Get Ready

Ok...it's time to dust off the old blog!  Strep test negative...game on for surgery next week.  This is not the way i would have planned to spend Christmas break with my kids, but I'm glad that we have cleared one more hurdle to get Ethan into the OR!  We go in for preop next Tuesday and if we are cleared will have Fontan on Wednesday.  Doesn't seem real yet...my brain is still buzzing.  Please keep him in your prayers.  We have started a facebook group called Prayers for Ethan.  I'll be updating there and here next week during and after surgery.

Fontan?

 Family picture.  L-R.  Mom, Nolan, Natalie, Elise, Craig, Daddy and Ethan

Ethan being cute on the fireplace.



So...we were supposed to have had this over with by now.  By now Ethan was supposed to be home, doing well, and life back to normal....or as normal as it gets around here.  but November 16th came and went with a wheezy cough and two lung transplants that bumped us from surgery.  Reschedule for Dec 15th is not going to happen due to c-diff.  C-diff that could have been avoided had big brother's school sanitized properly after an outbreak in November.  But that's a whole other story that I really don't want to get into.  Suffice it to say, the school has now been sanitized and I probably can't ever go back there. LOL  We have not been rescheduled for the third time for Dec. 21st.  I'm grateful that they can work us in but now I really don't have a clue if he'll be able to make it out of ICU for Christmas.  In the grand scheme of things I know it is a little thing.  But Christmas is a time for families to be together and celebrate...not for laying in the hospital or watching your child try to cope with  a pain level that I'll hopefully never have to deal with.  Fast forward to this morning.  We're back in the pediatrician's office because Ethan has a runny nose and a sore throat.  Rapid strep came back positive and we can't treat it because we don't know if it's live bacteria or dead.  If it's dead we would bump ourselves out of surgery if we treated it.  If it's live we will know when the culture comes back on Thursday.  We will have to treat it (of course) and we will have to be rescheduled for January.  As much as I don't want to be in the hospital for Christmas I DO NOT want to be rescheduled.  Ethan's 02 is trending lower and I don't want to have to give him oxygen at home so that he can make it to surgery without neurological deficits.  I just want it to be over.  The hardest part right now is not having people understand how frustrating it is to be constantly bumped and how angry you get at things that normally wouldn't bother you.  I'm trying to stay calm and level for my kids but some days it is an epic fail. 

Fontan news

Well...the dreaded word was finally uttered by a surgeon to us this week.  Fontan...sounds like something fun...like something you would get by lounging in the summertime...instead of the surgery I've been dreading and hoping for since the day Ethan was born.  Dreading it for obvious reasons...will he survive?  Will his little brain be protected during the surgery enough that he won't lose his beautiful personality and sweet smile.  And yet I have been looking forward to it only because if he has to have it it means that he is still alive!  We were given so little hope that Ethan would survive the first moments of his life that, to me, making it to the age where Fontan would be a possibility seems unreal!  We will hear next week a definitive date for his surgery.  We are shooting for the beginning of November.  The surgery will take all day.  Dr. Fraser will try to see if there is any way that he can make a four chamber heart for Ethan.  He is not hopeful of being able to do this.  We are praying that he will be able to!  It would mean that his life expectancy would surpass mine!  That is something that we have not dared to hope for!  If Ethan's heart will not be able to be made into a normal, four chambered one, then Dr. Fraser will proceed with the Fontan as planned.  The leaky common valve will also have to be addressed at this time.  This is going to be a long few months.  We are officially on germ lockdown...meaning Ethan doesn't go anywhere...until after surgery/recovery.  We are also extremely picky about who can come visit.  My older kiddos will have to use hand sanitizer as they get in the car from school, strip school clothes when they come home...and we are going to have to turn into clean freaks!  Elise is coming down with a cold so she is staying away from her little brother.  Ethan also has some congestion that we are aggressively fighting.  His lungs must be clear in the 6 weeks leading up to surgery or we will get bumped back to in the middle of the holidays.  I do not want to have him in the hospital over Christmas. 

catching up...

Well...dental restorations went well..filled 3 cavities and put on one cap.  Ethan did great and was a champ...like always.  On May 26 Ethan had another heart cath.  Dr. Ing was able to balloon his existing stent to 10mm which is fabulous!  Ethan's o2 continues to be in the upper 70's so that is landing us deep in the heart of Fontan-ville.  September 12 is his next heart check up in Houston.  Full workup including echo that morning...then we're off to a surgery consult with Dr. Fraser that afternoon.  HOpefully we will have a surgery date when we leave the hospital.  I am ready to have this over with.  But I don't want it to come too soon because heart surgery always carries the risk that when you hand your baby to the anasthesiologist it will be the last time you see him. 

Ethan's third birthday was a success and I'm sorry I don't have any pictures uploaded!  We reserved a pavillion at the splash pad at one of the local parks and invited Ethan's friends from church that he doesn't get to know too well because he is on germ lockdown so much.  We were very grateful to have all of them with us that day to celebrate another year of Ethan's life.

Right now we are just trying to keep Ethan healthy.  We know that he will get bumped for surgery if he has any kind of respiratory issues within 6 weeks of surgery.  They want his lungs nice and clear and the pressures low so they can get him off the vent as soon as surgery is over. 

On a non-Ethan note, we are closing on a house this week.  It has been a long time coming and I can't tell you how many prayers are being answered right now.  We put a new house on hold four years ago so we could handle Ethan's medical care.  We are a family of 7 living in 917 square feet, with one bathroom...and most importantly, no dishwasher...the new house is  2400 square feet, 4 bedrooms, 3 baths, a dishwasher..and miraculously in our budget!  I am so grateful for this blessing.  As always keep us in your prayers.  We need a healthy Ethan this Fall and Winter...

Dental Restorations

Well, today I am getting packed for an overnighter in Houston.  I so wish it was for something fun!  We have to report to day surgery tomorrow at 6 am for Ethan's IV sedation for his dental restorations.  They are either going to cap or pull his molar that is causing him so many issues.  This is the last roadblock before the cath lab.  We are tentatively scheduled for May 31 but it is possible that they will move him up depending on how tomorrow goes and availability. 

I usually try to stay very positive and upbeat on the blog...but I just don't want to do this.  I don't want to have to go tomorrow...I don't want to take him to the cath lab...and mostly I don't want to have a surgeon cut him open later this year!!!  I am trying (and mostly failing) to keep my emotions in check. 

For today I am doing laundry and getting ready to go.  Pandora radio is saving me.  Be still my soul just came on and it helps.  I just want a calm life.  But if it were not hard, would I know the calm when it came.  Please keep Ethan in your prayers tomorrow.  He has always done really well with sedation and I would really like for that trend to continue!

Getting ready...

Since the last time I have posted we have had many many many check ups,  several scares that included midnight drives to Houston, and tons of prayer.  All of the check ups have led to one thing.  Another heart cath.  Ethan's o2 numbers are sticking around 77.  He is constantly huffing and puffing to catch his breath when he is up walking/running around.  He's scaring me to death but he's always done that!  Day after tomorrow we go for a dental check up.  As soon as he is dentally cleared, we call his heart team to see if they can get him into the cath lab before May 31, which is when he is currently scheduled.  The F word (Fontan, but I got you thinkin didn't I) will happen sometime in the next 6 months depending on the results of the cath.  His one heart valve is very very leaky and it's keeping him from being able to keep up like he was.  BUT...he has learned to hit a ball off of the t and can play catch with his daddy.  For these two things we are especially grateful.  Tomorrow is the first Sunday of the month.  In our church, we fast on the first Sunday for something that we are in need of, or to give thanks, or for another reason as determined individually.  As always, Ethan will be the center of ours.  He is an amazing little person and we pray that he continues to thrive.

Summer in Review

Now that I've had a couple of weeks to come down off of the summer I have decided not to give you the normal "sorry I haven't written in a while" mess and just come on out with it's been too busy to keep up! ;) As you can see from the picture, Ethan adores his little sister. The first picture is his first time to meet and hold her when she was just two hours old. The second was taken outside of our church on August 1st on her blessing day.

June was a whirlwind of Zoo camp, new dance class schedules, two birthdays, a trip to Austin for Nolan's specialists, etc that ended with a trip to Schlitterbahn Galveston for some fun in the sun (or as much fun as you can have in a double floaty two weeks before having a baby with an almost two year old freaking out because the waves are too high in the wave pool). It was actually really fun! The last thing in June was a check up with Ethan's cardiologist. He's doing really well but he's getting winded when he is playing a lot faster. And his 02 numbers are starting to trend down. When he first had his glenn he was 85...now he usually is around 78-81. When his numbers are consistently below 75 his Fontan will be scheduled. With his current rate of decline we will be looking at surgery sometime int he next 18 months. This is where you tell me to breath and that it will be ok...I'm really scared about his Fontan...

July was the most fun I think. The 4th was spent with family and ended with watching fireworks over the pond behind the zoo. Then it seems like no time passed until the 13th when sweet baby Natalie arrived by c-section. She is a doll. Ethan has been so good with her. He always wants her to have her suckie (pacifier) even when she doesn't want it. Some good friends came and gave me a huge helping break for the first week home as Richard had to work that week because almost all of his vacation days were spent on Ethan's procedures earlier in the Spring. Sadly, that's all I can remember of July because recovering from a section with 5 kids and no sleep leaves your memory very fuzzy. Suffice it to say that July was good.

August was a whirlwind of school clothes shopping and school supply shopping and meet the teachers (all three campuses in two hours...why they scheduled them all at one time is beyond me!). Everyone has adjusted to the routine of school fairly well even if the application of school rules is a little beyond a couple of them...

Ethan doesn't go back for another check up until November. His numbers have been above 80 for the most part int he last week so I'm going to keep my fingers crossed that he will continue to be unripe for surgery. I'm not ready for it. He just gets so tired so fast. And it is taking him longer to recover his breath. When he gets tired it can take days for him to adjust. School starting hit him pretty hard. He enjoys being a semi-only child for a few hours each day, but getting up earlier, even though he's going to bed earlier, is making him more and more tired. In a way I wish his appointment was tomorrow so I would have some answers, but all in all I only want to hear about good news right now.