Busy Week Ahead

Well, it really seems like reality is setting in now!  The time is just flying by and next week is almost here....I can't believe it.   Everyone has been so sweet and helpful! From our neighbors, to everyone at school, to old friends, new friends, family and even people who we don't know!  I am just amazed at how many people have reached out to us and are praying for Evan's surgery to go smoothly!  THANK YOU! We are so grateful to have all of you in our lives!

We got all of the pre-surgery paperwork in the mail yesterday, and I guess I didn't realize just how busy next week will be!  My mom was a huge help today with helping me to get the house completely clean.  I think we cleaned areas of this house that haven't even been cleaned since we moved in!  (Did I REALLY just admit to that?!)  Hehe.  Anyway, it's pretty darn clean right now and I'm feeling good about it staying spic n span until we return home from the hospital!  No germs allowed.  haha. SO, now that I don't have to worry about cleaning the house, I can relax a little and work on planning for next week.  Here's the schedule:

Monday:  At the hospital all day for Pre-Op tests (Xrays, blood work, etc)

Tuesday:  Back to the hospital to see the Cardiologist

Wed:  Pretty free day, but we have to "check in" to the Sharing Place (where we're staying) by 3pm or we lose our reservation for the week.

Thurs:  Evan's 1st Birthday - And he gets his heart fixed!  What a special birthday gift!

This weekend is also going to be a pretty full weekend, and Obee will be working out of town most of it, so I'm expecting it to fly by!

Keep Em' Coming!

You have no idea how MUCH we are enjoying the heart beads that are being sent to Evan!  We have this special jar (made by gramma of course) to put them in for now, and are hoping to fill it up some more so we have a good string of prayers surrounding Evan when he is in the hospital.  If you want to send  Evan a "heart" shaped bead, we aren't picky at all!  It can be a simple plastic bead from your craft bin, or something that means more to you....we are happy just to be getting "fun" mail (instead of bills and ads, ick!)  If you know of others who want to send healthy wishes to Evan, or who might be praying for him, feel free to pass our info on too!  It makes me feel good to think even more people are praying for him to have a smooth surgery and recovery, than just our own friends and family.

Thank you so much to those of you who took the time to send us a bead already!  These are all SO SO special, and it's amazing how something so simplistic, can bring us so much joy.  ;) 

If you do send a bead, please put it in a ziplock bag, and if possible, have the post office hand stamp it.  I've been told that if the beads go through the machines for postmarking, the bead will pop right out of the envelope.  The address to send the beads is:

Evan Boungnasiri

PO BOX 1140

Loomis, CA 95650

We will be sure to keep everyone posted with photos as our bead jar grows!

Thank you!!!

Look at this Chubbers  :)

So what ELSE have we been up to? (other than this whole heart surgery thing?)

We actually do stay pretty busy here at the Boungnasiri house.  Some days busier than I would like!  Here's what else we have been up to....!

We went to an A's Game and had a blast!  Thank you Kubota Family for the tickets!

Pre-Game Cheering



We had the a little birthday celebration for the most awesome 8 yr old I know! 

 We did some paddling around Grampa's pond....

 And visited the Circus..... 

 We snuck in a few naps....but certainly not ENOUGH of them!

 We played with friends at home and at park...

 

 And just this Friday, the kids ran in their schools first ever Jog-A-Thon (which mommy helped put together)

 

 
 

We also played a LOT of soccer, but I've been having too much fun chattin' with the parents this season to get out there and get any good pictures yet!

And here it is....

The blanket I made Evan is finally finished!  I can't take all of the credit for it though!  Once I had the idea in my head, my mom helped me do all the things I hate so much...like cutting all those squares and stuff!  She also sewed the heart on the middle square for me.  Thanks mom!

Lying awake in bed the other night I came up with the idea to make him this little flannel rag quilt for him to take to the hospital with him.  I made one of these for Ellie when she was a baby, and she still loves it to this day!  (Poor Jordyn and Hayden never got one because honestly, I really hate cutting all those squares out!  Sewing isn't really my forte!)  Anyway...back to the blanket....  The heart in the middle symbolizes Evan and his special little heart.  I wanted the hand prints of his family members on the blanket too so when he is all wrapped up in the blanket, he can feel all of us loving and hugging him.  On the blanket we have Hayden, Ellie, Gramma across the top row.  Daddy and Mommy right next to the heart in the middle.  And Grampa, Jordyn, and cousin Haley across the bottom. 



Front of "rag" quilt

I know it looks a little funky with all of our big ol' hand prints on there, but that's how I like it!  The kids really feel good about it, and I think it's one more way of them feeling like they are "there" for him, even though they can't be there for the surgery.



Back of Quilt



I feel like people must think I'm "Obsessed" with Evan's upcoming surgery.  Really though, I probably AM.  It's just about all I can think about.  No matter how many times people tell me they know someone who had the same thing done, and it was JUST fine....I still can't help but think how horrible it's all going to be.  EVEN with everything happening perfectly as it should, it's still upsetting to me that it has to happen at ALL.   Making the blanket, collecting the beads, figuring out what I'm going to pack for our hospital stay....these are the things that are keeping me from going absolutely crazy, so I guess if it makes me seem obsessed,  oh well.   I do realize there are other things going on in the world, but right now this seems like the most important one to me.

Heart Shaped Beads

This afternoon, my friend Renee (who has also been down this road) posted this on my Facebook page:

Dear Mandy's Friends and everyone who knows Evan, Please pass this on to everyone who knows them!

♥ Send a heart shaped bead to Evan to show your support, love, positive thoughts and prayers for his open heart surgery ♥ ...

When my son had open heart surgery as a baby, friends from all over the world did something very special for us that, to this day, my family treasures. Each person who prayed for him (or sent a positive thought) send us a heart shaped bead in the mail.They were VERY precious to our family and encouragement flowed through the door daily bringing tears to my eyes as mason jar after mason jar of colorful beads began to fill up. My kids and I started stringing the heart beads on fishing line and after his surgery we hung and looped them all around his room at the hospital. It was very special to us and I encourage you all to do this for Mandy and the family as well!!

I have been trying to think of something special we can do for Evan while he is in the hospital.  I decided to make him a blanket (which I'll post pictures of once it's finished), but being able to string the heart beads together with our family to hang in his room would be SO wonderful!  I usually have a hard time asking for things/help, just because that's how I am.  This is one thing I can say we would all LOVE though, and any hearts you would like to send us to let us know that you are thinking of Evan would be so so appreciated!  How fun it will be to show him these when he is older too!

If you would like to send Evan a bead, email me for our home address (mandyboungnasiri@sbcglobal.net) or send it to the PO BOX address below:

EVAN BOUNGNASIRI

PO BOX 1140

LOOMIS, CA 95650

Thank you!!!!

And Thank You Renee, for sharing this with us!!!!  :)

The Tour

So I can now check "hospital tour" off of my list! We all went to the hospital this morning to meet with Sara, our child life specialist. She did a really great job explaining everything to the kids and letting them know exactly what was going to happen when Evan goes to the hospital. We got to see all of the different rooms we will wait, wait, and wait some more in before, during and after the surgery. We went to the PICU and saw one of the rooms Evan could be staying in. (I guess he will be in the PICU the entire week, instead of moving him around) At the end of our tour, we got to take the kids to the children's playroom, where they had any toy you can imagine, activities for the little ones, and a giant fish tank. The kids got to play with playdoh in there while we spoke more with Sara about what to expect the day of surgery, and that week. She said that the playroom has three supervised activities each day, so if we schedule family visits around one of those times, the kids can play in there while my parents come to visit Evan, etc. She was talking about having Hayden, Ellie, and Jordyn come visit on the second day, but honestly from pictures I've seen online, I still don't think he will be looking too great on day two, and think it better if we wait until day 3 or 4 before the kids see him.



The surgery will be about 4 hours, and we do not get to be there when they put him under general anethesia. I'm not too happy about that. He's gonna be so scared if he's all alone there with people in masks poking him. He won't understand why we aren't there to protect him, and there's no way for me to help him understand. Ugh! Even after he is done, it will be about 1 1/2 hours before we get to see him. While he still has the breathing tube in, we are only allowed to see him for 5 minutes every half hour. Personally I think this is a load of crap. No way am I leaving. If he's in his room, we will hide in the corner so we don't get in the way, but I really don't like that rule, and I'm not promising to follow it! So there. lol

On a happier note, we got a call from the surgeons office today saying that they approved us to stay at The Sharing Place the week of the surgery. The Sharing Place is like a mini hotel on the same grounds as the hospital. They have 18 rooms there with a kitchen per every four rooms, and shared living rooms, playground, etc for families that have kids in the hospital. We didn't think we would be approved because one of their requirements is that you have to live at least 50 miles away, but they approved us anyway! Yay! There was no way I was going to leave Evan for a three hour time period (which is the time it would probably take for me to come back home, do whatever I'm at home for, and drive back). This will be nice for us to take turns to go take a shower each day to keep food supplies and whatnot.

The one question that nobody seems to have an answer to: Can Evan be harmed by blood from the blood transfusion that comes from someone who has had peanuts? (He has the peanut allergy) Anyone know the answer? I'm scared to death that he is going to have an allergic reaction when they do the blood transfusion!

Here are the pics from the tour....

This is where we will be waiting for about 6 hours while he is in surgery

The Pediatric Intensive Care Hallway

Inside one of the rooms he could be staying in.

PICU Playroom

Jordyn tryin' on her new hospital gear!

Hospital Tour Tomorrow

There are SO many things that have to be done before Evan's surgery, and I feel like I'm drowning in all of it.  Besides all the normal stuff, like paying bills, taking care of the kids, chores, etc, there is paperwork, appointments, research that has to be done and I feel like if I miss just one thing, everything will fall to pieces.  Does that even make sense? 

I can't shake the idea out of my head that I want to have some nice professional photos taken of Evan with the family before the surgery.  People get angry with me when I say I want the pictures taken, "just in case" something goes terribly wrong, so I guess I'll make everyone happy and call them his 1yr pictures.  I'm trying to be positive, but I'm also the type of person that likes to think through every possible situation so I can deal with things better, even if they aren't happy thoughts.

On Friday, I spoke with a child life specialist at the hospital named Sara.  I wanted to set up a hospital tour for our family, so we have a better idea of what to expect.  I want the kids to be able to see where Evan will be, so they aren't at school the day of the surgery just wondering and imagining something worse happening.  Without scaring them, we really want them to be as involved as possible, as they love and worry about Evan just as much as we do.  Heck, Ellie practically thinks he's HER baby!  Our Child Life Specialist wanted to set the tour up for the same day that he will have all of his pre op work done (three days before surgery), but I told her I would prefer it sooner.  Plus, I didn't want to take the kids that day, because they will be doing xrays, blood work, and who knows what else on Evan that day.  I would prefer to focus on HIM that day, and not be chasing Jordyn down the halls of the hospital.  Also, I'm not really a patient person, and want the tour myself!  Needless to say, our hospital tour is set up for Tomorrow morning at 9am!  My mom said she wants to come too (which I'm grateful for) so now we just need to arrange the carseats so we all fit in the van somehow.  (Wish me luck on that one!)   I'm sure Hayden and Ellie's school will NOT be happy about the kids missing school for the morning, but ya know what....sometimes there are things that are more important.

I'll try to update tomorrow after our hospital tour!  Maybe I'll even take some pictures if they will let me.

I also just wanted to say THANK YOU to everyone who has taken the time to respond on facebook, call us, and just let us know that you're thinking about us.  I will admit, I'm not very religious, but it means SO much to know that others are also thinking of Evan and praying for him to be strong and for everything to go well.  I know that everyone has busy lives of their own, and it's comforting to know that we have help and support out there if we need it.  In just this short period of time, we have realized how many great people we have in our lives, and it's easier to see who your real friends are when you go through something like this.  The ones who take the time just to let you know they're thinking of you.  The ones who offer to help, even when you don't really have anything for them to do.  It's nice just to know they're there for you, ya know?

My Heart Baby

So, since the creation of Facebook, I have found myself updating my life through that instead of our blog. The only problem with Facebook, is that I like to put down everything that's in this head of mine, and not just a sentence or two. Yes, I'm one of "those" Facebookers who feels the need to write a novel as my status update, instead of the catchy little phrases that will hook people in to ask more.

I think this will be a better outlet for me to write about what's going on with us, Evan's health, and whatever else may cross my mind. Sometimes I feel like everyone else must think I'm a hypochondriac (which to some extent I will admit that I used to be) when it comes to Evan, or "Bubbas" as we like to call him around here. First, it was the never ending eczema on his face and body. Then, 6 months later, we finally realized he had the peanut and egg allergy that was causing the eczema. Once I eliminated any trace of these foods from my diet, he began to look like a whole new baby! The last two or three times that he has caught a cold, it turned into something bad real fast. Because of this, his pediatrician thought he might have asthma, but we were going to watch and see, watch and see...

On Labor day weekend, we took Evan to the after hours clinic to see Dr. Unis. He had been sick with a cold/flu thing for a week now, and had just had 103 fevers on the two previous nights. He was also getting his two top teeth and I knew this might be why he had the fever, but wanted to check just to make sure he didn't have an ear infection, or any fluid in his lungs, etc. Dr. Unis ordered up a chest Xray and along we went to have that done. Within an hour or so, she called us on my cell phone because she wanted to go over the Xray. They found something she wasn't expecting. Evan's heart was much larger than it should be and she wanted him to see a Cardiologist right away. The Cardiologist looked at the Xray and thought it could wait until Tuesday morning.

So, on Tuesday the 7th of September, off to the Cardiologist we went! They did an Echocardiogram on him (basically just an ultrasound of his heart). His Cardiologist, Dr. Manohar (Who I cannot say enough good things about), very carefully took the time to explain that Evan will need to have open heart surgery soon and why. Evan has an Atrial Septal Defect (ASD), basically a large hole in his heart. The type of ASD he has is called Sinus Venosus, for the location where it is at. It's located near the top of the atrium where the blood enters the heart from the body. He also has Partial Anomalous Pulmonary Venous Return (or PAPVR), which means that his pulmonary veins are directing blood flow to the wrong areas of the heart. His oxygenated blood is mixing with the unoxygenated blood and pooling at the bottom of his heart, thus enlarging it. This also causes a lot of excess blood flow to the lungs, which makes them a sponge for bacteria and other infections once he gets sick with a minor cold, etc.

The prognosis for Evan is good! The hard part for Obee and I is just making it through the surgery. Once we have made it through that, and his recovery, he should be just fine, thank goodness! It still doesn't make it any scarier for us though. I have had so many questions/thoughts racing through my mind over the last week since we first learned of this.

Today we met with Dr. Nasirouv, Evan's Pediatric Cardiotherasic Surgeon. We both really liked him, and he sat down and answered all of our questions. Evan loved him, and wanted to be in the Dr.'s lap the whole time! One comment the doctor made that really stuck with both of us was when he said he considers each child to be like his own when they are on that operating table. He asked if we wanted to do the surgery this Monday, and I about fell out of the chair! I am not mentally prepared (nor organized enough for the other kids) to do surgery this Monday!!! Finally, we agreed to do it on Evan's 1st birthday, October 7th 2010. What a birthday to remember! I am telling myself that this is a GOOD sign. What can go wrong on your birthday, right? Of course, deep down I'm scared like you cannot imagine....

Both doctors mentioned it would be good to keep the kids out of school, to be sure we don't bring any germs/illness into the house. I don't really think this is realistic, but we've talked about having the kids stay at my parents house instead during this time. If we do that, it will be like 3 weeks that they are there and that is just one more thing I'm stressed about. I don't want to be away from my other three "babies" for that long! On the other hand, I really cannot imagine having them here around Evan when he is healing. The girls are going to want to pick him up and hold him, and I'm not sure I will be able to convince Jordyn of why it is so important that they don't.

We should be in the hospital 5-7 days total. It doesn't seem like that long, it took us at least 40 minutes to get there today. I think I'm going to see if there is any room for us to stay at the Ronald McDonald house. I plan on being at the hospital the whole time, but this would give Obee and I the chance to switch off and go to a place close by to wash clothes, shower, make food, and maybe see our other kids. I think it will save us a lot of money on food if we can buy groceries and cook them somewhere instead of eating out all week. We certainly don't have any extra money to spare right now! So much to look in to and so little time! Agh.

The scariest part of all of this is the horrible thoughts that I cannot get out of my own head. Why do I have to be so crazy and always over think everything?!! I hate that they will saw open the chest wall of my baby boy. My sweet tiny little baby boy. They will break his sternum and then piece it back together to heal on it's own over the next six weeks. I hate that they have to STOP his heart to do this! The surgery will be about 4 hours and he will be on the bypass machine for at least 1 1/2 hours. That means my baby will have his heart stopped and a machine keeping him alive for over an hour. This may seem so normal and like no big deal to people who have already been through it, but to me...right now...it seems like the worst thing imaginable. I hate, hate, HATE, that he will not understand any of this, and will be in pain, in a big bed with wires coming out of him everywhere. This is an elective surgery. We don't HAVE to do it to save his life right now. It will GREATLY improve his quality of life, and his lifespan the sooner it is done, BUT..what if something were to go wrong. How could we ever forgive ourselves for making the decision to do it and not wait for some other day......Then again, when will I EVER think it's a good day to put him through this? Probably never.