Not Our Forever Home...

We woke up yesterday morning to find room 22 empty.  By lunch the room was clean and ready for a new patient. Our hearts are so sad for the little boy in room 22’s family, but happy knowing he will spend the rest of his life without pain and suffering.  We will never see the family again, nor will we ever know their story.  All we can do is hope that they felt each and every prayer lifted for them by Carter’s Journey followers. The little boy's daddy told Brandon "I hope he passes peacefully. On his own." According to what very little we know, that is exactly what happened.Thankfully we know that this is not our forever home.  I can find happiness for the family knowing their little boy was greeted with open arms.

Carter’s intestines have continued to struggle. His vomiting has increased and the Doctor’s have decided to decrease all of Carter’s narcotics and increase his sedatives.  Narcotics slow your intestines, so hopefully by doing this they will start to speed up.  They also gave him a medication that helps reverse the side effects of Narcotics on your bowels.  It is a risky medication to receive, due to the high risk of bowel perforation.  Carter seemed to tolerate the medication well and has had increased output.  It has just not increased enough to be back to it’s normal amount.  We are praying with his new increased bowel regimen and lower dose of narcotics his bowels will start to speed up.  One of the many medications Carter has been receiving is Methadone.  They decreased it yesterday, and Carter started withdrawals again last night. This of course leads to itching, blinking, sweating and much more movement.  They increased the Dexmedetomidine three times and I think we are finally at a “happy place” with it.  This does keep us in the PICU longer, but at this point we just want Carter comfortable.  The Doctors and pain management team have come to the conclusion that we will be staying the majority of our stay in the PICU.  They are trying to make it as comfortable as possible.  We are completely content as long as Carter is comfortable and pain free.  We are praying the Dexmedetomidine will continue to keep Carter in his happy place and we can use the narcotics less frequently.  This will not only help his bowels right now, but will keep him from building more of a tolerance to the narcotics.  We then will have the narcotics to help him withdraw from the Dexmedetomidine when it is time for him to come out of traction and the fixators. 

We are trying experimental drugs and risky drugs with faith that they will help and have no long term side effects.  I have come to the conclusion that there is no need to worry, just have faith.  God has a plan.  The pain, the struggles and each tear that streams down Carter’s face is part of a bigger plan.  A bigger plan that was written long before he took his first breath.  A plan that was written before the little boy in room 22 took his first breath and his last here on earth.  Thankfully we know his first and eternal breath was pain free and he will never experience the pain of this world again. As always… To Him be the Glory!!!

But let me reveal to you a wonderful secret. We will not all die, but we will all be transformed! It will happen in a moment, in the blink of an eye, when the last trumpet is blown. For when the trumpet sounds, those who have died will be raised to live forever. And we who are living will also be transformed. For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies.

Then, when our dying bodies have been transformed into bodies that will never die, this Scripture will be fulfilled:
"Death is swallowed up in victory.” 1 Corinthians 15:51-54

The Little Boy in Room 22...

I am so ready to be able to write a good update!  We know God has a plan and his timing is perfect, so for now we will sit back and wait.  Last night, Carter's tummy became extremely distended.  This of course made him uncomfortable and required him to have more medication.  We are fortunate that I actually flush Carter's intestines for him to go to the bathroom.  Last night, I flushed them and got very little results.  This morning I flushed them and the same thing.  They decided to give Carter Miralax to see if that would help move things through and still no results.  I am praying that tonight when I flush his intestines, he will have A LOT of results!!! The pain medication and the fact that he has to stay still have slowed his already slow bowels way down. They think he is starting to develop an ileus (a bowel obstruction).  We are praying this is not the case!  After Carter vomited four times this morning, they decided to do an X-ray.  All they could tell was Carter's bowels looked inflamed.  He has so much hardware now (external fixators and plate holding his pelvis together) they could not tell what was what.  Anyone that has followed Carter's Journey knows the Journey we have taken with his bowels.  For anyone that doesn't know we spent 7 out of 12 months last year dealing with complete intestinal failure.  We brought Carter to Johns Hopkins last year, and they were unable to help him.  He was eventually airlifted to Cincinnati Children's Hospital where cutting edge technology saved his life.  So as you can imagine we are EXTREMELY worried about his intestines.  The good news is he is currently still tolerating his tube feeding through his J-tube.  We will just see what the next few hours bring.

We were up every 4 hours last night. Our poor baby… He was so uncomfortable.  The thought of holding him and rocking him went across my mind every time the nurse left the room.  The fact that he is tied to the bed, and the fact that we NEVER want to go through this again stopped me.  Everyday I tell myself I am one day closer to holding him.  They moved Carter to a new room in the PICU yesterday.  We moved from room 30 to room 35.  Everyone is starting to come to the reality that we are going to be in the PICU for a while, so they put us in a much quieter and larger room.  Carter has not been a fan of light or any stimulation since we started all of the medications to keep him pain free and calm.  You can only imagine how he liked being rolled in his bed down the bright hallway.  Everyone laughed because once he was able to hold my hand, he used his other arm to cover his eyes.  He was not too happy about the move, but Brandon and I are.  Our new room is much more quiet, and it is big enough to move around in.  

I know this is getting a little long, but I have a story I have to share.  Brandon and I pass a room in the PICU everyday.  You have to remember all of the rooms are private, but have glass doors.  If the curtains are not pulled you can see directly into all of the rooms.  When we first arrived, there was a little boy’s room full of visitors.  You could see the pain in all of their eyes.  The little boy was not on a ventilator, yet he would look around the room, but you could tell he was extremely sick.  Days passed and we continued to pass the room.  Each day the little boy grew more ill.  He was placed on a ventilator, and now the visitors have seemed to slow down.  There has not been a day we have passed that his parents have not been right at his bedside.  Most days they are crying holding onto his hands. We have seen them in the hallways crying. Both parents eyes are almost swollen shut from crying so much.  Brandon and I have both felt drawn to this family.  A few days ago Brandon passed and the Dad was hardly able to hold himself up in the hallway.  Brandon said “You could see the hurt and pain in his eyes. He was sobbing and completely heartbroken.”  Brandon walked up to him, hugged him and told him that we were unsure of what they were going through, but we were praying for them.  The man told Brandon “thank you” and Brandon continued walking to our room.  A few days passed and the man saw Brandon in the hallway.  He told Brandon that it meant so much to him to know that they were being prayed for.  Brandon told him if there was anything we could do to just let us know.  Well two days ago Brandon passed the Dad in the hallway talking with a Doctor.  Brandon knew what the Doctor was telling him was not good.  The Dad later found Brandon and told him that their little boy, who is Carter’s age, would soon be going to heaven.  Our hearts have been so heavy for this family.  We have no idea what is going on with the little boy.  He could have been in an accident, or he could be in a situation like us.  He could be coming here to have a life-saving operation.  There are so many families just like us here at Johns Hopkins. Families that have traveled across the United States, or even the world, to give their child the best shot at life. The one thing we do know is, that this family needs prayer.  So, for the little boy in room 22 of the PICU today we are asking all of our Carter’s Journey followers to pray.  Pray his family feels Gods hands wrapped around them as they say their last earthly goodbye to their precious 2 ½ year old.  We are thankful for God’s promise that this is not our forever home!!

Our experiences have taught us that in one moment, everything can change.  We are thankful that our Savior’s arms are open wide to hold us. Thank you all so much for all of your love for our family.  As always… To Him be the Glory!!!

The pictures here are of the outside of the Dome at Johns Hopkins.

Patience...

The past few days have been full of ups and downs.  We had to stop the wean of the strong medication that Carter is on.  The withdrawals, and the fact that Carter is not suppose, to move were just too much for his little body right now.  We have actually had to increase the strong medication twice and give him a bolus of it.  He seems to be much more comfortable now, but still not completely asleep.  The medication is called Dexmedetomidine.  It is a new and very expensive experimental drug.  They are not sure of long term and short term side effects, and it is not ideal for Carter to have to stay on it for an extended period of time. The next step would be to put Carter back on the ventilator and give him sedation medications that way.  This is not ideal because after Carter's first surgery he aspirated, and it caused aspiration pneumonia.  He has still not had a clear chest x-ray because he has to stay still and flat on his back.  He cannot move to help clear up the pneumonia.  If we put him on a ventilator this could cause the pneumonia to get worse and could lead to a lot of trouble.  We know the Dexmedetomidine is not ideal, but it is our best option right now.  Carter is on a TON of other medications, but they do not seem to really help anymore.  He has started to build a tolerance to most of them.  Our main concern is that Carter still has at least another month of having to be in traction and flat on his back.  If we decrease the Dexmedetomidine and continue to give him the other medications to try to help keep him sedated and comfortable, he will continue to build a tolerance to them.  Once it is time to completely come off of the Dexmedetomidine, he will not have any medications that are effective to help him.  So, the goal right now is to keep the Dexmedetomidine going at a rate that keeps him comfortable and sedated.  Hopefully we will not have to use as many other medications.  We will then have them available when it is time to wean the Dexmedetomidine again.  That is the plan right now.  It is likely to change in a few hours.

We are praying at this point that Carter can get comfortable and to stay still.   The main issue is his age and how strong he is.  Trying to explain to a 2 year old active little boy that he has to stay completely still is pointless.  Every time he wakes up he points at the door and says "up."  He is over laying in the bed and he is ready to go!  He is strong enough to kick anything we put on his legs off, and he can actually pick up the weights on his traction.  He finds it funny to pick up the weights and make them knock against the bed.  Can you tell the medications that are suppose to keep him in a coma state are not working?!  His entire life we have pushed so hard for him to walk and go, but now he just can not understand why he can not get up and go.

The biggest thing Brandon and I are struggling with is patience.  It is so hard to watch Carter go through all of this.  His little life has dramatically changed.  He went from being up playing, running and jumping to being completely bed bound and unable to move.  We have been down so many long roads with Carter and we have always found a bright light at the end.  We know we will find that light again, but it is hard to see at times.  We have gotten through the past month by your sweet prayers, messages and love for our family.  I read each and every message and we are honestly grateful.  God is always with us and we know we will get through this just as we have everything else.  As always…To Him be the Glory!!!

I waited patiently for the Lord; he turned to me and heard my cry. Psalm 40:1

One of our sweet nurses knew that we have not had a home cooked meal in a long time.  She went out of her way and cooked us a meal!!! It was SO sweet of her and it was very YUMMY!!!

I work part time and I always get asked how in the world I continue to work and take care of Carter? Well here are a few pictures of my co-workers.  They are so supportive and love Carter.  They are the reason I am able to continue to work and take care of Carter.  We love The Newborn Center at The University of Mississippi Medical Center!  Thank you all SO much!!! No matter what hospital Carter receives treatment at Blair E. Batson will always be our home!!! 

4/23/2013

There haven't been many changes since the last post. We are still in the PICU, and we may be for quite a while. The only real change that has been made is that the doctors are trying to wean Carter off the strong sedation/pain medication again. The reason they want to do this is because it is a medicine that can only be given in the PICU and the Urology team would like to get him to the Urology floor.  The nurses on the Urology floor never have more than 2 patients and they are precisely trained to take care of children with Carter's condition. Carter is still on a LOT of pain and sedation medications. He will continue to be throughout our entire stay. This is one of the most painful procedures known, so this won't be a quick and easy recovery. 

Carter has had a good day today. In weaning off of the very strong medication, they are going up on doses and frequency of almost every other medications he is on. We are fine with this as long as we are making progress. It has been made clear that we do not want Carter to move. Jeopardizing this procedure just for the sake of getting to a regular floor, in everyone's opinion, is not wise. This procedure needs to succeed and last forever for Carter to have a healthy life. If the current regimen of medications are not successful in keeping Carter still, then we will have to stay on the medication that requires us to be in the PICU. We are fine with that, too. Time is time to us. We have to be here until he is healed, no matter what floor we are on.

We want to say thank you again to everyone that is praying for Carter, our family, and the doctors/nurses. Also, thank you to everyone that has sent us a card, a care package, and gift. We are so blessed to have such wonderful friends and family. Please say a prayer for all the other families in this hospital. There are plenty of people out there that could use the peace we have come to know from our Loving Father. As always... TO HIM BE THE GLORY!

Ready for this to be a Memory...

Today has been another hard day for Carter.  He has started withdrawing from the strong medication they put him on last week.  They are giving him medications to help with the withdrawal process, but we have not found the right doses yet.  Last night got so rough that they stopped the weaning process of the medication.  Carter excessively started rubbing his face, gagging and wiggling.  He is still not suppose to move right now.  He was up most of the night.  We are praying we can start weaning the strong medication again tonight or in the morning.  We know the longer he is on the medication the harder it will be for him to get off of it.  Carter is still receiving a ton of sedation and pain medications and now medications to help with the withdrawal process. He will eventually have to withdraw from the medications he is now receiving, but they will not be as bad as what he is going through right now. The hardest part is he is not suppose to move.  Try telling a 2 1/2 year old who just had a HUGE surgery and is withdrawing that he has to continue to lay still and flat on his back.  It's IMPOSSIBLE!

It is so hard to watch Carter go through all of this right now.  I just want to pick him up and hold him.  I am positive he would not need half of the medication he is receiving right now if I could hold him.  I sleep in a reclining chair beside Carter's bed and usually hold his hand or place my hand over his chest all night, so that he is comfortable enough to sleep.  Around 3 am last night I passed out.  Carter's nurse came in around 3:30 and accidentally woke Carter up trying to get his vital signs.  She said he started to get scared and then looked over at me.  She said he just stared at me for about 5 minutes.  He then scooted with all of his might to get as close to me as possible.  It brought tears to her eyes and she had to wake me up to tell me.  It's moments like that, that keep us going.  Carter is not acting like himself right now, but we know he is still our sweet little boy.

We can still see the light at this very long tunnel and know there is still HOPE.  God has a bigger plan than I could ever imagine.  This is by far the hardest part of Carter's Journey this far.  Today marks 4 weeks of being in Baltimore and we are ready to head south!!! We are ready for all of this to be just a memory! Please continue to pray for Carter.  Pray we will begin the weaning process of the strong medication again and for Carter's little body to tolerate it.  We are so thankful for all of your prayers.  We are so happy we are loved and Carter is not being forgotten.  As always...To Him be the Glory!!!

Baby Steps...Update 4/18/13

Sorry for the lack of updates.  We have been busy trying to take care of Carter and take care of ourselves.  We are still in the PICU.  Carter is still on the the strong medication that will require him to stay in the PICU until he is off of it.  The plan is to try and start weaning it this afternoon.  It will take days to wean him off of it.  They will provide him with other medications to help with the withdrawal process and we will increase all of his other medications to help with his sedation/pain issues.  The medication has worked so well that we are nervous for them to take him off of it.  We know it eventually has to be done, but it has been so nice to see him actually resting.  The goal is for him to be able to be weaned off of it and use other medications that will keep him sedated and still allow him to be transferred to the Urology floor.  The PICU Doctor's along with Carter's Urologist all agree that Carter's care will be taken better care of on the Urology floor.  They are extremely experienced with Carter's condition and know all kinds of tricks to manage his care.  They also agree that Carter has to stay completely still for the surgery to be a success and will do whatever it takes to keep him still. 

From a surgery aspect Carter is doing great.  We are slowly making baby steps in the right direction.  His incisions are starting to heal.  We have started feeding him through his J-tube and he is already tolerating his goal feeds.  This has been a HUGE relief!  Our main concern with the surgery was Carter's intestinal failure issues.  They have done no further testing for Carter's blood clot.  There is no treatment they can provide Carter right now for it, so it is pointless to put him through any tests.  Carter's last chest x-ray showed that the pneumonia has improved.  He is still on oxygen and probably will be until we are able to decrease some of his pain and sedation medications.  Overall Carter is doing really well.  We will see what the next 24 hours bring with decreasing the strong sedative.  Please continue to pray for him.  Your prayers and being heard and felt.   Carter still has a long road ahead of him, but we know God's got this.  As always... To Him be the Glory!

Carter loving on his friend, Garon.  Isn't this the sweetest picture?

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:37-39

Off the Bed... 4/15/13

Last night was an extremely rough night for Carter.  The worst since the first night after surgery.  He was up at least every 2 hours after surgery.  They gave him a ton of medication and nothing seemed to help.  This morning the pain team and our Urologist met and decided to start him on a stronger medication.  The medication he is now on is the one we hoped he would not have to start because of the intense withdrawal process he will have to go through to come off of it.  It has seemed to help and at this point we do not want to see him in pain anymore and are willing to do whatever.  This medication will require him to stay in PICU a little longer, but we are ok with that too.  We are praying for a restful night for all of us.  

Carter's sheets were WAY past due to be changed, but he has been to unstable.  With the new medication on board Carter seemed calm enough to change them.  Brandon got to hold Carter off the bed while I changed them.  I am not sure who enjoyed it more!  I can not wait for the day we can hold him in our arms, but we will take holding him off of the bed like this for now.  I think this pictures says more than any words ever could.  Carter's body is so frail, but Gods hands are so strong.  As always... To Him be the Glory!!!

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world. John 16:33

4/14/2013

Today has been about the same although I think the pain and sedation medications are starting to build up and provide Carter with more rest.  He woke this morning around 7:30 this morning, and we could not get him to calm down.  After receiving extra doses of all of his medications, the pain management team decided to add more medications and go up on the dose of medication he is receiving. He eventually calmed down and has only been awake twice today.  One time was after he had to get cleaned up and have his pin care done.  We are required to wipe Carter down with Chlorahexadine wipes every night.  Carter is not happy about it, but they have proven research that shows it decreases the risk for infection.  His pin care and wipe down are the only times we really disturb Carter.  He is on minimal stimulation protocol.  Which means we have FINALLY had the opportunity to dim the lights in his room, the glass door stays shut, and everything is completely quiet.  It has made a huge difference in him staying calm and getting less aggitated.  We are praying the increase in medication continues to be effective.  I honestly can not say thank you enough for all of your out pouring of love for our family.  We are extremely grateful!  As always...To Him be the Glory!

I took a walk inside the hospital today and took a few pictures.  Here is the famous Jesus statue inside the Dome at Johns Hopkins.  It is absolutely beautiful! Enjoy!

3 Weeks 4/13/13

Today marks 3 weeks since we arrived in Baltimore.  It has been a busy 3 weeks.  I would be lying if I did not say we are ready to go home.  We have been ready to go home since the day we arrived.  We miss our home, our dogs, and especially our little boy that was able to play and run all over the place.  We know he will be back to running, playing, and laughing. We know it is many many weeks away.  Carter had another rough day.  He had to be started on more sedatives. The first dose of the new sedative was extremely effective until he woke up 3 hours before the next dose.  They gave him a cocktail of all of the other sedatives and pain medications he has been recieving and...nothing.  They decided to give him his second dose early and it still took an hour and 15 minutes for him to calm down.  The doses they are giving him should put him into a coma state, but they are not working.  There is one more medication after the current regimen he is on that we may have to try.  The withdrawal process from this medication is extreme, and it is very expensive. We are praying he does not require it.  Tonight will tell us what we need to do.  We are praying he will stay asleep, not moving and pain free.  Carter is having more trouble with pain than most of the children that have this surgery because he is unable to have an epidural due to his spinal defects.  Most children have an epidural and are unable to move their legs, which leads to overall better pain managment.

This journey is extremely hard right now.  We know there will be better days ahead.  We know Carter is right where he needs to be, but living in the PICU at Johns Hopkins is not easy.  We strive knowing there is a bigger plan. There is a purpose for all of the pain and suffering that Carter is going through.  God already knew all of this before Carter was even born.  We are holding on with broken hearts. Holding on to each word.  What an amazing Testimony Carter will have.  What an amazing life I have been able to witness.  I am 3 weeks closer to having my arms full again.  Thank you for each and every prayer.  God hears them and we feel them. Please keep them coming!  As always...To Him be the Glory!

I can do all things through Christ who strengthens me. Phil 4:13