Big Chance for Little Hearts

Ethan's 1st trip to a restraunt

2008-12-11T21:32:00.000-08:00

As everyone knows we are not able to get Ethan out much right now. He can't be around big crowds and really has to stay clear of other children. We debated for a long time about taking him with us to eat for my Birthday last Saturday at the Cypress Inn. We wouldn't be around anyone but the waiter and the place was not going to be crowded so we decided to let him venture out with us. Usually Ethan only gets to go to his doctor appointments and occasionally to some family's houses. This was quit a treat for him and us. He did so good. He just watched us as we ate and played with his books. I loved having him there more than anything. I get so depressed when we have to go places with out him because it always feels like a part of us is missing so it felt so great to have all of us together away from home. We had a great time and can't wait to start letting him go with us to other places, other than the doctor's office, real soon.

Good Reports

2008-12-11T21:11:00.000-08:00

Ethan is doing great. We went for his 4 month check up last week and everything is great. He started him on some solid foods so Ethan is eating some yellow vegetables and is loving it. Ethan also had an appointment with the cardiologist and he said that everything was working well and is trying to slowly get him off some of the medications he is currently taking. We go back to the cardiologist next month and if all is well we should be able to space some of his check ups out further like every 3 months instead of every 3-4 weeks. That's great news!!!
Next week we will have to get 4 month shots since we are a month behind and also he will have to have his 3rd RSV shot so that we can possibly bring him to church December 21 and get him out Christmas if all goes well. Next week will be hard on Ethan and us but in the long run it will benefit all of us. I'm so excited that we are getting closer to being able to get him out. He is really developing a personality and is so fun to be around. I hope that we can spread some of that joy to others just by having him around. He is eating so well and has lots of fun doing it. I'm usually a mess by time he is finished with his vegetables but it is worth it. I had to put some pictures on here of him trying to feed himself. Apparently I don't feed him fast enough so he has to take over. It is so adorable!!

Eating is so much fun!!

2008-12-11T20:52:00.000-08:00

Our Family is thankful for.....

2008-12-01T18:27:00.000-08:00

This has been by far a very tough year for all of us which makes this Thanksgiving all the more special. We are so thankful for our Heavenly Father and all that He has done for us in the past, for what He is doing now and what we know He will do for us in the future. It is so awesome to know who holds tomorrow even though we don't always know what tomorrow may hold. We are so thankful for Ethan and his wonderful recovery and his will to live. He has been such a blessing to us and has brought many people together in prayer. We are so thankful for our friends , family and all the churches that have supported us and kept Ethan lifted up in prayer during these difficult days. All of you have been an inspiration to us and it has helped us to keep our heads up when sometimes we felt like putting them down. We have so much to be thankful for and will celebrate that not only on this holiday but everyday of our lives.

Hmmmm!!! I can have the whole turkey leg????

2008-12-01T18:25:00.001-08:00

Ethan's 1st Thanksgiving

2008-12-01T18:18:00.000-08:00

Yummmm!!!

Eating good at Aunt Karen's house!!!

Ethan's 1st Hair Cut

2008-11-21T19:44:00.001-08:00

Yes, it is true, Ethan had his 1st hair cut today.He did great but got a little fussy towards the end. Great Aunt April did an excellent job and he looks sporty in his new look. I just coudn't stand the rat tail in the back and wings on the side look any more. Santa is coming to take pictures with Ethan real soon and I didn't want him to look like Elvis in all his pictures. Don't worry , as you can plainly see in the pictures, we just got it trimmed and he still has almost all his hair. I couldn't let her cut too much cause his hair is just so cute!!!!

Ethans's 1st Hair Cut (4 months old)

2008-11-21T19:11:00.000-08:00

THERE'S NO PLACE LIKE HOME

2008-11-19T16:00:00.000-08:00

Recovering @ Home

2008-11-19T15:51:00.000-08:00

Hello All,
Things have been crazy ever since we got back home and my time has been very limited so I have not had a chance to blog. I hope that everyone is doing well. We are doing great here. Ethan is really getting back in to his routine and seems like he is back to his old self again. We had his first check up on Friday with the cardiologist and he was very pleased with everything. He even mentioned that by his next check up he should be able to take him off some of the medications he is currently on.That would be great because he is on a BUNCH and it is round the clock.
Anyway, I just wanted to update everyone on Ethan's progress and I put some new pics of him on the blog. I can't wait to get him out so everyone can see him in person. Please continue to pray that he will continue to get better and we can get back to what ever normal is or close to it at least.

Getting Ready to leave Le Bonheur Wednesday

2008-11-13T07:49:00.000-08:00

Finally Home!!

2008-11-12T19:52:00.000-08:00

It is late but we finally made it home !!!! Ethan had a great night and Doctor Knott-Craig released us this morning but we had to wait on some papers and all of Ethan's medications to be filled before we could leave so it was after 3:00 before we got on the road.We are exhausted but so glad to be here. Ethan is so excited too and I will put some pictures on the blog tomorrow but I really just want to get in bed right now and get some much needed shut eye. Matt and I are so appreciative of EVERYTHING and all the PRAYERS that were sent up on our family's behalf. We are truly greatful. We must remember that God is so awesome and he has really blessed us and our family. Ethan is such a blessing to us and we can't wait to share him with all of you.
We love you all and are so glad that you have shared in this extremely difficult time with us.

Recovery Day #7

2008-11-11T16:39:00.000-08:00

So we are still here. Ethan ended up being admitted back into the CVCICU last night so I haven't had a chance to update the blog all day. I think we finally have him settled and we are now back in the step-down unit.He is having some withdrawals from the pain medications so they have started him on something to help and it seems like it has. They also removed some annoying pace lines and an IV in his hand so he seems more comfortable. We are all so tired and just ready to come home. I'm getting sick and trying to fight that off but with little to no sleep it is nearly impossible. We have had all the x-rays, examinations and echos that we could possibly have so hopefully Ethan will do good through the night and we can head home sometime tomorrow. Just keep praying and we'll see ya soon.

Recovery Day #6

2008-11-10T14:23:00.000-08:00

Well, I wish I could tell everyone that we were headed home and everything is great but we're not and things seem to be moving backwards. Ethan is still fine but he is back on oxygen and he is still having these horrible screaming fits like he is really hurting somewhere. No one seems to know what's going on. They took x-rays of his stomach and said he has alot of gas built up and it may be really bad gas pains but the gas drops and other things they are treating it with doesn't seem to be helping. Doctor Knott-Craig seems to think he is stressed out so they are going to start him on something for that soon but his heart rate is sorta low when he is sleeping and I'm afraid it will drop it even more. I wish he could talk so he could tell us what is wrong but we are having to play the ruling out game. They said his heart is great, lungs are great and bowel sounds are great so we are hoping something will be figured out soon so we can come home. Looks like another day or so depending on how he does. Please pray that all will be great and Ethan will be back to his old self soon.

What did mommy do to my hair?????

2008-11-09T11:11:00.000-08:00

I love my daddy!!!

2008-11-09T10:56:00.000-08:00

Recovery Day# 5

2008-11-09T10:32:00.000-08:00

WE ARE IN THE STEP-DOWN ROOM!!!!!!

It was late last night but we finally got moved. Ethan is doing great! The night wasn't that great because it took Ethan forever to get settled in his new room and nurses were in and out all night long so we are exhausted. Also, Ethan really wants to be held and it is so hard with all the wires and oxygen but I have gotten him out several times this morning.He has these spurts of high pitch screams that usually last for a few minutes. It is so horrible to see your baby scream like that and know that they are hurting but you can't do anything about it.They are giving him Tylenol but it is only when asked for and we are trying to wean him off the strong pain medications before we head home. We dealt with this some the first time but it seems worse now because he is so active and never stops moving. For the most part we are great and ready to get home. The doctor should be in sometime this afternoon to go over plans for getting everything unhooked and getting out of here. We are hopeful that it will be Monday but it could roll into Tuesday. Either way Ethan is doing good and we should be home real soon!!!

2008-11-08T08:57:00.000-08:00

Recovery Day #4

2008-11-08T08:44:00.000-08:00

Wow!!! It is so amazing what can change in 4 days. Ethan is doing fantastic!!! He has been jabbering and smiling at all the nurses. They may not let us leave cause they just eat him up. Doctor Knott-Craig came by this morning and said we would be moving to a room today and should be headed South by Monday sometime. I wish ya'll could be here .He will not stop jabbering, it's almost like he has been so quiet for so long that it is built up inside of him. It is so precious. How fast they forgive and forget. The nurses are so glad to see him smiling and jabbering since they feel so bad when thet have to poke at him all the time. I will keep thr blog updated once we get him settled into a room but if anything changes I will let everyone know.
Oh, thanks for the prayers about his oxygen level. Now his alarms go off because they are so high. God is so good!!!!!

GETTING BETTER EVERY DAY!!!!!

2008-11-07T16:43:00.000-08:00

Recovery Day #3 Evening Update

2008-11-07T16:32:00.000-08:00

Sorry again! Ethan is very awake now so I have been with him all day and just now have gotten a chance to blog. He is doing fantastic!!! The chest tubes are out and he is only on a little oxygen but only because Doctor Knott-Craig wants him to be. They took him off earlier and he did great so it will be no problem once he is completely off of it. Tomorrow should be a great day. Should everything continue to go as well as they have been then we will move to the step-down unit tomorrow sometime. This should put us getting home the first of next week. That's if everything goes good which we continue to pray that it will. I have been able to hold him and feed him for most of the day and he is starting to talk(jabber) to us so that means he is getting back to his old self. Great!!!!!
We will try to update the blog in the morning but if he is up and about it may be late since we will be taking care of him.
Please continue to pray that all will stay well and we will be headed South real soon. Thanks for all the comments throughout this blog and for all the prayers that have been sent up and certainly heard.

Bright Eyes!!!!!!

2008-11-07T07:53:00.000-08:00

RECOVERY DAY#3

2008-11-07T07:17:00.000-08:00

2008-11-07T07:05:00.000-08:00

Good Morning,
Sorry it has taken so long to get an update on here this morning. There were some bumps in the road last night and we had to wait and speak with all the doctors this morning. OK , so they took him off his pain medication and relaxing medication last night and started giving him something for pain by mouth only. Yes, this is a good thing that they are getting him off stuff but his heart rate did some crazy things and they had to put him on a pace maker for a very short period of time. The nurse freaked us out this morning when we got here because she acted like this was a serious problem and the doctors would address it with us. That was not the case. After the doctors came in , including Doctor Knott-Craig, we were told that Ethan is great and that it is totally normal for them to have little hiccups like that. Ethan's heart rate is and has always been great so you can only imagine our shock plus we called early this morning to check on him and the nurse with him last night said he was great and didn't mention any problems. Anyway, things are good now and he is eating like a champ. I got to feed him this morning so that is another reason it has taken so long to get this update. He is resting right now and they are winging him off the oxygen slowly. Chest tubes will be coming out today!!! That is great!!! Doctor Knott-Craig wants me to be able to hold Ethan by lunch or a little after. We are so excited. Usually Doctor Knott-Craig will come in after he finishes up with surgery so it could be later on this afternoon but sometime today I will get to hold him. We just keep praying that all will stay well and either late this evening or tomorrow sometime we will be moved out of the CICU and into the step-down unit. Just pray and I know you all with. Thanks for everything. All of you will never understand just how much we appreciate EVERYTHING you do. Thank you!

Please forgive me for any errors. .I try to proof read everything before posting but I'm staying in Ethan's room right now so docs and nurses are in and out all the time. Plus Haley , you're not here and I miss you!!!!

UPDATE ON RECOVERY DAY#2

2008-11-06T16:57:00.000-08:00

Today has been good. Not much has happened though. They are going to start winging him off the oxygen tonight and hopefully by in the morning he will be completely off. Doctor Knott-Craig has been by several times today and said the baby is FANTASTIC. We are very pleased with that. He seems to think that tomorrow we will have everything off and Ethan will be moved to a room back on 7 West which is the step before home. Home!!!! We surely do not want to rush things but I love the thought of getting home somtime next week. We are staying here at the hospital until after shift change so we can see who Ethan will be spending the night with. Thanks for all the prayers!! His oxygen levels have been good today and have increased from yesterday. We"ll see what they change to in the morning when all the oxygen is taken off.

RECOVERY DAY #2

2008-11-06T05:56:00.001-08:00

2008-11-06T05:45:00.000-08:00

Good Morning,
We just went back to check on Ethan a little while ago and he is doing fantastic today. He had a great night and Doctor Knott-Craig likes the way he looks. Ethan is wide awake this morning which was a BIG surprise to us since he has been out for the past 2 days. Anyway, he really wanted us to pick him up which was really hard on us but we have to let the docs do their job and soon enough we will have him in our arms again. When we were leaving the room they were feeding him some pedialyte through a bottle and he was sucking it down. The plans today are to let him rest some more, start winging him off the oxygen again, and remove the central line that is currently in his neck. We will pray that everything goes well and by this evening he should be closer to being just a normal baby with less tubes and such. Since he is awake we will try not to bother him with taking pics right now due to him getting worked up and upset but as soon as we feel like he will be alright we will get some new ones on here. I will update the blog as things are taken off and or if anything changes.

BEING OFF THE VENT

2008-11-05T16:41:00.000-08:00

Well, we have been on pins and needles for a little while. We just spoke to Doctor Knott-Craig and he is not at all concerned with the oxygen levels being low. He has given us strict instructions to go to the hotel and rest. He was so sweet to Ethan when he went back to check on him. He adjusted his bed and rearranged his head just to make him more comfortable. He even instructed the nurse that she was speaking too loud around him and made her quiet her voice. The lights were dimmed and he told the nurses to "LEAVE THE BABY ALONE AND LET HIM REST". The nurses here are not quit familiar with how particular Doctor Knott-Craig is about his babies so he has to remind them. Have I mentioned lately that we love Doctor Knott-Craig?????
Anyway, we are going to get a bite to eat and take the Docs advice and get some rest. We will be back first thing Thursday morning. Doctor Knott-Craig assured us that he would notify us if anything needed to be addressed with Ethan's status.
I know I say this all the time but Thank you , Thanks you , Thank you for everyones thoughts and prayers. We read the comments on this blog constantly and they are so appreciated. God is so good and has blessed us so much.

2008-11-05T14:54:00.000-08:00

Ethan is off the vent! He is doing good but his oxygen levels are lower than they like so they have started giving him some oxygen through the nose. Please, Please pray that they begin to rise. They may have to put the vent back in if they don't. Doctor Knott-Craig has been paiged and is supposed to address the problem shortly so we will update the blog hopefully soon.

RANDOM PICS

2008-11-05T12:25:00.000-08:00

2008-11-05T12:24:00.000-08:00

2008-11-05T12:23:00.000-08:00

2008-11-05T12:09:00.000-08:00

DAY #1 ROAD TO RECOVERY

2008-11-05T05:47:00.000-08:00

Good Morning,
Matt and I stayed at the hotel last night to try and get some rest. It was really hard to leave Ethan here last night but we knew that if we stayed we really wouldn't get any rest with all the beeping and alarms that go off . Ethan is doing great this morning and had a great night. Actually he is moving around so much that he kicked his IV out. They have decreased the amount of oxygen he is getting and he is tolerating it great so they should start removing tubes by lunch today. Doctor Knott-Craig said that Ethan is doing as well as he can be doing which is great news. As soon as we know for sure if and when they start taking out tubes we will update the blog with information and new pics.
PLEASE KEEP PRAYING THAT HIS BODY WILL ACCEPT EVERYTHING AND BE WORKING BY ITSELF SOON. THANKS FOR EVERYTHING!!!!

2008-11-04T12:48:00.000-08:00

We got to go back and see our little man. He really looks good considering. We pray for a great and speedy recovery. Tomorrow they should be able to start taking off some things most importantly the vent. We will update the blog with information and pics as much as we can.

FANTASTIC NEWS

2008-11-04T10:39:00.000-08:00

Per Doctor Knott-Craig:

THE SURGERY WENT FANTASTIC!!!!

Ethan is doing great and we should be able to see him in the next half hour or so, Thanks be to God. We are so excited and can't wait to see him even though he will be out for awhile and still be on the vent until tomorrow morning. They have closed the chest ,which if you knew anything about the first surgery you know that they kept him open due to extra bleeding, closing the chest this early is a great sign. Again, we are so greatful for all the thoughts and prayers.Please continue to pray that things will go fantastic and we will be home soon.

From Memphis, TN
Jerry Johnson
Hilda Johnson
David Hocutt
Lynne Hocutt
Haley Smalley
Jonathan Smalley
Claudia Smalley
Johnny Smalley
Joyce Smith
Karen Christian
Polly Parker
Sue Johnson
Doc Cater
Jim Phillips
Matt
Amanda

the home stretch

2008-11-04T10:19:00.000-08:00

Ethan is off the bypass and we are waiting on Doctor Knott-Craig to finish up his work. We took a trip over to the CICU to meet his nurse and the other staff, they seem great! They are getting his bed and equipment ready right now so we are hoping in the next hour or so we will get to go back and see him. Doctor Knott-Craig and his nurse should be coming out soon to talk to us and let us know how everything went. Please continue to pray that Ethan will do great and have a fantastic recovery with no complications. I will update the site again as soon as Doctor Knott-Craig finishes up with us. Thanks again for all the prayers, keep em coming!!!!

Half Way There

2008-11-04T09:32:00.000-08:00

So far everything is going as planned. The nurse just called and said he has been on the bypass machine for about an hour and is expected to be on it for another hour or so. They should call again within the hour to let us know that he is off bypass and almost finished up. Once they are done he will go to CICU and it will take around an hour for them to get him settled and then we should be able to go back to be with him. Stay tuned for more updates and don't forget to pray and vote.

SURGERY DAY

2008-11-04T05:40:00.000-08:00

Let me first say that so far we are very pleased with the Le Bonheur Children's Hospital. Everyone has been so nice and helpful. The hospital is sooo cute!!! I'm so sorry that I didn't get to update the blog yesterday but as soon as Ethan was admitted we were running around the hospital like crazy. He had an Echocardiogram,EKG, chest x-ray,lab work and IV started. Despite all of that Ethan has been so great and smiling at all the nurses and docs.
OK, now for the surgery, he was taken back at 6:45am and they plan to start the surgery around 8:00am. Doctor Knott-Craig came by yesterday and went over everything that he would be doing to Ethan's little heart today. The surgery should take about 2 1/2 hours but since there is a problem with a narrowing of the aorta that will need to be addressed and will add an additional hour to an hour and half on to surgery time. He expects us to have Ethan back in CICU by around 1:00pm.Doctor Knott-Craig's nurse will be checking in throughout surgery as she will be in and out of the operating room all day. I have put some new pics on the blog so hopefully everyone will feel like they are phyically here with us even though we know that you are thinking of us in thought and prayer.

DAY #1 TRIP TO MEMPHIS

2008-11-02T17:11:00.000-08:00

We arrived in Memphis, TN around 5:45pm. The trip was very good. We stopped once to walk Ethan around and feed him. What a great traveler!!! It seemed like it didn't take any time to get here but we have so much going through our minds that the time just passed quickly. One awesome part of the trip was the sight of a beautiful rainbow. The rainbow reminded us that God has promised to take care of everything. We are very anxious about the coming days but know that God is in control and we understand that it is His will and not our own. Tomorrow we plan to take our time getting to the hospital. Ethan will be admitted sometime around lunch and we will continue to update the blog throughout the day.Thanks again for all the thoughts and prayers.

2nd Surgery Update

2008-10-10T09:01:00.000-07:00

Here's the latest information regarding Ethan's next surgery:
I spoke to Doctor Knott-Craig on Wednesday and he is so excited that Ethan is doing so well. So excited , in fact, that he wants to go ahead and get the 2nd surgery out of the way. We have decided ,after much thought, to have the next surgery with Doctor Knott-Craig in Memphis, TN. They have moved Ethan's heart Cath up to Ocotober 30 so please pray that it will go well. The heart Cath will still be performed here at UAB Birmingham and then November 3rd he will be admitted into Le Bonheur Children's Medical Center where they will prep him for surgery. The surgery will be November 4th if everything continues to go well.
I think I can speak for the whole family when I say it feels like we are on a roller coaster of emotions. On one hand we're excited to be one step closer to the next surgery being over with but on the other hand we have to give our precious baby back and his little body has to go through so much again. It feels like things are just starting to get back to normal and now we have to start all over. Just please continue to pray for Ethan, us and our entire family. We thank everyone for their prayers and support. Just keep checking this blog for updated pics and information.

Hueytown Church of Christ

2008-10-07T10:21:00.000-07:00

To our Friends and Family at Hueytown,
It is so hard to find the words to express just how thankful we are to have such a wonderful church family. We are so appreciative of all the cards that have been sent, meals that have been prepared and most of all for all the prayers that have been sent up. To have such support in our lives has been a huge coping factor for us and our entire family.With each passing day things seem to get better but there are still difficult days ahead.We encourage continuous prayer asking God to be with Ethan and his upcoming surgery but also ask that you join us in thanking God for all that He has done thus far.We have found strength in knowing that it is not our will but His. May all the power and glory be given to Him. We are looking forward to the day when we can bring Ethan to church and meet all the wonderful people that have been praying for him.On behalf of the entire Johnson family we THANK YOU!

Southland's Newest Employee

2008-09-26T10:51:00.000-07:00

As some of you may already know I started back to work this week. I have very much enjoyed my 8 weeks off but more than ready to get back in the swing of things.Ethan is staying with Matt's Grandmother, aka Aunt Sue, while I work ,but some days Ethan comes to work with Mommy and we get absolutely nothing done. He loves Lee and Cheri due to the constant attention they give him.We still have to be really careful with customers coming in and out, so he doesn't get to stay very long ,but we love having him around.

2008-09-24T11:43:00.000-07:00

"If you have faith as a grain of mustard seed,ye shall say unto this mountain, Remove hence to yonder place;and it shall remove;and nothing shall be impossible to you.
MATTHEW 17:20

Ethan's first trip to the farm

2008-09-24T09:42:00.000-07:00

This past weekend we took Ethan for his first trip to Southland Farms. It felt great to get him out of the house for awhile.

2008-09-24T09:26:00.000-07:00

Thanks for all
the prayers!!!

September 2008

2008-09-24T08:42:00.000-07:00

Well Ethan is 2 months 1 week now and doing fantastic. It has been 2 months since his surgery and he continues to get better every day. It is so amazing to see how fast his little body healed after going through so much.We are scheduled to have his next surgery the first of December. The docs seem to be very optimistic about this 2nd surgery and we were even able to put it off a little longer due to Ethan's improving health.Our biggest decision to be made right now is where he will have his next surgery. Doctor Knott-Craig,the surgeon who performed the 1st surgery, has left UAB and will begin his responsibilities at Le Bonheur Childrens Medical Center in Memphis Tennessee this October.
Stay tuned for updates.