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!

Thankful...

Thanksgiving has come and gone.  Yes I said Thanksgiving has come and gone.  For me, this time of year seems to fly by.  Before long, Christmas will have come and gone and it will be 2012.  It seems like just yesterday it was 2010 and Carter was being born.  I have always heard that having a child makes time go by faster and boy is that right!  With time flying by I felt that it was time for a “time-out”.  I have been so wrapped up making sure Carter’s PICC line looks ok or his NG tube is in the right place that I have not made time to voice how grateful I am.  So here it goes.

God I am so thankful for all that you have given me.  You have blessed me with a loving family and a wonderful husband.  Although I may not always see it, I am blessed beyond my childhood imagination.  I remember growing up and daydreaming of the big house I would have or the awesome car.  I would have the best clothes and a huge closet that still would not fit them all.  I would have the biggest ring and the best shoes.  I just knew everything would be perfect.  I would get married and have lots and lots of babies. I always loved babies and just knew I would have at least three.  Birth defects? I didn’t even know what that word meant.  I of course was too cool to have a child born with birth defects.  Children like that were only given to other people that I would hear about every once in a while.  I would usually think oh how sad and go on with my life.  Of course, there were the children you heard about being sick all of the time.  After about the fifth time of hearing it, I would begin to think Lord is this child ever going to get better?  Or are his parents just crazy and want everyone’s attention? Lord heal this child so I don’t have to hear about it anymore!

It sounds awful I know.  But, that was me.  Concerned only about myself or the football game I would cheer at on Friday night.  Now here I sit, on the other side of the table. I don’t have a huge mansion, the best clothes or biggest closet.  All I have is love.  Overwhelming love for my God.  My God that has given me so much.  A wonderful husband and the most perfect little gift of all.  A baby born with birth defects that I can not see.  He is beautiful and perfect.  He is amazing.  I guess I see Carter how God views me, perfect.  I am just so in love with this little angel God has given me.  I hope that no one that reads this ever feels the way I use to feel.  I would never ask for a pitty party. I only want your prayer for my little boy.  He is my world.  Without him my arms would be empty and my heart not whole.  With the Christmas season fast approaching I ask for continued prayer for my little man. I want to thank each of you, some of you I will never meet, for praying for Carter.  Your prayers are working and I am extremely thankful to each of you.

I finally had a chance to sit down and look at Carter's one year pictures.  So of course I had to put some of the on here!  Thank you flutterby photography!

Happy Thanksgiving!

Happy Thanksgiving!!!

Today we have so much to be thankful for  Most of all Brandon and I are thankful for our sweet little gift Carter.  He has blessed our lives and taught us so much. We are extremely thankful to be home for Thanksgiving.  Since my last post Carter has been discharged from the shospital.  He is is receiving his nutrition through his IV an also a feeding tube that goes down his nosse into his tummy.  He is still receiving IV antibiotics.  He is still struggling to tolerate his feeding through his feeding tube, although, he has not vomited the past two days.  This is a big improvement!  We are going to continually work on feeding him through his feeding tube and try to get rid of the IV nutrition.  We are praying that time will heal Carter's intestines and he will soon be able to toelrate his feedings.

After speaking with our surgeon at Johns Hopkins, we were informed that he will need around 3-5% of Carter's intestine to perform his bladder closure.  This is a huge problem.  The past few surgeries  have  required all of Carter's intestine to be used.  Brandon and I are at a standstill right now.  We have prayed about it the past few days and feel that right now we will leave Carter's bowels how they are.  Alhthough, Carter is currently not tolerating his feedings his intestines are otherwise stable.  Carter has been through so much the past few months and we feel like he needs a chance to heal.  Carter was diagnosed with "Failure to Thrive" during his last hospital admission.  Brandon and I both feel that he has had so many surgeries the past few months he needs a break and a chance to thrive.  We have decided it will be best to allow our surgeon at Johns Hopkins determine the amount of bowel he will need and then we will look at making repairs to his intestines, after his bladder closure.  Our surgeon at Johns Hopkins will not proceede with any surgeries until Carter is thriving and gaining weight.  Our "plan" or should I say goal is to have Carter thriving by late May.  This will allow Carter to have his big surgery in late May.  Please continue to pray for Carter.  Please pray that Carter will begin to tolerate his feedings and gain weight.

Carter's hair!!!

Today has been full of ups and downs.  Our surgeon has decided it is highly unlikely Carter is going to tolerate only tube feedings right now.  The plan now is to get Carter to tolerate at least 15ml/hr (his goal is 46ml/hr) and continue to give him lipids and TPN.  Carter tolerated the feedings throughout the night and did not get sick until this morning.  He of course feels wonderful after he gets sick because his tummy is not full anymore.  He was ready to play after getting sick this morning, so we took a little video of him playing.  I was blowing him with the hair dryer and he thinks his hair is going to blow off!! Enjoy!!!

Where to begin...

Where to begin? It has been a few days since my last post. Carter's surgery went well and for the most part he is ok. Much to my surprise, his incision is HUGE! It hurts my heart to look at it. He is such a trooper and you would never know he had such a large open abdominal incision. He continues to smile and sing all the time. Now I'm not going to say there are not times of intense screaming and many tears, but for the most part he has stayed happy. Of course he has had complications since surgery. He started running fever again, although his blood cultures did come back negative. Praise God! He continues to be on two very strong antibiotics and last night was the first night since surgery he has not ran a fever. Our surgeon suspects there was some stool spilt into his abdomen with the last surgery and that is the cause of the fever. The good news is, he did not have a reaction to the same antibiotic he had a reaction to last week. We attempted to start feeding Carter the day after surgery and he did not tolerate it. The feedings were stopped and were just restarted today at 1. Please pray Carter will start to tolerate his feedings. We think the infection may have been shutting Carter's bowels down and maybe that's why he was not able to tolerate his feedings. Now that we have the infection under control we expect Carter to tolerate at least some of his feeding.

The past few weeks have been absolutely atrocious. I have seen Carter held down by more than four people at a time. Watched him being fed so much that he eventually fills up and vomits. I have watched him have a tube shoved down his nose, much to his dislike. I have seen him scream until he falls asleep, from pure exhaustion.  I have seen Carter go through things a mother should never have to watch their child go through.  I have seen him go through so much pain and he continues to wake up with a smile on his face everyday.  Did I forget to say he just had a huge hole cute into his abdomen?  It is so large I can actually see into his intestines!  I am absolutely amazed at the strength God has given him.  AMAZED!  If it were me I would be laying in bed not moving crying for more pain medication.  He gets up ready to go, just as happy as he always is.  He is amazing!  Please continue to lift Carter up in prayer!  Please pray for continued strength, Carter to stay pain free, and for him to start tolerating his feedings.  Thank you so much for all of your prayers and please keep them coming!  To Him be the glory!

Surgery...

Today Carter had another intestinal surgery. The surgery went well. Carter is back in his room recovering well. He will continue to be monitored closely.  Please continue to pray for him to stay pain free, infection free and to continue to recover well. 

Here are a few pictures of Carter before his surgery.  

On Sunday Carter got to get out of his bed for a few minutes and look out the window.  He LOVED it!

 Our sweet friends The Robinson's bought Carter a music lamb that he loves!  It came in this cute gift bag.  Carter thought it was fun to play hide and seek with the gift bag.  Do you see Carter??

 Where's Carter???

 Carter playing in his cute gown this morning before surgery...

He trains my hands for war...

  He made my feet like the feet of a deer and set me secure on the heights. He trains my hands for war, so that my arms can bend a bow of bronze. 

Psalm 18:32-34

It is a fact that God gave Carter more strength than I will ever have.  The past few days have been full of ups and downs.  We were expected to go home today.  We would still be tube feeding Carter and giving him IV antibiotics, but we were going home!  That all changed last night.  Carter is required to tolerate 720ml's of formula a day.  The plan was to give him 30ml an hour for 16 hours at night and give him 3 big feeding's of 80ml three times a day.  Carter did not tolerate the second big feeding.  He vomited within an hour of receiving it.  He was still vomiting when it was time for his third big feeding, so he did not receive it either.  He did tolerate his continuous feeding throughout the night.  He did not get sick until 8 this morning.  Carter's output has slowed down once again.  With all of this said we are NOT going home today and Carter has been scheduled for surgery on Monday.  The opening that Carter had dilated this past Wednesday is trying to close again.  Our surgeon is going to go in and open it more to where it will not keep trying to close.  Carter will continue to receive TPN, lipids and we will slowly tube feed him until the surgery.  There are many risks with the surgery.  Please continue to pray for my very strong little Carter.  Pray for our surgeon, that he will have guidance throughout the surgery and for Carter's bowels to heal so he can begin to prepare for his next surgery.

Carter's Nana and Papaw(my mom and dad) gave Carter one of his Christmas presents early...

Can you tell he LOVES it?!

Another surgery....

Today was another busy day for Carter.  Around 7 this morning Carter started vomiting again.  Carter had not really had any output for the past two days.  His tube feedings were stopped and a decision was made to take him back to surgery.  Our surgeon dilated the opening in Carter's intestine that occurred due to complications with his last surgery.  Once dilated Carter immediately stared having output.  Carter woke up perfectly from his surgery.  He is feeling great and you would never know that he had surgery today.  Carter has continued to have a small amount of output since the surgery.  We will pray that this continues and this solves Carter's feeding intolerance issues.  We will restart his tube feedings in the morning and see how he does.  Currently he is receiving TPN and lipids.  We will watch Carter closely throughout the night and the next few hours to make sure he does not get a fever.  We are very concerned about this! The last time he had a procedure performed on his intestines he got septic.  Please continue to pray for Carter.  Pray that will remain infection free, his intestine will continue to heal, and he will tolerate his feedings.  Thank y'all for the love and support that you have continued to show Carter and our family. Your prayers, words of encouragement, and support are truly a blessing to each one of us.

Update 11/8/11

Carter has really started to perk up the past few days.  His bright personality has peeked back out and honestly if he was not hooked up to all of his monitors you would not know there was anything wrong with him.  He does get tired easily, but he was septic on Friday.  All of your prayers are helping and he is doing really good. It is amazing how far he has come in just a few days. He has had his NG tube put in and his tube feedings have begun. His fevers have been down since Sunday and the infection seems to be on the downhill slide. We are waiting now to see how well his stomach tolerates the feedings through the NG tube. The doctors have a rate that they would like to see Carter tolerate before they are comfortable making their next move.  He has had his TPN turned down to half of what it was going and he is still getting his lipids.  Hopefully, if he tolerates his feedings through his feeding tube we can discontinue the lipids and TPN. Your prayers are working! Please continue to pray for healing, his stomach to tolerate his feedings and for him to become infection free!

Keep them coming!

Today has been another busy day for Carter.  This morning the other blood culture came back.  It was positive.  This means the infection is throughout Carter's bloodstream. His blood work showed that he did need to go ahead and get a blood transfusion.  He is currently receiving my blood and doing great with it.  God sure knew what he was doing when he gave me O negative blood.  It has been such a relief knowing Carter is receiving my blood.  Carter's white blood cells were actually low, which is very uncommon since he has an infection.  They were not too concerned with this and are just going to watch it for now.   His pre-albumin level was also lower.  The pre-albumin level shows his overall nutritional status.  Carter has finally stopped vomiting, although he still will not eating anything.  We are going to evaluate putting a feeding tube in his nose tomorrow.  The main concern for this, is to make sure his intestines can tolerate the feeding.  Carter's fever has been much better today.  The highest it has been was 102.  He seems to feel much better when it is lower.  Our surgeon is trying to come up with a plan for the next couple of weeks, which may include multiple surgeries.  It all depends on how well Carter's body tolerates the infection.  Although, Carter is extremely sick he has laughed and played most of the day.  Your prayers are working! Please continue to pray for Carter's body to fight the infection, for him to tolerate the blood transfusion and for our surgeon to have guidance to come up with the best overall plan for Carter.  Again, thank you for your prayers and keep them coming!!!

 Carter during his blood transfusion...being himself...SILLY!

What a night!

Whew! What a night! Carter spiked a fever of 104.7 and was unable to keep anything down to help with it.  He was finally able to get some relief with IV Zofran and was able to hold down some Motrin around 4 this morning.  His fever has been back and forth all day.  Our Doctor's have been very concerned about Carter and have run a ton of tests.  He had a chest x-ray and abdominal x-ray last night that came back normal.  He was started on antibiotics last night and had an allergic reaction to both of them.  One of which caused A LOT of facial swelling and his eyes to swell almost completely shut and the other caused a rash all over his body.  He was given IV Benadryl and it did help with both reactions.  He had blood cultures drawn and the one out of his PICC line came back positive.  This means he has an infection in his PICC line and possibly throughout his entire blood stream.  We are still waiting on one of the blood cultures to come back.  Our physician is very concerned about the possibility of stool in his abdomen, due to the fact that before all of this occurred last night he had multiple tests on his intestines.  We do not think he is currently leaking stool into his abdomen, which is a good thing.  We have chosen to continue to give him the IV antibiotics and pre-medicate him with Benadryl.  The antibiotics are just too important right now to fight off this infection, so we have to find a way to keep giving them.  Please pray that Carter's body will be able to fight off the fever, the vomiting will subside, and the infection will be treated effectively with the antibiotics. Please pray that Carter will fight off this infection, stay fever free, and have no signs of going in to shock.Thank you for all of your prayers through our little man's many struggles. We know that all things are possible with God and we would not have such a wonderful little boy without Him.

Another Day at Batson

Today has been another busy day, full of questions.  The test Carter had performed on his intestines yesterday did not work.  The test had to be performed again.  Thankfully, our surgeon was able to come to x-ray and perform the test himself. He still ran into a bit of trouble and Carter ended up having to have a tube placed down his nose into his stomach.  The test took almost all day.  Once we got back to our room and settled in Carter took a nap.  A little while after Carter woke up he spiked a 104 fever, his heart rate has been in the 200's and he has been breathing fast.  They have given him some tylenol and are trying to come up with a plan to treat him.  They need to make sure all of his intestines are still as intact as they were and that he does not have an infection.  Needless to say it looks like this hospital stay is not going to be as short as we thought.  Carter is still not eating and the 1-2 oz. I have gotten him to take have come back up within 30 minutes.  Please continue to pray for healing and that we can figure out where this fever is coming from so it can be treated correctly.

A busy day...

Today was a busy day for Carter.  He had two tests today.  One to look at his intestines to make sure everything was patent and clear.  The other test was his MRI with sedation.  Carter did great with both tests.  It will be tomorrow before we find out the results.  He is still receiving TPN and lipids through his PICC line and we are making decisions about tube feeding him.  Thank you for all of your prayers and continued prayers!

Only at a Children's hospital can you ride in a wagon to all of your tests! :)

Sleepy baby after his tests...

Back to Batson

 On Tuesday November 1,2011, Carter went for his weekly check-up and appointments. We were told that he needed to be admitted to the hospital for a possible blood transfusion, some IV medicines , an MRI with sedation, and to get his nutritional levels back in a normal range. We are blessed that Meagan has O negative blood and can be Carter's personal donor. If all goes well, we should be home at the beginning of next week. We appreciate all your prayers!