Hypoplasia: Underdevelopment or incomplete development of a tissue or organ. For example, there can be hypoplasia (underdevelopment) of the enamel of the teeth. Hypoplasia is less drastic than aplasia where there is no development at all.
Today, the doctors brought up two possible treatments:
1. Treatment with an "experimental" drug which will hopefully stimulate vessel
growth. It sounds like they are working on this in Boston and at Stanford.
2. Treatment using balloon dilation. Basically, this involves inserting a catheter or
other device into the most important veins and vessels in the hopes of
"stretching" them to a larger size with the hope that they keep the new,
larger size.
08/23/07
Thankfully, we are going home today with our baby, Evan. We had stayed at CHOC in Orange for a week and the staff and doctors were wonderful in their support of Evan and us. During the week of heart monitors and the like (all of which were stable the entire week), it appears as though Evan is in no immediate danger, so we decided to go home, sleep and consider our next options. We have been in contact with several of the doctor referrals received through the web site and personal contacts. Currently, our surgeon at CHOC will be communicating with an extremely well-known pediatric surgeon located in L.A. in the next few days. They will let us know what recommendations they have for Evan. We will then have a big decision to make. Either way, your prayers and e-mails are felt and appreciated. We will keep the website updated.
08/26/07
It may be an eventful week coming up. Tomorrow (Monday, 27th), we have three doctor's appointments. Two of them relate to Evan's condition, the other is his 2 month check up and shots. Regarding the two other appointments, we are researching what we understand to be our two main options going forward. The meetings are with doctors who seem to be tops in their fields. The website feedback many have generously contributed has confirmed that these are the doctors we want to be talking to. In addition, we are getting independent opinions from doctors who are in the field but who have no stake in Evan's condition. We feel very good about the ones we are currently talking to. THANK YOU to all who have offered referrals, information, prayer support and emotional support especially from those who have been through similar situations. Your stories of success amid uncertainty have warmed our hearts and have given us a lift in hope.
Once we talk to the doctors and listen to all of the information from them, we will choose a course of action which may very well involve some type of surgical task and another hospital stay. One thing that has been a consensus opinion from any doctor involved is that something needs to be done ...... and quick. Evan could be having the procedure done as early as the middle of this week. I will keep you posted as much as possible.
Just a note: Some wonder where we find the time to do these updates. When we are pre-occupied in a hospital, like we were at CHOC last week, we don't have time to do these updates so we verbalize them to our brother who then posts them on the web for us.
08/27/07
Today we had all the appointments for Evan and have decided on a course of action. Evan will be going to CHLA for a Thursday early morning surgery. The procedure they will be performing on Evan is very risky, but the options at this point are extremely limited. Evan is definitely not out of the woods yet. Dr. Vaughn Starnes is very well known as one of the best out there in this area of expertise and a number of e-mails and postings to this website mentioned him. We are grateful that one of the best is located in our metropolitan area. We met him today and he made us feel very comfortable. We feel as though God pointed us in his direction as the one with the best chance for helping Evan. The procedure itself involves manually widening the two most needed heart arteries and a few other key veins/arteries to increase the blood flow through them. With a higher rate of flow through those two, the hope is that it will help stimulate growth of the arteries and veins down stream (I think I'm understanding all this medical stuff correctly). The surgery should last about 3 hours, then Evan will be at CHLA recovering for 2-3 weeks after that. He will then be able to come home at which point he will have checkups and we will find out what the next steps will be. There will be more surgeries down the road at some point, but for now we are just thinking and praying about Thursday and that God will pass His power of healing to the hands of Dr. Starnes. This week will just be the beginning of what we understand will be a long, slow improvement to his condition. Please continue to keep Evan in your thoughts and prayers as we venture into this very critical stage in his recovery. Tomorrow, we will take Evan in for some pre-op testing. Unless the situation warrants, we will post the next update after his surgery.
08/30/07
Surgery had to be postponed for a week. Details later today.
09/04/07
(So sorry this update is late, Kami's brother.)
Thursday we arrived at CHLA early in the morning since Evan was going to be the first up to bat with an approximate start time of 8:15. It took a lot to get mentally and emotionally ready to see our baby go in for a major surgery, but we were prepared nonetheless. The family support group had also arrived early. We had been told not to feed Evan after 12:30 am that day, so our little eating machine was a tad uncomfortable at the time we arrived. After waiting for a bit we were informed that the surgery would have to be postponed until 10:30 due to an emergency surgery Dr. Starnes had to tend to. If you want the best doctor doing the work, so do many others. We accepted this and began our additional wait. Of course, there was no way Evan would have any part of waiting that long to eat, so through his persuasive vocabulary, he convinced the staff to allow him to eat up until 8:30. Eventually, Evan went in for some pre-operation prep work when it was discovered he had a touch of Pink-Eye. This was not good being that any infections he has would complicate matters during the surgery. Therefore, they could not perform the surgery as long as he had this condition. Where he picked it up from was anyone's guess. Since no other options were available, we re-scheduled the surgery for this Thursday, September 6th early morning. Needless to say we will be effectively quarantining ourselves with no visitors until next Thursday as we don't want to risk another postponement. It will take some effort to get mentally and emotionally ready again, but we will be ready and hopefully everything else will be all-systems-go. If I look at the bright side, it just means that Evan is getting another week of thoughts and prayers from all of you kind and thoughtful family, friends, acquaintances and web site visitors. He can use all he can get.
09/06/07
Evan went in to surgery at approximately 8:30am PDT. Estimated time is 3 hours. More later.
EVAN CAME THROUGH WITH FLYING COLORS! The doctors accomplished what they wanted to today. More details later.
09/07/07
As mentioned above, Evan came out of surgery yesterday very well. The doctors had a goal of what they wanted to accomplish when they started and the goals were met. They had to replace a bit more heart "plumbing" (for lack of medical terms) than they had anticipated, but nothing that couldn't be overcome.
We arrived at the hospital early once again as Evan was first up to bat. The surgery started at about 8:30am....and the wait began. Some of the family support team also arrived that morning and helped us through the tense waiting period. We were relieved that Evan was finally getting the help he needs, but with a surgery of this magnitude we realized there are many things that can complicate matters. Finally, Dr. Starnes came in to give us the news that the procedure was complete and the Evan was still resting with the help of medication. We felt a wave of relief come over us that the first step in Evan's recovery was done. That relief quickly faded to more concern as we learned the next 48 hours are critical. He is currently hooked up to many tubes and under medication. He will be coming out from under the medication and having some tubes removed over the course of the next couple days. Patients react to these things differently, so it will be important that he reacts well.
Evan is currently in the Critical Care unit and will be until he stabilizes, at which point he should move to the Pediatric ICU. We were able to see him yesterday, but still can't touch him or interact with him. He did open his eyes and started moving when he saw us, but the staff quickly calmed him down because they need him to stay calm during this 2 day period. Once in the PICU, we should be able to feed and change him among other interactivity.
Yesterday was quite overwhelming as our emotions went from nervousness to relief and joy to concern to the realization that ...... Evan will be at this hospital for what could be another 2-3 weeks. This is not to mention the fact that this is only the first inning in his recovery. All we want to do is pick him up and bring him home. God had a different plan for Evan and us right now so we will leave it in His hands to guide us through this. Any decisions and directions we take from this point forward will be based on the status of his condition. He will most certainly have more surgeries in the future, but when, what and how we just don't know yet.
For now, we are just going to be at Evan's side and wait for the opportunity to hold him in our arms and let him know that Mommy and Daddy aren't going anywhere.
09/09/07
Chicks Dig Guys
With Scars!
So our little roughed-up man made it through the initial 48 hours
after the surgery. He is awake and alert a bit more now that the surgery/heart
medication has worn off, so he can see that Mommy and Daddy are there. We are
his only taste of home these days. We try to be next to him as much as possible
when he is awake. It's a bit emotional to see him like this, but we are trying
to be strong for him.
They still have him on one heart medication and give him an anti-anxiety
medication to keep him calmed down so as not to work that heart too hard. Other
than that, the big item is that they pulled the breathing tubes out which he
didn't like at first. He was having a little trouble with it, but he has gotten
better. His breathing while sleeping sounds pretty normal, but his awake
breathing is a bit out of sync. As you can see, he does still have the nose
tubes in for a little assistance. He appears to be working with it. It's a lot
to get used to. Dr. Starnes said that his body will have to get used to the
increased blood flow coming from the heart, so he may be out of sync while his
body absorbs the changes that happened. We still can't hold him and he is still
being fed through an IV so we are just waiting our turn. Even though he isn't
having formula, he has retained his Daddy's cheeks, so we're happy about that.
We still don't know when he will move to the PICU, but it probably won't be for
a number of days yet. Of course, we will keep the updates and pictures coming as
news warrants. Again, we can't say thank you enough for all of the over-whelming
support and communications we have received. Thank you from the bottoms of our
hearts!
09/18/07
Sorry about the delay in updates, but a lot has happened since the last one. After what was thought to be a 2-3 week stay at the hospital turned out to be a fair amount shorter. Evan recovered from the aftermath of the surgery very well. As the days went on, the hospital staff would methodically remove a tube here, a medication there each day then wait to see how he reacts to the change. He never missed a step (or a feeding time). He reacted so well to each change that they would continue until one day he was off all regularly scheduled medication and left only with a tube in his nose to help with fluid removal left over from the surgery. Shortly thereafter, he learned, with some assistance to clear it without the tube. Since his vitals have been steady, there was no medical reason to stay at the hospital. So with some relief and yet trepidation, we packed up our little bundle of "Never a Dull Moment" today, and headed home to see if there was some sense of normalcy still there we could get back to.
A little plug for the Ronald McDonald House where we stayed during our time at CHLA. What a great service they offer for anyone in our situation. A low cost, clean facility that allowed for some sense of alone time without time limits. They were very generous and many others there appreciated the opportunity to stay while their little ones were being cared for. Luckily, our stay was much shorter than some others there.
09/21/07
We're home!! Evan jumped another major hurdle these past few weeks. Considering Evan had nine different procedures done, his doctors at CHLA are excited about his progress. This is just the beginning of a long journey for our family. All the thoughts, prayers and e-mails (we have read every single one of them) everyone has sent our way, are needed and so appreciated. Thank you for continuing these as we take the next steps in our difficult journey of healing, more procedures, and high hopes for our baby boy. We will continue posting Evan's progress with updates on the web site, along with pictures to keep everyone informed. Monday we are going back to CHLA for his follow up visit with his cardiologist and surgical team. They are taking chest X-ray's and an EKG to ensure his little body is healing properly. This will be the first of many doctor's visits to monitor his progress.
Thank you again, and again for all your support and prayers from everyone across the world.
09/27/07
The three of us went to CHLA on Monday for our follow up visit. They took an X-ray of Evan's lungs which seemed clear and the EKG was good also. We will be going back to see our new pediatric cardiologist on October 9th....from there Dr. Lewis will keep a very close eye on Evan and his progress in these upcoming weeks and months. We are continuing our prayers, of course, because time will tell if his veins and blood vessels will grow from the increased blood flow.
As far as the immediate future goes, Brian and I need to keep Evan strong and healthy. Since we've been home from the hospital, we haven't taken him out, nor have family or friends been able to come over and visit. This is hard, we wish everyone could see our little (or big) guy growing and developing. We'll eventually get to that point. Right now, we just have to keep him safe from the up and coming cold and flu season.
On October 10th, Evan will finally be able to receive his first round of vaccinations. Also, we will be having a nurse come in once a month, from October thru March to give Evan a shot to prevent him from getting RSV (Respiratory Syncytial Virus). There is no vaccine for RSV yet, but the shot of immune globulins give a temporary immunity. This shot is given to preemie babies, and those babies born with lung and/or heart disease, like Evan. RSV attacks the mucus membranes of the respiratory tracks (nose, throat, windpipe and the bronchi..air passages of the lungs). We need to avoid this, or a common cold can turn into bronchitis or pneumonia. If that were to happen, Evan would be back in the hospital for weeks, with breathing tubes, feeding tubes etc. These are the reasons we desperately need continued prayers. Thank You for continuing to check the web site, it's awesome how many people are devoted PrayersForEvan.com visitors.
We will be posting recent, post-hospital pictures early next week, as well as more updates.
10/21/07
We took Evan to CHLA for another follow-up visit with Dr. Lewis, his cardiologist. Dr. Lewis is extremely impressed with Evan's recovery since the surgery. Although we need to be cautious this cold and flu season with him, Dr. Lewis is optimistic about the next several months. We had another Ecco and EKG, both were exactly what the doctor wanted to see. Also, there is increased blood flow, which relieves his heart of the tremendous pressure it was under previous to the surgery. This is all great news!!!! We are still praying for his increased blood flow to stimulate the growth of his veins in his entire body. We pray for his continued health and strength to get us through to the next stage. We go back to see Dr. Lewis in three months.
Evan also had an appointment with his pediatrician at CHOC. He received his first round of immunizations. He did fantastic, not even a fever....I guess the shots were easy..considering everything he's been through :) The next step..
We are waiting for the scheduling to begin for the RSV shot. Our doctor said he will receive it by the end of the month.
Other than all of that, Evan is growing and changing every day. He is truly a blessing. He's laughing and playing all day long...he's such a happy baby. We are still needing thoughts and prayers from everyone. This next several months are critical.
Thank You for checking the website, sorry for the delay on the update. Also, we've posted more pictures, please check the green pictures link on the left to see how much he's grown.
12/08/07 
Well it's been about four weeks since our last update, and we've been to and from doctor's appointments. Evan had his first RSV (respiratory syncytial virus, see update from 9/27) shot on November first. This was exciting. While still being cautious, this allows Brian and I to feel a little more comfortable taking him places. He's loving it, I think he's amazed of all the other people in the world. We're having fun, and feeling a bit normal.
On November 9th, he went back to his pediatrician for a regular check-up and to receive his 2nd round of vaccinations. He's a big boy!! At 17 weeks old, he weighed 20.6 lbs. and 24 1/2 in length. He has two teeth coming in on the bottom, and we've started him on cereal, fruits and veggies! It's exciting to see him grow and to have a fun doctor's appointment :)
On November 12th, we went to CHLA to see his ear, nose and throat doctor that had seen him when he was in the hospital. For several weeks following the surgery, we could barely hear Evan. His left vocal cord was weakened from the extent of work they did on him during surgery. This is common. Remember, they did nine different procedures during surgery!!!! Since then we can hear him loud and clear!! The ENT doctor put a scope thru his nose to look at his vocal cord. Everything looks great. His left cord is moving, his voice is loud... we don't have to go back to see her again. Yeah!
Our next appointment will be next week to get his 2nd RSV shot. We will continue this once a month until March, possibly May. From there, we see the pediatrician and the cardiologist the first week of 2008!!!
In the meantime, we'll be posting a couple of updates and pictures!
We hope everyone will have a Merry Christmas and a safe holiday season.
10/04/08
It has been too, too long since our last update. The last ten months have flown right by us. Life has been filled with fun, normalcy, hope and lots of prayers. Evan is proving to be our miracle baby! It’s just amazing how far he’s come. I’ll take you back from when I left the last update.
On December 28th, Evan turned six months old. He weighed in at 23 lbs. and 10 oz!! Our big boy was growing and growing.
Thru January, he started to roll over and loving every fun little turn. We had a feeling this little guy was ready to make a statement in the world. We had an appointment with his cardiologist on the 8th. They did a routine EKG and Echocardiogram. Everything looked like it should at that point. Dr. Lewis gave us a four month ’break’ until his next appointment. The breaks between appointments are welcomed because it has helped us be more relaxed on a daily basis. At this point, we were so ready to settle in and be a ’normal’ family.
February brought the word ’dada’, three more teeth and crawling. Every milestone Evan reaches is a miracle. At the beginning of this story, back when he was six weeks old, we honestly had no idea how he would grow and develop. Sitting up, crawling and all the ’normal’ things are so exciting for us.
On March 28th, Evan turned nine months old. He weighed in at 27.6 lbs. Still growing!! This was an eventful month. CHLA put us in contact with a family that has a baby two months younger than Evan. This baby had the same surgery performed on him by the same surgeon, Dr. Starnes. We since have met this family and remain in close contact with one another. We find it mind blowing that there is another beautiful baby boy that has the same issues as Evan. The fact that they live so close to us is truly a blessing. We don’t feel alone in this journey we are taking with Evan. We understand each other’s fears and lend support to one another. Evan and Casey will be friends for life.
April brings us to another cardiologist appointment on the 6th. Now Evan weighs 28 lbs. and is 31 inches long. Again, Dr. Lewis said everything was the same with the ECCO and EKG. He instructed us to go home and be ‘normal’ for the next six months. WOW! Six months? Although exciting, six months sounded like an awful long time period until the next appointment. It has flown by…we needed that break from reality.
May came and went. We truly settled in to life and really relaxed on the inside. Mother’s Day was an emotional day. I feel so fortunate I was able to celebrate this day. I am so grateful to have Evan in my arms growing and thriving.
June brought Father’s Day for Brian. Equally emotional for him on that day. Best of all, Evan turned ONE!!! For our family, this milestone was long awaited. Looking back 11 or so months, thinking of all we have gone thru…everything we were told in the beginning….Evan’s first birthday was a miracle day!! We celebrated with a big Rodeo. Our closest family and friends joined in on all the fun!
July was filled with friend’s birthday parties and a trip to June Lake. Also, Evan started to walk around this time. He loves to chase his dog, Stanley. He has all of his teeth already and weighs in at 32 lbs.!!! This boy is growing!!
August 16th marked the one year anniversary we were pulled into emergency surgery at CHOC. This too, was another emotional day for us. Evan has amazed all of us! Other than that, summer has come and gone so fast, keeping busy with lots of fun activities. Evan had swim lessons. He loves, loves the water! He splashes a ton and dunks his own head. We went to Disneyland quite a few times, a couple of zoos, and rode on a real Amtrak train!
September 6th was the one year anniversary of Evan’s open heart surgery at CHLA with Dr. Starnes. It’s amazing how he has progressed and grown since then!!!
Well that brings us to now, see how fast that ten months went? October is approaching! Now we are anticipating Evan’s cardiologist appointment at the beginning of the month. We are starting to feel that pit of anxiety in our stomach. This is when reality sets in deeply. We are expecting a routine EKG and ECCO. Also, at this time we will discuss Evan having another catheterization to get a more accurate view of what exactly is going on inside his body. They will measure his veins to see how they are growing. Obviously they are growing, but will they continue to grow with him, and at what rate? Will his veins always be too small for his body? If so, what happens then? These are just a few of the many, many terrifying questions we are anxious to have answered. If that’s even possible. They will also ‘balloon’ veins/arteries that need to be ‘stretched’ in order to increase additional blood flow in some key areas. If we go forth with the catheterization, we would expect it to be performed before the holidays. In addition, Evan has already received his flu shot for the upcoming season. He will also be receiving another round of the RSV shot once a month, until May.
Thank You for your continued thoughts and prayers. It truly gives Brian and I peace knowing there are so many people thinking and praying for our sweet Baby Evan.
We will update the website after his cardiologist appointment in October.
10/13/08
Evan had his cardiologist appointment with Dr.Lewis today.
They did an Ecco on Evan without any form of sedation. He was pretty squirmy... as you can imagine! He sat still enough to get a clear picture on a few key areas, but there were a few areas they were unable to see. Dr. Lewis felt he saw enough to know Evan's Ecco looks the same as it did six months ago....that's a good thing. That means there aren't any new obstructions, or any new turbulent areas.
Overall, Dr. Lewis is excited about Evan's progress and wants to do a catheterization before the Holidays..he suggested the beginning of December.
We will update as we learn more with scheduling for the catheterization.
Thank You for all of your thoughts and prayers.
11/11/08
Great News!!! Evan went in for his catheterization surgery at 7:30 this morning and was
done by 9am!! Dr. Badran is Evan's cath doctor at CHLA, she informed us that
Evan's veins are growing!!! This news is absolutely overwhelming for all of us!!
The surgery Dr. Starnes performed on Evan at nine weeks old has and will
continue to work! There are four different points of narrowing concern in Evan's body. One at
his aortic arche, one going into his left kidney, an additional one branching
off the aorta, and one more off the pulmonary valve. These four areas are not of
immediate concern, can be fixed at some point and will be monitored. A huge triumph for Evan... the veins in his lungs have grown!!!! When Evan
had his cath at 6 weeks old and his surgery at 9 weeks old, it confirmed the
severe narrowing of his veins in his lungs. These areas are impossible to fix if
they do not grow. Intervention by way of surgery or catheterization would not be
an option. Because Evan's veins in his lungs have grown and appear to be at a
healthy size, the surgery he had at nine weeks old worked!! Dr. Badron said his heart is pumping with a perfect amount of pressure, which
was a huge area of concern. We expected to see some interference from scar
tissue, but that was not the case, Also, there weren't any areas that needed any
ballooning done at this time. We are so relieved with these results. We do have more surgeries and issues
down the road, but right now, this cath gives us so much more hope and faith! THANK YOU!!!!! Evan is proof prayer works!!! Please continue to pray for Evan
and all the other sick children at CHOC and CHLA!