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!!!

Update 11/10/11

Carter did not have surgery Friday as planned.  Carter was not well enough for surgery and Brandon and I, along with our surgeon, were still unsure of a few things.  We have decided to wait until Monday to do Carter's next procedure.  He will either have a PICC line placed or a Broviac (similar to a PICC although it will exit at Carter's chest and is more permanent).  Our surgeon will also attempt to place Carter's feeding tube that's in his nose into his intestine.  We will then go home on TPN, lipids and enteral feedings and come back after the holidays for another surgery.  If we have the surgery now we will be here throughout Christmas.  I would really like Carter home for Christmas and Carter needs a lot more tests before his next surgery to make sure we get it right.  Our surgeon has spoken with our Doctor at Johns Hopkins and they both agree that Carter needs some sort of feeding tube and the fistula needs to be closed.  We are just unsure of what type of feeding tube Carter needs, we will be having more tests done before his next surgery to determine this.  

Carter had a milk study done yesterday.  This test was supposed to show if Carter was having problems with reflux or delayed gastric emptying.  The official results will not be back until Monday.  Although, our surgeon, myself and the tech during the procedure did not see reflux or delayed gastric emptying.  So we are still unsure of what's going on and why he is not tolerating his feedings.  Carter was so good for the procedure.  The tech told me they normally sedate children for the procedure because they have to be still for at least an hour.  Carter did cry for about 2-3 minutes and then he went to sleep and slept throughout the procedure.  I was extremely happy he did not have to be sedated again.  Carter did have a  blood transfusion last Wednesday.  Hopefully he will not have to have another blood transfusion.  

So for right now we are preparing for surgery on Monday to either have the PICC or Broviac placed.  Our surgeon will also use a scope to guide Carter's current feeding tube into his intestines.  Hopefully we will be home by the end of the week.  Please continue to pray for Carter.  Please pray the Broviac or PICC goes in smoothly and Carter can stay infection free.  Please pray he does well with this next surgery so that we can have him home for Christmas.  Please also pray for guidance for Brandon and I, that we will make the correct decisions for Carter's care.  

Carter playing with his duck his sweet nurse Ashely bought him, the bear the Walker's got him and the bear Santa Clause brought him!!

Santa has been at Batson and Carter got to go see him.. he was not a fan!

We are back...

 

Yes, we are back in Batson.  Last week we started Carter on a new medication in an effort to decrease his vomiting.  I noticed toward the end of the week that Carter was acting like he didn’t feel good.  Stomach pain can be a side effect of the medication, so of course I just blamed it on the medication.  All weekend Carter did not act like himself.  Sunday, Carter did not have any output and spiked a 103.5 fever in the middle of the night.  I notified Carter’s surgeon around 5 am and we both agreed he needed to take a look at him to make sure his fistula site was still open.  We checked into Batson around 10 am and Carter went back for surgery around noon.  The fistula site had started to close again.  It was opened and Carter had a ton of output.   He had no fever and felt great after surgery.  We were discharged  to go home.  Once we got home Carter started vomiting.  I watched him closely and he spiked a 104 fever around 3 in the morning.  I managed to control the fever with Tylenol and Advil.  We had a previously scheduled appointment with our surgeon Tuesday morning.  Once we arrived at our appointment the secretary took one look at Carter and told me to come back and she went to get a nurse.  The nurse arrived with Dr. Sawaya and determined that Carter was septic (infection throughout his blood stream).  We were quickly admitted to Batson and antibiotics were started.

            Carter is still struggling to keep his fever down.  It has ranged from 99.5 to 104.2 today.  The PICC line that Carter has had in since October had to be removed today also due to the infection in his bloodstream. An IV was placed in Carter with the assistance of an ultrasound device. Also, his blood count has dropped again and he will be receiving blood this afternoon.  Unfortunately, he will not be receiving my blood.  The remaining blood I had given for Carter last time expired and I am not able to donate again until December 27^th.  I looked into my Mom or someone else with Carter’s blood type giving him blood and it was ruled out.  A direct donation would not be ready until Friday for Carter to receive it.  Carter needs blood today, not only because of how low his counts are but he is scheduled for surgery on Friday.  He is going to have a more permanent feeding tube placed.  It will go into Carter’s stomach and also his intestines.  Brandon and I are still praying and trying to decide about a few other surgical procedures Carter may have on Friday.  Please pray for guidance for us to make the best decision for Carter.  Please continue to pray for healing and for the infection to leave his body.  

New Tricks!

New Tricks

Carter decided to show me a new trick a few days ago.  He can now stand up by himself as long as his back is propped up against something!!! We are so proud of him! So, of course, here are a few of the five million pictures I took.

After battling with insurance issues for months Carter is finally receiving physical therapy on a regular basis and hopefully he will receive speech therapy.  Our physical therapist comes out to our house twice a week and works with him.  She came out last week and left Carter and I with homework!  His homework (or my homework) is to work on turning Carter’s feet in while he walks and to stretch his hips out as much as possible.  Carter is not a fan of either one.  Part of Carter’s condition is pelvic abnormalities.  He is missing his symphysis pubis. This is the cartilage that holds your pelvic bones together.  It’s easier explained by saying Carter’s pelvis, instead of being round, is open like a book.  He will have a metal plate placed when he has his bladder closure surgery that will round out his pelvis and fix his pelvic abnormalities.  So before his surgery we need to have all of his muscles as limber as possible so it will be easier for them to not only close his bladder, but repair his pelvis.  Our physical therapist wants Carter to walk as much as possible. He can either walk behind his walker or while holding onto my hands.  So we have walked, walked, and walked some more this week!  We are unsure if he will be able to walk on his own before his “big” surgery due to his pelvic abnormalities, but we are going to work on it as much as possible.  Carter will be more likely able to walk after surgery if he is already walking before it.

So, on top of walking we are still battling the feeding issues.  We have good days and not so good days.  Carter is still vomiting everyday.  Some days it is only in the morning and others it is throughout the day.  We have turned his feedings up more and I haven’t noticed an increase in vomiting.  So I guess this is a good sign.  His goal is 35ml/hour and he is currently at 21ml/hr.  He has a long way to go but he will get there!  We are experimenting with a new medication now and still have many options to experiment with.  He will soon tolerate his feedings!  He is now 18lbs.!!  His personality continues to develop and it has really taken off since starting the enteral and IV nutrition.  He loves to blow kisses, clap, and sing.  He is still extremely happy.  He very rarely cries, actually the only time he cries is when we go to the Doctors’ office or he is experiencing some sort of pain.  He is such a good baby.  Our goal for the upcoming weeks is to get Carter to his goal feedings and get him off of the TPN and lipids.  Thank you so much for all of your prayers and continued prayers.  As always…To him be the Glory!

Ready to go to the woods!