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.

Cath follow up

Finally had Ethan's cath follow-up with his surgeon yesterday. We got chest x-rays, echocardiogram and EKG...all came out fine. He has good flow over his stint and his saturations are level. He's now staying between 78-82...just going to be his new baseline...it's dropping slightly by a few numbers from where he was after his Glenn surgery, but that is to be expected as he grows. Those saturation numbers will let us know when his body is ready for his Fontan surgery. We will have to go back every so often as Ethan grows to open his stint further and have that artery grow with him...it just doesn't do it on it's own! So, we're going to become very familiar with Cath procedures and Dr. Ing over the next few years and for the rest of Ethan's life...

We'll meet with Dr. Altman, Ethan's cardiologist, on June 25th and repeat every procedure that we had yesterday to make sure that everything is still going well. We're going to have to baby his heart until the next surgery...basically keep a very close eye on his saturations and activity level. I'm very grateful that his next visit is at the end of June because Ethan's little sister is scheduled to arrive by c-section on either July 13th, or July 20th depending on her growth.

As always, thank you for your support and prayers on this and every step of Ethan's journey!

MRI/Cath update

It's been too long since I updated. Things have been busy getting back into the home schedule and getting my older kiddo's nerves calmed down after the MRI, emergency hospital admission, and Cath. Everyone is settling down and things are running as smoothly as you would expect with the stress level. Ethan got to come home the day after his cath but through a comedy of errors (that's the nice way of putting it) we weren't able to get him into echocardiography. So he went home without one. His second x-ray came in beautifully and he is doing well. We did find out when we talked with his cath surgeon that it wasn't just his pulmonary artery that is undersized. HIs whole right lung and all the arteries leading to it are very undersized. This means we have a brand new diagnosis of hypoplastic right lung to add to his already two line long heart diagnosis. This explains why his 02 desaturates with exertion. Now that he has his stent he is slowly getting faster about pinking up for us when he sits down. In the past few days he has started to sit down when he is gasping instead of just keeping on. He's learning his limits. Which makes me happy and sad at the same time. No 19 month old should have to limit his activity. We'll just have to keep a close eye on him like we have done since the day he was born to watch for even small changes in his saturations or his activity. There is really nothing else they can do other than hope that the stint will encourage that lung to grow more now that it has better blood flow. We're now one step closer to his Fontan surgery, but have also staved it off because of the bandaid that we just got in the cath lab. I'm so grateful that he hasn't had to have his Fontan early as his chance of survival at this point is just flat scary. I am also very grateful for the prayers and well wishes that I have received through my internet connections. I couldn't do this without my Heavely Father and you!

Done!!!

It got too busy to update last night so I'll do my best to remember everything this morning! The artery ballooned open beautifully...and then it went right back to how small it was before...so Ethan has a brand new stint in the right pulmonary artery. I even have before and after pictures that I will have to post when i can scan them in at home. He came out of anaesthesia really well...minimal fussing and very thirsty. He's swollen because of the IV fluids they pumped him full of and his kidneys are releasing the fluid with a single dose of lasix. We held him in the recovery bay for two hours and then got moved downstairs to our home away from home, 15th floor of West Tower. His pressure bandage was removed a little after one this morning and he finally slept soundly at 4. they came in a little while ago for another chest x-ray and we are waiting for those results now. He will have an echo cardiogram and be started back on his aspirin (which is his only heart medication currently) before we are discharged later today. Hopefully I will be able to update a little later after we know more. For right now we are grateful that yesterday is over and that he is doing so well. Thanks for all the prayers and well wishes you guys!!!

Balloon time!

Got the update call a few minutes ago..They are now attempting to balloon his pulmonary artery...we are hoping that the artery responds and doesnt' shrink back too small after the balloon is removed. If it shrinks too much they will place a stint. We are starting hour 4 for surgery now...but should have another update within the hour...

Heart Cath...Finally!!!

We arrived at the hospital this morning at around 8. We left Lufkin at 5. We were back, checked in and in the holding bay for Ethan's heart cath at 9. He was supposed to have his cath around 10. They finally took him to the back for his cath at 3:15 this afternoon. That was a long long wait. He was so good waiting! He played with toys and didn't complain once even though I know he was starving. He hasn't eaten anything since 8:00 last night! At 5:10 we got the update that he has a cath in the femoral artery in one leg, a sheath in the femoral vein in the same leg, and a cath in his coratid (spelling) artery in his neck so they have access to all areas of his heart...I'm thinking they had to come at it from both angles because of his PA band but I will confirm this. Thank you for your prayers for Ethan! Please continue them! And also please add the little girl that was case' # this morning. They had to do twice as much in her cath as they had planned and she is back in CVICU....not a fun place to be. More to come soon...

Cath on Tuesday

Well..Ethan desatted down to the low seventies on the 26th so we were admitted for observation overnight. This also sped up our next step...which is thank goodness a cath instead of open heart...to next Tuesday. They will balloon and/or stent open his pulmonary artery. They will also take care of any little connections that his body has made to try to get to normal...which Ethan's heart will never be...more updates when I know more...Should be getting a call in the next 24 hours for specifics on the time and prodcedure for getting to the hospital...

MRI results

We got the MRI results back yesterday. Not so good news. Ethan doesn't have the scar tissue obstructing his right branching pulmonary artery. The artery itself is narrowed for a length causing about 10% of the blood flow to go to his right lung and 90% to his left instead of a 50/50 mix that is normal. this issue will have to be addressed in the next few months and I am terrified. His inferior vena cava and liver veins are undersized and we were told at his first surgery that he would need to be 4 or 5 years old before they would be able to successfully complete a fontan surgery. If there is nothing that the cath lab can do to bur Ethan some more time then that fontan will have to be moved up considerably making it's chance of success go down dramatically. Please continue your personal prayers for Ethan as well as calling any prayer groups that you may belong to. If you are LDS, please place his name on your local temple prayer roll. I've seen miracles. I would like another one.

MRI schedule

Well...I am a little disappointed. The MRI isn't until February 18th...three weeks from tomorrow!!! I'm ready for it to be over and done and am very frustrated!!! BUT! I'm trying to remember that it's not my timeline that matters. If there is a cancellation between now and then that we get enough notice on we will do it. It is highly unlikely due to the fact that we live almost three hours away and he has to stop solids/milk at midnight and clear liquids at least two hours before the preliminary check in...which is usually 1 1/2 hours before the MRI. So...on February 18th, we stop solidsand milk at midnight, clears at 8:30, check in at 10:30, MRI at noon and hopefully get some much needed answers and get to come home that evening...

Sedated Echo

Well...it's over...the echo at least. We drove to Houston yesterday with a starving Ethan for his echo. He did really well with the sedation this time so we are relieved at that point. The type of Echo his cardio wanted required an IV that we tried for but were never able to get. His PA band is open but has low pressure going through it so there is an obstruction farther "down the line" as Dr. Altman puts it. The major suspect is his pulmonary artery that goes to his right lung. If you have been keeping up with Ethan you know that his first surgery required the surgeon to disconnect the pulmonary artery from his right lung, untangle it and his common pulmonary vein, and then reconnect the lung to the artery. The suspected diagnosis at this point is scar tissue buildup that is lowering the amount of flow to his right lung. Which would cause his symptoms of short breath during activity and being generally a darker blue than his normal is. Our next step is an MRI as soon as they can schedule it. If the MRI confirms scar tissue in the pulmonary artery, we will be sent to the cath lab to have that artery ballooned open at the scar. As scared as I am for this, I'll take it over open heart surgery any day. Please continue to keep us in your prayers as the stress is taking it's toll on everyone. Ethan did really well yesterday and we know that he will continue to amaze us all!

Waiting

First and foremost I would like to say that we have had some wonderful news with little bean...the nuchal cord was nice and thin and things look perfect with him/her (we're still thinking her btw...).

Now on to Ethan. We arrived for his echo and waiting for a few minutes and were taken back. He hated every minute of it. The tech was a newbie and couldn't get good shots of his pulmonary vein return or his Glenn, so he called in his supervisor. He couldn't get a good shot either because by that time Ethan had had enough. We got him calmed back down and went across the hall to cardiology to see Dr. Altman. Mom took him for his x-ray because I can't while pregnant...his lungs look fabulous. His echo was pointless because the stuff we monitor was thrown out because Ethan was upset and wiggly. Ethan has been panting while active and sweaty after light activity, so that concerns his cardiologist and me. It would seem that his PA band may be too tight and messing with his lungs. So we are back to Houston on Jan 26th for a sedated echo to check his band (regulates blood flow to his lungs) and his vein return. If something is going on with either of these we will most likely end up in the cath lab the next day. We once again need your prayers for our sweet boy. We don't want to go to the cath lab!!! They also did a blood count and think that even though his red blood count is adequate, the cells are large so we need some iron supplementation. Also, a part of his white count was up (can't remember the technical name) that may indicate an allergy. So our instructions for the next two weeks:

1. Keep a daily journal of his 02 sats (twice daily and after activity if panting)
2. Iron supplement to see if that will help his body carry oxygen more efficiently
3. Get to an allergist for testing to see if he has an allergy that would cause him slight breathing distress.
4. Not freak out

1-3 are under control...
4 comes and goes...

We are putting our faith in our Father in Heaven. We have been through this and Know that He has everything under control. Ethan is going to be on this Earth exactly as long as he is supposed to...

Testing Moved

Tesing has been moved to January 11th in Houston with Dr. Kirshon. Feels a little repetitive going to him again but we hope that he will give us good news this time! Ethan continues to thrive and other than being sick for most of Christmas break he is well! He is turning a little bluer around the mouth than I'd like when he is up walking around and it takes him a little longer to get over it so I'll be bringing that up when he has his Echo and Cardiology appointment on, you guessed it, January 11th. We have a full day of appointments...Kirshon at 10, Echo at 12:15, Chest x-rays, ekg and Dr. Altman at 1:30. Craziness!!!

Other news that is blogworthy is Nolan. He went to see a team of DAN (Defeat Autism Now) Dr's in Austin and is improving daily. His speech has blossomed, his social skills are coming closer to a two year old instead of a one year old (he's 3 1/2), and his personality is blooming! All with taking Gluten out of his diet. He showed an intolerance for wheat in his allergy testing last year so I'm hoping that this is the kingpin to getting his little body figured out. He has started a multivitamin from DAN, and will add calcium/magnesium, fish oil, and vitamin c supplements over then next few weeks.

Good News!

Ethan continues to do well and is walking and talking better everyday! If you didn't know that he had heart issues you would think he was a normal kiddo! Which is the best news this momma could hear! We got a little surprise a few days ago that still has us reeling. Ethan is going to be a big brother! We are excited, nervous...any emotion you can feel I have felt it in the last week. We are having nuchal cord translucency testing done on the 28th. It is an early indicator for Down's syndrome and Trisomy 18. If the nuchal cord is thicker than normal at 11 weeks gestation and the amnio comes back chromosomally normal, it will greatly up our chance of having another heart baby. We are again nervous about our last little addition (and yes, this is our last) and would appreciate your prayers on our behalf.

Quick update

yes I know I'm a slacker.. It's been months!!! His cardio visit in September was amazing. He did well with his Echo and x-ray. No problems. He had a late night ER visit in September that turned out to be nothing but a cold. No problems since then. He is WALKING! It is so cute! He has this little Frankenstein waddle going on that just turns you to butter. He is also expanding his vocabulary to include da da and nuh nuh ( another) when he wants a cracker. He also says kah kah for cracker. I'm sure he's a genious!!! We don't go back to cardiology until January. We are so pleased that he can go so long between appointments!