Make a Difference 5k

Our sweet friend Jennifer McInnis is getting a team together to run/walk in the Make a Difference 5k for Blair E. Batson Hospital, in support of Carter. Jennifer has a baby waiting for her in Heaven, who passed May 2009 of a condition very similar to what Carter was born with. The team will be "Team Carter". All proceeds go to benefit Blair E. Batson Children's Hospital. The 5k is February 18th. If you would like to run or walk or know someone that would please contact Jennifer @ JenniferRMcInnis@gmail.com or me @ meaganlcline@aol.com. Thank you all so much!!!

For more information go to:
http://www.southgroup.net/5k-run.htm

To register online go to:
https://www.racesonline.com/index.cfm?reg_type=1&race_id=7162&fuseaction=public_reg.reg_form&init=true

Or print and mail this registration form:
http://www.mstrackclub.com/Results/2012/SouthGroup/SouthG12f.pdf

Happy 17 months Carter!!!


Where did he go?

Update...

Carter did great with the surgery today. Our surgeon was unable to place the NJ tube, due to the shape of Carter's little stomach. This means Carter will have a GJ tube placed on Monday. Carter's abdomen and stomach will both have to be cut to place the tube. It is a pretty intense surgery. A healthy child would usually stay a week after the surgery, but we all know Carter so I'm expecting 2-3 weeks. Hopefully, he will tolerate the J feeds and we will come home with no TPN, lipids or cords 24 hours a day. I can't wait to let Carter crawl around freely without having to follow two feet behind him. Please continue to pray. Not only for Carter, but our surgeon and everyone involved in Carter's care. The past few months have been extremely tough for Carter. Although, we know God has a specific plan for Carter and one day we will be able to see it. Until that day we will praise Him. We are so thankful and honored He chose us to take care of Carter.

We are home...

We had a great flight home on Monday, Carter slept the entire flight! We met with our surgeon Tuesday morning. Carter really needs to get off of the TPN and lipids (IV nutrition). So for right now the goal is to have him tolerating formula. One of the main reasons he needs to tolerate formula is not only adequate nutrition, but for healing factors. If Carter was to have surgery right now it is very likely he would not heal properly, which would lead to more complications. Today our surgeon is going to try to place another NJ tube. Carter vomited the one he had placed on Friday at Johns Hopkins. This will be the third and final try to get the NJ tube to stay in place. If it does not stay in place, Carter will have a GJ tube placed next week. The surgery to place the GJ tube is pretty intense so we are trying to make sure he can tolerate J feeds before we do it, this is why he is having the NJ tube replaced today. Hopefully, this NJ tube will stay in place and we will have more time to wrap our head around everything before his next surgery. Again, thank you all so much for all of your sweet messages, text and prayers! They mean so much to us!!!

I just LOVE finding pictures on my phone Carter has taken of himself, while listening to Veggie Tales!:)

Aching Hearts...

Today Carter had a NJ placed, a biopsy and his stomach and intestines scoped.  You would think that we would be almost immune to hearing very unexpected news or at least somewhat numb to it, but we are not.  It is still just as heart breaking and painful as hearing that Carter would be born with Cloacal Exstrophy.  It's an unexplainable hurt.  A hurt that I feel only a Mother or a Father of a special needs child could feel.  Our GI doctor at Johns Hopkins took a scope and looked into Carter's stomach and there the defects were.  The defects that have been present, yet unknown, since birth.  Carter's stomach is very small for his size.  When I say small I mean extremely small, too small to hold an adequate amount of food.  His pyloris, which is the opening from the stomach to the intestine is misplaced.  It is on the inner top side of his stomach instead of the inner bottom side.  This makes it extremely difficult for the stomach to empty into the intestine.  His food has to fight gravity to empty into the intestine.  I actually have not figured out how we have not had a problem with this before now or how this has not been discovered until now.  Carter was born with this, although it is not commonly related to cloacal exstrophy.

The first step is to see if Carter can tolerate feedings through the tube he has going into his intestines that bypass his stomach.  This has already shown to be a problem.  The feeding tube Carter had placed today goes from his nose through his stomach to his intestine.  The small amount of tube going through his stomach is too much for his little stomach to handle and Carter has tried multiple times to vomit the tube up.  Brandon and I, along with our GI Doctor feel that it is only a matter of time before he vomits up the tube.  The tube has to be placed under anesthesia, so it is not ideal to place the tube multiple times.  If Carter can tolerate his feedings into his intestines, he will soon be receiving a G/J tube.  His pyloris will also need to be placed in the right location at some point.

Our surgeon in Mississippi has spoken with our GI Doctor here at Johns Hopkins and they both feel confident that the surgery aspect of Carter's care can be managed at Batson.  Our surgeon will manage Carter's care with the GI department at Hopkins.  We will be traveling back to Mississippi on Monday and plan to meet with our surgeon on Tuesday.  We will discuss the next step.  Thank you all so much for all of your sweet messages, text and prayers for Carter.  They make the painful times a little more tolerable.

We have a giggle box!

We spoke with our Doctor this afternoon and he has everything scheduled for Friday at 2 o'clock.  Carter will be sedated and have a biopsy of his stomach, a N-J tube placed and his stomach and intestines scoped.  I am unsure at this time if he will have to stay overnight or not or when we will receive the results from the biopsy.  We have to take him back to the hospital tomorrow for initial blood work and his regular weekly blood work for his TPN and lipids. Carter's Doctor said he wanted us to call him once we arrived to the clinic and he would come down and explain everything to us a little more.  Today was a cold and rainy day here, so we took Carter to the Science Museum to give us all something to do.  Carter loved it!  Here are a few pictures and a very silly video of Carter! Enjoy!

Kicked back watching the IMAX film!

Johns Hopkins January 10, 2012

Carter loves looking out our hotel window! :)

Carter had two appointments today.  First we saw his urologist and he re-informed us that Carter has to be thriving, steadily gaining weight and properly receiving nutrition before he qualifies to have his "big" surgery.  We already knew this although, he did inform us that May would be an unrealistic date to set.  We met with the GI team next.  They spent a lot of time with us and really examined every aspect of Carter's GI system.  After reviewing all of Carter's symptoms and all of the test he has already had they came up with two things it could be. The first could be extremely severe reflux. The second could be that Carter stomach is not working.  Our Doctor is leaning more towards his stomach not working, although your stomach does not just stop working.  Something would have had to alter it and Carter has not had anything done to his stomach.  So that is why we have to rule out severe reflux. Although all of the tests thus far have shown that Carter is not refluxing, he will need further testing to make sure.  Our Doctor is going to work on getting everything together tomorrow for the next step.  Carter is going to have a N-J tube placed.  This is a tube very similar to what he has now in his nose, although it goes down into his intestines and bypasses the stomach.  We will be almost certain that Carter's stomach is not working if he tolerates the feedings going through the N-J tube.  Carter will also have a biopsy done of his stomach and our Doctor will look into his stomach just to make sure everything looks ok.  We expect for these test to be done on Thursday or Friday.  Although, this is not the news we were expecting to hear we are happy to finally be getting to the bottom of all of this.  Please continue to pray for Carter.  We hope to have answers by the end of the week.

We have made it to Baltimore!

We are here!  After Carter and I both got patted down in front of everyone in the Jackson airport and our luggage (checked luggage) was searched, we have arrived in Baltimore.  Carter did great.  A few minutes after take off he went to sleep and did not wake up until it was almost time to land.  As usual, he has been extremely good today.  It was in the 60's when we left Mississippi and in the 30's when we arrived here.  It's FREEZING!  It even snowed a little this afternoon.  Carter has two appointments tomorrow and I will do my best to update after them. Thank you all so much for all of your prayers and continued prayers!

 Carter did some hardcore kicking once we got to our room!

 Don't worry he has a snowsuit that he will be wearing next time we go out! 

Happy New Year!

I first want to start by saying Happy New Year! We are starting our new year out with a new hospital and new hope. Carter is still struggling to tolerate his feedings. Carter has gotten worse over the past few weeks. Brandon and I, along with our Doctor's here have decided it is time to look at other options. We will be leaving Monday morning for Johns Hopkins. We will be consulting with the GI team. Just knowing they have 15 GI specialist, I feel very confident they will be able to figure out all of this. Currently Carter is still relying on his TPN and lipids (IV nutrition) for the majority of his nutrition. TPN is very harsh on the liver, so this is only a temporary fix. Carter has been on TPN and lipids for 3 months now. We are determined to get him off of them soon. We have no idea of what to expect when we arrive at Hopkins, although we have complete peace about it. Brandon and I have recently had complete peace about this entire trip and know that God is in complete control. We both feel that Johns Hopkins is where Carter needs to be. We were fortunate enough to get appointments with our Urologist and Neurosurgeon while we are there. We were completely blessed in 2011 and look forward to all God is going to do for us this year! To HIM be the GLORY!

Carter loves to read!

Merry Christmas and 1,000 Paper Cranes!

I have a lot to catch up on in this post.  I first want to start by saying Merry Christmas! We were unable to do Christmas cards this year so this is our official Merry Christmas to everyone!!

 Carter's Best Friends...Hank and Peanut!

 Telling everyone how old he is this Christmas!

 Merry Christmas from the Cline's!

Update on Carter.  He is doing ok.  He was discharged from the hospital this past Tuesday.  He has continued to run a low-grade fever and has developed a wound infection.  We are currently treating him with IV antibiotics and it is looking better.  Carter was discharged home on TPN, lipids and NG feeds.  He was still receiving Pedialyte through his NG tube when we were discharged home.  Once we got home we switched him back to formula.  He has not been able to tolerate any formula.  This morning he started having problems tolerating the Pedialyte.  So for now Carter is not receiving anything through his NG tube.  This is not ideal, but it is ok since he is receiving TPN and lipids (IV nutrition).  I actually pulled his NG tube out this morning and I think he has enjoyed not having anything taped to his face.  It seems that no one really understands why Carter is not tolerating his feedings right now.  Brandon and I are praying for wisdom right now, not only for us, but for Carter’s many medical teams.  I know we will figure all of this out, but until then we will continue to pray.  Thank God for TPN and lipids, without it our sweet boy probably would not be here this Christmas.

Now that Meagan has given the update on Carter, I want to share a touching story from this week. One of my co-workers and her classes had been studying a unit on Japan. In their unit they read a book, Sadako and the Thousand Paper Cranes. In the book, Sadako was a young girl that was two years old when the atomic bomb was dropped on Hiroshima. She survived the bombing, but in her teen years she began having dizzy spells and learns that she has Leukemia, also called “The Atomic Bomb Disease.” Sadako’s friend, Chizuko, tells her that if she will fold 1,000 paper cranes the gods will be pleased and grant her one wish. Chizuko folded the first crane for her and Sadako began working on the rest. Unfortunately Sadako passed away before she folded 1,000. She was able to fold 644, however.

After reading this book, my co-worker and her classes decided that they wanted to fold 1,000 paper cranes for our family and especially Carter. They worked diligently for over a month and met their goal. On Monday evening my co-workers hung the cranes in my room and prayed that Carter would come home for Christmas and get well. On Tuesday morning not long after reading the letter she and her class left for me, I received a text message that we would be bringing Carter home that day. When I could finally pull myself together, I went down to her classes and told them how much I appreciated all of their hard work and more importantly their prayers. I emphasized that while the cranes were awesome, it was their prayers that brought Carter home. I want to thank each and every one that folded a crane or allowed their child to do so. Again, I want to thank each one of those kids and co-workers for their prayers. Prayer is powerful, especially when so many gather to do it. Our family loves each and every student and co-worker at Brandon Elementary School. May God bless each one of you and your families this Christmas season.

Whew!

Whew! What a morning! It is crazy how things can change so quickly! We woke up to Carter having bright red blood in his NG tube.  I called our nurse and we turned the NG tube off.  The surgery team was paged.  Before the surgery team arrived a rapid response was called because Carter started vomiting blood.  The rapid response team arrived about the same time as the surgery team.  Carter's NG tube was taken out and he continued to vomit blood.  While everything was going on I called our surgeon and he immediately came to the hospital (thank God for an awesome and caring surgeon).  Carter was taken to surgery and our surgeon found that he had multiple spots that had been eroded from the NG tube, but no active bleeding was found. The NG tube had previously been on continuous suction to keep everything out of Carter's bowels, so they could have a complete rest and heal as much as possible. The plan is to hold off as long as possible before placing a new NG tube in, so the eroded spots and irritation has time to heal, Carter is now stable and we are back in our room on 2C.  Thank you all so much for the prayers and continue prayers for Carter.  This morning was a true example of the power of prayer!

Here are a few pictures from the other day...

Sweet thing!

 Playing with the Bear Mrs.Elmer's class gave him!

 Here Mom you do this piece!

Carter looks like a different baby without his NG tube! I will post pictures soon!

It's beginning to look a lot like Christmas...

Our sweet friends at Brandon Elementary School wanted to make sure Carter had a Christmas tree for Christmas.  They were so sweet and brought Carter a tree to the hospital.  They also brought a beautiful wreath.  We are extremely blessed to have them in our lives.  It's beginning to look a lot like Christmas in room 274!

And of course a few of the boss!

How He's doing...

Carter has done really well after his surgery.  He still has his NG tube in that pulls everything out of his tummy.  This gives his bowels complete rest.  The NG tube has had a large amount of output.  The fistula is still closed and the incision looks really good.  Day 6 and 7 post-op is the weakest time for the fistula site.  Day 6 and 7 is this weekend.  Please continue to pray the site will stay closed and will continue to heal.  As long as the fistula sight stays closed and continues to heal the next step will be for Carter to produce stool.  After he produces stool, the NG tube will be removed and we will attempt to begin feeding him.  For the most part, Carter has felt really well.  Here is a video just so you can see how well he has felt... ENJOY!!! :)

Fistula closed...

Carter had surgery today.  He did well through the surgery.  It lasted about 4 hours.  The fistula is currently closed and he had another PICC line placed instead of the Broviac.  He will be watched closely overnight to make sure he does not spike a fever and remains complication free.  He has a long way to go, but he will get there.  Please continue to keep him in your prayers!

Before surgery...

I found this sweet poem on a blog I read and had to share...

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" 

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." 

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" 

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

 Priorities became properly aligned. 

People gave from their hearts. 

Those that were always too busy found time. 

Many began new spiritual journeys, some regained lost faith - many came back to God. 

Parents hugged their children tighter. 

Friends and family grew closer.

 Old friends got together and new friendships were made. 

Distant family reunited, and every family spent more time together. 

Everyone prayed. 

Peace and love reigned. 

Lives changed forever.

 It was good. 

The world was a better place. 

The miracle had happened. 

God was pleased.

Change of Plans...

Since writing my last post there has been a change of plans.  While I was sitting thinking about all of the tests Carter was going to have to endure the next few weeks our surgeon was on the phone with another Doctor.  The other Doctor informed him that the test may not give us the results we wanted to know. G.I. tests are not always accurate.  With that being said I said "no."  I do not want him going for any unnecessary tests.  He has been through enough.  I have decided it is time to fix the fistula and see what happens.  Carter did not have any feeding intolerance problems before his initial surgery to add length to his bowel.  So why does he now?  The only changes he has had are the fistula, that's not suppose to be there, and the added length to his colon.  So I think we should fix the fistula and see what happens. It has to be fixed anyways. In my mind there must be something going on with the fistula or added length of colon that is causing him to have the feeding intolerance issues.  We are not going to place any sort of feeding tube right now.  There are several different types of feedings tubes, although if the right one is not used it could be pointless for Carter to have.  So we really need to know exactly what is going on to know which tube is right for him.  So the plan is now to have the fistula closed on monday, have a Broviac placed and have his current NG tube placed into his intestine.  We will then give Carter time to heal and determine what type of feeding tube he needs or if there are other procedures needed.  We may or may not be home for Christmas, but i'm pretty sure Santa will have time to stop by the hospital if were not home.  I have been overwhelmed by all of the sweet messages I have received.  Thank you all so much for all of your prayers and continued prayers! They mean so much to us!!!

 Being soo good during his test yesterday!

 Where's Carter??

There he is!!!