Balloons, Balloons!!

I'm sorry that it has been a few days since I blogged, but no news is good news right?? We have had a very blessed week. On Tuesday we went to see our favorite doctor and crew, they did an x-ray on Dylon and checked his blood pressure on legs and arms. The x-ray showed that Dylon's heart looked average in size. They also weighed him and he has already gained 2 1/2 pnds since pre-op!! His b.p. is 112/62 which is a little high for someone his age. Dr.K(family doc) said that he didn't see the need to up his medicine just yet. He wants to monitor his b.p., so we will go back in three weeks. The reason his B.P. is up is b/c his heart is used to having to pump so hard, and now that it is fixed, it doesn't have to pump as fast but his heart is still pumping fast right now, so he will take this b.p. medicine until his heart balances out. We are also scheduled to have an echo done at Sacred Heart(pensacola,Fl) in two weeks, just to get a better pic of his heart and the fluid. However the doc was amazed at how strong Dylon's pulse is in all his extremities. However he can still hear a heart murmur, but he said that it is small but its nothing to worry about at all. He also informed us that Dylon has some softening of his trachea, this was caused by the vascular ring rubbing against the trachea, was told that this should strengthen as time goes by. So because he still has softening, he still caughs, but it is nothing like it was, and rarely happens. While we were at Dr.K's, they presented me and Matt with a certificate for Best parent award, and Dylon for best patient award. Dylon was so excited, he loves his Dr.K!

(Dylon with his certificate)

We are just so blessed to be a part of such a great community and church family. Every night this week, our church Mt.Zion UMC has cooked us meals, its like Thanksgiving dinner at our house every night. These ladies really know how to cook and we are so thankful that they have done this for us. On top of all the food, we have also been recieving balloons from family and friends. Our boys love to play with them, and it has really helped to keep them entertained since we have to stay indoors. Thank You for the balloons!! It seems that every where we go, someone stops to ask about Dylon and tell us that he has been on their hearts and in their prayers. I feel that it is just a reminder of how God works through the midst of it all. We know that it is rare for a child to be sent home so early after such a major operation, and we give God all the glory for that. There's a song that I heard at a church in Louisiana, and the lady who sang it had been healed of Multiple Sclerosis. The song has been in my heart every since I heard it and the lyrics are so meaningful to me....

In the Midst of It All

by Yolanda Adams

I've come through many hard trials Through temptations on every hand

Though Satan's tried to stop me

And to place my feet on sinking sand

Through the pain and all of my sorrows

Through the tears and all of my fears The Lord was there to keep me

For He's kept me in the midst of it all

Not because I've been so faithful

Not Because I've always obeyed

Noo, It's not because I trust him To be with me all of the way

But it's because He loves me so dearly

He was there to answer my call

He was there always to protect me

For He's kept me in the midst of it all

Choir:I've come through many hard trialsThrough temptations on every hand

Though Satan's tried to stop me

And to place my feet on sinking sand

Because Jesus loves me dearly He was there to answer my call

There always to protect me For He's kept me in the midst of it all

Chorus:No He's never left me And He' never let me fall Oh yes He will protect you For He's kept me in the midst of it all

Vamp:Yes, He kept meYes, Jesus kept meJesus kept me (3x), in the midst of it allFor He's kept me in the midst of it all

So I just pray that whatever you may be going through, just remember that God loves you and he is holding you up and he will NEVER, ever let you fall.

Love,

Shelli

Laeton Reid sneaking some of that homecooked food!!

Not me Monday!

I haven't done a not me Monday in a while, and I figured it was about that time!

I'm sure that most of you know about our journey out in Texas and we were so glad to get home. But it has really been hard to get into the swing of things again, i'm so used to haveing just Dylon. So to keep my kids entertained, I did not fill a bubble maker up with some bubble bath because we ran out of the "real" stuff and let it run for hours at the time, at least it made my house smell like blueberries! I also did not attempt to "fix" our lawnmowers by kicking them, I would never do that, I mean besides we live on a busy road there is no telling who would see me do such a childish thing. I also did not call my dad to see if he had a mower I could borrow from his shop, and I also did not borrow it only to make one of the tires go flat. My family is a "tractor" family, I would never have such bad tractor luck! I also did not bribe my kids with icecream sandwiches just so they would eat their lunch, my kids are such healthy eathers! I also didn't convince Laeton Reid who at the time had a stinky diaper to go find his daddy and tell him "I Stink", only so I wouldn't have to change him. I also did not hide behind the door, while I watched Laeton Reid tell his daddy he stinks and start lauging so hard I had to go to another room. What kind of mom tells her one year old to do that, Not I!!

I hope you enjoyed My Not Me Monday, i'm sure I could do one every day~!

Home Sweet Home!

Our pilots Mr.Paul Armstrong(L) & Mr.Lee Reeves(R)

Dylon during takeoff, he LOVES to fly!

We are finally nesting down for the night. We had a great flight and are so thankful for and grateful to Mr.Pate, Mr.Armstrong and Mr.Lee. Thank You guys for getting us here quickly and safely. We were welcomed back by about 15 family members who were as excited to get us home as we were to get home.

You can see some really cute pictures of our arrival at the airport on Mandi's blog, just click on her name. Every time I see these picture's I cry...today has deffinantly been one of the most emotional days for me. I am so happy to have all of my family together again. The boys have been so sweet to each other and I can tell they have really missed each other. I am so glad to be back in Andalusia.

I had to run to town today and get Dylon's medicine so I went to Wal-mart, duh! I ran into a few people out there, that had been keeping up with Dylon through WAAO, a local radio station. I just want to thank you Blaine and Andrea for keeping everyone updated on Dylon. We couldn't have made it through this so easily had people not have been praying for us and I know that alot of prayers came via WAAO. So thank you again WAAO crew, we love ya'll!

I really have a bunch more to say, but I am really exhausted and am fading slowly. So I will do a better blog maybe tomorrow! Just know that we will be forever grateful for the prayers and all the help we have received to get out there. I wish I could go and tell each of you personally, but I don't think that's possible...so just know that We love ya'll and Thank You for joining us and helping us get through this journey. The power of prayer is what got us through this. Thank You Jesus for hearing all of our prayers!

Love ya'll

Shelli

Dylon during our flight, I was trying to get he to chew on some candy~

Great Report Today!!

We went to TCH this morning and talked with Dylon's cardiologist Dr.S. Dr.S said that he doesn't expect Dylon to ever need surgery again. This is such great news. We also got to see some pictures of Dylon's "new" heart. I am just blown away at how different it looks from before surgery. He basically has a normal looking heart. We still have to monitor the fluid around his heart, but we will do it locally. We will come back to TCH in about a year and then as long as everything still looks good, then we will only need to come every two or three years. We are coming home tomorrow around 9:30, and we cannot wait to get back to Andalusia.
This is the old Aorta with all the twists and turns...

This is the newly improved, looks like a normal aorta!

Results of Sedated CT scan!

We just got back from TCH and are very excited about the results. The testing went good, they decided to do an I.V. in his foot instead of his hand, and it made for a horrible 5 minutes of poking to get the I.V. started. I hope that this is the last of I.V.'s that we have for a really,really, really, really long time.

After the testing, Dr.S came out to the waiting room and spoke to me and Matt for little bit. He said that all the repairs are looking really strong and good. Just what we wanted to hear! He does still have some fluid around his heart, but doesn't look like the fluid has progressed. We will meet with Dr.S tomorrow morning and discuss more of the fluid. Dr.S also said that we might do a possible Echo tomorrow just to double check the fluid. Some tests show a better view of the fluids than other tests. Along with seeing Dr.S we will also have an X-ray and of course blood pressures on all legs and arms. Blood pressure should be the same on all four, or atleast close. Before the surgery, his upper body had high blood pressure and his lower body had really low blood pressure. But we are believing that our Great Physician has taken care of this...Great Physician meaning God.

We can't wait to get back to Home sweet Home, but we also know that this road is not over. We will never get back to life as we knew it, but we gladly welcome this new life with the acknowledgement of Dylon's "newer" heart. When we were released from TCH Tuesday, they sent a list of things we cannot do for atleast 4 weeks. I will try and list most of them just for your knowledge and for our close family and friends.
~no picking him up from underneath his arms, one must hold him like a baby to pick him up. The reason for this is to not put any pressure on his sternom.
~he is not allowed at grocery stores, church, school, family reunions for 2-4 weeks. This is b/c he was put on the heart lung bypass machine during surgery, and doing that results in really low immune system. This helps prevent infection.
~he cannot pick anything up over 5 pnds. He also cannot play on swingsets, jungle gyms, or anything he could fall from and hit his chest.
~he cannot go swimming for 2 months.
~ he cannot get a bath for 4 weeks.
~he cannot ride anything such as a bycicle or any ride on toys.

So as you can see we are going to have our hands full with trying to prevent any injury to his sternom. Just knowing my boys, they love to play hard and this will be an adjustment. I have also been told that my two boys at home: Houston and Laeton Reid are extremely spoiled, so if anyone will volunteer to do like baby boot camp with them before we get back, it would greatly help our homecoming ;)
Thanks again for everything!
Love,
Shelli

Hotel Atlast!

We have made it to our hotel room and are trying to settle down for the night! Dylon is doing really good with his pain management. He is just so tough. We will have a CT scan done on Thursday and then Friday we will see the cardiologist. As long as those clear we will be flying back, thats right I said flying. Another Andalusian donated his private plane to come and get us. We can never thank you enough. We will be flying out on Sunday.

I have such mixed emotions about going home and not being around TCH, but it's still knowing that God is in control of Dylon.

Thanks for all the prayers and phonecalls and messages, they have been what has gotten us through this. I love ya'll so much!

Oh I must send a special thank you to Crystal who's daughter had open heart surgery two weeks ago at TCH by the same Doctor. Crystal thank you so much for that sweet card, Dylon loved it and kept saying Bentley's mom, we prayed over Bentley's surgery together, and he looked at all her pics. It really helped prepare him for his surgery.

Also thank you to Aunt Tricia and Uncle Keith for their sweet card and uplifting note!

And Straughn Elementary School who sent Dylon a Care Bear card, he loved it!

Dylon and his cards and a drawing by Houston, his twin.

I also have to respond to a comment on the last post. Aunt Marilyn, Dylon has come up with a name for your baby mule.....Diego! Diego is his favorite cartoon character, but also has a great meaning, Diego in English means one who supplants, but if you trace it back to Biblical day, in hebrew it is may he protect.

Released to Houston Area

Just a quick update to let you know that we are being released today to the Houston area. However, we had an echo yesterday and it showed that there was a little bit of fluid around his heart. I have been told that this is expected from a child with the type of surgery that he has had. The doc's are not worried, but I am. Dylon will just be treated with motrin in the hotel room. We will then come back on Thursday and have a sedated CT scan. As long as this shows normal, then we will be able to come home on the weekend. We will probably be driving b/c the personal plane that flew us out here is out of town. I have looked into a commercial flight, but Dylon can't be around large groups of people like airports, church, school and release papers even said family reunions! I don't think I'll be able to keep my large family from loving on him. So anyway I am trying to find a rental car place locally and hopefully we will be back to a new normal over the weekend. This new normal is going to be so hard for Dylon and Houston. We just can't wait to get back. Well actually Im kind of nervous about being 9 hrs away from this incredibly hospital but they promised me that if anything changed with Dylon they would fly someone out to Alabama to get him. So please pray that the fluid goes away b/c there are so many dangerous things that could happen if the fluid progresses! The doc has told me everything to look out for, so also pray that I would be able to see the signs of infection if the fluid does progress!
THank You!
Love ya'll!
Shelli

quick post

THis is me (behind the pic) and Dylon on our way down from CVCU! He was excited!

We have had a buisy day...Dylon was finally moved to the 15th floor which is the recovery floor. He is doing really, really good. He has just amazed me with his cooperation with the Doctors and nurses. Imagine a three year old having all these wires and lines and I.V.'s hooked up to them and not complaining about it, Not once. We believe it is just answered prayers that Dylon has been so calm about everything. Thank you for all of your prayers.

Dylon still has his chest tube in right now, but they plan on getting it out tomorrow morning. I have been told that this is really painful for him and will be the most painful thing pre-op. Aside from that he is slowly but surely becoming the spunky little Dylon we all know. I don't have any idea on how long we will be on this floor and before we go home. I can't wait to see my other bambino's, I really miss them.

The day of surgery we had some visitors from Andalusia, my boys just love the Abbie, Ella Grace and Caroline Wood. They drew Dylon some precious pictures and he just smiled really big when I told him who drew these for him. We love you Wood family!

We have really been blessed with such wonderful nurses and Doctors, I highly recomend Texas Children's Hospital. We even had a few nurses from Alabama, which was nice. We could relate and understand each other with our southern accents! Everyone here is very friendly, and have exceeded my expectations. Thanks to everyone who has helped us to get here. You have played a huge part in my beautiful sons life, I will be eternally grateful to for that!

We love ya'll

Shelli

this is the edible arrangement that we received, it's Delicious!

In his banana pj's, they snap all the way up, so he can wear this. He is very sensitive of letting people see his chest from the sternatomy. So we make sure to always have something over it.

Don't you just love that smile?

Elevator's!

So I am not an elevator fan, at all. And around 10:00 every night at Texas Children's, they practically shut the elevators down except for parents or Docs or nurses. So last night we (me, hubby, my mom) decided we would take shifts on caring for Dylon. Matt was first and @ 12 he would be relieved by my mom and she would stay for 2 hrs and then I would come in and relieve her. Everything had gone as planned, and it was my turn to relieve my mom from the CVCU. They give out these little badges to wear after 10:00 so we can access the elevators, I asked if there was anything else we needed to do to access them and the "kind" lady said "NO!" So I get on the elevator the doors close and press 18, this is where the CVCU is (we are taking breaks on the 17 floor). The number lights up only for a second and doesnt stay lit, the elevator doesn't move an inch. I pressed 17 again, my heart is pounding by this time and I am starting to panic, but the elevator is still not recognizing my punching of the numbers. I pressed open door button, but still nothing. I try to find the call button, but there wasnt one, all there was was a fire bell...didn't like the thought of setting off the fire alarms, so I finally thought that if it would take me anywere possibly the first floor...so I press it and IT stayed lit..and started to move. Thank God as soon as those doors started to open, im running out, wabbly legs, shaking hands and all. I go right to the security desk and a policeman kindly shows me that one must put the badge given by the (17th floor) in front of this little black square with a light, wait for it to turn green and then press the floor that we want to access. I never had anymore problems, looks like the desk clerk on the 17th floor could've told me that...guess she thought I needed some excitement ;)



On another not, Dylon is doing fantastic. Possibly move to the 15th floor tomorrow. He still has three lines (one in each hand and on in his neck)and the one in his neck which is used for taking med's has to come out before we can go to a regular floor. He smiled a really big smile for me last night, which was so comforting and is eating and drinking good.



My mom and I are sitting with him today and Matt is gone to the hotel to take a well deserved nap. You know how I was talking about how we did shifts last night, well Matt slept through his shift that was suppose to let me get some rest, so as soon as my mom came in, I went the 17th floor and woke Matt up and he was really sorry for sleeping through his shift and said something like (that was nice of me to do that) and winked at the same time. Whatever! But that was ok, because I went to our temporary home and took a hot shower and slept for 5 continuous hours. It was marvelous!



Oh we also got a little suprise this morning from B. He sent us an edible arrangement. It looks so delicious and can't wait to dive into it. Thank You B. We love You and Miss You.



If you are wondering what my other babes are doing you can check it out on MiMi's blog or Aunt SuSu's blog! Thank you guys for taking such marvelous care of my little ducklings! I'm sure that they will be completely and totally rotten when I get back, and I'm okay with that. They deserve every little bit of spoiling that they get!

Thanks Again for all the prayers and concerns!
Love,
Shelli

Update

Dylon is still recovering. He is doing good. Dylon just got his chocolate milk. He ate some Jello and so far so good, he held everything down. His pulse ox. is lower than they want...they thought he had a collapsed lung, but xray showed he didnt, he just has a lot of "junk" in his lungs. So we are doing some lung excercises, like blowing bubbles and blowing pinwheels. They are going to draw some blood and check his blood gases soon. Please pray that his ox. sats go up.

ps the machine that you are seeing is a soothing machine...it has really been great, it plays classical music and projects images like fish and animals onto the wall. We hung Houston and Laeton's photo's on it!

Friday Morning!

Just letting you know that Dylon has had a great night, he is doing really good. They are talking about extubating him sometime today. Possibly taking out his chest tube tomorrow. He looks really good. They are still monitering his pressures and look about the same. Also monitering pain management and trying to come off of some of his pain medicine. As my husband said "let the games begin"!
There are so many families who's kids are suffering from CHD'(congential heart defects) so please say a pray for these families. Thank you all so much for the prayers and comments, it really lifts our spirits to have so many people praying for our little Dylon!
Love Ya'll!
Shelli

What a mighty God we serve!!

Today was a very, very long and trying day. But the outcome couldn't have been better. Dylon is doing good. We all are taking a quick nap. So far his blood pressure which was high, has started to balance out, so they are lowering the amount of meds for his blood pressure. He is still asleep, and will be until sometime tomorrow. We got to see him about an hour after surgery, he looked really good. He was hooked up to about 6 different machines. He is still on a breathing machine, and it is doing 50% of the work for him. He is also still recieving blood. He also still has a chest tube. It will be a couple of days before all of this is out. Dylon is just so strong and I couldn't be prouder of him. I am just in awe of his strength.

We thank God for this miracle and know that none of it would even be possible without him. Thank You God for such an amazing little boy.

Thank you all for the prayers, we are just blown away by all of this!

We love ya'll!

Shelli

ps I hope you enjoy the picture of one of God's miracle's!

SURGERY WAS A SUCCESS!!!!!

SURGERY WAS A SUCCESS!!!! PRAISE GOD!!! The surgeon said that the surgery had the best possible outcome for Dylon!!!!! The aorta was VERY thin, but all has been repaired. Prior to the surgery they did pressure point test on Dylon. His upper body tests were VERY high, and his lower body tests were VERY low. After the surgery they re-did the tests, and they were exactly the same!!!!!!!!!!!! Dylon has just 1 chest tube, and they are hoping to wake him up later tonight to see how he's doing!!! Thank you all so much for your prayers today. God is great, and we are all truly blessed. We love you all!!!

Update @ 3:00

new update....they have Reconstructed the aorta, and now they are working on attaching the subclavian artery to the aorta. He will then have an echo and depending on how that goes they will take him off bypass. Then its just seeing how he reacts to coming off bypass. After that he will be done with surgery and admitted to the I.C.U.We are in really good spirits right now, that was a really good update from his nurse.

update

Just got an update. Dylon was just now put on bypass. Getting him on bypass went smoothly. Thank God for that. The surgeon will now study the anatomy of his heart and we will get another update around 2!
Love ya'll!

10:00 update

This is Dylon talking to Houston right before he went to the O.R.


We just got our first update, and Dylon is doing good. Not to much to report...They have completed all of his lines for the surgery, and have already completed his sternotomy. They will now starting him on his bypass machine. We will recieve another update around 12:00 and hopefully they will have started on his repair.
We are in good spirits..Our pastor from our church is here and she even got to pray with the surgeon and the anesthesiologist.
These next 8 hours are so crucial for Dylon! Please Please keep offering prayers up for him!
Thank you all,
We love Ya'll!
The Smith's
ps here are some pictures from our journey so far!


this was a view from our Old room

this is him watching the cars, and trains and cranes from our room!

UPDATE: June 3, 2009

Hey all its Mel again for Shelli::: WiFi is not working at the hospital...

...Surgery is in the morning around 6:30am and so far we are doing good. Dylon has been doing well today, and we are all in good spirits. We all took shifts the last 2 days so that we could get rest before the big day tomorrow. The hospital staff here is amazing! They are being so nice and accommodating. We really are so lucky to be here at TCMC. Just a reminder I have my cell phone with me if you want to call and check on us. Pastor Amy got here today, and came by to visit. We are thrilled to have her here supporting us. Her prayers are so comforting to Matt and I and we are grateful for her.

The address for the hospital is
Texas Children's Hospital
6621 Fannin Street Houston,
Texas, 77030
Phone number is 832-824-1000

Thank you so much for your support and for your prayers. Please continue to keep Dylon and the surgical staff in your prayers.

Love,
Shelli and Matt

a complicated day!

Today has been a very long day.
Dylon stopped running a fever as soon as we got to the E.R. (of course). Once we had finished signing papers for admittance for the E.R., we sat down, and the phone rang and it was Dr.S (cardiologist) saying that they finally had a room ready for Dylon on the cardiology regular floor. So Dr.S met us in the E.R. lobby and escorted us to our room. They started an I.V. and he is doing much better. It just doesn't make since how a child can go from a high fever, caughing, and gaging to being his usual self. The cardiologist on the floor thinks that it is all due to the vascular ring, causing an obstruction in his air way. I don't see how a fever links to all this, but they know way more than I could ever know, so I'll go with that. His blood work came back fine, his white blood cell count was up 1/3 of a point, but they said that that is nothing to worry about. Usually when you have an infection the points go way up so. They tested for sinusitus and it was negative, so everything I thought it was, it wasn't. They aren't gonna let Dylon go back to the hotel before his surgery, they want to keep him there until his surgery which is Thursday @ 6:30. These Doc.'s and nurses have to think we are crazy, b/c seeing him now, he is acting like a normal little boy. I have five people who saw the way he was this morning being sick and all and we are all just weirded out by all of this and how quick he got better.
Weirded out, but thankful and counting it a blessing that he is better.
Thank you all for the prayers!
God Bless,
Shelli
ps Dylon did a art project with the lollipop radio girls they made a kite...and he won the contest. They are gonna post a picture of him on the TCMC T.V. channel and then he got to request what song to playwhile they show his picture and he requested
"Sweet Home Alabama"

Fever

Dylon was up all night with caughing and gagging. He then woke up this morning doing the same thing plus running a fever. We are not sure what is causing this fever....Dr.S wants to admit us into the hospital...we are waiting to hear back from him and then we will head down to TCMC.
Please pray for Dylon's fever to go down, and that there is no infection so surgery can still go on on Thursday.
Thanks!

Sugery rescheduled for Thursday

Just letting you know that Dylon's surgery is rescheduled for Thursday. We will have all the pre-opt stuff all day Wednesday. Surgery will start around 6:30! We are about to go get some supper. I will try and do a better update later tonight!
God Bless
Shelli