady his sippy cup with his weak arm, briefly, but he still did it.

Things like that help give me hope that maybe he could gain more use of his hand. Sometimes, though, I wonder if I should stop hoping and start accepting. Once I start accepting it means that I am accepting that I am the mother of a child with a disability. Am I ready for that label for my son? I am just not sure.

Who died and made you king?

I have been feeling very grumpy of late and I am finally ready to get it out of my system. Friday I found out that my insurance company has decided to no longer pay for any of Evan's feeding supplies. They think that due to the fact that he is only on one can a day of Pedisure that they should not have to pay for any of it now because it is obviously a supplement and not a major source of nutrition. Grrr!

Why is it that they get to decide when my son has been on the feeding tube long enough? The reality is that it should be his GI doctor and me that make the final decision, not some pencil pusher in an office that has never even met Evan. If they had met him they would be so charmed by his cuteness that they would give him anything that he wanted.

Luckily we already have an appointment with his GI doctor scheduled in a little over a week. I had anticipated that we would be stopping all tube feedings at that time so I am not fighting the insurance company right now. We have enough extra supplies to eek our way through the week. If the decision is to not stop the feeds then all hell will break loose.

I have to say in the insurance company's defense they are generally pretty good about paying for things. Many of the people that I know that have kids with feeding issues can't get any type of formula for their kids covered because it is considered food. I am rolling my eyes right now. I do take issue with the fact that my insurance company will not cover the cost of us seeing a nutritionist. You would think that they would cover that kind of thing for a kid with a tube but they don't. They don't cover the cost of any one seeing a nutritionist.

Follow up

Time travel

In this post we are taking a trip down memory lane.

I was pregnant with Harry so I was a hormonal mess. The first anniversary of Evan's stroke was fast approaching and I was very worried about his continued lack of progress with his left hand. I was feeling worried about Evan's delay in talking as well. Needless to say I was a wreck and questioning every little thing I was doing, worried that I was some how ruining Evan's chances at a "normal" life.

The big reason that I was so obsessed with Evan's lack of progress with his hand and the approach of the first anniversary of his stroke was that I felt that time was running out. When Evan was in the hospital for the stroke the Neurologist had assured me that it would only take a year for all the effects of the stroke to be invisible. All it would take was physical therapy. The silly thing was that I actually believed him, so when things were not progressing I blamed myself for not pushing Evan harder.

To add to this stress I had visited a friend a few days earlier. Her son is also in physical therapy and the appointment started while we were there. I saw the therapist eying Evan and told her about his stroke. She then did an impromptu evaluation and started telling me about electrical stimulation therapy. She told me all the wonders it did for children like Evan and how I could be selling his future short by not trying it. I was not sure that I wanted to try something like that with Evan but her tone was such that I would be a bad mother if I didn't try it.

In the midst of this turmoil Evan had an appointment with his pediatrician for a well child check up. I ended up pouring my guts out to the pediatrician, expressing all my worries. My fear that some how I would ruin Evan. My feeling of being overwhelmed with the new baby and my having a lot on my plate with Evan. Dr. D was amazing. He managed to calm me down and ease my fears. He helped me feel like I was a competent caregiver again.

I have to say that I have been very lucky in my choice of pediatrician. I picked him out from a list that my OB gave me. I didn't interview him or anything but I sure managed to pick a winner.

Fun with Coumadin

Because I was crazy busy last week I totally spaced testing Evan's INR. I do the test every other Friday at home. The machine is very much like a glucose monitor but it takes more blood to run the test. It is a great measure of the trust that Evan's Cardiologist has in me as a parent that I am able to do this at home instead of having to go into the office and have them do it.

Today Evan's numbers were high. This is something that has never happened before. They have come up low and I then will have flashes of Evan having another stroke. His medication will be adjusted upward and then the next test is usually fine. Evan's numbers being high presents a whole new problem. I have flashes of him tripping, falling and scraping his knee which then proceeds to bleed for a really long time. Or I have visions of being in a car accident and Evan being injured in a way that would not normally be fatal but because of his high numbers he bleeds out in an incredibly short amount of time.

Because of my overactive imagination we stayed at home in where things are padded. Evan was not happy about that. He loves being outside, looking at cars, going shopping and other things that do not involve staying at home all day. I hate that I have to feel this way, that I have to feel so protective of him. I know that things happen that are out of my control. I don't want to be overprotective of Evan and turn him into a creepy child that has no social skills and lives with his mother when he is 40. I want him to be able to grow up as a strong confident child..... a strong confident child that knows enough to take care of his health and will stay safe at home when his INR is too high.

Feeding Your Child

Back in the days when I was pregnant and my head was filled with all the joys of my upcoming birth I never questioned that I would be able to blissfully feed my infant into the appropriate chubbiness that is expected of a baby. Babies eat, it was as simple as that in my hormonally clouded mind.

Then I gave birth to Evan. He had a rough start in life and was not actually given any food for the first four days of his life. An IV prevented dehydration but the doctor was wary of feeding him because of the possibility that there may not be sufficient blood flow to his bowels causing the food to possibly make bad things happen in an already uncertain situation. This simple decision added to reflux and a heart that had to work harder than a normal one (ever try eating food while exercising? It is hard) led to a baby that did not like to eat and didn't really ever feel hungry.

It was devastating for me. I didn't see the heart defect so it really was easy to pretend that he was a normal child but the eating issues smacked me in the face every few hours. I felt like a horrible mother because my son would not eat the way that a normal child would. I had to cram a NG tube down his throat every night to make up for the nutrition that he would not eat during the day. I would not give him tube feeds during the day because that meant that he would have had the tube in at times when other people could see him and wonder why he was different. I wanted him to be normal and I went the extra mile to pretend that he was.

Feeding him in public always sent me into a tizzy. Evan had to have his bottles warm, so I not only had to deal with that but I also had to deal with him puking at the drop of a hat. It was very difficult to say the least and I often ended up having to go home from church to change my clothing.

Adding to my woes was an awful GI doctor that was no help at all. He seemed to barely speak English, I wondered if he even understood what I was trying to tell him. He ran a grand total of one test (an emptying scan to see if Evan was digesting food properly) and then told me that Evan's pacemaker placement was causing the problem because it was right over his stomach. He had me come all the way down to the city several times for weight checks, never even considering what a hardship it was for us. Each visit was a huge interruption to Evan's feeding schedule.

I kept desperately looking for the magical cure to the problem. I latched on to the pacemaker theory only to have that squashed soundly when it was later moved to the other side and his eating had not improved one bit. Many well meaning people even suggested cutting out the night feeds, thinking that getting food all night was hampering his ability to feel hunger during the day. I had tried that many times only to have to endure a cranky baby that ate even less than before. Every time I read about a parent trying a new thing to get their child to eat I was filled with hope and giddy to try it myself. Each time I had my hopes dashed.

After Evan had his stroke I took it on myself to stop all of his GI medications. I just wanted to see how much they were helping. Once I stopped them he suddenly stopped throwing up as much. After his first birthday he started throwing up during his night feeds and that was a signal to me that it was time to stop fighting the g-tube. Shortly before the surgery I also consulted with a dietician (which I had to pay out of pocket for since my insurance did not cover it) and got a lot of ideas on things to feed Evan. I also had an appointment with the GI nurse practicioner and she gave me the practical advice that I had been looking for from the GI doctor.

Letting Evan choose how much to eat, giving him calorie dense foods and stretching a stomach that had been previously used to only small amounts of food has really paid off. Things have gotten so much better and it is looking like this horrible journey is almost over. I certainly do not ever take it for granted when I watch Harry suck down a bottle or eagerly look for the next bite of his baby mush. I soak up the comments on how big Evan has gotten and how good he looks. I will also never ever give unasked for advice about feeding a child because they can be quite hurtful even if they are not designed to be. A listening ear is what I offer.

Evan's story

We were a young couple eagerly expecting our first child. At the time, every thing seemed to be falling into place with our lives. My husband was completing specialized training for the military, we were pregnant and we would be assigned to an area when he graduated where we could start thinking about buying a home. There was no hint of what was around the corner.

The first surprise was that Evan was in a breech position and estimated to weigh over 11 pounds. My obstetrician discussed this with us and we decided that trying to turn the baby would be fruitless because of his size. A cesarean section was scheduled. At that point I was just glad that the end was in sight. I was so tired of barely being able to move and eager to meet my baby.

Everything with the birth went well. Evan weighed a whopping 10 pounds 6 ounces and passed his Apagar scores with flying colors. I was thrilled to be holding my perfect baby and was eager to start nursing him. The nurse was helping me latch him on my breast for the first time when she noticed that he turned a bit dusky for a brief period of time. Assuring me that he looked fine and was only doing this just in case she went and got the pulse oximeter to test how well oxygenated his blood was.

The numbers were lower than expected so she took my precious baby from my arms to run more tests on him and put him on supplemental oxygen. I was so tired and still drugged up that I drifted in and out of sleep praying the whole time that nothing would be wrong with my baby. I kept hearing him cry while they poked and prodded him.

The pediatrician on call decided that he needed to be moved from the small community hospital that he was born at to a larger one with a NICU. I asked to go along with him but since I could still not feel my feet, because of the spinal block, I was told that I would have to stay where I was for now. Devastated I was allowed to see him one more time through the incubator that the EMS people had brought to transport him to the other hospital.

The doctors from the other hospital assured us that he merely had pulmonary hypertension which caused his pulmonary arteries to shrink a bit with the stress of adjusting to life outside the womb. All he would need was extra oxygen and time.

Five days after his birth I went to visit Evan with my mother-in-law. He has been placed on bipap to help open up his lungs and he seemed to be doing better. An echocardiogram was scheduled for that day because one of the doctors thought he heard a murmur in Evan's heart. I decided to stay and watch the test.

It took awhile to get all the equipment set up as it was going to be a video consult with a pediatric cardiologist in a city about two hours away. I remember sitting there as the test began confident that this was a mere formality. Then the technician that was performing the test started freaking out. She could not find all the normal things that she was looking for. I could not at the time understand what she was looking for but I picked up right away on her worry. I started praying again that my precious baby would be fine.

He was not fine. They discovered a very complex heart defect and would have to transfer him to another hospital with the expert pediatric cardiology team that he would need to address his complex health problem. The doctors could not even apprise me of the extent of his defect since they were not experts in the heart and there was static on the line so the cardiologist did not get a complete picture either.

My world was completely turned upside down that hour. I went from having a baby that needed a little extra oxygen to one that was gravely ill. Before we would be able to take our firstborn home we would have to endure several surgeries including the implantation of a pacemaker, six weeks of hospital time, eating difficulties and the destruction of all our hopes and dreams.

Getting him home was only part of the battle. He developed bad reflux while in the hospital so nutrition to get him to grow before he could get to the next stage of his operation was a huge challenge. I also had to come to terms with what it meant to be the parent of a child with a heart defect. I had to endure the pitying look in people's eyes when I told them about Evan's diagnosis.
Surprisingly he did not turn out to be a sickly infant, too weak to even lift his head. He hit all of the important milestones at all the right times. Slowly life achieved a new normal.

About that time it was decided that he was ready for his next surgery. By this time I had done more research and connected with other parents through the internet. I felt more in control with the situation. I had been there before.
Evan did well with his surgery and was out of the hospital in a week. I was thrilled and happy that we would be able to go and spend Thanksgiving with family. I thought we were home free as he would probably not be needing his third and final surgery until he was three or four years of age. I had so much to be thankful for.

The evening of the day after Thanksgiving, Evan started crying
inconsolably. I was frustrated with him for not responding to my attempts so calm him and eventually I ended up putting him down for the night thinking that he was just over tired from all the excitement of the day. He woke up early that morning and when I went to get him I could tell immediately that something was wrong. One side of his body was limp and useless.

A CT scan would show that the middle third of his right hemisphere, the part of the brain devoted to voluntary muscle control was affected. Again our world was turned upside down. This time we were very lucky as if that blood clot had happened in any other part of the brain his entire personality and ability to learn could have been affected. He could have easily died that night.

Again life has returned to a new sort of normal. Evan finally started walking a year after the stroke. There is a trace of a limp in his walk and he refuses to use his left hand instead preferring to make other adaptations. He is on blood thinners to prevent another stroke so when he trips and falls he bruises easier than most kids. The casual observer would not realize that there is anything amiss with him.

While life is "normal" right now I know that it can change in a blink of an eye. Evan is facing another major surgery this fall so of course I am hopeful that maybe this surgery will go smoothly with no complications. We shall see what life holds in store for our special little man. All I know is that I treasure moment that we are blessed to have him here with us.

October 10, 2006

I am adding more to Evan's story since he has been through the third of the three stage surgery. The surgery went very well with no major complications. He was only in the hospital for a week. During that week right before he went home he was placed on a 24 hour Holter monitor. That test showed that Evan's pacemaker was not working correctly due to inflammation from his surgery. Evan has an underlying rhythm, so it was not like he was in immediate danger but it was decided to admit him after several pacemaker interrogations showed that there was minimal improvement in how the electrodes were working. After being given some steroids the electrodes started working better but still not perfect. Right now we are at the stage where he will have to have his pacemaker replaced in the very near future.

Another update:

Evan had his pacemaker replaced with no problems at all. Things have been very quiet and great for us.